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

In Memory of My Best Friend Starlene

IN MEMORY OF MY BEST FRIEND STARLENE
October 22, 1941 - June 20, 2009
I had just moved into Park Towers when I heard this voice out the back door that sounded like baby talk. I didn’t quite know what to think. The owner of that voice became my best friend for the last 8 years. She’d been on a respirator after a massive heart attack and it had damaged her vocal cords, thus the voice. The heart attack left her with only about 10 percent of her heart working and had damaged her kidneys. When she left University of Minnesota Hospital 11 years ago her doctor told her they’d done everything they could and the rest would be up to her, that her attitude would make the difference. Her local doctor here in town didn’t know how she was still here after 10+ years other than sheer will. I know she was still here because of laughter, and playfulness, and love, and a need to make sure her family was okay; she was still here because her God needed her here to touch so many lives, including mine.

Starlene was here as long as she was because of her heart. How ironic.

I miss you my dear friend. Until we meet again…

Written by Jeri Jo A. Redman
***********************************************************************************************************************************
Thanks to everyone that helped to take care of Starlene and keep her going for as long as she did, including: The staff and employees of Hutchinson Area Health Care and Hutchinson Medical Center, staff and employees of Abbott-NW Hospital and the Minneapolis Heart Institute, McLeod County Social Services employees, Faith Lutheran Church, Residents and Staff of Park Towers, the Home Health Aides and Nurses of Connect Care and the Birchwood Hospice House, all the volunteers connected with Meals on Wheels, Gary the Scooter Man of Priced Right Medical Equipment, Dick and the gang at Wheelchairs Plus, Allina Home Medical, her many friends, and of course her family. That’s a lot of people touched by one heart…….
　

Middle of the Night Phone Call

I was awakened this morning at approximately 1:00 am by a phone call from my friend Star. She said something inside felt different and she felt like she was dying. I went right down and we talked for a few minutes about her options, and although she's terrified of the prospect, she chose to start dialysis. I called the ambulance and a few minutes later we were in the ER. She was in a great deal of pain but I was able to get her comfortable and she was able to sleep for about an hour and a half. At 7:00 am they transferred her to the Twin Cities to Abbott/NW Hospital where her Nephrologist has privileges and where the Minneapolis Heart Institute is. They know her there. I came home and slept for a few hours. I haven't heard from her since. Her daughter talked to her for a short time and they were preparing her for dialysis but she hadn't gone as of about 4:00 pm. I tried calling at 6:30 pm and she wasn't in her room. Perhaps her greatest fear is being faced as I write.

To say I feel helpless and useless is an understatement. Everything in me wants and needs to be down there with her but health-wise I just can't do it. So now I wait....and see what comes....and go from there.

A Perfect Moment

Made it through the trip to Mayo. I am exhausted as usual. I don't know much more than I did before I went. There was one wonderful moment though, one bright spot in the whole trip. The morning of my appointments, I got my breakfast to go and went out to this little garden/park just outside Methodist Hospital across from the Clinic. The sun was warm and healing and I was surrounded by budding/flowering trees of pink and white against a robins egg blue sky. The ground was covered with rich green grass and white tulips everywhere. It was peaceful, and elegant, and perfect. As perfect a moment as I've ever known.

Spirit Weary

I don't know if I have the strength to do this again...another trip to Mayo and more tests. Bladder issues this time. Too many infections too close together. Dealing with infections is my life as far as my health goes. I'm spirit weary and don't want to have to drive down there again. I don't know how much more I can endure, or if I even can endure it any more. It's the old sick-and-tired-of-being-sick-and-tired syndrome.

When I take these trips I feel so alone, even when someone comes with me, they don't come in with me, they don't have to endure the humiliations and the stress, the physical pain and exhaustion. They mean to help but I still have to walk it alone and it's so dispiriting sometimes. I don't want to do this by myself. I don't want to do this at all.

The Big Wind

That was quite some wind last night. An American Indian woman I knew told me that wind is a harbinger of change. There must be some mighty big changes on their way.

I call that kind of wind Mother Nature's pruning service. I suspect as we all go out today, we will find that there are many dead branches on the ground, hopefully none have fallen on any structures.

I wonder often what the outdoor creatures go through during something like that, especially now that it's nesting season. I thought about the four small cardinals nesting in a bush between two fences over at the neighbor's house. They probably had it better than most. It's a vulnerable time as far as little winged ones go. The trees have leafed out quite a bit so hopefully that was more of a help than a hindrance.

For Those Who Are Weary And Those Who Care For Us

I thought I'd share another essay from All I Really Need To Know I Learned In Kindergarten: Uncommon Thoughts on Common Things by Robert Fulghum.

