Prednisone Wean

It's hell, just plain hell. For 3-4 years I took 20 mgs of Prednisone a day. I'm down to 13mgs a day. My Rheumatologist would be happy to get me down to10 mgs a day but my goal is 5 mgs because that's the point where the fluid comes off [last time I peed off 17 pounds in one week]. Right now I'm experiencing exhaustion, chills, sweats, emotional upheavals, a nonexistent tolerance level, nausea, crappy appetite, increased pain, despondency, and on and on. Withdrawal. Suffice it to say, I'm miserable. One milligram a month - that's about 8 more months - yeah, we'll see. Just get me to Spring - just get me to Spring.

In the meantime I continue to interview new PCA staff and train them.  It takes approximately 5 staffers to have enough backup for illnesses, vacations or weekends /holidays. I'm a high maintenance broad! I'm so grateful for all of them, it's a tough job.

I need to get seen for a spot on my face, plus my teeth are rotting out thanks to the Prednisone and antibiotics, but I've been avoiding going to the clinic to avoid all the wintertime creeping crud - so far so good. My only exceptions are I go to the Courage Center and my wheelchair place. No groceries, shopping, etcetera.  Staff does that for me.

The pain is brutal today, it's as excruciating as the pain I experience when I'm septic.  It's like my nervous system is overly sensitive and everything hurts horribly - and this is with painkillers. I hope tomorrow is better.

A BIT OF MY STORY

     For those who may not know, my primary diagnosis is Rheumatoid Arthritis. The first symptoms began when I was 20 years old. I felt shooting nerve pain in my fingertips and toes. Then a knuckle swelled up. My oldest brother cracked his knuckles at the time and I thought it was cool so I did it too. I didn’t think much about the swelling in my knuckle until it didn’t go away. Then my left ankle swelled, followed by my left knee. Overwhelming fatigue came next. That was around 1980. By 1982, I was declared legally disabled. I had to leave my job as an Administrative Assistant for a large Lutheran church in the Twin Cities and move back to my home in Hutchinson. I was 23 years old. (Just a side note: I worked for a life insurance agency when I was 19 and one of the agents talked me into buying a disability policy. At age 23 I was using it.)

     Years later I had to give up my health insurance for a period of four years and that’s when my knees went. I didn’t know about something called “contractures” which basically means if you don’t keep the range of motion in your joints they freeze up, and that’s what happened to me: I can’t straighten my legs. (I wrote about that decision in a prior blog.) That’s why I’m in a wheelchair. I’m in a power wheelchair because my left shoulder is gone as well.

     I went the holistic health route for many years and did really well but eventually I couldn’t afford it. I miss the holistic modalities, and I have suffered greatly from the Western medical paradigm. I awoke July 28, 2004 and could not get up out of bed. I tried for hours, unsuccessfully, and eventually I urinated all over myself. I called my mom, weeping, and after she came and got Tia (my Yorkshire Terrier), I called the ambulance.  My life fundamentally changed forevermore. I went from no medications to way too many medications and have had great difficulty tolerating most of them. In the beginning of my Western medicine journey my primary care physician began an acupuncture practice and that was such a blessing because it was covered by insurance as well. But, yep, you guessed it, the practice voted to discontinue the program because it wasn’t financially feasible, regardless of how well it was working for the patients. We discovered after the fact that it was minimizing the side effects of the other medications, and it has been hell since.

     Currently I’m going twice a month to the Courage Center Rehabilitation Center for physical therapy. The summer before last I was in the hospital numerous times and nearly died a couple of times. Those experiences left me quite weakened and I’m still fighting to regain my strength. I learned more at my first appointment at the Courage Center than I had in the previous 30 years of physical therapy. I had developed Scoliosis but now it’s gone, they’re helping me with my wheelchair, and they’re the ones that got me writing again. We’ve only just begun! Whaahoo!

     I have many more stories I could tell, but enough for now. I just wanted everyone to be on the same page, so to speak. Don’t hesitate to ask me questions. 

