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This is where it all hangs out

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ScribbleMuse
, April 20th, 2010 at 03:57 AM (698 Views)
This is one place I think I can share with people (even though you're all online, I believe in you! lol) that my real-life friends and family wouldn't easily find. And if they do, they can suck up anything they don't like.

Today I can type, but tomorrow I may not be that lucky. Hopefully I will be, because it is a good indication that I can write, and there are some exams coming up, and a dissection in zoo lab tomorrow. Yet the pain and fucking whatever-it-is may quickly debilitate me again, and so I wanted to spill my guts first.

I don't try to bore you, but I know it's always boring to hear about someone's illness. :) But tonight, I'm sitting here and it's 2:30, and I'm trembling and crying and sitting outside in the garage to hopefully keep the numbness going in my fingers long enough to bitch a bit. Basically it's some sort of arthritis, but no one knows what KIND. They'll say rheumatoid, psoriatic, reactive, blah blah. It doesn't run in my family other than slightly arthritic knees, and I've been on a regimen that would cure many mild cancers--a strong dose of prednisone, weekly injections of methotrexate, infusions every 3 weeks of Remicade. Instead of alleviating anything, or even slowing it down, it's aggressively attacking me. In 3 months, between November and February, I have x-ray documentation of bony destruction. I cannot get help from the medical community and have been told that others suffer happily with arthritis, and that I refuse to accept the fate I am dealt.

Which brings me to the bitch part. See, I don't think it's wrong of me to mourn my life. My life as I know it will die with this condition if indeed it is incurable and not even stoppable--and right now with the pain/swelling coming back, I think it is satan himself, and I sure as hell can't stop him since I've almost lost all faith in God as it is.

I KNOW others suffer worse, and don't deserve it. I read this site daily and innocents are brutally tortured every day--I know that and I have cried and dealt with cracks in my own soul when faced with the evil that man can do. But honestly, in the midst of the pain, i am an animal. I've had a baby. I laid in a hospital bed for 2 days with ruptured intestines, and I've come back from a medically induced coma to what I thought was the worst possible pain ever, but this shit is worse. In the last "spell," the only way I was able to get through the day sane is the slow understanding that as bad as it was, as intolerable as it was, the next day it was going to be worse. I can honestly say that this pain is nothing like anything I've ever experienced, and when combined with the utter helplessness (I lost the ability to walk in the last spells--even when I could overcome the pain, my knee would just give out), it's a horrifying existence.

So now I know what a selfish bitch I am, because I cannot be noble with this. I just can't. I try to get through it with the true sympathy I have for others, but I can't help slipping into this feral state of anger and fear and pain eventually. I hate myself then--there is no other time that I feel more dirty as a human than when I am suffering like that. I can see every flaw I have, and then can see just how selfish I am being because I can't stop crying from the pain until the tears just run out, and so the idea of me being a wife or mother is a faraway daydream, and decent humanity in general is way impossible.

Those are the really bad moments, and I am finding auto-prayers coming through a broken faith that please God, not that bad again, please. In the decent moments, I am sad. I do not feel I am unduly depressed, and feel it is normal to face losing every manifestation of your personality. I have not worked since November and the possibility of getting any job, much less in transcription again, is not going to happen. I am faced with being forced to drop out of school--I am barely now passing a couple classes because I have missed so much this semester. Everything I am is expressed in ways that I will lose if this condition progresses, and if I have to live in fear of the next flare. I feel like one of Pavlov's dogs, trembling and unconsciously crying at the first symptom of slight joint discomfort.

so I think it's a really shitty thing that it seems people are pissed at me for not constantly dwelling on the concepts of fluffy kittens who are farting rainbows, while unicorns traipse around dewy meadows, secure in the multicolor shadows of those rainbow farts. When I go to the doctor and beg for help to walk again, and they tell me that I will have to "make different life choices," I feel it is within my rights and a reasonable human reaction to say, "but isn't there anything else we can try? Why are you so sure it's this or that when you haven't run any tests?"

Of course now that I've kicked and soiled the towers of their God complexes, they're pissed at me. At my last visit, I left feeling as though I had been abused and assaulted. He told me I was "choosing to suffer" over acceptance and went on to tell me of the little old ladies who still smile when they visit the doctor, even with arthritis.