I realize I've been writing a lot about my health and the hospital and health care and we've experienced a lot of loss of friends lately. I know of a number of you who have lost someone close to you recently as well. I know there are a number of you that are facing healthcare crises of your own, or huge, overwhelming changes in your lives, or just having a bad day....or a series of bad days: this essay is for you.

I know a number of you who face all of us who are in crises, and help us as best you can, even when there are times you feel there isn't much you can do: this essay is for you. (By the way, during those times, a simple touch of your hand, or sharing a personal story, or just finding a way to make us forget for a moment or two is the best you can do and more healing than you know. The simple touch of another human being who cares can be more powerful than any medicine or procedure ever could be. Never ever forget that.)

So on this rainy Friday night in Minnesota, I dedicate this essay to all those who are suffering and to all those who do their mightiest to ease or end that suffering. My gift of thanks....my gift to hopefully uplift and ease, even if only for a short time.....

One portion of a minister's lot concerns the dying and the dead. The hospital room, the mortuary, the funeral service, the cemetery. What I know of such things shapes my life elsewhere in particular ways. What I know of such things explains why I don't waste much life time mowing grass or washing cars or raking leaves or making beds or shining shoes or washing dishes. It explains why I don't honk at people who are slow to move at green lights. And why I don't kill spiders. There isn't time or need for all this. What I know of cemeteries and such also explains why I sometimes visit the Buffalo Tavern.

The Buffalo Tavern is, in essence, mongrel America. Boiled down and stuffed into the Buffalo on a Saturday night, the fundamental elements achieve a critical mass around eleven. The catalyst is the favorite house band, the Dynamic Volcanic Logs. Eights freaks frozen in the amber vibes of the sixties. Playing stomp-hell rockabilly with enough fervor to heal the lame and the halt. Mongrel America comes to the Buffalo to drink beer, shoot pool, and dance. Above all, to dance. To shake their tails and stomp frogs and get rowdy and holler and sweat and dance. When it's Saturday night and the Logs are rocking and the crowd is rolling, there's no such thing as death.

One such night the Buffalo was invaded by a motorcycle club, trying hard to look like the Hell's Angels and doing pretty good at it too. I don't think these people were in costume for a movie. And neither they nor their ladies smelled like soap and water was an important part of their lives on anything like a daily basis. Following along behind them was an Indian - an older man, with braids, beaded vest, army surplus pants, and tennis shoes. He was really ugly. Now I'm fairly resourceful with words, and I would give you a flashy description of this man's face if it would help, but there's no way around it - he looked, in a word, ugly. He sat working on his Budweiser for a long time. When the Dynamic Logs ripped into a scream-out version of "Jailhouse Rock" he moved. Shuffled over to one of the motorcycle mommas and invited her to dance. Most ladies would have refused, but she was amused enough to shrug and get up.

Well, I'll not waste words. This ugly, shuffling Indian ruin could dance. I mean, he had the moves. Nothing wild, just effortless action, subtle rhythm, the cool of the master. He turned his partner every way but loose and made her look good at it. The floor slowly cleared for them. The band wound down and out, but the drummer held the beat. The motorcycle-club group rose up and shouted for the band to keep playing. The band kept playing. The Indian kept dancing. The motorcycle mamma finally blew a gasket and collapsed in someone's lap. The Indian danced on alone. The crowd clapped up the beat. The Indian danced with a chair. The crowd went crazy. The band faded. The crowd cheered. The Indian held up his hands for silence as if to make a speech. Looking at the band and then the crowd, the Indian said, "Well, what're you waiting for? Let's DANCE."

The band and the crowd went off like a bomb. People were dancing all through the tables to the back of the room and behind the bar. People were dancing in the restrooms and around the pool tables. Dancing for themselves, for the Indian, for God and Mammon. Dancing in the face of hospital rooms, mortuaries, funeral services, and cemeteries. And for a while, nobody died.

"Well," said the Indian, "what're you waiting for? Let's dance."

A Bit of This And That

It was a beautiful day today and I spent most of it outside. It was nice to hear the birds again and the water going over the rocks. I even discovered my wheelchair has a few new squeaks since I got it back from the repair shop.

Having the ear tubes put in was not fun, it was painful. Gratefully it didn't take long. My ears still feel a little stuffy but hopefully that will ease with time.

I finally finished giving my Yorkie her hair cut. It was my first attempt and everything looks pretty good except her head....I would describe it as the worst butch cut ever seen. Hey, I'm still learning, and hopefully with time I'll get more adept and she'll look much better! We'll see.

A dear old friend was buried today. My mom and I used to play cards with he and his wife and another couple and we always had a blast. We haven't talked much for a few years but I was able to see both of them a few times recently and I'm so glad. I love them both very much and it's hard to lose one of them and see the other one hurting.