FINALLY BLOGGING AGAIN

I haven’t blogged for a long time because I haven’t been able to type more than a few sentences at a time, but now I have a new way of typing. I now use an on-screen keyboard.  Using the mouse, all I do is scan the cursor over the first letter (or so) of the word I want to type and a selection of words appears at the top of the keyboard. I then scan the cursor over my word selection and it appears on the screen, automatically spacing after each word as well. No fingering, and the way I have it set up I don’t even have to click. It’s so much fun and so much easier! I’m a little slow at it right now but it won’t be long before I’ll be back up to speed--the learning curve with this program is very low.

I’ve been thinking a lot about what I want to do with my blog now. I didn’t go to college until I was 30, and my first class was Composition 101. The professor drilled into our heads repeatedly, “Write what you know”, so that’s my plan. What I know (among other things of course ;-0) is living with physical disability and all that entails. My biggest decision is how detailed, how graphic to get. Recently my oldest brother came to pick me up from the hospital. As the nurse began to go over my medication list, he exclaimed, “You take that many medications?”  The list was two pages long.  I felt very embarrassed. I hemmed and hawed something about many of them being vitamins, etcetera. I thought a lot about it on the drive home and realized how very little he knew about my life: my health, my beliefs, what brings me joy, what makes me sad, what truly matters to me – and he’s my healthcare representative.  It was a powerful wakeup call. So I’ll be writing about my life, in detail. It may not be pretty at times, but I promise to make it as interesting, enlightening, and hopefully humorous as I possibly can. Hopefully you’ll learn something. At times you’ll feel uncomfortable, so be forewarned.  The point is, if you are moved or challenged in any way--if I've helped ease your own journey in any way--then I’ve achieved what I desire. If in the process you learn more about me, well that’s cool too.   So, sit back, relax, and enjoy the ride.

Addendum: After giving it more thought, I know I’ll be writing about more than just disability; I’ll also write about the outdoors (because I love it so), animals (especially one certain 6 lb. Yorkshire Terrier), and whatever may come to mind. I may even write about spiritual stuff (and my spiritual path is quite esoteric, so it could get interesting).  We’ll see how brave I get!  Be sure to leave your comments, become a follower, or at the very least let me know you stopped by.  Also, please let me know if you have a blog so I can follow yours as well.  (This is so much fun!)

Where Have I Been You Ask?

I've been offline for awhile due to internet wireless issues but mostly because I was in hospital again: 11 days with the majority of them spent in the intensive care units of my hometown hospital and Abbott Northwestern Hospital in Minneapolis.  I've been home about two weeks.  I went septic and had difficulty with high heart beat rate coupled with very low blood pressure due to fighting atleast two infections and maybe three.

I'm beginning to realize I almost died...It's been difficult to integrate...it's been a frightening experience.  My family has been so supportive and I love them dearly.  I'm experiencing a great deal of fear...what's coming next...will I have the strength to fight it...?  I have the option of a new medicine but had I been on it this time I truly believe I'd be dead right now.  Instead I had decided to follow my gut and not take it and it seems to have been a wise choice.

My brother suggested I start using Caring Bridge but I think I'll keep using this blog for now.

So, happy belated birthday to all those I missed, prayers and good healing energy to those who need it/them, and many thumbs up to you all.

11/10/10

November 10, 2010.  We buried our momma today.  A warm day in November just as the rain was beginning, yet we were given a dry spell in between.  Nothing formal, we're waiting until Spring for that.  Simple, quiet...good.  She's back with her family, no longer the orphan she often spoke about.  She was born in 1924: by the early 1960's her entire family was gone and then she buried her husband at the age of 48.  Four funerals in 48 years.  I don't know how she did it.  I now understand the burden of the pain that she bore all those years.  She raised three kids through it all, and a significant portion of it alone because daddy's job kept him on the road except for weekends, vacations and holidays.  I understand so much more about her now: her pain; sadness; isolation...and during an era when there wasn't the support for (nor the understanding of) grief that there is now; how strong she really was inside...resilient...she had no choice.

