What to write? If I write do I click "publish?"
Polyneuropathy ended up on my reading list today.
Both my feet and hands continue to be tender and weak.
It has been almost two years since the onset of serum sickness, or to be more accurate - an idosyncratic serum-sickness like response to oral terbinafine. I wrote about the serum sickness in an earlier blog piece from July, 2011: Serum Sickness. I was hopeful when I wrote that piece, hopeful that the prednisone would work its magic and my body would rid itself of whatever took hold in my plasma.
But, that didn't happen. I'm not as bad as I was in 2011; nothing close. But, still I don't have my limbs fully back. Maybe I never will. But I don't want things to get worse.
I developed carpal tunnel due at least in part (and maybe in whole) because of the serum sickness. I had carpal tunnel surgery on my right wrist on February 18.
A few nights ago, I awoke from sleep; my left middle fingers were numb. My mind screamed, "NO! This cannot and will not be!! I will not develop carpal tunnel in my left wrist too. GO AWAY!!"
I straightened my left hand out so that my wrist was straight. My right hand and wrist and forearm were in a brace already. I thought about rousing myself to go find a brace for my left hand. I moved my ankles in circles and felt the tenderness in my ankles and feet. My mind wondered to tarsal tunnel; would I develop that too? "Please god, no." I drifted back to sleep.
When I had asthma between the ages of 22 and 42, I used to be afraid to go to sleep at night. The asthma would be at its worse during my sleep. I'd awake in fright gasping for breath with a horrid sea of fluid in my lungs. Often, I'd go to sleep sitting up leaning forward over a husband pillow, hoping that by staying upright I could avoid an asthma attack. It seldom worked.
I've found myself the past months having anxiety when I know it's time to go to sleep. The pain and tenderness are worse when I sleep. When I awake in the morning, it takes a moment for my feet to work properly...to get my balance and footing. Once I start walking, the tenderness subsides. But it is always there at a low level. I want it to go away. I want my hands and feet, my ankles and wrists, back.
After researching my symptoms today, I want an appointment with a neurologist. I called the general practitioner and made an appointment for this Thursday. I want to see if she will refer me to a neurologist. Maybe with a referral I can be seen more quickly. I can't keep living this way. I will not allow this stuff to steal my dream of thru-hiking the Appalachian Trail.
As I spoke in tears on the phone with Hubby today, I said, "Maybe I should complain more. I think sometimes I minimize my pain and symptoms. I think to myself, 'Carol, it's not that bad.' And I find myself thinking of Dad and comparing any thing I go through with quadriplegia; nothing can be as bad as quadriplegia."
I guess now, I've complained.
13 comments:
Carol...so sorry to read you are still suffering from this insidious illness. I do hope the neurologist can help. I agree..there is nothing more debilitating than constant pain...except not being able to feel any at all. I will say a prayer for you. Have no idea if that helps or not but it certainly can't hurt....;)
Thanks Anna...
I feel a bit vulnerable(?) having posted this blog piece. OTOH, I'm worn out from pushing on...and maybe from denial. I was holding onto the hope that as time wore on, the "serum-sickness" symptoms would disappear. That's what is supposed to happen. They have diminished, but not gone.
Long story (of course)regarding the docs I've been working with. My hope is that the one this morning will agree with my request for a neurologist. My chiropractor (whom I went back to last week after not seeing him for a couple years) stated independently yesterday (without knowing I was going to ask him about a neurologist) stated that his opinion is that I need to see a neurologist. So if my MD today (for some reason) doesn't want to refer me, I can get a referral from my chiropractor. I felt better just knowing that. (Part of my anxiety the past couple days has been thinking about dealing with the powers that be; ie: the medical professionals. But I've learned after decades of surviving chronic illness and working with the pros, that I own my body and I pay the bills...so I have the final say.)
I personally know of a few other people who have had the same reaction to the drug terbinafine as I have had. Their symptoms have lingered for a couple years. Two became bedridden and went on disability. Prior to terbinafine, they were active mid-30s folks. I need to give a call to one of those people that contacted me after reading my blog and see how things are going.
I know everyone has their struggles. So I hope I don't come across like my own personal pity party...but maybe that is where I've been the past few days. And I know you too have had your fair share of reactions to medical procedures. (I see commercial regularly about the mesh and think of you every time.)
There was something else I was going to type, but now it has slipped my brain cells. Oh well. If it comes to me, I'll post it.
