He described it this way: if he were to accidentally hit his thumb with a hammer, the pain message would travel up to the pain centers in the brain and he would experience pain for a time but eventually the message would subside and the sensation of pain would end. In my case, the pain centers don't close down...they stay open and I almost continually experience pain...even old pain like my leg fracture...almost like a body memory. Muscles, ligaments, tendons....

Fibromyalgia...I now have been diagnosed with Fibromyalgia...just yesterday...Rheumatoid Arthritis and now Fibromyalgia...seemingly unending pain...sometimes excruciating...and painkillers tend not to be helpful...

I did my homework when I got home and learned that what I thought I knew about Fibro. was mostly wrong. They know much more about it now. http://www.mayoclinic.com/health/fibromyalgia/DS00079

Fibromyalgia...

I was thinking about what I wrote in my last blog and it reminded me of when I went into a wheelchair full-time. It was a choice...not a big tragedy...a choice.

My knees had become bone on bone and every morning it took me 4 hours to be able to stand up and walk on my crutches: 4 hours of excruciating pain so that I could continue to walk. For what? To get from one place to another? One morning I woke up and said no more. I called the local pharmacy, ordered a transfer board be delivered, transferred into the three-wheeled scooter I already had and never walked again. It was the first day in years that I didn't start my morning in tears of pain. It was a choice: a choice to take my life and independence back. I could still get from one place to another just using a different mode - and without pain.

There were things I didn't know were ahead of me when I made that choice: the biggest being something called contractures - the inability to no longer straighten my legs out. I tried to maintain range of motion, but again I would have to experience excruciating pain and I wasn't willing to live that any longer. I've had circulatory issues, albeit mild so far. And of course, weight gain, which never entered my mind. That took a lot of getting used to since I was extremely skinning all my life. I also figured one day I could get knee replacements (I had no insurance when this all happened). That has been ruled out...I could if I really wanted to but they couldn't guarantee I'd be without pain and now as far as my knees go I am. I've adapted so well that they really feel it would be a bad choice.

And now I choose to sleep in my wheelchair instead of a bed. This choice for some reason is hitting me a little harder, though I'm not completely sure why yet...still working that one through. It's not a tragedy, just a big change...and a choice...a choice to live with less pain and more quality of life. I wonder what consequences I'm unaware of this time? Time will tell.

In the meantime I keep learning, crying, laughing, hoping, driving my health care providers crazy, and enjoying life as pain free as possible. I do my best to stay in the now and not fret what lay ahead (sometimes easier said than done). I have my good days and bad...as do we all...it's part of the process. I keep my eyes on the bigger picture and try to soar above it all like Eagle and Hawk...warmed by the sun...able to see from a broader perspective...light as air...soaring with ease...no struggle...letting the wind take them where they need to be. To try to journey with as much ease and grace as possible...to remember who I am and why I am here...and to love and be loved.

It's The Things We Take For Granted That Are The Most Precious

Just finished another hospital stay. My life is changing again. My shoulders are disintegrating from Rheumatoid Arthritis and sleeping has been very painful the last couple of months. Because of the contractures in my knees I have had to sleep on my side for about 10 years with only brief periods on my back. Now, sleeping on my side is painful as well. I discovered in the hospital that laying in a bed was no longer feasible if I wanted to sleep comfortably, so now I sleep in my reclining/tilting wheelchair...no more bed. It's hard to wrap my head around. I didn't see it coming. It's a good choice but means so many different things: I'm getting worse...I'm losing another piece of everyday life...grieving the old and learning the new...it means not as many transfers which gives my entire body much less work to undertake...which means my joints will last that much longer. What seems bad is actually good...what's good has become bad...change....grieving...letting go...acceptance...moving on...

When you crawl into bed tonight, enjoy the feel of the cool sheets against your skin, the warmth of your favorite quilt, the relief of your muscles slowly letting go and relaxing, rolling over on your stomach, stretching your legs out to hang over the end of the bed, or curling up in a ball. It is a precious experience to be able to take for granted...enjoy every second. It's the things we take for granted that are the most precious.

