The Holidays, Interstitial Cystitis and the C-Spine MRI Mystery

Hi everyone! It's been a few weeks since my last post. Things are going ok. My spirits are holding up, though I do find myself slipping into apathy a lot lately. It's like part of me has said, "I give up!" Whether this is the development of patience, or the breaking of my spirit, I can't seem to tell! All I know is, it's better than the anger and despair I was experiencing before. So I'll take it.

The holidays aren't hitting me as hard as I feared...so far, but that makes me hopeful. I know what I'll be doing for Thanksgiving, Christmas is pretty much planned out, so at least I have that. :) Never underestimate the importance of friends and family to the chronically ill or disabled; if you want to do something great for them, just make sure they are included in your celebrations.

My Dysautonomia symptoms have improved. Palpitations are far more rare. I still feel sick at least half the time if I am fully upright for long, but that's way better than having definite feelings of that every single day. I've been drinking more water, having salt every day, eating potassium rich foods (Raisins, Roasted Seasoned Nori, Bananas. Chocolate covered bananas!)

I'm having way more trouble getting to sleep at a decent hour, which may be what has caused the cognitive dysfunction to return; I'm grateful though, to have had the chance to forget how awful it could be, having your brain twisted in knots as you struggle to try and keep with every little thing, from why you were walking into a room, what you needed to do next on the way out the door, or what you were in the middle of explaining.

I've developed a mean case of Acid Reflux. (I'd previously been diagnosed with GERD, but had been able to stay off acid meds using natural approaches and watching my diet, but it just got easier to take a pill; now I think it might be the Mobic I've been taking. It's supposed to be a Cox-2 Inhibitor and closer to Vioxx and Celebrex than to Motrin or Naproxen as far as causing stomach problems, but not quite, so...)

I've also been diagnosed (pending a cystoscopy to make it official) with Intersitital Cystitis, which I'm no stranger to, having watched my mother suffer from it for over a decade; fortunately, I have a far milder case. It's still uncomfortable, causing me pain and bloating in my lower abdomen/pelvic area, and pain and pressure in my lower back. I really lucked out with the specialist I saw, she was the kindest, most patient, knowledgeable, and reassuring doctor I've seen in ages, and I'm not really too upset about it.

I had an MRI of my C-Spine done a couple of weeks back, because of steadily increasing neck/shoulder pain and muscle atrophy in my trapezius area, and nerve pain down into my fingers, and am still waiting to find out the results, though I do know the doctor is referring me to a neurosurgeon. Hopefully I can make it by to see the doctor tomorrow; I went last week specifically for that, but they forgot to get the results, so all I got was a message from his nurse saying he looked at them and was referring me to a Neurosurgeon! He can't call me for some reason, so I have to go in person...Kind of freaked me out for a second; I knew I had a bulged disc, and expected to get referred to an Orthopedist, but Neurosurgeon?!? But I after some Googling I found out it might not be much different. Besides, maybe they'll finally do a proper Neuro exam, and once & for all note all the funky little differences my other doctors have noted. (Pupils that don't react quickly enough, hyper reflexes, balance problems...) Who knows, maybe something's even getting pinched back there that causes the Dysautonomia, and either way MRIs are not subjective, so the SSDI judge has to take them seriously.

So that's about it for now...

Sometimes I so want to go all Buffy the Vampire Slayer on CFS

That's how I felt today.
I just had a compelling urge to karate-kick CFS. But, unfortunately for me, it's invisible! And not only that, it's an illness, so you really can't, I mean, maybe if it was Cancer or something, you could remove a tumor, put it in a jar, and do it, or the karate-kick could take the form of radiation or chemo, but, that's probably not gonna do much here.

I guess I was just upset. I needed to do some research online, and my father wasn't home with his laptop, and my body was sending me the really annoying, barely perceptible but extremely insistent message that I should lie DOWN! ASAP! And I was trying to keep on doing what I was doing, but I couldn't focus, and I kept feeling worse. That's Orthostatic Intolerance for ya.

Grrr. Finally, very frazzled, I got up and lay down. But the frazzled wasn't going away, and I just kept wanting to karate-kick SOMETHING. I couldn't hold still, and I was just so frustrated. Finally a little desperate and unable to lie still, I put on some meditation music.

