living with AFP

Hanging in there - day 2022

2011-04-22T21:49:00.000-05:00

Sometimes it just seems like the same drudgery day after day after day.

I still can't sleep in our bed more than an hour or two. I stop breathing and that's just not a good thing. I doubt I've slept in bed more than three times in the last year. I know if I lost some weight I'd be better off, but the stress here has been so incredibly high I've been eating to compensate, which is a learned behavior and coping mechanism, so I've not managed to lose anything lately.

I stopped riding my exercise bike for a while when I was feeling really non-motivated but I started up again so I'm hoping to get back into the groove with that. It makes me feel better and I don't get that couch potato sensation as much as when I'm just hanging out watching TV and web-surfing.

I'm glad it's coming up on spring. This was a bad winter for depression symptoms. I don't sleep in bed but when I sit down for more than a few minutes I doze off, whether here in my recliner or on the couch or even, this year for the first time, at the sewing machine. That was kinda weird.

I am so glad God is in my life. He is my strength, my all-sufficiency, my All in All, my healer and deliverer. I will look to Him and not to the physical manifestations. I will focus on His grace and mercy and not on my own human shortcomings.

I would be lost without Him. I am grateful for the Cross and redemption and the resurrection power of Jesus Christ. Without the Blood, I would have no hope. I hope you can find this too.

man, it's been a while

2010-12-11T03:27:00.000-06:00

I forget to write in here and my other blog. My brain isn't what it used to be. I forget lots of things. I make lists and lose them. Now that's scary.

Okay, update....forget weaning off the Methadone. The Nurse Practitioner says as long as I'm only taking 0.25 of the Xanax they can leave me on 40mg of Methadone. Hallelujah! Though lately it's certainly not pulling its weight like before, I'm still very thankful for the relief I do get. I fully realize that the docs don't have to give me such powerful drugs even though I am in life-altering pain. I'm grateful I found a pain doc who isn't opposed to the use of narcotics for pain management when it's necessary.

I've been feeling so icky lately I kinda slacked off on the exercise. Now I have this wonderful cold that's moving down into my chest and if I got on my bike I'd be hacking my lungs half out. I think I'll make myself get on there tomorrow though and do half an hour anyhow, even if I do it on the lowest setting and don't last the hour I usually do. Anything is better than nothing, eh?

I know this is discombobulated. I just don't have the ability to focus very much right now. My pain level is going up and I'm gonna have to go pop a Vicodin again before it gets out of control.

Thanks to everyone who reads and leaves supportive notes. I pray you have a nice holiday season.(did that sound PC enough?)

Merry Christmas and God bless you all. I appreciate you. You're in my prayers.

Day 1791 - Oh, help.

2010-08-27T23:57:00.004-05:00

When it rains, it pours.

So the pain doc wants me to wean off the Methadone eventually. I'm not sure what he wants me to take, since there isn't much else I can take in a realistic sense; anyhow, I've been half-heartedly looking for another pain management group in the hopes they will help me get control of the pain without insisting I increase my stress level, and thereby my pain level, by suggesting from the get-go that I consider how I want to wean off the drugs that enable me to function on a daily basis as at least a minimally contributing member of society.

Now, my mom has decided I am: 1) Addicted to my prescription meds. This is, in her eyes, happening in spite of the fact that I am monitored by my pain med doc, my psychiatrist, and a neurologist in addition to my primary doc. It's amazing that none of these physicians, who see me a heck of a lot more often than she does, haven't noticed this so-called addiction....2) Lazy and need to go back to work in addition to getting out and walking like she does to get some exercise. Never mind that I have a bad knee and have been told that walking or other weight-bearing exercises, for the time being, will only hasten the eventual necessity of a knee replacement. Add to this that there are very, very few people I know of who want a nurse on Methadone to control pain, one who nods off from the narcotic dose required to keep the pain manageable, to take care of themselves or their family members...3) Hubby and I are, in her words, perverted and sick. My sister, whose own life is a mess on good days, told mom hubby and I are into S&M which, though it would be none of their business if it were true, is a blatant lie. I don't have a masochistic bone in my body. I don't like pain. It hurts. However, she believed said sister, and proceeded to write me a letter telling me I'm fat, lazy, addicted, perverted and sick. Nice, loving mother, huh? Anybody want her?

About the knee...several weeks back I did something to it. I can't remember what, or when, but it probably had to do with chickens, since that is where I get most of my activity. Anyhow, I finally got off my butt and called the orthopedist last week. I saw him Tuesday. They did the perfunctory X-rays. He saw them, and then we all saw them. The left knee is on its way out. It's not going today, or tomorrow, but it's not going to last forever. Most of it is probably a combination of working on my feet for 15 years as a nurse and being obese. I will accept that. I'm not gonna hide it. Interestingly enough I had planned on starting Weight Watchers again with Abby this week; the orthopedist was happy to hear that. In addition, I had been considering a recumbent bike or one of those foot pedaling things, largely because between my environmental allergies and my pain, I don't do well with outside exercise. I either hurt, break out, or both. Indoor, non-weight-bearing exercise seems the best way to go.

He numbed my knee with the funny spray freezy stuff and an OUCH of Lidocaine and then drained about 50cc of fluid off said knee and injected some cortisone to help with the inflammation, all after managing to convince me that it wasn't going to hurt as much as cortisone injections into soft tissue do. I have a friend who has those kinds of injections and she locks up and is in horrid pain for a few days after her shots. I didn't want anything to do with that. Oh and by the way - he did a great job. He is a good shot and didn't lie to me, which I really appreciate. He says we can do those until they don't work, and then we can inject fluid of a lubricant style into the capsule to help movement after that, and then, in the future, we'll look at surgical management. This is my kind of doctor.

I talked it over with hubby and ordered a Schwinn recumbent bike this week. Once it's here, I'll be building a close relationship with it. It will help me lose weight, help my activity tolerance, and it will lengthen the amount of time I can wait before needing to undergo the knife again. I mean, it's only been 7 weeks since I had my right hand carpal tunnel surgery done; the left wrist and elbow (it was more involved than the right side) was done in November of last year. I'm starting to feel like a guinea pig. At least these scars aren't from self-mutilation, eh?

So, I have a sister or two that are upset that I hung up on them - my younger when she tried to tell me that I need to let my mom do what she wants to in my house, to which I said, "It's my house, and she plays by my rules or doesn't play. I'm not her patsy any more and she's not going to intimidate me or make me feel guilty any more." (Okay, so we're still working on that) My older sister - well, I hung up on her after she lied to me when I asked her if she knew what was up with Mom and then called me back several hours later to tell me she had told Mom hubby and I are supposedly into S&M. Now this sister has been married 3 times, she cheated on her first two husbands and then married someone who verbally abuses her and has cheated on her in addition to getting fired from a fantastic job at Disney because the person he was cheating with was his boss' wife...and she has a right to judge me?

NOT.

Okay. So there we are. Bum left knee, maybe bum right knee as well - we just haven't looked at that one yet. Pain doc I'm not thrilled with because he seems to be hell-bound to get me off my pain medication and onto, what, short acting narcotics? He wants me to wean off the Methadone and, according to the research, there is "a chance" once I go back on it I won't need as much, if I need any at all. Okay. So what do I take in the meantime....or do I just get nothing, and go back to being in so much pain it's almost not worth living? I get the feeling he thinks I don't need this medication or he's getting pressure from the DEA, which wouldn't be a surprise since they seem to delight in tormenting physicians who actually act in their patient's behalf and give them adequate medication for chronic pain...and there is a big part of the problem. Many people in the medical community pooh-pooh those with chronic pain, even claiming that we don't need the meds that keep us going day to day. Just because you can't see or put your finger on the cause of my pain doesn't mean it isn't there. It just means it's invisible. It's still pain. It still hurts. It still interferes with my life. I still get judged, even by my own family members. And, I deal daily with the knowledge that I cannot work outside the home, which means even those of us with degrees and training end up in pain. Even those who aren't addicts or uneducated or what have you end up in pain, the kind of pain that leaves you begging God to take you home. Yeah, it hurts like hell. And to have people negate or minimize that pain hurts like hell, too, because it invalidates what we feel and experience, and what many of us struggled to hide because we knew what we were going to face when we revealed that we were taking narcotics to control our pain. I'm not the only one whose family members have decided that there is an addiction problem when the meds are being taken for a chronic pain issue. People tend to disbelieve what they can't see. If I was missing a leg, or two, would it make my pain medication prescription more justified? Why? Is the pain my nerves shoot across my face and into my eye socket like an ice pick heading for my brain any less valid than pain from an amputation?

Sorry for the rambling. I'm a bit muddled these days.

not so bad....

2010-07-03T17:39:00.000-05:00

I get horribly introspective now and then, and my last post was reflective of that. It's rough, but I managed to pull myself up and remind myself how blessed I really am. Once in a while, though, it's good to be brutally honest even if it hurts. It's far better than hiding it way back inside somewhere and letting it fester. It is part of my mental health status that this happens, and I have learned that denying it doesn't change its existence. Many people are taken aback or shocked when they see that I can get that way. I live with it; it doesn't surprise me any more.

I was scheduled for a sleep study last night. Apparently they use some nasty scented dryer sheets on the bed linens and after about half an hour in the room, waiting on the nurse to come and hook me up to the plethora of wires that are required for such a techno-savvy test, I was about to wilt into a puddle of upchuck. I turned everything off and left the room. As I made my way down the hallway she came up and asked if I was okay. I explained what was going on and we agreed my only alternative was to leave. We had already been questioning the wisdom of sticking so many patches to someone allergic to adhesive and latex and everything else I don't tolerate. I guess it was decided for us, no?

I've managed to stay eating very well since I got sick last weekend. I believe I've lost an inch off my waist already. I feel looser in my clothes, if that makes sense. It's a nice feeling not to have the fabrics snug on your body, but instead to have to reach down and tug up a skirt or a pair of pettipants once in a while. I'm certainly not going to complain. I can always make more if I need to.

I'm sticking with several small meals, very little bread or other carbs from processed grain, and more protein and fresh stuff. I've had cantaloupe, strawberries, yogurt, mesquite turkey breast, cheese, some whole grain crackers, nuts (mostly raw ones, thank you Target), and jello. Last night we had some of the Breyer's low carb ice cream bars with almond pieces in the chocolate.....oh, they sure don't taste low carb, but they are pretty much the only chocolate I can eat without paying for it later. I have cut my diet soda intake in half by making sure that every other thing I drink is either sugar free koolaid, gatorade if I'm feeling like I need to replace electrolytes, or the like.

God is good. He is with me and He holds me up when I falter, patiently loving me back to sensibility. And because of that, I am blessed.

Day 1729 - 3am and still awake

2010-06-27T04:00:00.002-05:00

God, I need some peace. Please.

I'm stressing out here. The thought of losing my pain meds is making me hurt more. The necessity of decreasing the anxiety med certainly isn't helping. If I weren't so sensitive to medications, I could just jump into another category of meds or something and maybe that would help. However, I am severely limited, and therein lies the problem.

I need, for relief of my pain and anxiety, a combination of medications that has the potential of being a not-so-healthy combination. In fact, benzodiazepines and Methadone have the potential for making the partaker, well, dead. Never mind that I have been taking this particular set of meds for 4 years without obvious consequence. My pain doc will no longer allow me to combine them in the dosage that works for me when it comes to both pain relief and the ability to sleep, as you can tell by my still being awake at 3am.

Okay. For some reason the "enter" key no longer precipitates a line break. Hm. I wonder if this is a new tweak that Blogger has added to assist me in pulling my hair out.

Anyhow, so I stopped the nighttime dose of Xanax that was helping me enter dreamland without a long and arduous fight, and, as anticipated, sleep is now way overdue and longed for. It's not just the lack of sleep that the med affects...it's also the anxiety I've lived with since who knows when and no longer have the ability to hide at the level I could attain before.

I know in my heart that God is the Author of peace and that He is my sufficiency; my All in All; that He is my hiding place, my refuge in times of trouble. The struggle lies in the part of me that is still so very human - the part of my being that used to dread bedtime because of the monster that crept into my bedroom and put his hands where no male caretaker should ever touch a child...and yes, I've heard and been taught and read and had preached to me that God can take those memories away, but in His great wisdom He has chosen to allow me to retain them, partly in order to garner compassion and understanding and the ability to identify with the abused, the molested....and I struggle with this every day to one degree or another. The tweaking of the meds and the pain doc's desire to wean me off my pain meds triggers my abandonment issues. It also strikes at the fear of mismanaged power that I can hold at bay most of the time; it is not so easy when the issue is my well-being and ability to function as a rational member of the human race.

I am struggling, also, with a deep sense of melancholy and loss....the loss of opportunity that I perpetuated when I decided to marry an abusive man and create three lives that, along with my own, pay for that decision every day. I love my children deeply, yet it tears at my heart to watch them struggle, knowing that part of that struggle was my choice for their father. I realize that the concept of free choice is an integral part of becoming part of the family of God, yet, hindsight being 20/20, I also see from where I am seated that the result of my maternal grandparents' abuse of my mother led, consequentially, to their struggle as well.

What a conundrum. What a revelation. What a discovery of the absolute necessity of the saving grace of a loving and forgiving God, the Father that so many of us never had. Without Him I would have no hope, no reason to go on. I could so easily sink into the melancholy and let it swallow me alive, becoming lost in the hopelessness the evil one holds out temptingly if, for one moment, I turn my eyes away from my God, my Savior, my Hope and Salvation....I am achingly aware of the despair that drives some to suicide. I am, however, also acutely alert to the abhorrence that would be to the One Who, through His Son, closed the gap between a race of hopelessly lost mankind and His eternal rest.

Ah, my philosophizing brings out my vocabulary. There really isn't much need for it here with the cats and chickens, and my sweet hubby hasn't the education I have, so we speak much more simply with each other. Not that he isn't bright or gifted....it's just not in the same areas I am. Isn't it funny how God does that, pairing us with those who remind us that ours is not the only perspective of and on the planet? He is indeed a Great God, full of wisdom and patience, lovingly encouraging us to try again and again when we stumble and fall on our backsides, forgetting in our great rush to go somewhere, anywhere, that we must walk before we can run.......

In spite of the pain, the insomnia, the anxiety, the depression, the anger, the sadness, the hesitation....God is God and He will do what is best for me, in spite of my best efforts to mess it all up.

And for that, I am grateful. Without the pain, or the other associated issues, what, then, would be my need for a Great God? If I did have it all under control, why would I require the Master of All to intervene in my life? What would be the reason for His healing touch if none were ill, or feeble? Why would He demonstrate His redemptive powers if not for those wallowing in the filth of sin?

I will, therefore, trust Him. He knows what is best for me, and He will lead me through this just like He has led me through all the other trials in my life. It may not be easy, or fun, but I will not have to walk it alone, and I will reach the other side as long as I keep my eyes on Him and not the chaos around me...and here is my struggle....and my hope.

Med changes and side effects

2010-06-07T20:06:00.000-05:00

On the 23rd of last month, the pain doc increased my pain meds from 30mg of Methadone a day to 40mg. He was concerned that my increased Vicodin intake might create a tolerance, thereby limiting its effectiveness for breakthrough pain.

I went up to 40mg a day for about a week, and noticed substantial swelling in my feet in addition to a lot of fatigue. I also couldn't drive or, on some days, even focus.

