I'm not a jealous person. Fuck, we had threesomes in the start of our relationship
Tell me more.
*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.
I wish i could give you a big hug. <3
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.
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!
You have lovely eyes.
PS - curious, you mentioned dermatology - are you having symptoms with your skin too?
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!
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.
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.
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.
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.
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.
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.
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.
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?
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!
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.
*hugs* to everyone.
Feeling much better today--slept on the couch last night b/c I fell asleep watching old episodes of NCIS and didn't feel like getting up when I felt the sleepy coming on, so I have a crick in my neck, but something about sleeping in "new" surroundings is neat.
And I wish I had something I hated enough to shoot at because that WOULD be a mood buster. However, I only hate molestors and child abusers that much, and I'd be pissed to spend time in jail for ridding the world of that trash. Sigh. So I guess for now I'll depend on shower sobbing, finding people to argue with, and comedies... lol And of course posting around here, which is sure to bring on a smile. :)
I hate crows. They caw in the morning and wake me up. I wait till I have a mood like that and then I give them both barrels when they take over a tree. Nothing like a Double Barrel 12 gauge scattering crows to cheer me up.