That has been my saving grace lately, meditation music. Something about those frequencies of sound seem to penetrate and resonate deep within me, and smooth out all the chi that is wrinkled, depleted, or bouncing off the wall. Okay, so I may have taken a Xanax as well. It seems to be a typical thing with me. I get worn out, and I know the only thing that will help is rest, but my mind is still bouncing off the wall, and I can't rest, I keep thinking of things I wanted to get done, or feeling like I should be multi-tasking. Being productive used to be my favorite thing, what made me ME. And now it seems it just drives me slightly mad. Or maybe it's what keeps me going? I can't seem to decide. This week, it seems like I've gotten a whole lotta nothing done. I can't seem to focus. And then, I get tired before I've managed to redirect and refocus to get anything done...I was feeling a bit better after laying there, listening to the music, half conscious, for who knows, an hour or so...

Then I went to the doctor. This doctor, he drives me crazy. I go in, and he asks me what I want him to do for me, like seriously. Not like, "Hi there, what can I do for you today hun?" But I tell him what's wrong, and then he asks me, "Okay, so what would you like me to do?" "Umm, I I was kinda hoping YOU could tell me that?"
(I had a UTI.)
Last time I was there, because he told me to follow up on some test results (for the third week in row, they'd always mess up, or not do them all, or...) And he asks me, "So what medication would you like refilled?"
I look at him, kinda confused...
"Vicodin?" he offers.
I tilt my head and look at him, and say, "Uh...no...that's okay..."
(Did I mention when I went online to check this guy out, there was a blurb from someone saying how he seems willing to give out prescriptions like candy?) I only went because he was one of only two doctors locally who take the County Sponsored insurance plan I'm on...and I already didn't like the other one. Her English sucked.

So I'm thinking, okay, so everytime I go he wants to run tests, take the same x-rays over and over again, and he offerred me Vicodin and I refused. So the last thing I figured I'd have to deal with is him accusing me of drug-seeking...

Well, not quite that, just when I asked him for the scrips, he told me these drugs were addictive, and if I wasn't already I would be addicted to them, and didn't let me get a word in edge-wise until he asked me what I would do if he didn't give them to me...(I'm going to a concert tomorrow, a very big deal for me, and one of the situations where I just take medication because I KNOW I'll be needing it...I rarely take hardcore pain killers when I'm at home, mainly, I use them for when I have to go somewhere, which is why 30 pills last me about 3 months...Normal dosage is 1 every 4 hours, and if I take 2 in one day it's a rare occurence, last time, it was pain from the UTI that wouldn't leave and only after Tylenol ceased to cut it.)
Haha, so do I sound defensive already?

You bet. I live with an illness nobody understands and that (at least at the moment) is invisible to the eye of any casual observer, but that a specialist was quoted in the New York Times as saying that she would prefer to have AIDS than have, because her AIDS patients are healthier than her CFS patients, and most of them can work and have a normal life, while the CFS patients mostly can't!

(Incidentally, I have to agree...If you have AIDS there are so many programs, too. Programs to give you medical care for it, programs to help you pay for your medications, programs to give you a place to live...and if you do get full-blown AIDS, I don't really see a Disability judge turning you away, saying you are too young, or your doctor is being overly generous in his assessment of your disability. So...)

Okay, sorry, this is beginning to sound like a whine-fest. I said I got defensive!

Everyone's going all crazy about this XMRV virus...but at this point I'm afraid to even get my hopes up. Besides, I already know I have another virus, and I can't get the medication for THAT, because I can't afford it. Incidentally, it's an AIDS and Hepatitis med. And if you have AIDS, and can't afford it, they'll hook you up. But if not, you're outta luck.

As for my doctor, I explained to him that I hadn't taken the Vicodin in two weeks, and hadn't experienced any withdrawals, plus, 30 pills lasts me at least a couple of months, and the other med, I take only at night and have gone without for 3 nights, at worst, I got to sleep a bit later, and if he liked I could bring in my medical records so he could see that I take them only as much as I say, and call my previous doctors. Grrr.
How ironic that he was offering me pain meds I didn't need last time!?!
Thank goodness the other reason for my visit was to get a referral to a Rheumatologist! (He looked surprised, asked what for, and looked surprised again when I said, "Because I have Fibromyalgia..." Yup. Seriously. That's why I took my records with my original diagnosis of FM from back in 2002.)
They can take care of all my meds, and hopefully I won't have to go back there for a VERY long time! (Fingers crossed.)

I so wish I could go in that mosh pit tomorrow. Concerts used to be such a release for me...Ah, well, I'm just happy to be going :)