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...

Christmas & Stuff

Well. I made it through Christmas. It was actually the best one I've had in years. Got my wish. Did the Christmas Eve thing, as is traditional in my mostly Latin family. Got to see people dear to me that I hadn't seen in years, mostly because I couldn't afford the gas money, am not big on the phone, and was a little embarassed about the state of my life. (Which yes, is not really my fault, but I struggle a lot with guilt, a little voice inside that insists I must have screwed up somehow, even though I've done everything I possibly could to keep my life from turning into a shambles as I fight for my Disability Insurance.)

It just went to remind me yet again of that phrase I read in a book recently, about how when you can't work, your life becomes about relationships. And yes, many times, I've lain in bed, or sat, depressed, musing about how much more bearable my life would be if I just had more people I was close to in it, if my friends or family members would stop by and visit, even if I couldn't entertain them, if I just had people who cared enough to stop by and keep me company, get me out of my head for a bit.

But I always thought it would be hard for me to have people around when I wasn't feeling well; I'm a bit of a perfectionist, and I like things just so; above all, I like people to think I'm fun, and I always dreamed of the chance to be a great hostess. How can I be fun or a good hostess lying on the couch or in bed?

I got a glimpse of what it would be like on Thanksgiving. I'd spent the morning tidying up, & finishing up my cooking, (trying not to chop my fingers off as my grandmother insisted on talking to me while I did it, and I couldn't think how to politely tell her in Spanish that I have a really hard time multi-tasking these days, lol) and by the time I started getting ready, I was exhausted. By the time my brother and his girlfriend showed up, I could barely breathe, my back hurt so much, and I knew I had to get the heating pad on it, and lie down, quick, before things got out of control.

So I invited them into my room, where I made myself comfortable on the bed & applied the heat, offered them seats, and chatted for a bit. It was actually really nice! Kept me from thinking about the pain so much, and probably, stressing about whether I'd screwed up and tired myself out too much to make it to Thanksgiving.

So then I realized, Hey, maybe I don't have to be buzzing around like a bee offering food & drink and fussing over people, maybe it IS okay to just be. That was a pretty cool realization.

So I didn't care if I was getting tired, my fog was driving me nuts making me feel like I had ADD, it was just nice to be around warm, happy, fun people, and best of all, I think they were really happy to see ME. That was the best gift. I was afraid people would be hurt or upset with me, but no such thing. And when I got asked the dreaded questions about what was new w/me & things like that...well I managed to not blurt out any portion of my whole pathetic sob story, and even though the fog kept me from coming up with anything smart or even tactful to say, it wasn't the end of the world. I didn't even remember to ask what was new with them, but it seemed okay.
(I probably stress more than most people about the little things!)

I was good blues-wise for about 2 days just on the good vibes :)

I know it will help so much if I could just get out more and overcome the isolation I've been helping to perpetrate, but it's so hard sometimes. If it's not you, it's people.

I think that may be Resolution #1 for the New Year. Sounds easy, right? It's not though! I've discussed this in support groups before, and a lot of us have the same problems. You never know how you're going to feel. Things that are totally no sweat for normal people can be a big deal, and you don't want to sound like a baby. (I went out the other night with a friend, and they were walking too fast, and in the cold I was having an even harder time than usual, so I asked them to slow down. No big deal, because they had FM too, but if they hadn't, I would fully have expected to be made fun of.)

The other great Christmas present I got (other than money towards my medical bills!) was that I got the YMCA Scholarship I needed to go work out at their gym. My lower leg muscles feel like they're wasting away! (And the upper ones getting humongous! Not w/muscle though!) So I really need to get on that. Resolution #2...

But that's another post. Hope everyone had a Merry Christmas, and if it was as tough on you as it was for me (which I think it was for many people, even those w/o chronic illnesses) just know that a New Year starts this week and things can get better.

Stress-Free Holiday Shopping Links and Freebies!

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Here are some links to Amazon as well:



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