My aunt happened to call one day when I was having a paritcularly bad day--I'd fallen the night before in the living room and took 2 hours to crawl back to the sofa. she suggested Paxil and acted offended when I told her that I didn't need to smile like an idiot, but simply mourn my life.

I also realize this is a shitty thing to complain about, but I keep losing weight. I had been at a comfortable 150 in January--I'm 5'8" and carry weight well. Of course I'd had gastric bypass, and so lose weight easily, but still was stabilized there. Yet I'm now 130. I went from a size 11 to a size 6 in less than one semester--had to actually buy an emergency pair of pants when I almost lost mine standing in the gas station. I had gotten to the point that I was afraid I was seriously dying back in February--I deliriously begged my husband to stay awake in case I stopped breathing and to please make sure that he watched me, because the physicians refused to run any tests. :(

So boo and hiss all you want--I probably deserve some because I DO see that I am blessed in a million ways. It's not that I ever forget them, but I'm feeling lately that it's not okay to be sad or mad, even when there is a reason to be and it's a healthy sad/mad. I'll be okay and am not suicidal. just pissed. Pissed and scared. that's not wrong. I won't say it's wrong and will continue to refuse anyone else saying it's wrong, or denying me that right. I can even give in that it's annoying to hear complaints of ill health when it sounds like it's "just" arthritis. But honestly, I am scared, because it sure as hell doesn't seem or feel right. :(

My mantra lately is, "I'm only 30," like that will somehow chase it away. But when I can't walk, and somehow even worse, when I can hobble/lurch/walk, but so badly and so obviously painfully that the fucking walmart greeter man tries to insist I take a wheelchair, I just keep saying, "I'm only 30," like that does anything at all.

Hands are killing me, really going away now. thank you, cyber-demon-friends and acquaintances for indulging my wussiness.
Lisha

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Updated May 2nd, 2010 at 03:21 AM by ScribbleMuse

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  1. TheMeaningOfItAll's Avatar
    Scrib/Lisha--
    You've been on my mind lately. I'm so saddened to read about the pain you've been going through. I believe your reactions are totally normal. Don't go gently into that diagnosis and I would rage at the doctors if the haven't performed any tests to definitively tell you that you do indeed have arthritis. If a doctor's ego can't handle being questioned extensively, then it's time to find a new one.
    It's a hard thing--acceptance of an illness that will be with you for the rest of your life. You have a right to handle it in whatever way you see fit. I would just remind you that in the midst of your pain, you have people who love you.
  2. OMalley's Avatar
    Scribble, I am so sorry to hear what you're going through. I agree with tmoia; maybe it's time for a second opinion! I've been through the AMA assembly line too - I will pm you some free advice!
    I'm sending healing thoughts your way. And it's not wussiness!
  3. OMalley's Avatar
    Now I'm going to get boo'd & hissed - have you considered consulting a homeopath, naturopath, or osteopathic (D.O.) doc? Your insurance probably won't cover it but you might find some relief - I did. If you can get to San Fran, I know an excellent doc there. He's a MD but uses many alternative treatments sucessfully.
    A definitive diagnosis would be nice!
    PS - have you been tested for Lyme Disease?
  4. OMalley's Avatar
    Sorry, I keep thinking of more...Those drugs they've got you on are pretty serious shit to give you if they don't even know FOR SURE what's ailing you. And it's not even working! That's not stuff you want to be on long term (if you can help it).
    "Choosing to suffer!" OMG, that doc sounds like a jackass! You're only 30, why shouldn't you expect & want to be healthy!
    I am officially pissed off on your behalf.
  5. Alf's Avatar
    Here is a second suggestion for a DO. My primary care physician is a DO by my choice. I have found DOs to be afflicted with the God complex much less often than MDs are.

    Pain sucks. I hope you get some answers and some relief.

    --Al
  6. Valasca's Avatar
    Fuck that. Mourn all you want. Bitch, moan, cry, get mad, whatever. You're entitled.
    Would I do that same? Maybe, maybe not. I have never been in your position so I can't say that you shouldn't feel sorry for yourself.

    I am only slightly offended at the Paxil comment. I have been on it for near 10 years and it does wonders for me, but I do have my ups and downs, but that's my experience, not yours, so you are certainly "allowed" to have your opinion on it.

