It's been a horrible few weeks.
I continually adapt.
I endeavor to come up with coping strategies...to manage the emotional darkness this god-damned illness exacts.
I try to find words to metaphorically help describe my symptoms. Somehow that aids me as I live in this bodily prison. Perhaps it softens the cold, hard facts.
I tend to personify all sorts of aspects of life...and aspects that have no life...material things, like bikes and cars.
At times in the past year, I have gotten angry and have broken things...
...a full-length door mirror. (Boy that made a racket..and a mess.)
...a plastic Tums bottle with Tums still in it. (That just made a mess.)
...and earlier this week, while hollering some sort of frustrating obscenities, I chipped one of the window blinds as I repeatedly slammed my shirt against the inside of the bedroom window covered with the blinds.
I ended up lying in the back yard that night...
...in the dark
....on the grass
.....crying.
Sobbing, I rolled on my side and looked at the treetop shapes in the distant darkness. The animal tree-shadows brought to mind when I was young girl and would camp in the yard so I could stargaze and look for animal shadows and listen to night sounds and wonder at the vastness of the universe and think that surely extra-terrestrials would come visit me someday and that there had to be more to life than my time on earth.
Yesterday and this morning...
...with the incredible heaviness in my limbs
....with the feeling that I'm dragging around a dead body
.....as I made the effort to defy gravity and pull my body to an upright position
......and then consciously thought to myself, "Move Carol. At least you can still propel your body forward,"
.......the earth felt like a giant magnet (which it is) and my body was filled with slivers of iron and the earth was pulling the iron with all the earth's might. I was going to be sucked right into the center of the earth.
The heaviness gets incredibly unbearable...almost. I do bear it, because I'm still here.
I thought, what can I do? what mental image might help me?
I know.
I'll picture a rubber covering under my feet that will buffer and interrupt the pull of the magnet.
But I love the earth.
I want to feel the earth.
I don't want another separation between me and the earth.
I don't want to think of the earth as my enemy, as something I need to shield myself from.
The earth is not my enemy.
My body is not my enemy.
I don't want to even think of terbinafine (the drug that precipitated this unkindness) as an enemy.
I don't want any enemies.
E-n-e-m-y .
Innie me.
That's when I was my own worst enemy...when I as an "innie me."
I took terbinafine for about six weeks in Spring, 2011, that caused, or at least was the catalyst, for this dis-ease of polyradiculitis that robs my limbs of functions, that has stolen my dreams.
(As I type this now, I feel hatred toward that medication.
But I don't want to feel hatred.)
Anyway, I wrote down the word terbinafine.
I asked myself, If I scramble the letters, can I come up with something I can embrace ... instead of hating the culprit, instead of viewing terbinafine as my enemy?
terbinafine
or
train be fine
or
benefit rain
Benefit rain...
Shower me with benefits...let me once again dance, light-footed, arms outstretched, open face toward the heavens as the rain freely falls, life-giving, nourishing, replenishing...
I prefer a benefit rain to terbinafine.
Dancing in the Rain
by Hillary Weeks
"...And I danced in the rain
I let my dreams know I hadn't forgotten them
I let my heart take the lead and
I told my hopes to get themselves up again
And I danced, I looked, yes I danced..."
19 comments:
So sorry to hear this, Carol. It has been a tough last 10 days for our extended family. My great-nephew, G, was misdiagnosed at the age of 8 months with a kidney disorder. They discovered last week that all along he has had cystic fibrosis, which has a digestive component. He was 13.5 years old and weighed 60 pounds. After eight days in the hospital, he is gaining weight and learning life-extending breathing treatments and the like.
Have you consider legal action against the makers of that drug in order to pay your medical bills (now and future) and to sue for pain and suffering?
I will keep you in my prayers. Glad one day we will have a new body.
SP
Carol. :(
Oh my SP...regarding your nephew. All those years of suffering (for he and his family) with CF. Wonderful news that he is finally getting more proper treatment. <3
Yes, on the legal inquiry. A couple(?) years ago, John had a lawyer who files these kind of claims look over my case. The lawyer said that in NC, the drug has to be brand name (as opposed to generic) in order to file. I had generic (and I still have the drug in its original bottle. I just found it a couple months ago.) I didn't look any further (yet) to confirm that information from that lawyer.
There are other factors too...as to why I haven't dug a bit deeper into that path (legal action).
I have thought recently about collecting data from other people ...using social media, etc. To see who might come out of the woodwork who has had a similar response to terbinafine. I have communicated with 1 other person who has, and he knows a couple other folks as well. If I would start a separate blog about the issue...perhaps there would be more people. Terrible if there would be...from the standpoint of that's more people who suffer with this damage.
But I don't know if I'll bring that data-collecting idea to fruition.
As always, thank you for reading and responding...and for your kindness. <3
Thanks Zoe... <3
Yesterday around lunch time, I upped my daily prednisone for the third time in four weeks. I had been upping by 2.5 mg increments to help manage the symptoms. Yesterday I upped by 5 mg. The improvement today is baffling, but not baffling because its roids. I actually "walked" down the stairs this morning...instead of my consciously balancing each step. As you know, it's always a toss up of benefits to risks managing my dosage of prednisone. Without it and the spinal injections....I hate to think where'd I be...but probably bedridden.
I keep crossing fingers that the "next thing" the docs and I try will do *something* in a positive direction so I can minimize the steroid side effects and still have some relief of symptoms. (I'll take complete remission too! :D ) My current next thing (another medication)...well, I have to give it 'til July; it can take 6 months to have an effect. I'm sticking it out for the 6 months...maybe I'll give it 8.