Gifts: A Cautionary Tale

I found something in our local thrift shop today that broke my heart: a gift I gave to someone I literally trust my life to. There it was hanging on the back wall, unmistakable: a once in a lifetime photograph that I entered into our County Fair and received a second place ribbon for. My PCA saw it first and gasped. She grabbed it down off the wall for me. I felt humiliated, shocked, stunned. I was so embarrassed at the check out I just handed them the sales sticker, not the piece itself, and brought it home. $6.00.

The betrayal and anger set in later, along with the tears and a deep sadness. Right now I feel numb - not sure what to do...if anything...so I write.

This person, the receiver of the gift, was the one who encouraged me to create it in the first place and to put it out into the public arena as a challenge to step out of my comfort zone. I gathered my courage and I did just that and obviously I was pleased with the outcome, who wouldn't be. I felt good and strengthened by the whole experience. Afterward I decided to give it to this encourager, this trusted person, as a gift of thanks.

So...be careful how you handle a gift: whether you like it or not; whether it would have been something you would have chosen or not; it doesn't matter. What does matter is that on some level it may have mattered, if even just a little bit, to the person who took the time and care to give it to you. Trust is a hard fought for, precious commodity that should never, ever, be taken for granted. Once it's lost it's hard to regain.

Love is in the details.

Christmas Ramblings and Remembering

I'm enjoying the holidays so far. Winter finally arrived a few days ago with measurable snow and very cold temperatures. Christmas cards have started to arrive with news of family and friends and they are always fun to get: I haven't decided if I'm going to do the same this year or not - we'll see. Most of the presents are purchased and only a few left to wrap. No baking or candy making this year so it's been simple and easy and actually quite relaxing this year. It's nice. Of course having in-home help every day doesn't hurt. I'd be lost without them!

So far I've been reasonably well and it doesn't look like I'll be sick for holidays this year...so far anyway. Decided to start the new medicine after the first of the year. Mom's doing okay. She has good days and not quite as good days but she's fine. I bought her a new red winter coat and so far she seems to like it.

Started sorting through family photos: writing on the back and sorting into a photo box by category. I realized there's a great deal I know that no one else does about the family and wanted to try to see that information get passed down somehow. I know I would have appreciated it on my ancestor's photos and scrapbooks. Maybe I'll eventually update the photo albums already sorted and placed: the albums are becoming worn and photos are falling out. I thought about digitizing everything but there is nothing like holding an old photo in your hand, turning it over to see who and/or when, and remembering...it's fun.

Have a wonderful holiday everyone.

Tough Choices

It has been a long time since I've written; only once since Star died. My life seems to be centered around medicine: either my health or my mom's. I have felt a little lost since I lost Star, and friendships have changed because of it. With all the medical stuff, I haven't had much strength or time to nurture some of my friendships. I feel sad about that but it seems like part of the process. I only have so much to go around and right now mom is my priority after my own health issues.

I have started decorating for Christmas and am almost done. I'm going to start a new medication soon and want everything ready in case I have to spend part of the holiday season with the hosptial staff like I have the last couple of years. It's between being able to move without pain and stopping joint degeneration, or fighting infections. Now that I'm experiencing the pain part and have realized all over again just how horribly painful it can be and the loss involved, I'm going to be brave and try the new medication: unfortunately that also means a much higher risk of infections and being sick -- assuming I can tolerate the medication at all. It frightens me - I won't lie to you. I have what seems to be permanent neurological damage from prior medications (albiet relatively mild and manageable) and I fear more permanent damage...deterioration that can't be reversed...and that risk frightens me. There are no guarantees, but maybe, just maybe the gamble will be worth it. I know what I face now: joint degeneration leading to lose of independence; excruciating pain; being on high dose Prednisone for long periods and all the damage that causes; long term inflammation and what it does to the body - or - the chance of remission...chance...I have to try. It's the only medication I have left to me right now.

Either way, it just plain frightens me.

A Thank You Note

Thank you President Obama for making the health care reform debate much clearer and for dispelling some of the myths. Whatever form health care reform finally takes, thank you for trying to take care of we who have had the experience of being without health insurance and have suffered irreparable changes to our health because of it. In the final debate this is about we the people and caring for those in need. You are right Mr. President and so was Senator Kennedy, it is about our character as a country. This reform will take courage on all our parts: if it will ease the suffering of just one, then it is worth it.

Most Sincerely,
Jeri Jo A. Redman