Thursday, November 19, 2009

Why is it...

That I'm still surprised that folding laundry totally wears me out? My feet hurt, my legs are sore, my back is sore, I'm sweaty and out of breath (thought that might be my allergies, since the cat is in here). I'm exhausted, and it seems so crazy.

I asked myself the same thing a couple of weeks ago after a trip to pick up some groceries. How is it that something so basic wears me out? And then, how is it that I'm still surprised!?

I don't know...Maybe I just thought since I got a lot sicker for awhile, and even being on my feet was exhausting, that when I got better it would be better. But that doesn't really make sense does it? Because it was challenging before, too.

Sometimes I wonder if in that jumble of cognitive dysfunction there's some kind of disruption in the learning process. (I say this because I seem to also have a much harder time getting anything out of talk therapy's like i forget what I learn, so I can't apply it, whereas before it would all click and I could use it, apply it, for years.)

I've had FM/CFS for 7 years now; albeit I've had my ups and downs, but I can't seem to accept so many of my limitations, and I really think it's caused problems with adjusting to my new life... I've gotten better about some things. I use my handicapped placard. I even use GoCarts at the stores if I'm not feeling great. I've learned to ask for accommodations when I need them. (I went to a concert recently and was amazed when I investigated accommodations just how easy it was to get them and what was available, and felt so blessed that they made it easier for me to go and enjoy myself doing something I used to do in my pre-illness days.)

But I still feel guilty asking for help with a lot of things, I still have frequent barely subconscious wars about whether I am letting myself get lazy, or I should try harder. I grew up being a tomboy. I liked to play with the boys, did sports, like running, hiking, mountain biking...I always believed I could do anything a man could do. And now I feel like such a wimp! I can barely carry my own groceries, nevermind the laundry!

Anyone else experience these issues? How do you cope?

Wednesday, November 18, 2009

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 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...