Thursday, October 1, 2009

Who's this for?

Oh, the pain this morning!

It gets me frustrated sometimes that just doing things that are simple ends up with me enduring this all-over, central pain.

I mean, it's not like I'm out riding roller coasters or anything! I wonder how I'd feel if I rented a horse and went for a ride? Couldn't feel worse, I don't think. Don't worry, I am too weak to climb on a horse anyway.

The other day, a fellow "Chiarian" (not to be confused with my fellow "Martians!") came over to spend the night. I enjoyed her visit so much. She stayed about 21 hours, all tolled, and at least 7 hours of that, we were sleeping.

But, oh, all that talking! We had so much to catch up on, it was so needful for us to talk. She has had the craniocervical fusion that I have been expecting to have for so long. But she wants to have her skull rods removed. She says they cause her so much pain.

At one time, she felt very sure her problems, post-fusion, were due to a tethered spinal cord. She considered seeking surgery for it. Since I've had the TC surgery, I am now able to tell her, "I'm so glad that you didn't have this surgery! It didn't resolve any pain issues for me and in fact, I have more pain than ever now."

So, it seems interesting that she had a surgery I have longed for, and she wishes she hadn't had it. And I had a different surgery that she wished for, and...well, I can't say I wish I hadn't. My faith won't let me say that. But I sure couldn't push her toward it!

After her drove from my driveway and I closed the gate at the road, I laid down and suffered so badly for the next 24 hours with pain behind the head. I had tried to keep things low key and not laugh much...I attempted to let her to do more talking than me (very hard, I know!)

Then, yesterday, I went to our shopping town and, yes, I admit it, I dared to walk straight through to Home Depot's paint department and select some paint, and then carried that gallon out to the truck where my husband/driver awaited. How dare I!! Last night...this body is letting me know that I rebelliously had pushed past my pain-inflicted restrictions.

Ah, someone just sent me an email. An old friend, asking for my phone number so that he can call and "catch up." Now, I'm in the position of having to tell him that I just don't "do phones." It's the "talking thing," you see. Though I'd love to visit with him and see how he's doing, I won't.

I posted on the Chiari support group site (where I help moderate) a question concerning others experiencing occipital pain from talking. I was surprised at how many took the time from their hurting days and told me that, yes, this is a common complaint for them.

I know it's been an evolutionary thing. Right after I broke my neck, with a raging spirit straining against the harness to return to "normal," I went back to playing music and singing in a little bluegrass band I was in. Finally, 5 months after my injury and after hosting a little show (and singing/playing), I knew it was my last time on stage.

Such a big thing for me to give up, just like horses. I played mandolin, banjo, rhythm and lead guitar and sang lead and harmony vocals. We mostly sang Gospel music and entertained at churches. But, I found that the singing led to such debilitating pain. I felt like the back of my head was a sound chamber and the act of singing and bouncing those notes around was the reason for the backlash of pain and whole body weakness. I knew, on that September night in California, that I could no longer perform on stage.

I often think of visiting cowboy poetry shows to see old friends. But, first, the talking and laughing would do a number on me. And I'd have to explain over and over why I was not performing. And everyone wouldn't recognize me anyway. Oh, they'd probably know my face, even though I weigh 40 lbs more than the last time they'd seen me. But they would not recognize my outward personality, I suspect.

So, it started with singing...and has now evolved into talking, as well.

I saw my primary doctor the other day, and he is starting the "ball rolling" on getting me a new neurosurgeon at Oregon Health and Sciences University. I already go there to see my endocrinologist, Dr. Madison, who is excellent. My primary feels I need someone to take care of my neck. One of my AMEs (agreed upon medical examiner) also feels I need a specialist. Sounds like when I gave up seeking help, some of these doctors became willing to show compassion and seek help for me.

I don't know if I want surgery or not. It will depend on what the surgeon says. I guess that I have been bashed around by neurosurgical specialists so much lately that I have finally given up hope of being "better." And I sure don't want to go through that and be worse. So, we'll see.

And it will depend upon how I progress or decline as time goes along.

I have received so many emails from folks I don't know, who follow this blog and tell me that they get so much from it, that I give voice to their own pain, frustrations, fears, etc. Those notes really keep me going.

It also helps me because I was taught, like most of us were, not to complain or whine. To put a smile on and face the world. To "not" give a voice to that pain! Cowboy up!!

And that gives me a little guilt about writing here about the pain.

I also think of my friends who come here for updates. And, I feel badly that all they get to read is how bad I feel! But then I've come to the understanding that these posts are for fellow sufferers. And friends and family can read if they wish...if they can stand it (!)....but mainly, this one's for those who suffer with pain every minute,

who have families who do not understand...
who have doctors who belittle them or disbelieve them...
who cling to hope while facing reality....
who question their faith and wonder if they can hold on....
who pray for a doctor that will understand, listen, have new ideas, validate their symptoms...
who wish for normalcy...
who understand what it's like not to be able to call your mom as often as you'd like...
who would never consider suicide and are not depressed,
yet who sometimes look forward to heaven where there is no pain...
who need a friend, a compatriot in this struggle.


Anonymous said...


I am living every word you describe in this post. Thank you for posting what I don't have time to think through & what no one I know understands. Your words me safely grieve through the reality of what our worlds have become.

A month ago I could wipe the table and take a pill to make the resulting pain better. Now I get electrically sapped while wiping the table. I'm getting worse daily.

But TCI can't help as they don't know to do a fusion for me. No Alaska doctors can help. My insurance company has contacted other neurosurgeons and one will take me on.

My family life has revolved around my pain. How do we remodel the house so I can reach the drinking glasses? How do we handle Thanksgiving when I can't cook or even be up for company? How do we eat when mom doesn't do the meals anymore... We are managing just fine, but it's a daily adjusting and I don't know how much worse it's going to get.

I'm a strong born again believer. I don't know what God has in store. Maybe my not being able to use my arms will strengthen my family and friends. Maybe it will bring others to Christ. Maybe my chronic pain will be a light to unbelievers. Maybe God will heal me.

But at least you understand and walked my walk. I thank you greatly for your blog, especially ones like this that help me see that others suffer like I do.

I used to read the WACA message boards and think I wasn't 1% as bad as those folks who posted. Now I'm 42 and am that bad. I thought my TCI decompression, tether cord surgery and neurstimulotar implant would fix me. Those things all helped greatly. But I'm still deteriorating and pain pills don't help.

I'm blessed to have sincere, sympathtic pain doc, rheumatoid doc, primary doc, ob/gyn, endocronologist, allergist. Last month I even found a sympathetic pharmacist!

But daily deteriorating, insomnia, 24/7 pain and loss of function continues.

Your blog is a gift to us fellow Christian and non Christian sufferers.

Thank you and God bless you.

Lisa in Alaska

By His Grace said...

Oh dear friend, Lisa, I'm so sorry things are continuing to decline to this point for you!!

Maybe I will find a Portland, OR doctor who will do fusions? I somehow have a feeling that I'm going to. Maybe I'll find someone who can help us, even tho I know that is a long ways still from where you live!

I know that feeling too about how your pain influences your family. My poor husband seems to have more pain and depression on the days I feel the worst. It's hard.

It does sound like you are very unstable! If you get L'Hermittes while just wiping off the table! I don't think TCI will ever be much help to those like us, ever again. We are perhaps too much of a liability.

I hear your pain through your words. Just hang on...hold fast...hold on to your faith. I know you will. Remember, Joy comes in the morning.

up late too