So, a few days ago, I decreased the dose to 35mg a day, divided over 3 doses. I take 10mg at midnight, 15 at 8am, and 10mg at 4pm. The pain has gone up some but the swelling hasn't done much at all. I'm going to give it a few days to see if the edema will lessen; if not, I suppose I'll have to go see my primary doc and maybe she'll give me a script for a diuretic to pull the extra fluid out of my tissues. Of course, I'm not sure if it will help or not...but it is definitely worthwhile thinking it might.

For a couple days there, I had pain at a 4 again. It was nice. I'm just not sure I'm prepared to deal with the swelling that goes with it, and it's not just in my feet. My hands are swollen. My body itself is edematous, in fact. Along with this there is the increasingly aggravated symptoms of carpal tunnel syndrome in my right hand. I do believe I'll be making an appointment with my hand surgeon post haste to have this tingling and general mess taken care of.

I recently had my disability review and they approved me for another 3 years. The first review was supposed to be after one year. My initial application was approved in 2007, so it was only 2 years late. For sure, getting reviewed and re-approved is easier than getting through the initial approval process. I thought that was never going to end. Fortunately, my tenacity comes in handy when needed.

Trying to lessen the pain

2010-05-31T23:32:00.000-05:00

Well, when I went to see the pain doc last week he increased my Methadone to 40mg a day instead of 30mg. Now for me, this is a significant increase. I usually only increase by 5mg at a time. I asked him if I could do 35 instead but he really wanted me to do 40; I started the full 40mg dose on Thursday and have noticed a significant leveling off in the pain. It's not a lot less, but it's better than it was when I had to take the Vicodin almost every day. The pain doc was concerned, and rightfully so, about me building a tolerance to Vicodin since it's my primary breakthrough medication, so he wanted me to be taking enough Methadone that I wouldn't have to take breakthrough meds unless things get really bad.

I've been sleeping more, though still erratically. Oh well - I guess we can't have everything, can we? It's still frustrating as heck to be asleep off and on all the time instead of going to bed like normal people do and sleeping at night/being awake in the daytime. I doze off all the time, which is very frustrating. I should be used to it but I'm not. Maybe now that my pain is better controlled this will help.

I haven't driven since Tuesday. I don't drive for about 2 weeks after a med change. This helps me have time to adjust to the med increase and the accompanying brain fuzziness before I put myself behind the wheel of a car.

I see my psychiatrist and neurologist this coming week. I'm supposed to find out about the sleep study. I also want to talk to my shrink about my increased anxiety. I've been stress eating and I've gained more weight than I am even close to comfortable about. I've been picking more, bleeding more, and fretting more. I've rarely stopped humming for almost a month now. I can't figure that one out. I just hum and hum. Weird......

Hmmmmmmmmmmmmmmmm.....

Ouch.

2010-05-14T02:31:00.000-05:00

For probably a week now I've been eating Vicodin/Lortab in addition to my Methadone. There is a nasty pressure behind my eyes and it will not go away. At least the Lortab helps the pain lessen enough to allow me to sleep for a couple hours.

They want to do a sleep study. I'm apprehensive. First off, I'm allergic to adhesive, so if they have to put patches on me, I'm gonna break out. Secondly, I'm a mouth breather. This means the nose things won't work. Next, I'm allergic to latex, so they will have to make provisions for a latex-free testing environment. Then, there's the claustrophobia condition to consider.
If you add this to the fact that I have a constant and unremitting pain to the right side of my face, and then a condition that causes chronic pain to the back area of my head called "occipital neuralgia," there is a pretty good indication that there is no way in Hades or anywhere else that they are going to be able to get one of those tight masks on my face and the back of my head.

Now, if I do end up with a diagnosis of sleep apnea, it will help with my disability continuation; be that as it may, I just don't know how it's going to work out.

Stress-wise, things have been incredible lately. Becky's in-laws moved back into the second trailer on the property across from us. This means more smell, more noise, & more aggravation. These people have poor personal hygiene, are lacking in manners, and have some of the most warped sense of their idea of Christianity I have ever experienced. When Becky ran away they let her stay there, in the same bedroom and bed as Matt, yet insisted to me over and over that there was no way those two were having sex in the bedroom. Mom was adamant that Matt knew the house rules and wouldn't break them. Man, either she was in serious denial or a liar, or both. They also told us that taking Becky into their house instead of telling her to come home and deal with her problems was, "The right thing to do." She lied and told them I was abusive and that I made her move all the furniture when she had to vacuum. At the time, after the tornado ripped the roof off over our heads, all we had in the living room was a rocking chair and a coffee table. They told her I was cruel for making her do chores - their kids didn't have chores, for making her go to school - their kids had been taken out of school for missing too much, and they were being haphazardly home schooled; and, after she asked to get her license so she could get a part time job (something I didn't do for her siblings because Tampa has public transportation and we were in walking distance of more than enough places for a teen to get jobs), I told her she had to get a job. She wanted to come home from school and go to Matt's. I made sure her chores and homework were done first. That's what my Mom did, and what I did for her siblings, and it's what I expected from her. Matt's mom didn't make the kids do anything, and that included getting out of bed to go to school. No chores. No responsibilities.

So Becky got mad because I was concerned about the grandkids living in a potentially dangerous environment and called DFS. This led to her telling me I would never see my grandchildren again. Ironically enough this happened only a year and a half after she finally started talking to us after a 4 1/2 year period of no communication once she left the house here.

This is harder on me than just about any of the other stressors in my life. Living so close, hearing the kids laugh and play, and even seeing them on occasion, yet not being allowed to talk to them or contact them, is about ripping my heart out. I just don't get it.

It's one of the reasons we're looking to move. One of the biggest reasons.
Before we can move, there are a few conditions that need to be met....

I need a pain doctor. A pain doctor who will treat me like a real honest-to-God patient with real pain.
We need land with enough room for my chickens, and a garden, and perhaps maybe even a pond. At least a couple acres. It needs to be more level than where we are now. Hubby's diabetic neuropathy is getting worse and we need property that will be a lot easier for him to care for. If the land is flat enough, I could possibly even do the mowing on the rider mower.
We need to sell this place for enough to be able to afford to have either no mortgage at all on our new place, which will probably be smaller, or at least a small mortgage of less than $20K. I don't want a huge payment. We're not rich. I'd like him to be able to retire and if we can get a small place on a piece of land that is less than $70K we can live on my disability, his retirement and his Social Security and he won't have to work. He will, however, need to find something to do or I'll go bats. He would, too. He has to be busy.

JR is struggling with knowing now that his kids in Florida are suffering without him being there. He's struggling knowing that his son is angry because he can't see his dad but there's a baby up here living with him every day. He feels left out and rejected. It's a tough situation. It's a bad situation. He has two kids there, who don't see him and don't get money or presents or visits; but he has a baby here and she has all of him, and his son is in pain and angry because his daddy is here and not down where he can see him and spend time with him. It's a mess. It's gotta come to a head soon. It had to. He's gotta admit that he's made a mistake.

I don't know....the whole thing is just.....frustrating, painful, irritating....will it never end?

No wonder my head screams at me.

Applying for disability

2010-03-14T11:13:00.000-05:00

I have atypical facial pain, occipital neuralgia, sensitivity to light and sound, migraines, chronic depression, PTSD, OCD and borderline personality disorder. What got my disability granted was my psychiatrist writing a letter to the judge telling him how I met the SS guidelines for granting disability based on depression. I found the guidelines, highlighted them and put them in with my paperwork when I went in for my hearing. The judge saw them and asked me who highlighted it. I told him I did. He said that since those were the Social Security Administration's guidelines, if I had someone who would back me up in writing, they would have to give me disability.

I was refused based on the chronic pain even though I am taking Methadone for it based on my allergies and sensitivity to several medications. I cannot practice as a nurse on narcotics but my pain doc (not this one, the second one - or was it the third one?) told me I could get an exemption. I asked him if he'd like someone on Methadone who sleeps half the day or more taking care of his mom, or his kid, or his wife, and he looked at me like I was insane. Still, he insisted this wasn't something that qualified me as disabled, and the SSA agreed. They said I was impaired, not disabled. Well, impaired nurses can go to prison. Never mind that my attention span is about 5 minutes long, that I can nod off sitting up talking to someone, and that I forget things a minute after I see or say them; I wasn't safe practicing as a nurse and I knew it.

You have to have worked at least 10 "quarters" or "credits" in the last 10 years to qualify for disability if you are 31 or older. I'm not sure how long you've been out of work; this might influence whether you qualify for Federal disability payments or if you need to apply for SSI.

85%-90% of all applicants are denied the first time around. It is one way they filter out slackers. Unfortunately, it also does a lot of damage to people who need the benefits and are truly disabled. It is important for you to ask for a hearing as soon as you are denied. Then, you start collecting what you will need to back up your claim.

Get copies of ALL your medical records from each doctor who has treated your disability. Your primary doc, a neurologist, a cardiologist, a psychiatrist, a pain doc, a surgeon - anyone you've seen. The Freedom of Information Act states that if you ask, in writing, for a copy of your medical records, they are required to provide them within 30 days. They cannot refuse. They can charge you a "reasonable" fee for copying - I had to pay my primary doc's office $15; none of the other docs charged me anything. Go through and make sure you're not missing important stuff like what meds you're on, what your diagnosis is, how often you visit, any emergency calls, that kind of stuff.
Request copies of any and all scans, x-rays, lab tests, biopsies, or the like that confirm your diagnosis. Again, request it in writing and sign the request. Ask the place that did them if you can remember. It cuts out the middle man.
Make a list of all your meds and when you take them. List side effects - it makes you sleepy, makes you stupid, makes you clumsy, affects your coordination, affects your ability to drive, affects your sleep/wake cycle, and so on.
Keep a medication diary. What do you take when? List PRN meds and why you need them as well as how they make you feel and if you get the relief you need.
Keep a daily diary. What's your normal day like? Are you limited by your condition/situation? Can you drive? Can you do what needs to be done at home without reminders or assistance? Have members of your family had to pick up the slack between what you used to do and what you can do now? How is your life today compared to how it was before you got sick? Do you miss out on family celebrations....birthday parties, Christmas, reunions, that kind of thing? Can you tolerate the things you used to tolerate?
Keep your appointments. If you need to cancel or reschedule, keep track of when and why. Call the doc and explain what's going on; don't just blow off an appointment if you feel crappy. Put it in your diary.
Make copies of all the paperwork you have and send it to Social Security. There are copiers in their offices that you can use for free so you don't have to pay for the copies. Keep the office up to date on all the changes in your case. They won't come looking for this, and they make their decision based on what they have in front of them.
Don't give up. Prepare for a fight. Determine how far you are willing to go before hiring an attorney. I decided that if I didn't make it on my first hearing I would go ahead and get one. It turned out I didn't need it. I got approved after the letter my shrink sent to the judge after my first hearing.

Please let me know if you have any other questions.

day 1572 - a new year

2010-01-21T00:27:00.000-06:00

Well, here we are in January, 4.5 years after the beginning of my journey with atypical facial pain. Gosh, it seems like forever some days; others, it seems like just yesterday I was doing normal things in a normal way. Heck, I don't even know what normal is any more.

The head and face pain; the constant ringing in my ears; the activity intolerance; the sensitivity to light and sound; the fatigue; the lack of motivation - they have all become as familiar to me as my own skin. They don't ever leave me alone no matter how little I do or how many meds I take or how little/much I sleep. It really makes no difference.

My ability to be independent has been altered. I can't always take myself to the doctor or go shopping or take care of the house alone any more. I need help. I don't always go to bed with a clean kitchen. I can't remember the last time I cleaned the house really well. We just live with the dust and the too-infrequently-vacuumed floors and the dishes in the sink. I don't like it, but I have learned over time that I cannot drive myself to achieve what used to come to me easily or I will be exhausted and that leads to crankiness, grumpiness and a short temper. The more tired I get, the less I tolerate the other irritating things like light and sound and noxious smells and movement and the all too frequent demands on my time. I have to be careful not to lash out, not to lose my temper and say what is bubbling up from under my thin veneer of hospitality and tolerance. What I often want to do is tell people to leave me alone and go away. I can't do that. I need my family and they need me. I will inconvenience myself and put myself out there and stretch myself thin in order to spend time with my family because they are important to me. It's a tough choice to make.

I'm gonna go rest.

day 1533 - new neurologist

2009-12-14T18:41:00.000-06:00

He's a smart man.

He looked at all I had on the information sheet I take to all my new docs, listened to me, listened to hubby, asked a few questions, did a cursory exam, and left everything the way it is.

My only concern is that he didn't do any kind of exam at all on my head or face. How can he know what kind of pain I'm having if he doesn't check it out for himself? Still, as much as those things hurt, I was kinda glad.

He refilled my Maxalt. I see him again in 6 months.

At least he believed me and took what I said at face value. This is good, because we've done enough stuff to know where we are and what can - and cannot - be done. We've pretty much been through the wringer and tried just about all that can be tried.

So now we're back to a primary doc, a pain doc, a neurologist, and a shrink. Status quo has been re-established.

Migraine yesterday. Took a Maxalt and had to drive home. There was no way I could have done it without the pill. I hate driving after I take those buggers but at least I didn't have far to go. We were only at WMart.

And there we have it.

day 1512

2009-11-23T18:10:00.002-06:00

Just in case anyone was wondering how long I have been in possession of my current pain situation and if I was still keeping track....well, I am.

And now I really need to get off my backside and go get hubby's strep medication, some milk, and something else I'm sure I'm forgetting....

What a fascinating life I lead!

More and more

2009-11-23T17:42:00.003-06:00

Well, what I had ended up being a case of strep throat, probably a sinus infection, and some good old H1N1 - thankfully, a milder strain. I've missed several doctor's appointments in the past 3 weeks and rescheduled them...some two or three times.

I'm finally starting to feel better, or at least not half dead. I'm still exhausted and my eyes and ears and nose hurt and I want to sleep all day for the next year and a half.

And now hubby has it. Poor guy sounds like he has a vise grip on his throat. He went to Urgent Care, dropped off his script at WMart, and went on to work. He only calls in if he's half-dead. He had a fever of 101.2. I pushed some acetaminophen down him and sent some for him to take at dinnertime. It's the best I can do.

It's not fun getting old, but it's better than not being here.

Sorry....I'm a bit low on energy.

flu, strep or just a bad cold?

2009-11-08T03:00:00.004-06:00

I don't like having what I have.

I'm not sure if it's the pig flu or strep or what, but I'm exhausted; my ankle swelling will not go down no matter what I do; I have a dry and scratchy throat; I'm coughing up lovely green-yellow small chunks of gak; and I could sleep till 2011 if I didn't have to go to the bathroom so much.

It started earlier this week with a scratchy throat. It was Monday, I remember, because hubby and I had obtained tickets to Celtic Thunder and I decided we were going barring anything short of a nuclear accident. It was followed by dryness to the point of painful swallowing. I didn't have a fever and my lymph glands weren't swollen, so I thought it was probably Mr. Pig in the flesh coming for a visit.