And I continue with supplements and herbs as well, but I only add/change the "next thing" (meds/herbs/supplements/nutrition) one round at a time. It's a slow process...turtle pace.
Thanks again Zoe for reading and being....
<3
So sorry you are feeling so yucky Carol. I do hope that you will eventually overcome this painful plight. It just sucks that a med prescribed for you to help has caused you so much grief. Some years ago I was prescribed a new "miracle" pill for arthritis but I took one and got horrible stomach cramps and never used it again...thank God! A few years later it was all over the news how bad the side effects from it were. I can't remember the name of it. There should be some recourse for patients who are harmed by FDA approved meds that turn out to be poisons.
Thanks Anna!
I keep hoping too.
Wow on that stomach med. So glad you didn't continue taking it.
I play over and over in my head how all this happened...from the onset and everything after that to try to get a remedy (& proper diagnosis) to the morphing of symptoms as time has rolled along...and it baffles me how a medication taken for 6 weeks can wreak such long-term havoc.
Which then leads me into a giant slew of questions...to which there are no answers...which leads back to the present and the question at hand, "What action can I take now to help myself be constructive in my life?"...which will help buffer the destructive toll this stuff has taken thus far.
And I do keep hoping for reconstruction; but as time goes on, that becomes harder to grasp.
Thanks again Anna... <3
You know I love turtles right? :)
You're welcome. <3
Now that you mention it... :) I recall we discussed that on a poem I wrote...something about turtle eyes.
Funny you say that. Yesterday I was thinking about a trail name for myself...if I ever get one. Or maybe I'll just give myself one. :)
Anyway...I thought I could be turtlestepper or turtlefeet or something along those lines.
Maybe just "turtle"..but I imagine its already taken, so I could be anotherturtle. lol
oneturtle... (like "oneperson") Hmmm...that's a possibility. :)
Oh.....you'll like this...
I have a tortoise client whom I am seeing again today. His name is Speedy. :D His human momma really loves him.
I see him in an hour. I'll tell him that Zoe says hi. :)
I do hope you find a way to reverse the damage that drug caused you Carol. I remember the name of the Arthritis drug I was given that thankfully, my stomach couldn't take. Vioxx. Over 35,000 folks died from premature heart attacks and strokes before it was finally taken off the market a couple years after it was introduced. No telling how many people suffered for it. How long was the drug you took on the market? I do hope the FDA has learned from these tragic mistakes and takes a lot longer testing new drugs before they release them to the public. Praying you will get better soon and able to get back on the hiking trails. Hugs.
I was going to say and tortoises too but was lazy today. Feel like I was hit by a truck and a nasty dose of tinnitus.
I love them. I have taken many photos of them while in the south.
I've always considered myself a turtle or a hard shell creature at least. :) When it's safe I stick my head out but when I don't feel safe I pull it under my protective shell.
I covet your relationship with Speedy. Do say hello!
He said "Hi Zoe!" ;)
Observing Speedy always gets me to pondering us earth animals. Tortoises have been around a lot longer than us humans. I question if we humans are as intelligent as we think we are.
Wow....over 35,000! Omg! That's a LOT of people! *shakemyhead*
The drug I took is still on the market, but the advertising for it has apparently changed or is non-existent. The drug is terbinafine which is the same as oral Lamisil (brand name).
There have been lawsuit(s) against Lamisil for liver damage (some resulting in death), but that is/those are the only suit(s) I have found.
One thing addressed in the suit(s) was to have the makers of Lamisil stop/change their advertising campaign, which gave the impression that Lamisil was benign..as far as drugs go. Part of my (naive and stupid) thinking was along those lines when I took the drug... like "Oh Lamisil. That's a household name. Must be okay..as far as drugs go." Without researching the drug...I put it in the category with Diflucan, which for me was pretty harmless..as far as drugs go.
As far as neuropathy as a side effect....A year or so ago, I read that only around 55 cases have been reported. (My diagnosis of polyradiculitis is one kind of PN.) But, I recently read that number was actually in the 30s...which is way low,... less than 1% chance. I'm sure there would be more unreported cases...but I imagine the unreported wouldn't be a high number. But, then again....who knows? That's one reason I'm pondering starting another blog specifically for the subject of terbinafine and especially with PN as a side effect.
Thanks for the hugs. Hugs back... ((( <3 )))
PS: "PN" stands for peripheral neuropathy.
Let me know if you set up the blog. That should be interesting, you write with such passion and perfection, I love to read your feelings. I thought this link to a PN Doctor here in San Antonio I heard a lot about might interest you. I've seen him on the local news and morning shows a couple of times and you might want to check him out to see if he has treated other patients with PN caused by Lamisil and might have some advice for you. https://www.youtube.com/watch?v=R7CXMIlCLaE
Thanks for the link Anna! I just watched the youtube. I'm going to read up a bit more on Dr. Coppola and on his book. Interesting and I am curious if he has run across any Lamisil patients. Antibiotics, cholesterol drugs, and chemo drugs are the typical culprit medications for PN.
Thanks for your kind words and encouragement. Passion and perfection! *chuckle* I'll have to remember those words when I'm in one of my funks!
<3
In my blog post I wrote: "...that has stolen my dreams..."
I thought about that statement after finding the "Dancing in the Rain" video and throughout the day after posting the blog piece.
I thought: "It's not my dreams that have been stolen, but the dreams-into-realities. I can still dream. I will not allow them to be stolen."
That said...I'm not ready to admit that my dreams-into-realities are stolen. I probably never will be ready for that. It seems so...futile.
You are awesome Carol. I love you! HUGZ
Thanks April! Love you too!
((( <3 )))
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