Thank you again Anna!
<3
~Carol
I do hope you get some answers soon Carol. I have lived with arthritis most of my life and some days, I too have a pity party. I just got through with a series of shots in my back that have helped a lot. I had them five years ago and they lasted until recently. I had to have a disk in my neck replaced arthritis disintegrated some years back. I suppose we all have our crosses to bear one way or another.
I was working on a "trivia" blog post this morning and did a little research and ran across this lady's blog who offers a free relaxation tape I downloaded and it really works. I downloaded it and may let it run all day long. It's also fun to watch the fantastic graphics. I'm going to add the link to my next blog but thought you might want to check it out.
www.pattlindkyle.com
Good luck with the neurologist!
Not a pity-party. Self-compassion. Listening to your body and your heart and your mind.
I'm overcome lately with pain and anxiety. I certainly understand it so don't shy away from it thinking others are worse off so you don't have a right to your own pain. I've done that my whole life and it only serves to make the pain worse (in my own experience.)
Thank you Anna...and thanks for the link.
Lately I have been doing some sort of meditation or relaxation every day. I have a CD and a youtube I enjoy. I may download Patti's exercise too if I can get it on my iPhone.
The appointment with my GP went well. Hopefully I will get in this week to see a neurologist. The GP was very encouraging and says we are going to turn over every stone. Worse case scenario would be I just have to stay on steroids indefinitely...but that only as a last resort.
Right now, I am trying to go lower on the steroids so more symptoms will present. I know if I go up to 5 mg I'd be much more comfortable (symptom wise)...but I won't do that. I would like some relief soon though. (I'm allergic to all NSAIDS. Thus prednisone and I have been 'friends' for at least a couple decades. My full hip replacement in 2008 is a result of prednisone. Hopefully though, we will rid the underlying cause and I can be steroid free once again.)
I'll have to go check out your trivia blog.
Here's a link that crossed my path this morning.... http://weavesilk.com/
Thank you Zoe!
I read your recent blog post and others from the past regarding your own struggles. I appreciate your sense of humor. :) It does help along the journey!
Self-compassion to all of us...
<3
Carol...I checked out the weavesilk site and it's fun to draw and the music is soothing. Pattie's site draws for you and it's mesmerizing also.
I had an appointment Friday with my pain management doc and found out the shots I had recently...probably made me gain a few pounds I'm not happy with...and I was thinking it was birthday cheesecake. He said giving those first to reduce swelling is how he treats his patients with several back issues.
In two weeks I'm going to have the nerve blockers for arthritis which I think must be what I had five years ago that worked so well. He also prescribed some rub on cream to use on my knees and hips when they flare up. He said his patients have gotten good relief with it. It has to be compounded at an apothecary in Houston and I'm supposed to get it today. I talked to the pharmacist and he said there are no side effects because it doesn't get into the systemic system. That's a plus for sure.
Good luck with the neurologist!!!!!
P.S...I forgot to mention I hadn't posted the "trivia" blog post yet because I'm still getting a lot of hits on the "spring" one. Maybe later this week. :D
Sometimes I wonder at my humour. :-) Especially in light of what seems to be a steady stream of layers of depression. :-( The mystery of life.
Anna I hope you get relief with the treatments and have gotten relief with the cream.
I'll go over to check your blog later...to see if the Trivia post is up yet.
:)
Those damn layers. I wish they were as easy to take off as winter layers.
To help me chuckle I will sometimes watch DVDs of the sitcom "Third Rock." I like John Lithgow.
I also like "Big Bang Theory."
It's been a long while since I've had a good belly laugh though. They seem far and few between.
Gentle hugs...
<3
I'm a Big Bang Theory junkie. :-)
I've peeled and I've peeled and I've peeled. I think maybe I've come to an understand about these layers. Acceptance maybe? Hugs back atcha.
I think that is part of the process...acceptance.
Funny thing you bring that up. I've been working on accepting that maybe this condition with my limbs and hands and feet may never go away. It may be that the best I can do is regulate symptoms.
It's hard to accept. I thought I might be done with my decades of chronic illness. I had some good years prior to this damnable curse that has stuck like a magnet but acts like mercury, morphing around in my cells. (I know you know about that kind of stuff all too well.)
Thanks for the back atcha hugs...
To "Big Bangs"! ;D
~carol
<3
Post a Comment