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.

The Spoon Theory written by Christine Miserandino

The Spoon Theory written by Christine Miserandino

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!