Now I've got the throat thing, the cough, the hocking up icky stuff, and - as usual with any irritation to my head or neck or any combination thereof, the tinnitus is nice and loud just in case I forget it's there while I'm focusing on how rotten I feel. I have a negative value of energy at this point. Yesterday I dozed off eating chicken noodle soup and spilled some on my lap. Today I spilled a small amount of diet soda on the thankfully sealed keyboard - yep, dozed off again. It seems that I can never get enough sleep. This isn't how I envisioned my life would be when I hit 49, but here we are.

I cancelled 3 appointments this week so I'll have to make them up. One will be Monday with the primary doc and since hubby has it now as well, and he has his regular diabetic checkup, we'll just hit her up all at once. I was supposed to see my surgeon today and once hubby got me awake enough to dial the phone and understand what I was doing, I called and rescheduled that one as well.

This is year 5 with my obnoxious visitor. Had you asked me in the beginning of 2004 I'd have told you that by 2010 we'd have the house paid off and own it outright so hubby could retire and spend some time working for himself instead of having to go punch a clock. We'd have my hospital insurance and I'd be enjoying the job I had just started 3 1/2 months before this hit me like a ton of bricks, knocking me out of the workforce and to the fringes of society as well.

I've learned a lot about the medical profession after spending 4+ years on this side of the fence. I had, like probably most medical professionals, a tainted view of how we treated patients. I found out really quickly that if you don't physically possess a disorder that shows that your body should be in pain, you will be looked on as a drug addict and/or drug seeker, as someone who is a whiner and wants to escape reality, and as a slacker who wants to live off the government. Even people who knew you when you were well won't believe you are in the pain you say you're in. I was ashamed to have been a nurse for so long when I was on the receiving end of some of the most rude, degrading, downright hateful treatment I've had in my adult life. I've been refused treatment and labeled as a drug-seeker by the hospital closest to our home. I had a headache doctor drop me because I had a period of time, before the pain was under control, where riding for an hour to his office to wait and spend half an hour there before the hour's ride back was just flat too much...he said I missed too many appointments. I also had to reschedule a lumbar puncture due to the pain he obviously had no intention of even desiring to understand, and the hospital got upset too. Now this is a hospital that was started by a nun who wanted all people to receive compassionate care. I dare say she'd have been a bit upset at how I was treated. When I was put on narcotics for pain control and had to have the obligatory psychiatrist's management and diagnoses, and my neurologist found out I had an anxiety disorder, he was all of a sudden convinced that my whole problem was because of the anxiety and he basically wrote me off. This was the same doctor whose wife I cared for while she was dying. The family liked how I cared for her, and he had seemed to be a caring doctor till he saw those words; it was like the lights had gone out in his brain after that.

It amazes me how those of us with invisible diagnoses are treated, not only by the general public, but by the medical profession. Honestly, they should be ashamed of themselves. We are taught that pain is subjective, and that if a patient says they are in pain, they are in pain. Not so. If the care provider thinks the patient is a nut, or a drug seeker, or both, they treat you like a liar, a drug addict, a piece of garbage to be swept out the door with the rest of the trash. It's a poor reflection on the American health care system. It's appalling.

It seems I'm on a rant. At least it's making me feel better.

I've gained back most of the weight I lost with my gastric bypass surgery. Part of it is enforced lack of activity. Exercise causes pain because of the constant motion. The sound of the video, turned up loud enough to hear, causes pain. The glare from the TV hurts. The other thing is that the medications I'm on can cause edema and increased appetite. I promised myself when I had the surgery that I'd not gain the weight back.

I lied.

I'm disappointed in myself even though I know it's not all my fault. I know I'm a stress-eater and the ten years we've been married has had relatively few stress-free months. Accidents, storm issues, a tornado, an estranged daughter and family, the breakup of my son's marriage, job losses and gains, a son and a son-in-law now diagnosed with seizure disorder, a grandson who had just turned 2 and had meningitis, possible encephalitis, and we weren't sure if he was going to make it...now a granddaughter born to my still-married son and his girlfriend while the children from his marriage live with his estranged wife's two sets of parents...

Still, I should be able to relax and slow down on the eating. The fact of the matter is, I can't. It is a well-entrenched coping mechanism I've learned and learned well in my almost 50 years on this planet.

Eh, I'm done for now. Time to go put my feet up and read the captioning on the TV for a while.

plodding along

2009-11-02T15:33:00.003-06:00

Well, my arm is healing up pretty well. The scars are bigger and longer than I had expected but I remember my hubby telling me that the surgeon said there was a bit of a mess in the upper blockage area and he had to do more than he expected. The tingling, numbness and pain in that arm and hand are gone.

Now, it's a matter of scheduling surgery for the right arm. I was crocheting the other day and honestly, I didn't get two rows done before my thumb and first two fingers had gone numb. I was thinking it had let up, but that's because I've not been doing a lot of the things I had done before. It's still there, all right. I'm glad he didn't even think of doing the two together. I'd not have been able to do anything at all.

The edema in my feet from the Methadone is worse now than it has been. For the last couple weeks I've had almost constant swelling and it has been so bad a couple times I couldn't get shoes on. That along with the weight gain are the two worst side effects of the drug that keeps my pain in check. Given the choice, I'd take the swelling and increased weight over the pain any day. It's just no fun having to choose.

I'm not sleeping again. A couple hours here, a few hours there, and that's all I get. It's been 4 years since I've slept well at night. Man, do I miss it. Now if I go to bed I'll sleep for a bit and then get up, or I'll lay there for a few hours and decide the heck with it and get up. There's no sense in laying there all night, listening to hubby sleep. It gets frustrating.

After the first of the year it will be time to deal with my teeth. I seriously need a cleaning and such, but I can't be awake because those hypersensitive nerves of mine would have me clawing at the ceiling. We got a flyer or two in the mail about a place towards St. Louis that does sedation dentistry. I'm going to check them out and see if they can do my teeth. We've got the insurance; I might as well get it done. Otherwise, my teeth are gonna start falling out of my mouth. If they can knock me out I have the feeling it will be fine. It's either that or dentures....

I've been able to sew more in the past several weeks. I can't explain why but sometimes the machines really hurt my eyes and ears and head. Right now, they aren't doing that, so I'm taking advantage of it and sewing away. I love sitting at the machine. Being able to create things has always been a sort of therapy for me.

So, basically nothing new here on the home front. Since I believe, though, that nothing stays the same for long, something is bound to happen soon.

two weeks out

2009-09-04T15:21:00.003-05:00

I'm two weeks out from my first carpal tunnel/median nerve release surgery.

I am so sick of the bandages already I could scream. The skin underneath is dry and itchy and I don't like dry and itchy. I want to rip the blasted thing off and take a shower, except I don't have more of the cotton cast wrap so I can't. The 4x4 underneath the cast wrap is rough at the edges so it makes me itch and the skin is irritated there.

Can you tell it's a whiny kind of day?

At least I've been doing good with the extra pain meds. Total, for the two weeks, I've taken 37 Lortab. I've not had to take more than 1 at a time since 6 days after the surgery. I think that's pretty darn good.

I'm driving again, albeit carefully and slowly.

They're giving me two months' worth of Methadone prescriptions now. I take them both to the pharmacy and they fill one, then I call when I need the other one filled. Schedule two drugs have to be done this way.
I saw the nurse practitioner Wednesday. She's nice.

The ringing in my ears is bugging me more now than anything else. It just never, ever stops. I'd like to disconnect my hearing sometimes, when the ringing gets so loud that it's all I can hear or think about. It interferes with my hearing, with things I can watch or not watch on TV, and all kinds of other fun stuff. I'd really like to have the ringing not be so loud, but I am so over having to take drugs I'm not willing to go and have them give me something else to pop during the day.

I'm not sleeping well. This morning I did something unheard of and, after oversleeping and not getting up for my 6am pill, I stumbled out at 8am, fed the chickens, came back in, forgot the pill again, and sat down in the recliner; there, I passed out until noon. I'm definitely sleep-deprived. I seriously think I could sleep for a week, only waking up to take drugs, drink something, and go pee. However, there are chores to do and kids to see and all that other jazz, so it's not happening. No way.

Enough is enough already. I don't know why I've been handed this pile of stuff. Apparently God has a lot of confidence in me. I guess I'd better stop thinking I'm so weak.

more and less

2009-04-28T09:00:00.004-05:00

The Methadone is doing pretty well. I'm under decent pain control with the exception of my left arm. I'm not sleeping well, or at least not more than a couple hours at a time, but I'm making it.

I've been sewing things in preparation for the new granddaughter due next month. I'm workin on her diapers now. Her parents decided to give cloth diapers a try; I'm making the infant size first so if they decide to go with disposables I haven't used as much fabric as I would if I made the full set of older baby diapers. I'm also making myself a new dress. It's a lot like my other dresses but the neckline is less likely to leave me flashing than the other one. My bosom is smaller than some, and the lower necklines have far too much fabric for my needs. I'm hoping this one is more to my liking.

I've been having pain in my right forearm and upper arm for over 2 months now. I went to the doctor and found out that I have a neuroma on the nerve that ennervates my left arm, and the growth is right by my left pinkie. It makes my whole arm hurt, sometimes when I'm just sitting still and doing nothing. Apparently the tumor has been getting bigger and bigger slowly and now it's big enough to cause more pain than I can tolerate on a daily basis, even with the meds I'm on. So anyhow, I see a hand surgeon on May 23 to arrange to get the growth removed. This is definitely not high on my list of things to look forward to, but it needs to be done, and I'll get it done. It's going to make dishes and chicken chores interesting for a while, but at least maybe I'll feel better.
I made a sleeve cover for my left arm so that I can stop picking on it. If the sores heal up all the way that will lower my risk of infection when I have the surgery. It's hard to explain, even to my internest/primary doc, that a compulsion is just that - a compulsion. I can't just decide NOT to do it because I know I shouldn't. She suggested hypnotism and seemed a bit upset when I told her I don't do that. I believe it's opening a door to the demonic and I don't want to take that chance. She didn't seem to understand. She's of the opinion that it can help people. I don't believe that it's an option for me and I'd rather not go that way, whether or not she is happy with it.

When my hubby was laid off in February, I was approved for Prescription Assistance for my Lexapro. It saved an awful lot of money since Lexapro is just shy of $150 a month without insurance. Since hubby is back at work, we won't need the assistance any more, so I will tell my psychiatrist to cancel the prescription assistance and let someone else have it who needs it. There's no sense in using it if we don't need it.

I spoke with a cousin last night. She has nerve issues as well in the same arm as mine. I'm wondering if it's genetic. That might explain the headaches and all. It could very well be.

Other than that, life is status quo. The pain is here every day, and I take my medicines like I should, and pray for the courage and strength to go on and to be strong and to be thankful for a loving family and good insurance and all the blessings I've been given. It could be a lot worse.

I guess that's all for now.

plodding along

2008-09-23T21:35:00.003-05:00

Once again I am limited by the medication I take. The new sleeping pill is great. It helps me sleep better than I've slept in a while. However, since it is a benzodiazepine like the Xanax is, I really have to be careful how much, where, when, and how fast I drive or do other things. It has quite an effect on my concentration and reaction time.

I now go no further than the closest larger towns (about 15 miles) without an escort, and when I do go to town, I drive no faster than 45 or, on a straightaway I know well, I can go 50 miles an hour.

The effect on my personality and psyche of losing this part of my independence has been significant but I have realized that I need to be careful and take responsibility of what I do with what God has given me. If that means I don't go tearing off to the mall any time I want to, then that's what it means. I am learning patience - again. I knew I wasn't done with that yet.

I'm also making little mistakes I hadn't made in a while like bonking my head on things, dropping things, cutting my fingertips while chopping up food, and the like. It reminds me I need to slow down and enjoy myself and not be in such a hurry.

There are lessons all around us if we just stop and listen...

I just realized

2008-08-25T23:48:00.002-05:00

I'm going into my 4th year with this wonderful disability.

I know a lot more about it than I did, which is still pitifully little.

That is because there is pitifully little to be known.

Without the Provigil, the sleep issues are still right up front. I'm going to try to go to bed here soon and see if I can get some sleep. I have been at least making the attempt several nights a week. The thing is, I've been picking a lot now too and that doesn't necessarily help. If I can't sleep and I go to bed, I tend to lie there and pick. My skin is a mess. It's from little bug bites and cat bites and scratches and goodness knows what.

I see the psychiatrist on Wednesday. I had to reschedule last month because of a honker headache. Oh, they're always fun.

The more stress I'm under, the worse the symptoms of the OCD and borderline personality disorder are, and they're not the best right now. Picking, obsessing, procrastinating, self-degradation...That reminds me. In a minute I need to look something up.

The situation with Becky is still bad. The other two and I are getting along, but not necessarily all that well with each other.

It's hard to believe I've been in the midst of this for 3 years now. I didn't think I could handle it before. I guess I proved myself wrong.

med adjustment

2008-08-07T22:39:00.004-05:00

Dr. P increased my methadone yesterday. I'm taking 10 mg 3 times a day from now through fall since I'm more busy in the summer due to gardening and the like and my pain has increased a little.

I did manage to drop off the prescription yesterday, but I didn't wait an hour to pick it up. I need to get it next time I'm at WalMart.

I had a few extra pills so I increased the dose yesterday. While the pain is notably better already, I've also noticed a couple other side effects I'm not really thrilled about.

1) I am dead tired almost all the time. I dozed off twice today and spilled my soft drink all over my lap. The first time I also spilled some on the floor. These incidents both necessitated a change of clothes, which is embarrassing. Thank goodness I was at home and not out and about.

2) I forget things. I had something to drink here on the end table by me tonight and went to the refrigerator after doing a couple small things and got more to drink and brought it over here, only discovering that I already had something here when I got to my chair and was ready to sit down.

3) I'm not going to be able to drive for a while at least. The fatigue makes it hard for me to concentrate even long enough to drive to the store. I don't want to take any chances with my life or anyone else's while under the influence of this medication. I can wait to do my shopping and errands until I get a ride.

I'm hoping I'll adjust to this so I don't have to count on other people to get me to the store and back. It would make it very hard to do the things I do on the spur of the moment, like when I run out of thread and go to the store quickly to get whatever color I need and things like that.

Oh well...we live with what we're given.

bad couple of weeks

2008-08-03T23:04:00.003-05:00

The pressure of the Mississippi River Valley on my head, and inside it as well, has made the past couple of weeks pretty miserable for me. The pain level on my right side is up from a 4 to a pretty steady 4-5 again and I've had to take 1/2 a Lortab a couple times and I took a Maxalt on Friday, I believe. I haven't had a migraine in a while. I wasn't even really sure what this was and was just trying to cover all my bases. Tylenol, then Vicodin, then Maxalt. Progression of reason.

Going outside even to do the chicken stuff has become a greater effort. It's harder to breathe in the increased humidity and by the time I've been out for say, 10 minutes the sweat is pouring down my legs and forehead and I'm feeling a bit sweaty and wondering if I chose the wrong profession.

I see the pain doc this week on Wednesday. I'm going to talk to her about the pain and see if she'd rather have me back off on my activity or increase my dose from 25mg to 30mg a day to compensate for doing more because I feel a bit more human.

I need to get my iron level redrawn. I need to schedule my mammygram and a bone scan. I need to stop by my PCP's office and get more OAB samples so we can find one that works for me, or at least a reasonable facsimile.