    I am thinking you have fibromyalgia. If that's the case, well, the i DO feel sorry for you because I know what my mother goes through with it. She can literally curl up into the fetal position and cry for hours because of the pain.
    Hell, last week she had SEVERE leg cramps and screamed so loud over them that her boyfriend was sure the police were going to show up at the door to arrest him for domestic violence.
  7. Pete Bondurant's Avatar
    You will only get older.....more cynical. When you finally die.....someday....over six billion people will not even know it. I am fairly certain that there are parasites gnawing away at my brain.
  8. ScribbleMuse's Avatar
    Amazon: I apologize heartedly for the offense, because I'm just realizing how it looked typed out. Actually I have been on it (have been off it for a while in efforts to trim down the medication list I have going). I was just resentful that someone was suggesting that I try to numb out the facts in order to basically get into that happy place where i guess I could stop "choosing to suffer." :) I am a total believer in antidepressants and in ALL psych drugs. I should have been clearer in the fact that it also annoyed me and still does that so many have the facts wrong about Paxil and similar meds--when you need it for the chemical imbalances, it is a slap to be suggested that you take it to "turn that frown upside down." Most people have a very skewed and incorrect idea of what depression and imbalances are, and think that the comment my aunt made was a classic example. So actually I felt offended as a Prozac/neuropsych med advocate, AND as someone who felt that I was being pushed to do whatever I could do to bury the pain and accept the opinion of my "betters," which was the other dimension of the conversation--she thought that I was being disrespectful in some level to the doctors, who she felt I should always defer to. Hope that clears that up, because I feel terrible that it didn't come out right. :(

    I have seen a DO, actually recently. My problem is more the fact that I am seen at Marshfield Clinic, which is like a huge monster. It is the ONLY clinic in the area, and don't let the word "clinic" fool you. Think of Mayo Clinic, or Cleveland Clinic--that's much like Marshfield, and they're growing all the time. It is turning into a horrible experience however--they are all "together" and yet may have never met each other. I think there are 500 doctors at the facility. When I started making appointments outside of dermatology and rheumatology, they simply consulted their medical records, and told me to go back to them, because I wasn't listening. No one wanted to step on toes. And it's not as simple as just finding a new doc in this area. :( Now, however, I have recently started seeing another at one of the very few outside options and I do think he's going to listen; at least run more test.

    As far as fibro, it is not that, though it was considered briefly at first. For one thing, the xrays prove that my bones are deteriorating for whatever reason. I have obvious swellings and deformities (though not true rheumatoid nodules). It always starts with a sore throat of all things, and goes to my joints. I developed a new and obvious heart murmur with the last week of the really bad flare. My blood tests show consistently elevated WBCs, even with all the drugs I'm on. And now, I'm getting a new rash--little blood red dots. So there may be a component of fibro, but it would mostly be something else that is causing this particular flare.

    I am on a zillion vitamins I sometimes thing--because of the gastric bypass I am chronically short on many nutrients, like B12 and recently, dangerously low on D (so we boosted that up in hopes that perhaps that was the cause of this pain--my D level was terribly low). As far as herbal remedies, I don't like messing with them much at this point, because I do know they work well, but that they may interact dangerously with what I'm on, and I do feel that I need it. When I am getting close to the remicade dates, I get worse, so whatever this is, it is something that is T-cell oriented, like lupus, rheumatoid, psoriasis, lymphoma, etc. The meds I'm on are not making it better, but at this point I'm terrified that perhaps they're working better than I realize, and I can't take the possibility of getting worse.

    Pete: You made me literally lol. :p

    Thank you all so much--I think it helps as much as most of the meds I've tried so far just to bitch about it here or anywhere, and get this support (and smiles). I gotta say the morphine during the one hospital admission was pretty kickass stuff, and made me feel probably technically better, but this is pretty good too. I'm doing better today I think, but fingers are giving out now, so I'll shut up. Just wanted to say thanks again.
  9. ScribbleMuse's Avatar
    PS: Regarding the fibro, I forgot to say that it IS a bitch of a condition. for so long docs never took it seriously since it didn't show up on the limited tests available at that time--now thank God people are treating it respectfully, though there are still no answers. It was ranked up there with endometriosis, which was considered the "hysteria disease," something women used as an excuse not to jump into bed with their men. I found all that out before when dealing with endo myself. And BTW, something that I have wondered about after being diagnosed with the fibro that time is that sooooo many women have endo AND fibro, and usually some other rheumatoid condition, or rather, T-cell activation/agitation condition, which they are. Things like lupus, lymphomas, etc. Psoriasis is another one. They used to be thought of as weakness, or hypochondria, and now they've recently developed the technology and knowledge to see the molecular effects and some basic shadows of etiology. It's mostly still a mystery though.
  10. ScribbleMuse's Avatar
    another ps/answer: I did get a lyme test run at the beginning of this nightmare. it was negative. After that, no one would run another test because I was probably turning into a bitch and not easily cured to move on to the next patient. It isn't life threatening (as I was one told scornfully), so get on with life, after of course making those changes, meaning get used and accept the possibility of not walking anymore.

