Saturday, December 11, 2010

man, it's been a while

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.

Friday, August 27, 2010

Day 1791 - Oh, help.

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?


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.

Saturday, July 03, 2010

not so bad....

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.

Sunday, June 27, 2010

Day 1729 - 3am and still awake

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'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'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.

Monday, June 07, 2010

Med changes and side effects

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.

Monday, May 31, 2010

Trying to lessen the pain

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......


Friday, May 14, 2010


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.

Sunday, March 14, 2010

Applying for disability

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.

Thursday, January 21, 2010

day 1572 - a new year

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.