I also need to go to the ophthalmologist and take a sample of my needle and thread and handwork and tell him I need the bottom part of my lenses to enable to do that, which it is not doing right now. I can't thread a small machine needle till like the 5th or 6th try. That's not enough. That's why I got the progressive/bifocal lenses. I need to be able to do this. It's part of my therapy.

I miss my life.

emotional

2008-07-14T22:45:00.006-05:00

Some days I am sad because of my illness. It's not anger or resentment, but it is sadness because I am missing so many things that I used to enjoy.

My older daughter enjoys playing outside in the kiddie pool with the boys. I can't do that. I am too sensitive to light to tolerate time outside except when necessary. They even go to the city pool once in a while in the summer. I wouldn't tolerate that either. I remember how much I used to enjoy watching my kids in the pool and playing in the water with them and to be missing that with the boys saddens me.

I miss family get-togethers. Barbecues, holiday celebrations...they all have to be observed differently now than they used to be.

I used to really enjoy cleaning my house and seeing it dust-free and smelling the Pine-Sol in the kitchen. Now I have to split up cleaning chores and it's not quite the same.

It's funny the things we miss when life changes.

not necessarily unexpected

2008-07-07T19:01:00.002-05:00

My appeal for the Provigil prescription was denied. The insurance company will not approve it for use to counteract other meds that cause fatigue regardless of allergies or any other reasoning.

Oh well.

It seems sometimes that my life just wants to head in that direction no matter what I do.

However, I am still alive, and still able to love and be loved, and I can still dress myself and go to the bathroom and brush my teeth, and life could be a lot worse, so I will fuss a little and then I will move on.

It's the only reasonable thing to do.

In a life this out of sync, someone needs to be reasonable. I guess I'm it.

pain, pain go away

2008-06-27T14:48:00.003-05:00

I've had this increased pain thing going on for a couple days. My right jaw hurts and I'm getting the icepick stabbing sensations either in the upper part of my jaw or in my right eye as well. Last night I had to sleep in the recliner because I couldn't lay down. Laying down increases blood flow to the brain and when I'm hurting like this that is one of the last things I need. I wanted to go grocery shopping but had to accept that this is not one of the days I'm safe going alone.

I go in cycles with my sleep. For a few weeks I won't sleep more than an hour or two a day or night....everything is all fractionated and I just get all whacked out. I fall asleep quickly and wake back up just as quickly.
After a few weeks like this I then switch into a mode where I can't get enough sleep. That is where I am now. It started on Monday, I think. All I want to do is sleep. I sleep most of the day and then sleep at night for a few hours, too. I'm tired, tired, tired. I know it's because I've been so sleep deprived that my body is screaming for rest. It's frustrating; another thing to add to the list, I suppose.

It hurts to keep my eyes open.

It hurts to close them.

It hurts to sit up.

It hurts to lie down.

It hurts to recline.

If I don't keep my feet up, my feet swell from the Methadone.

If I do keep them up, I fall asleep.

I've gained back probably 60 pounds of the 100 I lost after my gastric bypass surgery. It breaks my heart. It's hard to exercise because it hurts me to do aerobics and there's not really enough room in here to walk around a lot. Exercising outside is out of the question because of my allergies. I'd like to get a treadmill but I'm hesitant to spend the money in case I don't use it and it ends up gathering dust. I'd like to think I'd be faithful with it. It would at least give me an option here in the house.

I'm just feeling frustrated right now. I'm frustrated because I'm sick and I can't work as a nurse and my husband has to work so hard like he's done all his life just when he was looking forward to retirement. I'm frustrated because my schedule is all upside down and I need to clean but I just don't have the energy. I'm frustrated because this is not my dream. My dream was paying off the house early so hubby could retire and us taking some time to enjoy our lives together instead of struggling day to day like we have since we were young, each of us on our own paths.

I think sometimes for some people it's easy but I've never been there and I probably wouldn't know what to do if I was. My whole life has been a struggle and it certainly doesn't look like it's going to stop now.

I think those of us who have to fight for every forward step appreciate it more. It means more if you can't just go do it.

I need a vacation. An offensive odor free, noise free, half clothed implant loaded body free, alcohol free, smoke free, quiet, moderately dark, soft sheet, gentle breeze, water lapping on the shore kind of vacation.

I don't know if they even make those kinds of vacations unless you're rich, which we're not.

Ah well...one can dream.

status quo

2008-06-04T16:29:00.003-05:00

I did finally make the appointment with my PCP. I see her for my Well Woman physical next Thursday. I'm frustrated because of the weight I've put back on though I know a lot of it is either the disability preventing me from exercising or the meds which actually have weight gain listed as a side effect...still, I'm upset about it. I guess I need to get over it.

I got a piece of paper yesterday from the insurance company - a release authorizing my pain doc to participate in the appeal for the Provigil on my behalf. This is gonna take half of forever. Anyhow, I filled it out and sent it back. We'll see what happens. I figure I don't have anything to lose. I don't have it now and if they don't authorize it I still won't have it...all I can do is gain.

My laptop is helping me out a lot because now I can check my email and such without ending up with mammoth-sized feet from the swelling. It's funny how the Methadone causes that. It's not something I would have even thought of with a pain med. The trade-off is worth it, though. I'd rather have fat feet than be in more pain.

When I think of where I was 3 1/2 years ago and where I am now it's staggering. My life has changed so much...there is so much I can't do that I used to take for granted...things that never meant much are so precious to me now. I cherish every good minute now because I don't know when the pain of a migraine or exacerbation will happen.

I treasure my blessings even in the middle of the pain.

still sleepy

2008-05-20T22:53:00.003-05:00

I really need to make the appointment with my PCP. I nodded off this morning while I was cooking hubby's meals for the rest of the week in the form of lasagna and didn't wake up till it had been in the oven 3 hours and 15 minutes instead of 45. The noodles were like rubber. I had to toss it. It was inedible.

We can't afford to waste food like that. Hubby has now made a rule that I cannot bake stuff unless someone is home to check on me. It's a reasonable rule, but it hurts nonetheless. It's ridiculous that I can't even stay awake for ten minutes. I had already made the dish and put it in the oven. I got up to go to the bathroom and before I sat down I looked at the timer and saw that I had 10 minutes left on it. I fell hard asleep that fast and slept for 2 hours and 45 minutes.

I haven't seen the doc in 2 years anyhow...I guess it's about time.

I just don't like doctors, even the ones I have to see on a routine basis.

day 963

2008-05-15T05:30:00.002-05:00

Dr. P, my pain doc, offered to write a letter to the insurance company to see if she can get me approved for Provigil so I can be up in the daytime and sleep at night like I should be doing. I'm hoping it works. This upside down routine is bugging me a lot.

My psychiatrist suggested I might have narcolepsy because I have been falling asleep while sitting up, while eating or drinking coffee and the like. I will mention that to my internist when I see her this week.

I'm glad I'm on Methadone right now. I'm sure it's helping with my badly bruised tailbone. It hurts like heck even with the pain meds.

I am so tired...

May 7

2008-05-07T03:03:00.002-05:00

I see the pain doc today at 10.

I'm going to tell her they denied the Provigil and see if she has any other ideas. It was nice when I was taking that pill because it kept me awake all day and then I could sleep at night but that isn't happening any more.

I have to figure out a new combination of early afternoon meds. Right now the ones I take in the afternoon make me so sick I want to throw up. That's no fun at all.

I still have the edema from the Methadone but it's not as bad because I make sure to keep my feet up as much as I can.

I'm starting to get really tired now after being up all night. I think maybe I'll go take a nap for a while.

This is no fun at all.

It's been a while

2008-04-28T23:47:00.002-05:00

I haven't written for a while.

Things have been pretty much the same. I'm still not sleeping on a decent, regular schedule. It's more like a few hours at a time and then in between I'm always tired.

I'm also frustrated. I wish I could work. I'm tired of being close on money and having to watch pennies. The house payment will be late this week. It's only two days, but I don't like being so darn tight. I'd much rather be working and feeling like I'm doing something than sitting here and getting a check equal to one week's gross pay. That just really stinks.

My head still hurts. The past week or so it's been a little more than before, but I think it's an allergy thing. I dread making yet another appointment with yet another doctor; I see enough of them as it is.

While we're on that subject, I need to see a dentist, but with the facial pain I'm more than a bit apprehensive about that. I need to see my primary doc. I haven't seen her in 2 years or so.

The Methadone still has me swelling up. It's a lovely feeling. I feel like a cow.

I'm a bit depressed. I guess that's obvious.

still not sleeping well

2008-04-15T11:14:00.003-05:00

My sleep cycle is still a mess. I've decided to take it into hand one way or another.

Last night when I took my bedtime pain medicine I also took 2 extra strength acetaminophen and 30 mg of Restoril. I had managed to get everything done that needed doing and we were in bed by 10 o'clock. I fell asleep pretty quickly and slept straight till 3 when hubby woke me up. I made him breakfast and was asleep in the recliner almost before he left the house at 4:30 to head for work. I slept till 7:30. I'm still tired, but not quite as bad as I was. It's going to take some time to get it going, though. I have a lot of catching up to do.

Today I have to go check the mail and then go to the bank so I can get some cash for hubby's break at work. He doesn't use much - just about $1.50 a day. After that, I will come back, check for eggs, give the chickens fresh water, and then I'm going to take a nap.

It's hard when the meds you need for your pain keep you from sleeping and then you start suffering from that. One or the other....that's certainly a tough decision.

Other than that all the meds are working well. All I can say is it's about time.

can I get any more tired?

2008-04-04T12:23:00.002-05:00

Man, I gotta get some decent sleep.

My driving is off, my thinking is screwy, and I keep nodding off sitting up.

I can't spell for beans.

I hate not being able to sleep. Even 30 mg of Restoril only gives me 4 hours. This is ridiculous.

I'm going to try and sleep. I need to sleep. I have to sleep. I'm starting to worry me.

day 919

2008-04-01T01:11:00.002-05:00

The new Methadone dose is working pretty well.

My sleep schedule is all screwed up but I guess I'm gonna have to live with that. I got a sample of Provigil but it's not FDA-approved for sleeping difficulty due to taking narcotics for chronic pain so the insurance says it won't pay. I'm going to appeal. It can't hurt. After all, I already don't have it. What can I lose?

They say to try Ritalin or Adderal or another stimulant. Yeah. That sounds like tons of fun.

On the upside the pain relief is decent enough I can do some sewing agian. That's nice.

Now it's time to fire the neurologist and get another one who doesn't think that just because I'm certifiably nuts I also have no pain issues at all. One doesn't necessarily mean the other.

I don't think they've figured that out yet.

2 in 2 days

2008-03-23T02:27:00.003-05:00

The 20th and 21st I had migraines. They were, I believe, 2 separate migraines. They were about 24 hours apart. A Maxalt just about did the trick on both of them. However, I now need a refill, and I hate paying the copay for these orally disintegrating tabs because they are far from cheap. Still, it's better than hurting.

We're supposed to go to Abby's for dinner tomorrow. I'm going to have to make sure and take it easy so I can make it. Becky and her family won't be coming but JR will. His girlfriend is working. All this family stuff and some people not wanting to come if others are there is a big fat pain in the butt. I'm pretty sure a discussion about that was at least partially responsible for triggering the first migraine if not both of them.

I'm actually tired. I may get some sleep tonight. I forget to take the Restoril for some reason...I need to move it and just take it every night.

I'm just so tired of taking all these drugs...

addendum to the great sunglasses search

2008-03-10T11:36:00.003-05:00

After riding in the truck for 2 hours on Saturday to pick up our rescue rooster, I had to take off my Cocoon overRX sunglasses. The pressure caused by the weight where they rest on the frames of my own glasses was causing my head to hurt once again.

I have come to the conclusion after this testing period that even the best of the overRX glasses are okay for short-term wear, but not so great for longer periods of time - at least for people suffering from facial pain. For others, it may well be different. This is my experience only.

This week I will be contacting the company I was referred to by LiveEyewear and I will check into having prescription lenses put into the Widelines. Hopefully this will solve the problem and I will be done with it all.

the great sunglasses search part 2

2008-03-06T11:45:00.003-06:00

The owners of the company that sent me the Cocoons and Vistana overRX sunglasses graciously sent me two more pair in an attempt to help me find a pair to fit over my glasses as well as one I can have prescription lenses put in so I can wear them without my regular glasses underneath.

The Aviator XL Cocoon sunglasses, incredibly enough, fit! They cover the glasses and arms without pinching or weighing my own frames down so much that it hurts. I can wear them for over an hour without discomfort or a feeling of pressure on my head and face.
Hubby does have one pair of Fitovers that is lighter than the Cocoons but they are too tight for me. I am very pleased with the Cocoon Aviators and the fact that they actually fit and don't cause me discomfort.

The Cocoons Widelines are going to be perfect for putting prescription lenses in. They fit my face very well. The flexible armpieces are wonderful and easy to adjust so that they don't squeeze my head. I am anxious to find a dealer than can put prescription lenses in them. It will be nice to not have to wear two pair of glasses.

The UV blocking lens pieces on the sides of the frames are wonderful for anyone who is photosensitive. I really struggle outdoors if I don't have them on because the sun hits my eyes and it hurts.

I am very grateful to the people at Live Eyewear for going out of their way to make sure my eyes had the appropriate protection in the right size. I would recommend them highly to anyone looking for sunglasses to go over their prescription lenses in order to obtain the best product.

day 878

2008-02-20T15:46:00.002-06:00

I'm dizzy today. Not really bad, but enough to know I'm dizzy and to have to focus to do things like bending over and walking and going downstairs.

It's very disconcerting.

And frustrating.

I'm not sure what's causing it. I do know I don't like it.

I'm also having a strange case of numbness along the outer part of my right hand. It's like it's asleep or something, but not. Actually, that hand has been bugging me for a while now. I think I sprained it a couple months ago but it never really wanted to heal. I wore a compression thing to help immobilize and protect it some but it is still very sensitive and I have to be careful what I pick up with it.

Sometimes this whole sickness thing is a real pain in the pants. I know God sees it all and knows it all and walks with me through it, but I am still over the whole thing.

I'm filling out Medicare paperwork. Great. Medicare at the age of 48. How thrilling.

Now that the patent on Zyrtec has expired my insurance no longer pays for it. Instead of getting it for under $7 with our prescription coverage, I now pay $18 for 45 tabs of the generic stuff. If I was poor, I guess I'd just have to decide if I wanted to breathe or eat.

I'm cranky.

the great sunglasses search

2008-02-10T06:47:00.000-06:00

I've been looking for sunglasses that go over my prescription glasses for a couple years now. The reason I started it all was for the idea that they'd go over my regular glasses, cut out a ton of UV light, and even take care of the stuff that comes in through the sides when it's really bright outside.

The first pair I got were Fitovers. Actually, I got 2 pair; one for hubby and one for me. They did great at filtering out the UV light but were heavy and didn't want to fit my head correctly. After about an hour I started feeling the weight of them resting on my regular frames and the pressure the stiff arms put on the sides of my head. It got to where I only wore them when I had to.

After I broke one armpiece, I ordered another pair in a different style. Same problem...dark enough, but too heavy and inflexible.

Loss: $150, plus or minus

I went in to WalMart one day and they had their brand of overRX sunglasses, so I purchased a pair. Although definitely more girly in style, and a bit more attractive in color, they also gave the impression after about an hour that my temples were in a vise. The little ledge that is on the top of most of these frames, intended to help block the light, rests on my frames. The pressure from that weight also causes noticeable discomfort, both in the Fitovers and the WalMart brand.

