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.

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?

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.

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.

Ouch.

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.

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.

pain, pain go away

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.

day 963

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...

addendum to the great sunglasses search

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.

day 840

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.

let me describe this while I can

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

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.

2 days with little sleep

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 775

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 757 - nervous

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

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?

day 738

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

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.

the pain still sucks

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 716

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 714

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.