After she died a blossom grew on a 12 year old Geranium she had which is now a part of my indoor garden: the biggest, fullest, most red blossom it has ever produced and it lasted until today - about two weeks - I cut it and took it with me to the cemetery.  A dear friend buried a gold guardian angel pin in the ground afterwards and her husband brought memorial candles for momma and daddy: they only stayed lit for a short time due to the rain.  Precious gifts: both they and what they brought.

It stayed warm this long - for that I am so grateful.  I sat up there and watched the clouds...momma loved to look out her window and watch the storms roll in.  It wasn't a traditional burial by any means, but it was peaceful and in some ways apropos.

My middle brother shared with me that when he was in his deer stand last weekend he saw a shooting star -  A very full, long lasting, bright red Geranium, and a shooting star.......rest in peace momma...

Musings of a Grieving Daughter

Spent most of the afternoon on the river trail; needed desperately to get outside. Halfway there I started bawling and couldn't stop...the numbness is wearing off and the sadness has hit big time. Lots of other emotions as well.

Found a spot in the sun, out of the wind, overlooking a wetland down by the old basspond, and fell asleep in my chair for a while. It was good. Grieving can be exhausting. I wanted desperately to be with my brothers but they were both working. I gave up my cell phone and only have a land line so calling wasn't an option either.

Sure does hurt. ...Part of the circle of life...one of life's initiations...an inevitable transition we all go through...glad I told her "I love you" a lot:wish it had been more...miss that mischievous smile...the rare kiss...those frail, long-fingered hands...that white "Madsen" hair...having someplace else to go...being needed...funny the little things ya miss.

How Life Can Change In An Instant: UPDATE

Well, I was right, my mother lived out her last days in the nursing home: She died October 16, 2010 at the age of 86. Her Doc and I talked about it at her wake, and she died from inactivity. They were short staffed and couldn't or wouldn't get her up when she wanted to, as often as she wanted to and her lungs filled with fluid. Don't get me wrong, she was getting frail and her days were numbered, I'm not being naive, but she lived a lot fewer of them because of the care she received. There were some wonderful staff up there and I am ever so grateful to them...and momma didn't make it easy for them: she was angry and stubborn and a crabby old lady...but once she got to that place she curled up and died. I kept her out of there for about 11 years and I am so glad.

I do now wish I had moved her to the Hospice House where she would have received much more one on one service but you know the old cliche' about hindsight. We did enter her in to the hospice program the day before she died and they were and are wonderful and I'm taking advantage of the programs. I highly recommend it: just don't put it off too long.

I find myself a bit surprised as I write this how bitter and angry I feel today: part of the process I know. I couldn't be up there for 2 to 3 weeks at a time due to my own health issues and that frustrated me to no end. When I was there I could advocate for her and things got done but when I wasn't there she was at the mercy of their routines and programs and had very little to say about how anything went, although I guarantee you she made her wishes known...until she gave up and stopped making her wishes known or telling them when she was hurting or sick. She got tired of waiting for her call button to be answered and stopped pushing it. There were a number of times when she called me and I had to call the nurses station and tell them what was going on.

She called me one time because she'd picked a scab and it wouldn't stop bleeding and she was terrified. She said her nurse had come in and given her some ice to put on it and left her, ...basic first aide tells you to apply pressure, right, plus you don't leave a terrified bleeding patient, right?! Well, after I calmed her down I called the nurses station and her case manager happened to answer and I told her what was going on and could she please help. I talked to mom a short time later and she said it was okay and the lady I sent was very nice and helpful and the bleeding had stopped and she had a band aide on and the lady had stayed with her for awhile. I realized just shortly before mom died that I hadn't seen the original nurse for quite some time..hmmmmm.

Enough for now: I'll write more soon. Need to work through the anger.