Loss: $30

Recently the owner of an online company emailed me and asked me if I would like to try a pair each of the Vistana and Cocoon brands of overRX sunglasses. I wasn't sure it was really them - I guess all the spam in my email inbox has made me a bit cynical of free offers. After discussing it back and forth, I came to see that they were indeed intent on letting me try their product for free, and I agreed to do so.

The Vistanas are lighter than either of the two previous brands I had tried. Much lighter. I love the wraparound effect. Again, they are excellent at blocking UV light, which is critical for me because of my photosensitivity. The FlexFit armpieces are great. However, are attached to an inflexible section that joins them to the frame, and that is where problem #1 comes in. Again, I get the squeezing sensation in the temple area, and I cannot leave them on for more than an hour without it becoming intolerable. It's no better or worse than the others; it's just there, putting pressure on a very sensitive area, and that makes it difficult to wear them for very long. Problem #2 is the same as it is with the others I'd tried so far. The weight of the frames rests on my glasses because of the light-blocking insert at the top of the sunglasses, and this puts pressure on my nose and then on the armpieces of my glasses. Not as much as the other two brands I'd tried, but it is there nonetheless.

I moved on to the Cocoons next. They are by far the lightest of all the brands I've tried. They seem to weigh next to nothing. They also have the FlexFit armpieces attached to a piece that hooks to the frame front. I put them on and went for a ride. The first thing I noticed was that they don't want to sit over my own arm pieces, but above them. This puts the frame front at an angle, with the pressure on the top of my frames again, pushing into my nose and then into my armpieces. While the flexible armpieces are great, they don't flex where I need them to, so, sadly enough, I get the same squeezing sensation that I have had with the 3 brands, 4 sizes and 5 styles previously tried out.

For someone with nerve problems to the face, it seems that finding sunglasses with extended UV-blocking capability to go over prescription glasses is a losing battle. Each company seems to have a great idea. Each style I tried had some positive attributes. The lighter they are, the better they are. What is needed more than anything, though, for the people who face what I face on a daily basis, is a pair of overRX sunglasses that doesn't put weight on the main prescription lens frame; they also need to have a fully flexible armpiece so that they don't add pressure to an already-painful area. I don't have any answers or suggestions as to how that can be achieved. I wish I could get these kinds of sunglasses with prescription lenses in them. That would solve the whole issue. However, I haven't found a place that sells them yet.

I am grateful to the company that sent me the free sunglasses. I really appreciate their trust in me and their willingness to try and help me out. Maybe my suggestions will help in the development of a style that will help those of us with facial pain issues to be able to enjoy a nice drive or sunny day without adding to our pain from the UV light or the pressure of a second let of lenses and the frames to go with them.

day 859

2008-02-01T22:51:00.000-06:00

The Methadone is still working well at this level.

I can drive again.

I'm able to sew as well.

Now if my sleeping schedule would just work itself out....

I see the pain doc again Wednesday and maybe she'll agree to raising that dose up to 25 mg a day instead of 22.5. It's not a huge increase but it might really help.

I'd like to go see my Florida grandbabies. That would be awesome. A little more pain control and I may just be able to do that.

Today I'm 48. It sure doesn't feel like it.

day 840

2008-01-13T20:48:00.000-06:00

The increased dose of the Methadone seems to be doing the trick. I've cut way, way back on the acetaminophen consumption and am not in anywhere near the pain I was in a week ago. I know part of it was anxiety but part of it, I'm sure, is due to the medication being closer to a reasonable dose.

Instead of being at a 6-7 sitting, I'm down to a level 5 most of the time unless I overdo and don't take care of myself. If I know I'm going to be busy I take the acetaminophen to kinda help counteract it so at least it helps a bit.

It looks like I might be heading in the right direction.

finally

2008-01-11T10:55:00.000-06:00

Abby went with me on Tuesday to meet the new pain doctor.

We hit it off almost immediately. She's a wonderful person, full of energy and life and very caring and kind.

We ended up increasing the Methadone from 5 mg 4 times a day to 7.5 mg 3 times a day and if that works, we may increase it to 12.5 mg twice a day when I see her in a month.

I am so glad she's nice. Dr. P and I just didn't hit it off at all. He may be a nice enough person, but he's just not the doc for me. I didn't like him and I'm pretty sure he wasn't very fond of me, either.

The increased dose of Methadone is already making a difference. I'm sleeping better, not quite so photosensitive unless I get tired, and I don't seem to need the acetaminophen any more unless the day is going weird like yesterday.

She also has an office about 1/2 hour from here so instead of driving to the city to see her, I can go to her other office and we can do what needs to be done there. That also makes me very happy because while I'm quite competent at city driving, I detest it. Her other office is in a little town and it's right at the edge of town across the street from the hospital Norbert had his appendix out at and I won't have to go to Mapquest to get the directions.

Things are looking up.

day 822

2007-12-26T04:24:00.000-06:00

Sometimes my head just gets so full of stuff I can't even think straight.

The pain is pretty much the same. A familiar companion now, I wonder if it will ever lessen in severity. I'm pretty much resigning myself to living with it at this level though deep inside I do hope that maybe some day I can find a doctor who will care enough about me as a person to adjust the dosage of my medication so that I can live a little easier and not be so tied to watching every movement, knowing that one too many will put me out of commission for days, if not more.

I'd like to spend time with my grandbabies like I used to, but I can't. I can't tolerate the simple noise that joyful children create as a side effect of the act of being. It hurts. It physically causes me discomfort.

The holiday was nice but I had to ask several times for people to, in a sense, stop enjoying themselves so much because enjoyment naturally leads to sound, and sound hurts.

I wonder if anyone without this kind of pain has any clue how hard it is to live this way.

Probably not.

I wonder if they care.

Most of them - probably not.

They just want to get on with their own lives and happiness and I am in the way.

And that is tough on me.

And I weary of asking people to lower voices and stop sounding like life is so much fun - because for me, it isn't any more, because I cannot stand the sound of enjoying life.

And that is sad.

let me describe this while I can

2007-12-18T22:56:00.000-06:00

It's as if someone took a chisel, one of the shorter ones like men keep in a tool box, and flattened the end so it's about as big around as a dime but about 1/2 inch thick; then they took that chisel apparatus, put it on the right side of my face between the far end of my eyebrow and where my hair begins, and tapped on the chisel just hard enough to hurt. Over and over and over and over and over and over and over. For hours and hours.

I can't even stand the lights on the Christmas tree. I had to shut it off. The TV is off.

The tinnitus is loud again, louder than usual.

I just want to close my eyes and sleep away the pain. The problem is, it's always there when I wake up. There's also the issue of the pain that laying on my back aggravates lately with the occipital neuralgia acts up.

I need to be working on Christmas gifts but I can't stand the light or the sound of the machine. I feel horrid. I promised the kids their quilts this year and it looks like that won't be happening again unless I machine quilt them, which I really didn't want to do. If I did, though, I could have them done on time.

I just wish I could have something to take the edge off on days like this, since they turn into weeks more often than not, and with Christmas coming next week that isn't a good thing...

...but what does the pain care?

day 814

2007-12-18T04:35:00.000-06:00

The occipital pain has been stronger in the past two days than it usually is. I actually sat yesterday with my eyes closed for a while to make sure it wasn't migraine pain, but I can't feel the throbbing or the feeling of the blood rushing to my brain, and it's concentrated in the back of my head instead of on the right side where the migraines usually occur. It makes for an interesting time trying to sleep because that leaves me one option - my left side. The right side is out of the question, and when the back hurts, then I can't even really go from the left to the back like I can when it's not doing this. Since I don't have anything for breakthrough pain, I can't take anything to help with it. This, again, is one of the things that frustrates me about the pain doc I had for a year - nothing for breakthrough; just suffer with it unless or until it gets bad enough to go to the ER almost an hour away, jolting and jostling on the Missouri roads, to get a shot of Dilaudid and one of Phenergan, and then another hour home.

I am hoping the new doc that I see in January has a better suggestion for me than what I'm doing now. This really stinks. When I have days like these all I can really do is hang around the house, alternating between doing simple non-stressful chores and sleeping. Exercise, one of the things they really push, is out of the question. It hurts just to BE. The thought of the motion and the additional stress it puts on the pain is just too much.

I don't know if I'll get the quilts done for Christmas that I tried to finish last year either. It hurts my head to work on them too long. It's extremely frustrating to have them sitting there, knowing I want to and am capable physically of doing it, but realizing that pushing the pain in my face and head to do that kind of work is only going to make things worse. I don't know...maybe I'll just do it anyway.

I'd like my doc to go through this for a while. I really would. Maybe it would help him see how it really feels and how frustrating it is to not have the choices a person should have to improve the quality of life simply because I also happen to have a psychiatric diagnosis and therefore by implication cannot be as ill as I say I am. The prejudices associated with mental illness make me want to scream.

So much for that. I feel a bit better having gotten that off my chest.

day 811

2007-12-15T00:33:00.000-06:00

Okay, so I ended up cancelling again. My head was pounding. I'm going to check out the new doc here who is replacing my old cranky one and if it's not going to work out with her I'll make the appointment with the other guy.

I've been kinda between depressed and feeling driven to do and be and all that junk because of the season and because of the new baby. I'd like to just crash for about a month but it's not going to happen.

Realizing the extent of my borderline personality disorder has been a bit tough on me but at least I see it for what it is and I'm trying to work with it and keep my life somewhat consistent instead of flopping all over the place.

I don't really feel like writing either here or in any one of my other blogs. I'm really lacking that kind of motivation right now. Maybe it's the SADD kicking in again. Then again, maybe not.

I wonder sometimes how I manage to function like I do considering all the crap that I went through as a kid. It's hard to remember a lot of it - I've blocked years and years of my life as part of that psychological protective mechanism process. It's frustrating, though, to think that there are periods of time where I was here, and alive, and being who I am, and I can't recall that time. It must have either been bad, or it would have triggered memories I couldn't handle, so my mind just put them in a box, taped it shut, and stored it on a shelf way, way back in the closet in the corner of my brain.

I know it's for the best, but for how long?

day 802

2007-12-05T07:13:00.000-06:00

I really don't feel like going to Columbia today to see that pain doctor. I hate to cancel again, but I think I might put it off till after the first of the year. It takes so much energy to see a new doctor and start all over again with the paperwork and tests and questions and explanations...and after the fiasco with the other doc there, I'm just not sure the extra gas and time is going to be worth my effort.

I'm pretty much at the stage now where I just want to give the new doc at the old pain doc's office a chance first since I know that place and I won't have to go through all that stuff one more time. She may prove to be more humane than the other doctor. If not, I can always look further.

My energy level is pretty low right now and I'm moody and grumpy and I just want to sleep all the time. I'm making myself do things but I'm only doing that so I don't turn into a vegetable.

I hate being sick. I'm tired of being sick.

2 days with little sleep

2007-11-21T12:16:00.000-06:00

I've had maybe 3 hours of sleep in the last two days.

This is very frustrating.

I need rest but I can't sleep. I hurt.

I hate this...and I wish I had enough pain medication that I could relax enough to get a good night's rest but I don't know if that will ever happen.

How some doctors treat chronic pain patients with invisible disabilities is a disgrace. We can put men on the moon and build hybrid cars and go live on a space station but people in pain are denied adequate relief because of an archaic view that perpetuates the fear of addiction in people who are far more concerned with being able to live a halfway decent life than they are in how people look at them. I'd just like to have the opportunity to cook a meal for my family without having to stop for rest periods and try not to leave myself so worn out that the pain will drive me to the bedroom later in the day.

Something's wrong here.

day 780

2007-11-13T07:43:00.000-06:00

I'm supposed to go see the new doc today.

I woke up from my nap with a migraine.

I have to take my Maxalt and then when the office opens I need to call and reschedule.

This sucks. And it makes a bad impression on the doc when I have to reschedule my first appointment.

Not to mention I was hoping to fire the jerk pain doc after seeing this one today...

Ah well, such is life.

Gonna go lie down and hope the med helps.

day 775

2007-11-09T23:09:00.000-06:00

I feel nasty. I've got some kind of sinus junk going on. My eyes ache. When I close them to help the aching I fall asleep. Consequently, I've been doing way too much sleeping lately.

I'm also nervous about the new doc. I am holding out hope that he will treat me as a person in pain instead of a nut case engaging in drug seeking. I just want to be seen as an individual instead of a diagnosis.

I'm PMS-cranky. That doesn't help things, either.

Oh well...at least I'm still here. I'm not about to give up.

day 767 late

2007-11-01T23:55:00.000-05:00

I see the shrink tomorrow.

In two weeks I see the new pain doc.

I am hoping he can take over for the old one before I get dumped. I really don't want to get dumped and be stuck with no pain meds. That could be a horrid mess.

I'm stressing over it all but have managed not to pick hardly at all today. I'm not sure I can explain that but I'll take what I can get.

The clinic in Springfield called and they don't do pain management. How how do you treat headaches without pain management? I can get a neurologist here...and a psychiatrist...and a crappy pain doc...why fly to Springfield to get those and no pain doc on top of it all?

Guess I keep looking.

Yuck.

day 764 - depressed

2007-10-29T01:49:00.000-05:00

I think I finally realized that I'm majorly depressed again.

The possibility that I'm not going to find a doctor willing to treat me like a person and help me manage all these conditions I'm in the midst of is overwhelming.

It might explain why I'm sleeping all the time again.

Can't they just do what they went to school to do and be a doctor?

On another note, I'm dizzy. It's weird. I don't know why...or how...no changes in medication or anything of that nature....just dizzy.

2 hours till med time...why bother going to bed, only to have to get up again?

blah

2007-10-22T22:47:00.000-05:00

Yet another doc at a loss as to what to do with me...

She wants me to go to a neuropsychiatrist and to the Diamond Headache Clinic in Chicago. I know nothing about Chicago except that it's expensive. The hotel rooms in that area run $100 a night and up. If the clinic wants you to do biofeedback, you have to pay on that day and file for reimbursement.

My question is, what do poor people do? Just hurt? We can't pay that kind of money...unless we don't pay some of our bills, and lose the house. From what I read about the clinic I'd be a frequent flyer for a while becaause they expect several biofeedback appointments, close monitoring of pain medications and effects, and other stuff like that.

I'm going to check on a pain doc in the same town the new doc is in and make the neuropsych appointment and take it from there. I can't afford this stuff. Maybe I'll just have to learn to deal with it. I just hope they don't take my Methadone away.

day 757 - nervous

2007-10-22T06:37:00.000-05:00

I see the new doc today.

Beth, my online friend, says she's a good doctor. I just hope she doesn't look at my list of meds and allergies and diagnoses and toss her hands up in the air. I don't need that right now.

I'd like to be treated like a real person with real pain instead of a nutcase. I'd like adequate pain relief. I'd like to trust my doctor not to think what I'm going through is all in my head, though indeed that is where most of the pain is. It's there, but it is not psychological in origin. The psych issues were there a long, long time before the pain showed up.

I'm still trying to decide if I want to drive or if I want to put gas in the van and let Abby drive. She's so far along it might not be a good idea. I guess I'll have to see how I feel when it's time to leave in just over an hour.