    Now the Tylox is really wearing off, gotta go.
  11. OMalley's Avatar
    There are many reasons for a false negative result on a lyme test - surf it up. Lyme disease can be extremely dibilitating and also life threatening. The symptoms are many, varied, and all encompassing. Some docs are beginning to think the disease is not fully understood, recognized, & diagnosed by most doctors and that it's being under reported & under treated. So it might be worth a second look.
    Good luck! I hope the new doc works out!
  12. OMalley's Avatar
    PS - curious, you mentioned dermatology - are you having symptoms with your skin too?
  13. Pete Bondurant's Avatar
    You have lovely eyes.
  14. Deja's Avatar
    Scribble, I'm so sorry you're going thru such pain and suffering. OMalley's right about lyme disease - worth a few more tests and research, it has multiple symptoms and is very misunderstood. Have they tested for MS? I remember Montel Williams saying he was in such insufferable pain he almost killed himself, and they finally found it was that. I don't know about the bone issue with MS, but it's the only suggestion I have - best wishes to you, I hope they find the problem and fix it!
  15. MC30's Avatar
    oh scrib, im sorry. i hate that you are in pain.
    For one thing, the xrays prove that my bones are deteriorating for whatever reason. I have obvious swellings and deformities (though not true rheumatoid nodules). It always starts with a sore throat of all things, and goes to my joints. I developed a new and obvious heart murmur with the last week of the really bad flare. My blood tests show consistently elevated WBCs, even with all the drugs I'm on. And now, I'm getting a new rash--little blood red dots. So there may be a component of fibro, but it would mostly be something else that is causing this particular flare.
    you need a new doctor. if this is what you have been tested for, and this is the result, you need a new doctor. oh hon, i hope you start feeling better. i hope i hope, but even if you don't, know that there are people out there that wished you did and care...
    i am so sorry you are in so much pain. i wish there was something more i could do but say im sorry.
  16. Nell's Avatar
    I wish i could give you a big hug. <3
  17. ScribbleMuse's Avatar
    *huggers* to all of you. Really and truly, at the risk of sounding sappy unto the point of being stoned, you have all made me feel much better. It helps so much to just talk to you guys.

    I have actually been feeling better since that night I wrote the original blog and the day after. I feel pretty shitty tonight, but tolerable in reference to degrees of past pain. I am supposed to start on a new drug, Stelara. It dovetails with my psoriasis (OMalley--that's why I was seeing a derm). The psoriasis is why they were/are so stuck on psoriatic or rheumatoid arthritis but again, there are so many other symptoms that point away from either. Then again, there are also many symptoms that point toward either. So I'm willing to try anything if it leads us to the best treatment in the end. And who knows--maybe this WILL be the best treatment. I'm pretty fatalistic and easy to please at this point--keep me able to walk, preferably able to type, and we'll all be happy hunky dory.

    Side note: My daughter dislocated her kneecap entirely during her very first softball game. For about 6 hours in the ambulance, the er, the diagnosis, treatment, etc, I had no pain, but lived on pure mommy-adrenoline. Nothing can get you beyond any sort of earthly sensation like the sound of your baby screaming in pain and being unable to help her. I swear those feelings of momma-bear desire to locate source of pain and stop it, while cuddling the cub are all-consuming.

    She is doing well now--as usual in these cases, they popped it right back into place after much hideous and unbearable pain, with almost immediate relief, except for the subsequent swelling and tendon tears. However, no surgery and they think she will be up to normal activity within 6 weeks. (cheer) She has her mother's grace, however, so I keep waiting for her to tumble over the crutches. Can't wait till she can lose them, hopefully in the next week.