A Need To Speak Up...

I joined Facebook a while back and I really enjoy it. Early on I made a conscious effort to avoid, for the most part, political and religious posts. To me it's a very personal thing and I just want to have fun on Facebook. Recently there have been "click if you agree" posts about "welfare" and it's been hard not to speak up. Many of my friends on FB tend to be more on the conservative side of things where I tend to be more of a moderate to conservative liberal . Today for some reason I feel the need to speak up: especially about "welfare." First I ask my readers to check out this website: www.welfareinfo.org especially the "History of Welfare."

I am a "welfare" recipient. If it were not for Social Security Disability Income (a large chunk of which I pay out to): Medicare, Medical Assistance and something called the CADY Waiver, I would either be dead, or much more disabled than I currently am and in a nursing home. I admit that it hurts to read the comments about "welfare" on Facebook. I defend to my very core everyone's right to say what they choose, so please don't get me wrong, but it stabs the heart a little when I read them. Are there abuses to the system? You bet, not only by the recipients but the vendors and/or providers as well. I've experienced it in the health care system myself, especially with equipment suppliers. But without "welfare" I shudder to think where I would be now.

BTW, I found out my father was part of the CCC (Civilian Conservation Core) during the depression, which I thought was totally cool: see www.ccclegacy.org/ccc_legacy.htm The CCC was part of the original "welfare" system established by Roosevelt. Maybe some of your parents/grandparents were also a part of such projects during the depression.

I'm just asking to please think a little before generalizing is all. Thanks for hearing me out. See you on FB!

How Life Can Change In An Instant

A former college friend recently reminded me that I hadn't written for some time so here I am. So much has changed since my last post; where to begin....

I received a day's notice late in April for an appointment at the Mayo Clinic with my Rheumatologist. It was a long day for my personal care attendant (PCA) and I but we did it and when we pulled in to the parking lot back at home at the end of the day we were exhausted. My mom came down in her little red scooter to see how it went as was her norm. Unfortunately she had a run-in with a man who lives in the same building and who had been hounding her for some time. In that moment of exhaustion and fatigue I decided I didn't have the strength nor the endurance to care for her any longer...we needed more help. Through tears I went upstairs, phoned my oldest brother to tell him the time had come and he agreed and proceeded to let my other brother know as well. This was a Wednesday. Monday afternoon we moved mom to an assisted living facility in a small town nearby. It was brand new and beautiful and right on a lake. She could have some of her furniture and the help she needed. The first night she said she cried but the second evening when we visited her she actually seemed pleased with the situation. We were thrilled as we drove home. Not a half hour after arriving home the phone rang telling me she had fallen out of her wheelchair and they were sending her to the hospital. Less than 48 hours in her new home and she had fallen and broken her hip. She opted out of surgery. The new place couldn't provide the care she needed and so we ended up putting her in the local nursing home and there she will stay until the end of her days; the place I had been trying to keep her out of all this time.

One instance...one altercation...one long day...one decision and both of our lives changed drastically and forever. Suddenly I've given the care of my mother over to strangers, and my brothers, sister-in-law, a dear friend and I are sorting through a lifetime of stuff. Instead of going on the elevator and down the hall to check on her, I'm on the phone or driving up the hill. I'm making decisions I don't want to make anymore. I'm watching her independence fade into thin air...a woman who was the epitome of independence now dependent on strangers for almost everything. Once off the painkillers she realized her situation and was/is not happy. Yes she has dementia but she's still with it enough to know and she hates it...I hate it...I hate that place...I hate that I had to be the one to make the decision...I hate that all her personal items she loved so much have been dispersed and she's left with very little of the things she surrounded herself with, those things that made her so very happy. I'm the family's memory now, not her and though I'm glad I listened well, it doesn't feel like my place...that's her place, not mine.

She's starting to settle in and I'm slowly finding my way. I feel very alone at times: I lost the constant company of both of my best friends in less than a year... I hope my family will forgive my openness about these matters in such a public arena...it's my way of trying to heal and move on...writing always has been a healing balm for me.

We've had some wonderful things happen in our family as well: my eldest niece and Goddaughter married a wonderful man in a beautiful wedding in Chicago this spring as well. I have never seen her as happy as she was on her wedding day. It was a wonderful event in our lives.

I continue to fight for my health; trying new medications, adapting to the the physical changes and trying to enjoy life as much as I can. My PCA's and HHA's are wonderful and take good care of me, which allows me to stay in my apartment - otherwise I'd be my mom's roommate and I don't think I could handle living in a nursing home right now, so I am ever so grateful for all the support I have - everyone that makes it possible for me to stay in my home. I picked the right day and age to have to endure this with all that is available as far as technology and the health care/social system. I treasure every good day that I have and take advantage of it to the fullest.

I have met many supportive people in this cyberspace world and I am grateful as well for all the support, learning, and laughter I have experienced because of them/you. It's pretty fun sometimes.

That college friend I told you about is collecting stories from us. About 11 of us, all considered "non-traditional students" (meaning we were over 22 years old) met at a community college in Minneapolis and made a pact to get together at least once a year at a cabin in WI. As far as I know we have done just that and although not all of us can make it each year, we are there in spirit. Anyway, she asked us to write down our favorite memories of our annual get-togethers whilst we could still remember them. It was fun remembering all the mischief we used to get into...we all graduated from that little college in the early nineties and we're still getting together, sometimes on a monthly basis. When we met we ranged in ages of twenty-something, to I believe fifty-something. It was a good idea Kathy...your mom and her friends were our inspiration and I for one am grateful.

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.