I was going to try to nap but that's not going to happen. I can't relax enough.

It'll be over soon and I'll know how she is. I hope it goes well.

moving around

2007-10-17T05:25:00.000-05:00

Yesterday most of the pain was in the back of my head, near the top. I went to bed, finally, and had to get up and come sleep in the recliner with my neck pillow behind me so my head didn't touch the chair.

Now it's moving to the frontal lobe area.

And the ever-present ringing is still at a higher level.

I love these days.

Ring around the headache, anyone?

bad day - 751

2007-10-16T00:06:00.000-05:00

I was supposed to run errands yesterday.

Instead, I got a migraine.

I got to take my nasty-tasting Maxalt-MLT and stay home and rest.

At least I caught it early and didn't have anything that absolutely had to be done.

Today I do need to go get hubby's meds and the new lenses for my glasses and pick up a few groceries but that's about it.

Now I have that hangover that Maxalt gives me and I feel like I could drink a lake.

I need to go to bed and get some more sleep. I can't type worth beans, anyhow.

day 744

2007-10-08T10:26:00.001-05:00

So I trudge along, waiting for the day I see the new doctor.

I hang on and take my medications and try to stay on a relatively decent schedule.

I do what I can and try to prioritize so I'm not wasting my energy.

That is the most I can ask of myself at this point in time.

day 738

2007-10-02T23:30:00.000-05:00

Well, the increased doses of all the meds combined have mostly brought my pain level down to a 6. That's better than a 7-8. It's amazing how much more I can do with a 6 than I could with the higher level.

Wait...let me quantify that...how much more I can do...when I'm awake.

I sleep away most of the day now and then I'm up at least half the night. It makes for an interesting schedule. Even if I do get to bed I wake up after a couple hours and then I'm done till the next time I get tired enough to go to bed. It's a killer on our romantic life, if nothing else...

I see the new doc in just under 3 weeks. I hope things work out with her. I'd like to get the pain back down to a 5 so I can at least keep the house clean without feeling like I've just run a marathon...and I'd like to care if my house is clean.

Maybe then I could even exercise a bit. That would be nice, for sure.

blast it all

2007-09-21T13:16:00.000-05:00

Darn pain doctor....I really don't like that man.

First off, he tells me that increasing my Methadone dose to 20 mg a day, which he is doing very very very reluctantly, puts me in danger. It's bad for my health. He insists I see a dentist because it can mess with my teeth. That's a new one. I tell him when I have the money I'll go to a dentist. I can't pay for a cleaning and inspection and neglect the house payment.

Then he says I have the WORST case of PTSD and anxiety he's ever seen and asks if my psychiatrist has suggested hospitalization.

Why? Because I'm in so much pain I'm crying again?

Because I'm picking at the sores on my arms like I've done for 35 years?

Because I'm stressed?

No. Really???? I'm stressed because I hurt. I don't hurt because I'm stressed.

I reminded the dork that I've had PTSD and OCD and Borderline Personality Disorder since I was, like 12, and functioned in society on a relatively even keel with it, even managing to raise 3 kids on my own and they all made it to adulthood in one piece. Those diagnoses have NOTHING to do with the fact that I hurt like blazes. I hurt. I need meds so that I don't hurt so much, so I can sleep, so I can function and vacuum my living room and sweep and mop the kitchen and fold the laundry. I don't want to go to Vegas or Mozambique or Paris...I just want to keep my house clean and not hurt so bad I can't spend time with my kids and grandkids.

He then mentions that he may not be the right doc to treat me because he's uncomfortable with such high doses of Methadone. High? 20 mg a day? Come on! This hint wasn't missed. I know where he's heading next. He hasn't said it yet, but I know what's coming the next time I see him.

So I came home and called the doctor of an online friend. This doc is in Columbia, another 45 minutes further from my house, but she is treating my online friend like a real honest-to-goodness person in spite of her pain.

I have an appointment with her on October 22 at 10:15. I'm hoping this lady and I hit it off because I'm running out of options here. I know that Dr. Toad wants me off the Methadone. He still won't give me anything for breakthrough pain but the Tylenol. He, like the neurologist, thinks this is all related to my psych diagnosis...something which, amazingly enough, has not occurred to my psychiatrist, who sees the stress and anxiety as being aggravated by the pain.

So anyhow, for now I'm up to a whole whopping 20 mg of Methadone a day, in 4 5-mg increments. I know...I'm just the druggie of the month here, aren't I?

I'd like to do a few things to give him an idea of how I hurt. First, I'd bash him in the head with a baseball bat a few dozen times. Next, I'd take his family jewels and put them in a couple 2-inch C-clamps and tighten them as tight as I could. Then I'd walk out of the room for about 3 weeks and when I came back, I'd tell him he sounded stressed and suggest maybe he needed to be hospitalized for his psych issues. I'd give him some Tylenol for the pain and tell him anything stronger could have serious detrimental effects on his health.

Yep...there is a sadistic component to my BPD, and when I get mad, it comes out. Fortunately I never act on it...but I do fantasize a lot.

well, that was necessary

2007-09-20T15:07:00.000-05:00

They decided to recommend I stay as my own payee once I shared with them I take care of all the finances in our home and make arrangements for all appointments, repairs, bills, and handle all the banking stuff.

That was what was holding up my back pay, so it should be coming through soon. I hope so because I'd like to get the new garage door and opener taken care of before it gets cold. We also need a tune up on the van, 3 new tires, and transmission service. I want to get the back windows checked to see if we can get the wiring fixed so they will open and possibly get the air conditioning repaired. I still haven't decided if we're giving the van to Abby and Donovan or keeping it. They have the Suburban so they really don't need it but if the Taurus goes belly-up they're gonna be in a fix again with only one vehicle especially with them living out so far. I'm half-tempted to get them a little runaround car and that way Donovan can drive that to work and back, like it or not, and the Suburban can stay with whoever has the kids.

I still hurt, even after 2 weeks on the new doses of Lexapro and Xanax. All they've really done is make me more and more tired to where I sleep at least half of every day away. They also helped me be able to more easily distinguish what was anxiety and what was pain. Great. I guess...

I see the pain doc tomorrow. If he gives me flak I'll be looking up a new physician. I'm just tired of his crap. I know the DEA is all up his butt and I understand the pressure to some extent but I'm a patient in pain and I deserve to be treated like anyone else with a disability regardless of whether or not the disability is one you can see with the naked eye. I didn't choose to have this kind of pain. I don't like being discriminated against, or feeling like I'm being discriminated against, simply because my disability is invisible.

So now it's time to wait on the back pay and decide how to utilize it most prudently. The garage door is important. It's falling to shreds. It's been repaired several times and won't last much longer and opening it by myself causes agony in my head. Either the van needs to be fixed or we need to get something else, and then that will need repairs, I'm sure. We need to winterize the chicken coop. There is so much that needs to be done...it's a matter of prioritizing and deciding what can wait and what needs to be done first.

I wish I could work....this would be so much easier. Twice the income, at least, would make for more to fix and maintain things with...but that's not what I've been given, so I'll deal with it the best I can. At least hubby is here and he helps and supports me even when I don't come to bed at night for days at a time. He's my rock here on earth.

the pain still sucks

2007-09-18T02:25:00.000-05:00

I've been on the increased Lexapro and Xanax for a week and a half now. There's not really much of a change unless you count my inability to stay awake for more than 4 hours at a time. In fact, yesterday I was awake for less than 5 hours. I stayed in the recliner almost all day long. I did get up to care for the chickens, because they depend on me; I went to the bathroom several times because I ate something that didn't agree with me and had dumping syndrome; and that was about it.

My pain is still clear and still at a 7 to 8 most times. It doesn't wake me up, but it's always there when I do get out of bed or the chair for any reason. I think after a while the body just has to rest no matter how bad the head hurts and sleep just comes on.

I go to the pain doc on Friday. I'm hoping he'll give me an increase in the Methadone. I'm not holding my breath but I certainly hope he doesn't expect me to live like this. I have the names and numbers of a couple other doctors a bit further out and if he won't help me I may have to seek a different provider, though the thought of having to start this all over makes me anxious.

Later today we go to the Social Security office to find out what the issue is with my ability or disability to handle my benefits. I thought I was supposed to be getting better, according to my grant letter...now they say they're concerned about my ability to handle my own money? If they want me to play stupid, I will. I can do that if I need to in order to keep getting those checks. I don't like it, but whatever they want me to do, I'll do.

I'm going to ask about my back pay, too. It's been 3 months since I got the award letter and I haven't heard anything about the more than 16 grand I have coming in back pay. We need that money to do some repairs here and pay off a few bills. I'd like to see it before the end of the year. Then, I have to file an amended tax return for last year so we don't have to pay taxes on everything I get in one year, since technically half of it is for last year. One day we'll get the tax thing straightened out. At least the taxes we owed from 2005 are paid in full now and that's not hanging over our heads.

I've started my pain article. I really need to work on it but I need to get the pain in my head under a little more control first.

day 721 - weight gain and clothes

2007-09-15T10:12:00.000-05:00

The forced inactivity caused by my pain, combined with the insomnia and somnolence brought on by the change in my meds and my pain, has contributed to yet another 10-pound weight gain. I am now 50 pounds heavier than I was at my lowest weight. I am frustrated. I was in a size 14 at my best. Today I put on a pair of size 20 jeans for the first time since last spring and they feel like sausage casings. I put them away and pulled out another skirt.

I want to exercise.

I want not to eat so much.

I want to sleep and have energy.

I want to feel like I have a purpose.

I'm whiny and hormone-y and I'm not happy that I'm going to have to buy a pair of size 22 jeans for chores this year. Maybe I'll just do them all in dresses and change after I'm done getting all dirty. Dresses are a lot more forgiving.

Part of the problem is that my waist is not how the clothes-makers feel it should be in proportion to my hips. Either my waist is too big for my hips, or my hips are too small for my waist. If I get the pants to fit the hips, they won't go around my waist. If I get them to fit the waist, the crotch hangs halfway to my knees and I feel like my hips are lost in a sea of fabric.

My brain is not right. The drugs and the stress of knowing they think I'm incompetent while considering me possibly well enough to go back to work in March have really messed with my head. I forget simple things and obsess over stuff that really isn't all that crucial. I dunno...it's just all weird.

day 720

2007-09-14T11:28:00.000-05:00

Yes, I'm still counting. Why? It's important to me.

I got a letter in the mail two days ago. I have to take my husband with me to the local (45 minutes away) Social Security Office next week. Why? Because, according to the judge that granted my disability claim, "You may need assistance in handling your Social Security benefits."

What the heck?

I'm in pain. I'm not developmentally delayed, or insane (at least not obviously), or incompetent. I have psych diagnoses, yes; but those diagnoses do not hamper my ability to handle my benefits any less than they hamper my ability to handle our household finances and make sure the bills get paid on time every month, the car has gas in it, we have food and clothes, and the electricity stays on.

What makes the whole situation ironic to me is that when I was approved, they sent - along with my approval letter - a statement telling me that according to the doctor's notes I may recover from this situation and that they were going to re-assess me in one year instead of 3. Now they tell me they're not sure I can handle my own money, but in 6 months they're going to look and see if they can make me responsible again for the welfare of up to 8 post-op patients at a time for 12 hour shifts?

Does this seem odd to anyone but me?

I think it was the magical 3-word phrase that did it.

"Borderline Personality Disorder."

Frankly, I didn't think that was a recover-able diagnosis. But hey, what do I know? Apparently nothing.

I didn't know you could recover from atypical facial pain, either, since it's not a treatable disease. The only thing you can do for it is manage (what a joke!) the pain. That is possible if you can find a doctor un-afraid enough of the DEA to give you enough medication to function on a relatively decent basis for more than 2 or 3 hours a day.

I have to stop driving. I almost went off the edge of the road several times today. My concentration is impaired. I don't know if it's the increase in the Lexapro and Xanax or the pain. What I do know is that I won't put the lives of others at risk to salvage a little of my remaining independence. It's not going to happen.

I'm frustrated and the words are running around my head going 95 miles an hour and they won't slow down enough for me to make sense out of them. I was going to write something that meant a lot to me when the thought occurred to me earlier but now I couldn't remember it to save my life.

Does this mean I'm getting better?

day 716

2007-09-10T22:40:00.000-05:00

The Xanax and Lexapro in the higher doses have made the sleeping issue worse. I honestly think I slept half the day away and I wake up as tired as I was when I went to sleep.

I think the ringing in my ears is getting louder, too, which the Lexapro can do. I wonder if it's going to come down to a choice between a slightly better mood with louder tinnitus, which will honestly put me in a worse mood because it's so irritating with my already-acute hearing, or just dealing with the anxiety and compulsive behavior.

This would be easier if I wasn't allergic or sensitive to so many things, but I am, so there we have it.

Next Friday: pain doc. I called for a refill on my Methadone today. I just hope they don't do what they did last time and forget to mail it out.

I just wanna not hurt.

day 715

2007-09-09T01:53:00.000-05:00

I'm awake again.

I have insomnia again.

I hate this.

I cut out two maternity tops for Abby and a dress for me and now I'm sitting here hurting and wishing I could sleep.

Oh and I changed the code on hubby's blood sugar monitor because he didn't change it with his new strips and I need to find out where to get control fluid for it.

Ouch. There's nothing more I can say.

day 714

2007-09-08T15:10:00.000-05:00

I'm not sure if it's the Xanax or the Lexapro but I can feel the pain more clearly now if that makes any sense. I also feel more relaxed but the lessening of tension makes the pain more obvious and I just flat hurt.

Hubby took me to WalMart to get my medicine. I'm not sure if I'm safe driving. Probably not.

I'm still dozing off at every opportunity but I did manage to get a baby gown done this morning and the cap to go with it. I picked up Universal needles while we were at WalMart because the regular sharp ones don't work very well and my thread kept busting.

2 weeks till I see the pain doctor.

day 713 - my visit with the shrink

2007-09-07T19:14:00.000-05:00

He looks at me and says..."You look pale. You okay?"

I'm like, "Um, no. I feel like crap and have for almost 2 months. I'm picking at my sores almost non-stop and eating like a horse and I can't sleep unless I need to stay awake. I hurt."

He said, "I thought so. You don't look so good."

We're increasing the Xanax so I take .25mg in the daytime and .5mg at night. I had just been taking the nighttime dose.

The Lexapro taken 20 mg in one shot gave me newer, bigger headaches, so we're trying in 10 mg in the morning and 10 at about 2pm. I told him after 3 days on the couch in misery I cut the things in half and only took 10 and he didn't have a problem with it but he's hoping if I can tolerate the increased dosage it will help with the compulsive behavior.

I think, because I told him I was worried about the pain doc telling me he wouldn't increase my Methadone dose and how I was hurting, he's gonna call them and put in a word for me. He asked for the name again. He's the doc that wrote the nuts letter that got my disability approved.

Once in a while we come across a doctor worth his pay and this is one of them. He's never doubted or questioned the validity of my complaints and he listens to me.

In spite of still feeling like poop, I am glad I went today. I needed a little boost of confidence.

By the way, the broccoli cheese soup at Ruby Tuesday's is nasty.

day 712

2007-09-06T00:05:00.000-05:00

I'm still struggling with the pain and not being able to sleep yet being desperately tired. I do sleep in the daytime, nodding off in the middle of talking to one of the girls or checking emails.

I do hope that the pain doctor will be amenable to increasing my Methadone when I see him again. I really don't even like to ask but I can't live like this. I can't make plans or anything.

I don't have much else to say at this point but I wanted to make an entry, at least.

day 705

2007-08-30T00:44:00.001-05:00

Lord. My head is killing me again. The pain level is still high and nothing I do lowers it for more than a couple of hours. Now the sleeplessness is back, too.

I don't know how people who hurt more than this make it. It about drives me bats.

My concentration is affected. I'm concerned that if they don't get my pain under better control I'm going to have to hand over my car keys and stop driving. I'm worried about getting in an accident because I have trouble focusing and paying attention at times.

I can't believe that they say I should be able to work like this. I know we have a review in March already so I'm writing everything down. This way I have documentation. Maybe I should leave the spelling errors in as well, only my OCD won't let me. I'm fighting horribly with the keyboard tonight. I can't seem to get my fingers on the right keys no matter what I do. Thank goodness for spellcheck.

I can't stay online long anyhow...the screen light hurts my eyes.

All for the best, I suppose...

another migraine - day 695

2007-08-22T21:42:00.000-05:00

had to take Maxalt again today. is it all starting over?

day 692

2007-08-19T00:22:00.000-05:00

Well, it was bound to happen.

The pain got to an 8-9 and stayed there. I took Maxalt. I took E.S. acetaminophen. I laid down. I tried to sleep. Nothing...nothing....nothing...

So I woke hubby up and we headed to an ER much further from our home but one that I was fairly confident would treat me like a person and hopefully give me what I needed to break the cycle.

They were kinda slow, but that's because they were busy. They're starting up with another new computer system, this one for charting, and it takes time. Add to this my massive list of meds and allergies and diagnoses and it just takes time.

They were gonna hook me up to the heart monitor - everybody gets that - until I reminded the tech I'm allergic to adhesive. He hadn't looked at my bracelet, obviously.

Blood pressure was like 144/90. Pulse was a little high.

They put me in a back room, quiet and far from the desk. They didn't holler in the room, and the doctor was even quiet and very kind. He asked me what was up, and what we had found to be effective when this had happened in the past. I told him, and he said, "Okay. We'll get it for you."

I was almost shocked. No arguing, no counseling, no negativity at all.

The nurse, amazingly enough, asked me if I was allergic to either Dilaudid or Phenergan after looking at my sensitivity/allergy list to make sure I wasn't sensitive to either one before she gave the meds.

So into my butt went 2 shots...2mg Dilaudid, and 50mg Phenergan. They aren't compatible so it has to be 2 shots. By then I didn't care. I just wanted to stop hurting.

10 minutes later I still hurt, but I didn't care so much.

It was another 10 minutes or so and they sent us home.

No hassles, no grief, no implying that I was drug-seeking or that the problem was all in my head...just the shot, and the paperwork, and discharge instructions, and I was on my way.

I am writing a letter to the hospital and a thank you card to the nurse. I was treated with dignity and respect and kindness and I needed that today. It has started to restore my faith in the system.

Now I'm going to bed.

day 691

2007-08-18T04:51:00.000-05:00

Still far too much pain.

Still no relief.

Got hold of the doc's office; they hadn't sent the script for the Methadone out yet...and hadn't done anything about the Maxalt, either. They called the Maxalt in and put the Methadone script in the mail yesterday. Guess it was overlooked. Kinda interesting considering the calls were made on two different days 5 days apart. Someone isn't doing their job.

May have to go to the ER if this doesn't stop.

I hate that thought.

day 689

2007-08-16T18:38:00.000-05:00

I called on Monday for my Methadone refill and it still isn't here.

I called last week for a Maxalt refill and it isn't here, either.

I'm getting upset.

I hurt so bad I could scream. What can I take? Nothing. It totally sucks.

I hate this.

ow day 687

2007-08-14T05:18:00.000-05:00

My head has been bad for almost a week.

The pain level is once again a 7-8 even with the meds.

I'm so sensitive to light and sound even the ceiling fan about drives me crazy, but I have to have circulating air or I feel like I'm suffocating.

It's that right side intense pain again. I just can't get rid of it.

I'm almost to the point of heading to the ER and asking for drugs.

If I do that, though, it won't be the ER closest to us. They're downright rude to me there.

Besides, I don't have a way to get there. No vehicle.

Guess I tough it out.

I need to reschedule my psychiatrist's appointment. It's for 11 tomorrow and the temp is supposed to get up to 103 with a heat index about 110 and we have no A/C in the van. I'm not sure I can tolerate that heat in the pain I'm in. Maybe they can get me in next week. If not, I'll figure something out. Depending on when JR works maybe he can run me up there if I give him gas money. He wouldn't mind, I'm sure, especially if I buy him lunch, too. That's a good way to bribe a single guy...food.

Gotta discuss this with the pain doc when I see him again. The pain issue has got to be under better control.

whacked

2007-08-10T12:48:00.001-05:00

My pain level and meds and everything are all whacked and spazzed out because Kenny has been sick. I've been taking tylenol with every dose of Methadone for almost 3 weeks to keep going and do what has to be done.

I'm glad the poor kid is out of the hospital now. Things in my daughter's familly will get back to almost normal and I can catch up on my rest. Being tired makes the pain worse.

This weather sucks, too...it's not helping my head one little bit.

day 657

2007-07-25T22:36:00.000-05:00

I was approved for disability going back to October of 2005. They have a mandatory 6 month waiting period so I'll be getting compensation starting from April of 2006. I won't get the back pay right away but it will come. First I'll get a check for June and then we'll get the back pay in either one lump sum or in a few split up payments. I'll be getting money every month on about the second Wednesday of the month, directly deposited into our checking account.

This is a Godsend. We've been so tight on finances it's been painful. The extra money will enable us to get the rider mower fixed, get a little second vehicle so one can be here in case I need it, we can fix the garage door, and several other things we've had to let go because we just didn't have the financial wherewithal to do the stuff that needed to be done.

Once things are caught up and bills are paid we're going to start adding a few hundred dollars a month to the mortgage payments so we can pay it off early. If I can put an extra $500 a month into the mortgage we can subtract $6K a year from the principal and eat away at the interest we have to pay as well, which means we could conceivably pay off the property in less than 10 years. That would be 14 years early. That would be darn nice.

The pain has been horrid the last few days because of the stress I'm under with Kenny being sick and the weather and all kinds of crap including not nearly enough sleep. I had to take a Maxalt the other day while I was at the hospital and then had to hang out for 8 hours or so until I was safe to drive home. What a mess.

I need to tell the pain doc when I see him that I need something stronger for breakthrough and that I need the Methadone dose increased. I can't live like this for the rest of my life. I need relief from this pain. It's messing with my life way too much. I don't ask to be pain free, but I think to expect me to live with the pain at a level of 5 all the time is unrealistic.

We'll see what happens. He may refuse. I can only do what I can do.

argh

2007-07-21T15:08:00.000-05:00

I have the flu or some other godawful virus.

I've had a fever for going on 5 days.

I sweat, and chill, and chill, and sweat.

I don't feel like doing anything but sleeping, and then sleeping all day leaves me sore and up all night.

I can't wait till this junk is gone and I'm back to just hurting again.

Kenny has had it for 10 days now. I think I got it from him. The thought of 6 more days like this makes me want to scream.

It's a sad place to be when you just want to feel your normal bad...but that's where I am.

never-ending - day 649

2007-07-17T22:32:00.000-05:00

I've made an interesting observation.

For people like me, who are in pain all the time regardless of activity or inactivity, light or dark, meds or no meds, sound or quiet, touch or isolation...

It becomes possible, after a while, to participate in limited activities that were out of the question a year ago.

It's not that I hurt less...it's that I've become so accustomed to it that on certain days and at certain times I can function past the pain on a limited basis as long as I know it's short-term. I also need to know I can decompress and rest afterward to recover.

Case in point:
The lawn.
The rider mower bit the big one.
We have 4.2 acres of land.
Hubby is working 60+ hours a week to pay the bills and keep us in drugs and such. He cannot come home after working that long in an un-air-conditioned factory in the mid-Missouri humid dripping wet hot summer and spend 3-4 hours mowing the lawn to keep it from turning into a prairie.
It hurts like hell to go out there and mow, yet, in the past couple weeks, I have done over 1/2 of our lawn with the gas-powered push mower.
I'm exhausted.
I'm dead on my feet.
But it's almost done, and I don't have to worry about my man being half-dead and falling over somewhere in the middle of his job and me being left alone.
Yes, I still hurt. I'm still miserable and I have tension headaches on top of all the other headaches and I hate it because I get eaten by bugs and sunburned and sweat drips into my eyes and I stink.
However, this is what we have to do until we have the money to either replace or repair the rider mower, and that won't be any time soon.

Anyhow, it was interesting to notice it.

Pain level - 7-8 most of the time unless I take a day of doing nothing; then 5-6.

Acetaminophen - 2-3 times a day, 2 extra strength = 1000 mg twice a day at least. Bye bye, liver!

I'm going to try to find a PCP who will be willing to work with me on the pain meds. Maybe one of the newer docs out in this area will do it. They're not new docs, just have a new office in the next town over.

Eyes hurt. Head hurts. Body not as sore as it was last week but my right hip still is not happy with me.

day 644

2007-07-12T23:01:00.000-05:00

I've tapered off the higher dose of Lexapro and back to the old familiar pain instead of the new discomfort. I'm not sure it's better, but I can deal with this. I'm also back to taking acetaminophen twice a day most of the time. That stinks.

My mood is worse, but the better mood wasn't worth the increased pain. I'll adjust. Part of it is hormones, too -perimenopause combined with PMS can really be a bear to deal with.

It's been a rough week pain-wise. I'm having a lot of occipital discomfort this week and my eyes just ache and ache and ache.

I'm not sleeping worth a darn. I'm up most of the night and then out most of the day, which interferes with most anything productive I could do in the daylight hours...not that I can enjoy them much, anyhow...

I hate to moan but I'm miserable.

I'm entitled once a month, eh?

day 639

2007-07-07T03:53:00.000-05:00

I dropped down to the 10mg dose of Lexapro on Monday. While the extra head pain is lessened and the ringing in my ears is fading back to normal, I'm also noticing a change in mood. I'm feeling melancholy. I'm not thrilled with that but I'll get used to it.

At least I'm not eating Tylenol like I was...

I should be hearing this month, I hope, about the disability. I do hope we don't have another fight on our hands.

Time for a nap.

day 634

2007-07-02T06:59:00.000-05:00

That's it.

Tomorrow I start back on the 10 mg of Lexapro.

I'm not going to stay at this dose. It's not getting any better; in fact, it's getting worse. I simply am not tolerating this and I'm not going to make myself do it any more. I gave it 2 weeks and that's what I promised.

Back to the drawing board...

day 629

2007-06-27T13:38:00.000-05:00

The head pain is worse.

It's a different kind of headache, one I'm not used to. It's almost like a tension headache.

The ringing in my ears is a lot louder than I'm used to as well.

I don't like this.

I'm constipated. I don't know if it's from not moving around as much or what, but it's no fun.

I'm sleeping an average of 14-16 hours a day.

I promised myself I'd give this a full 2 weeks after I started noticing a change before I gave up on the higher dose.

Making it to next Tuesday could prove to be interesting.

Even doing simple things like giving the chickens water and food takes all the energy and motivation I have. The dishes pile up in the sink. The carpet goes un-vacuumed. Laundry sits in the dryer for days.

This is not good.

Not to mention the fact that I haven't noticed one positive effect from the increase in the Lexapro...not one...

day 627

2007-06-25T13:30:00.000-05:00

Okay...it's been almost a week since the higher dose of Lexapro really kicked in.

I still have increased ringing in my ears.

I'm getting a few more headaches than normal, and they're of a different quality.

I'm dead dog tired.

My hearing is more sensitive.

I had two migraines last week, one on Thursday and another on Friday.

My spelling and concentration suck.

I'm not noticing much benefit from this increase, but I'm going to give it a while longer before I let the doc know and see if I can go back to the 10mg dose instead of the 20mg.

To be honest, I feel like a slug. Everything wears me out faster than normal, which was bad enough. I don't feel like mowing or exercising. Taking care of the chickens is like a herculean effort. I had a sink slam full of dishes twice in the last week and I don't do that kind of stuff, but I didn't have the energy to do them, so I let them sit.

It bothers me, feeling like this, especially since as far as I can tell at this point in time it's not helping any.

However, I will give it a try since the adverse effects aren't enough to incapacitate me.

Maybe it will get better.

I can always hope.

feeling stupid

2007-06-19T23:01:00.000-05:00

The increased dose of Lexapro is really kicking in today.

I feel dumber than a box of rocks.

I dropped a clean washcloth in the toilet when I was trying to put it away. I can't remember words, or things I said, and I sit here sometimes and stare at this screen trying to remember what I came to do.

My typing is horrid.

I hope this is a short-term thing.

I'm also getting dizzy if I get up too soon or too fast.

Hopefully as my body adjusts to the medication it will fade or even go totally away.

Ok. Now I can't make any sense. I need to go.

day 621

2007-06-19T04:30:00.000-05:00

I saw the pain doc yesterday.

He's pleased with how I'm doing. He doesn't want to see me again for 3 months.

He's already talking about decreasing the Methadone. I think he feels like if I lose some weight and get more active that I'll stop hurting.

The stereotype of people with excess weight in chronic pain is ridiculous.

The pain in my head and face has nothing to do with my weight or size.

However, we'll cross that bridge when we come to it.

I'm just glad he didn't yell at me for not going to P.T. I simply told him we couldn't afford it and that I was getting exercise by mowing 2-3 times a week with the gas-powered push mower on hillside land. He seemed to be okay with that.

Today is a rest day...I hope.

day 618

2007-06-16T23:24:00.000-05:00

The psychiatrist increased my Lexapro to 20 mg.

He showed me that he had indeed mailed the letter as I requested, writing it to reflect the SSA guidelines for getting disability for depression.

Now it's just a matter of waiting for their answer.

I've been mowing a lot. Our rider is broken and we need to use the push mower until we can get it fixed. I do an hour or so two or three times a week. I got a bad burn earlier this week so I had to stay in for a while and then this morning I went out for almost 2 hours. I've been taking more acetaminophen due to the headaches from the sun and increased activity. Still, it has to be done.

I'm hoping the Lexapro will help a bit more with the pain.

I see the pain doc on Friday.

Other than that, it's pretty much same old same old.

day 616

2007-06-14T05:03:00.000-05:00

I had a mini-meltdown last night.

I'm just so tired of being sick...it frustrates the heck out of me. I used to be able to go, and do, and work, and do more, and I was happy and felt productive and liked my job...

Now I feel...yuck. I'm tired almost all the time, and I am always always always in pain, and I'm tired of it. I'm tired of the pain doc thinking a 5 is an okay pain level to live with all the time. I'm tired of hurting and not being able to do things because I hurt.

I'm just over it all right now.

I'm glad I see the shrink tomorrow. Maybe he'll up my Lexapro. Maybe that will help.

One can always hope.

day 613

2007-06-11T23:04:00.000-05:00

It's another one of those pain days....

My head registers every stimulus as pain in addition to whatever the stimulus is...sound, movement, light, touch...

I hate this.

I hate more that I can't get enough medication to bring it down a little without feeling like I'm giving away half of my life.

I'm tired of living at a 5 or worse almost all the time.

I'd just like to be close to normal again...

But that isn't going to happen, is it?

day 608

2007-06-06T12:43:00.000-05:00

I try to remember to write in here at least once a week.

Sometimes, though, it's more redundancy than anything else.

It's been about the same for a month now. I get tired, and I try to get up and do things like the pain doc told me to, but then I get more tired if I don't take a nap, and I'll fall asleep sitting up. I can't be up all day every day. My body just won't let me do it.

I see the psychiatrist next week. Hopefully he'll increase my Lexapro and it will help some with the OCD things I struggle with.

I'd like to do more outside but I'm almost afraid to. It makes me so tired, and then my head...and it's just not smart with the pain I'm in...but I might do some mowing anyhow.

After all, I'm gonna hurt whether I do it or not...

day 602

2007-05-31T05:21:00.000-05:00

I see the psychiatrist tomorrow. I'm hoping he'll increase my Lexapro so when I see the pain doc in a couple weeks I can tell him it's been done and he'll be happy.

I know the pain doc is going to have a fit that I haven't done the physical therapy but we just haven't had the money to do it for the 4 weeks he wanted it done for. I don't know what to tell him other than we can't afford that much right now. I was thinking it was going to be like 3 visits, not 12...and that's $180 we don't have to spare at this point in time.

I am getting my exercise most days, just not walking like he wanted me to. I care for the chicks, and garden, and stuff like that. I'm out there almost an hour most days and some days it's more than that.

I printed out an information sheet for Norbert on borderline personality disorder yesterday so he can understand about the picking thing. It's hard to explain to people that I can't just stop picking at the sores. It's a compulsion. It's something I find myself doing without thinking. Between the OCD and the borderline, I'm actually almost surprised it's not more than just picking. The sores are getting better though...it's just taking time. The more time I spend outside and doing stuff, the better it gets. They used to heal a lot faster when I was working but I'm not doing that any more so I pick more.

I dunno...it's frustrating for me, too. I don't like how it looks. I'd like to just say I'm gonna stop and have that be that, but it doesn't work that way. Maybe the increased Lexapro dose will help.

I'm trying not to sleep so much, but when I do more, it makes me tired, and I even fall asleep sitting up. The pain doc wants me to get up and do stuff when I feel like that, but between the insomnia and the meds sometimes I just can't control it.

I'm waiting to hear from the Social Security people...that might take till mid-July. I'm just hoping it's good news. I hate the thought of having to fight again to get the disability. We need the money. Where we sit now, if something goes wrong and it is going to cost more than a couple hundred bucks, we're screwed. That worries me.

Oh well...

day 593

2007-05-22T04:18:00.000-05:00

I'm in pain today.

I started the morning way too early, feeling like someone beat me up. My muscles are sore. The right side of my head hurts. It's not a migraine hurt...it's an ow kind of hurt, for lack of a better way to explain it.

You know how if you close your eyes tight and squinch them you hear that weird sound? I get that sound involuntarily when I have pain like this. I'm having it this morning and I had it last night.

I've already had a gram of acetaminophen and my Methadone. I'm hoping it will kick in soon.

I was going to work outside a bit today. That may not happen.

I don't like days that start like this. They usually get worse.

day 590

2007-05-19T05:30:00.000-05:00

The ringing in my ears, though it never goes away, varies in intensity and volume.

This has been a bad week for the ringing.

It's been loud and obnoxious more often than not, sometimes to the point of distraction.

Usually the intensity is related to how much stress I'm under, how tired I am, or how much pain I'm in. However, the disorder being what it is, nothing is written in stone except it will be there. Variables are...well...variable.

I'm finding it hard to wear the $40 stupid sunglasses I bought that are supposed to fit over my prescription lenses. See, the problem is, my head is shaped weird, and the fitovers end up resting right on top of the frames of the glasses, and it puts pressure on my head, which is not a good thing. I guess what I'm going to have to do is try to save up enough money to get some cheap prescription single vision sunglass lenses in a cheaper frame.

Now to figure out what to sell or pawn to come up with another $100 to pay for them...

I hate listing on ebay because people want rock bottom prices...not even enough to cover the cost of the fabric for the things I make...and then I have to pay for the listings even if the things don't sell. The other sites...well, I'm not sure; they're still relatively new and I'll have to scan them and find a niche not full yet and make up a few things I can put on there quickly that will sell. They are cheaper - one costs $0.20 to list and then they get 3.5% of your sale price, and the other one is free. That's better than ebay.

I just wish people would realize that there's a difference between hand-crafted and homemade. Homemade is good, but it's for cookies and pies and breads and stuff your kids make for Mother's day. Hand crafted means you put thought and a lot of time and consideration and care into the things you're making, and they aren't necessarily cheap to make. Most times when I sell these things I'm just making enough to cover the cost of the fabrics and then make like $1.25 an hour. It's silly. If we lived where there were little boutiques I could take them there, but we don't.

Some day we won't have to choose between the bills and the groceries. I still haven't got the resources for physical therapy. I know I'm going to catch heck for it, but after we paid what we had to pay this week we have no money left until the next paycheck. I have enough for 40% of the mortgage and that's it. Next week we need the other 60%, more gas for the van, and food...and that's gone.

I'm hoping the pain management doc doesn't penalize me for not going yet. I just can't do it when it takes food out of our mouths or puts us at risk of having the utilities shut off. It doesn't work that way. And I'm NOT putting it on the credit card. Hopefully when hubby gets his retirement check from TWA in two weeks, after we pay on the credit card again and get the septic tank pumped, I can pull enough out of the budget to pay the $180 it's going to cost for 4 weeks of P.T. We get an extra check in June so I might be able to do it, barring unforeseen complications. We've had more than enough of those lately for 4 couples.

day 585

2007-05-14T10:27:00.000-05:00

I woke up with a headache today.

I was thinking it was a garden-variety headache because I was outside too long this weekend, so I took some acetaminophen.

An hour later I knew better, so I took a Maxalt.

It knocked me out as usual. I woke up feeling much better so I went out and tended to the chickens. I watered the garden and weeded it, too. I'm hoping this counts as exercise. I sure think it does...I come in sweating and my heart rate stays up for a while.

I remember the days of just migraines, as silly as that sounds, and I wish for those days again...at least I had a break between the pain instead of it being my constant companion.

Of course, it could be worse...so I'll stop fussing.

day 584

2007-05-13T04:27:00.000-05:00

I finally took the time today to go to the Social Security website and check on how long it may take to find out about my hearing and the results.

They can take up to 60 days to make a decision.

They can take up to 30 days after that to send me a letter telling me what that decision is.

It's amazing how they can demand things in such a short time period from people filing for disability and then they can take the time they want to act on it.

I bet it would be different if it was them waiting to hear on benefits that would change how they lived and if they could pay their bills and obligations without running out of money before running out of month.

Oh well...

Yesterday my head hurt a bit more than usual in the morning but some acetaminophen helped calm it down. I actually felt up to sewing a bit. I got the dishes caught up and went grocery shopping.

My kids may come to visit later on today. I need to remember to vacuum the living room and put stuff away so the little ones don't get into things.

day 577

2007-05-06T09:16:00.000-05:00

I've pretty much settled into my 3-times-a-day Methadone routine now.

If I know I'm going to be doing a lot of stuff in a specific time period I take some acetaminophen to keep from getting a bad headache and that works pretty well in addition to my meds.

However, this week I did have 2 migraines...one on Tuesday and one on Friday. The Maxalt did the job - that and some sleep.

Hopefully next week things will be stable enough financially that I can start going to P.T. Last week was tight, and this week I blew a tire and we need a new rider mower belt. We have to get the essentials first. Between that and all the meds it's a stretch sometimes to get it all done before the money runs out.

I'm hoping to hear soon about the disability. We sure could use the extra finances.

day 573

2007-05-02T12:08:00.000-05:00

I forgot to take my 4 am Methadone today in spite of setting the alarm and having the pills in the pill boxes.

By the time the alarm went off at noon, it had been 16 hours since I'd had a dose.

I hurt.

It's my own fault...but still, I hurt.

This will take a while to get under control again. I think maybe I'll take some more acetaminophen to give the drugs a little kick.

I've never forgotten to take it before.

There's a first time for everything, I guess...

day 571

2007-04-30T16:46:00.000-05:00

I felt good enough today to sweep and mop the kitchen floor using the real mop instead of a Swiffer. It really needed the work. The grandids spilled koolaid on it a couple weeks ago and it was sticky and had other spots from where my son spilled Gatorade when pouring it yesterday so he could have a drink while he and hubby were out taking a tree down in the yard.

I also did cleaning #1 on the side shed fridge. It's old and the people who gave it to us obviously didn't clean it after they emptied it out and there was mildew all over the seal and stuff. It is going to take another good cleaning before I can plug it in and then hubby can keep stuff to drink in it so he doesn't have to come inside when he's outside - it saves on power and that way his cold drinks are out there where he is.

The Methadone dosage is definitely better at 3 times a day than it was at 2. I can feel the difference. It's been months since I've felt up to doing 2 things in one day. Usually it's one or the other, but not both. I'm sleeping better, too. Actually, I'm still sleeping more than normal since it's only been a week that I've been on the increased dose, but I'm hoping that will improve with time. I know it takes a while to adjust.

I'm still waiting to hear something, anything from Social Security. I know it takes time. They're really slow. I'm hoping when the news arrives that it's good. I could use some good news about now. We could use the money, too. We have a lot of stuff around here that needs to be fixed and that money would surely help.

day 567

2007-04-26T21:25:00.000-05:00

Today I had to take a dose of Extra Strength Acetaminophen for the first time in 3 days. I think the increased dosage of Methadone is really helping.

I start PT next week for 4 weeks, 3 times a week. Finding the money should be fun.

Otherwise, it's pretty much the same old same old.

day 564

2007-04-23T11:03:00.000-05:00

I saw the pain doc this morning. He upped my Methadone to 5 mg every 8 hours instead of every 12. He wants me to go to bed earlier and stop taking naps. The thing is, if I go to bed at 8 when he wants me to, I won't get to spend any time with hubby in the summer because he stays out till it's dark. I think I'll pretty much keep doing what I'm doing. He won't know anyhow.

He poked and prodded and said I need to see a physical therapist. I told him the one he wants to send me to is too far away and I can't go that far. There's one in Warrenton, about 20 minutes from here, and I can go there if he wants me to go to PT but I'm not driving an extra 40 minutes 3 times a week. Not only is it a bit more of a drive than I can make alone, but it's too darn much gas and we're not rich.

He forgot to give me a script enough Methadone for 2 months so I'll have to call for a refill in 3 weeks. He also forgot the PT referral and after waiting 10 minutes I just went up to the desk and told them to mail it to me.

Now I have a headache from the poking and prodding but it's okay.

I think I'll take a nap.

day 562

2007-04-21T09:14:00.000-05:00

I went and saw the chiropractor yesterday.

She is very good. She put the stimulators on my upper back and neck and then did a lot of adjusting and pressure point stuff. I could feel the muscles relaxing while she worked.

The only thing I think wasn't a great idea was the ultrasound on my neck. I think it aggravated the occipital nerve she was trying to un-irritate.

However, I'm going back next week. It helped me relax enough to sleep really deeply last night and I just needed that break.

Today my head hurts a bit more than normal back where she did the ultrasound so that's why I think maybe doing that wasn't such a good idea. The rest of it was great, though.

By this time next week I should have my new glasses and my eyes won't be quite so tired. That should help, too. What didn't help was the cost, but I needed them, and we had a bit of extra money so Norbert agreed I should get them. I also ordered another pair of the larger Fitovers like the ones he already has so we'll both have a pair that fit us. Mine are just too snug-fitting; they pinch my head and it hurts. It ended up being like half the cost of adding Transitions to the lenses or getting prescription sunglasses and I like how they block the UV light on the sides, too, and have that top thing. It really helps when it's bright outside.

day 559

2007-04-18T05:00:00.000-05:00

My right eye is very sensitive to light right now. It's been worse the last couple days than it has been in a long time. The light from the TV hurts it. Regular lamp light hurts it.

I need to get a glare reduction thing for the computer screen since I can't sit here long, either.

I'm hoping maybe when I get my eyes checked next week and get some new glasses it will help. I know I need new lenses. These don't work as well as they used to when it comes to smaller print and things that require intense focusing.

Other than that, everything seems to be going as usual. The Lexapro is still making me very tired and I end up sleeping half my days away. Still, I have enough energy to keep the dishes done, do some cooking every few days, and keep up with the laundry. I guess it could be worse. I'm hoping with time my body will adjust to the medication and it won't knock me out so much. It's hard to deal with falling asleep sitting up a couple times a day.

I'm not needing the acetaminophen as often and that's a good sign...or maybe I'm just adjusting to that pain, too. I think maybe if I took it a little more often the pain level wouldn't get as high as it does. I know the pain doc suggested I take it on a semi-regular basis but I don't want to stress my liver out.

I'm waiting now to hear from the Social Security people about my disability. I'm hoping the doc got the letter in on time and I get approved. However, just in case, I've scoped out a local lawyer who does disability and I'll retain him if I have to.

I guess that's it for now.

day 556

2007-04-15T01:40:00.000-05:00

I'm up again.

I think the Maxalt I had to take at 11 for my migraine interfered with the Xanax I take to help me sleep.

While I was up I figured I might as well use up the brown bananas so I made hubby some banana muffins for breakfast. He's doing overtime again today for double pay.

I hate that he has to work so much but with only one income and the bills that have to be paid he feels like he needs to do all he can when they offer it to him. This week's paycheck was pretty skimpy due to the holiday and no Saturday overtime the day before Easter so we're counting our pennies. Living paycheck to paycheck is bad enough but trying to come out of the grocery store having spent less than 2/3 of what we usually do is hard all around. There are things I like to have here for him - and for me - that just didn't happen this week.

I should hopefully find out soon if I was approved for disability. That money would help us a lot. We could get ahead a bit on the mortgage so once he retires we won't have that payment to worry about. Since I know we can live on what he makes, I can put most of my check on the principal and bring it down a lot faster than making the minimum payments does. Most of that is still interest. Every extra dollar taken off the principal lowers the interest payment and shortens the life of the loan. If we're wise I can pay it off by the time he's 70, at least...and he probably won't retire till then anyhow. Maybe I can do it sooner than that. It all depends on what happens in the meantime, like car repairs, house repairs, and maintenance bills. Owning a place, even a mobile home, can be expensive.

While hubby's at work today I'll probably be catching up on my sleep. The insomnia and consequent daytime sleep is frustrating because it gets me all upside down on my hours. However, it is a small price to pay for the nerve pain relief I get from the Lexapro.

I'm hoping to order a couple books on borderline personality disorder to read and study and hopefully learn from. One is a workbook on what is called cognitive behavioral therapy - it helps you learn how to change how you see things that threaten you and put you in a bad place mentally, and by that you can change your reactions to them. There are no support groups out here and no therapists in a reasonable driving distance that have experience with BPD so I guess the best thing to do is go it on my own and get what feedback I can from my psychiatrist. Thankfully I'm motivated to do something about it. I can't just sit here and do nothing. It's not in me to be that way.