I didn't go to the funeral. I don't deal well with large groups right now. I'm weaning off of high dose Prednisone and it is a real struggle for the nervous system among others. It's, I guess, comparable to any kind of addictive type withdrawal. It isn't easy and my body is trying to find it's way back to normal. Mornings are horrible until I get my medications down, then things start to ease. If I can remember it's the Prednisone making me feel the way I am and that I'm not actually losing my mind, it helps, although I don't always get there right away and that can be frightening. I'm down to 12 mgs a day and hope at the very least to get to 7. We'll see. I go down 1 mg every four weeks.

Oh How I Love The Health Care System

Well, someone didn't get the memo, but the ENT I saw this morning doesn't do surgeries and procedures on Monday, he only see patients. He does his procedures and surgeries on Fridays. So, now I have to wait until Friday about mid-day to have the tubes put in and that's up in the air right now. That also means that if anything goes wrong, I'm left hanging 'cuz it's the weekend.

I feel angry, frustrated, flat out discouraged.

This Too Shall Pass?

Tomorrow's the big day, my ear surgery. I'm actually looking forward to it: 1. to get it over with and 2. so I can hear again. I hear almost nothing now.

I wonder what it will be like? Will there be pain afterward? During? I guess I'll be able to hear again right away - what will that be like after a week of almost silence? Will I tolerate the drops and meds involved? Lord, I hope so. I'm so tired of medication reactions. What will the doc be like? I've never met him and I hate having someone performing procedures on me when I haven't even met them. Will I be able to drive myself home? No one told me anything about prep or post procedure so this should be interesting.

I sure hope I feel better after this thing. I've been sleeping a lot again. There must be a lot going on in my brain that we're obviously unaware of. I would just like some time to heal and gain some strength back before having to face anything else.

We had our first long rainy day today and it was kind of nice. Have been feeling the itch to dig in the dirt something fierce but have no place to take advantage of it. Need an assistant to help with that kind of stuff. The old arms don't work as well or as long as they once did. Slow loss. Have had to get used to slow loss. Periods of grief and letting go.....periods of hope and strength....periods of wondering what's coming next....periods of just plain tiredness. The spirit sure can endure a lot...it gets weary but it keeps on keepin' on. This too shall pass. I hope so.

Hearing Loss

Well, it looks like I'll have tubes put into my ears early Monday. I haven't been able to hear much of anything for about a week due to a double ear infection. I'm terrified of another procedure: they're never simple where I'm concerned and on some level I really don't want to do it. The thing is, if we wait for the antibiotics to work, if they do, we weaken our arsenal of antibiotics and since I don't have a lot of choices where antibiotics are concerned, it needs to be done.

It's been interesting, this hearing loss experience. At first I was irritated. When I couldn't hear my mother's voice anymore I panicked. Once I was reassured I wouldn't lose my hearing permanently, things got better. Now, it's actually been kind of peaceful. Although I miss out on the small "hello, how are you" conversations, I also don't have to bother with all the background noise we put up with every day. It's like a constant onslaught to our nervous systems, and I enjoy not having that: it's been quite peaceful. What I really miss are the birds and squirrels, the lawn mowers and people raking....in other words the sounds of the warm seasons. Sometimes I miss the sound of my Yorkie and sometimes not! :-) She can be quite demanding and bossy at times. Be assured though, if it's important, she'll get my attention one way or another. She's also been my door bell when people enter the apartment and she lets me know when my phone rings. It's been interesting, for some reason the tone and volume on my phone are just right so I can hear on there just fine. It's quite curious.

I hope everything goes okay. Sure wish I had a few minutes to talk to my PCP. The visit went so fast and now I have concerns and fears I sure wish I could discuss with him before the procedure. I hate weekends when it comes to things like this. Maybe I'll get lucky and run into him beforehand. I dearly hope so.

Hold Hands And Stick Together

A friend of mine on the quilting newsgroup I belong to, my dear Miz. Polly, reminded me of a book I adore and haven't read in years. It's entitled, All I Really Need To Know I Learned In Kindergarten: Uncommon Thoughts on Common Things by Robert Fulghum. I don't know for sure what copyright stuff applies here but I'm going to share some of his wonderful essays here in my blog and if I am doing unlawful things, well it surely is not my intent so please kindly let me know. In the meantime, please enjoy these wonderfully witty and often wise insights. I do, so very much.

"Each spring, for many years, I have set myself the task of writing a personal statement of belief: a Credo. When I was younger the statement ran for many pages, trying to cover every base, with no loose ends. It sounded like a Supreme Court brief, as if words could resolve all conflicts about the meaning of existence.

The Credo has grown shorter in recent years--sometimes cynical, sometimes comical, sometimes bland--but I keep working at it. Recently I set out to get the statement of belief down to one page in simple terms, understanding the naive idealism that implied.

The inspiration for brevity came to me at a gasoline station. I managed to fill an old car's tank with super-deluxe high-octane go-juice. My old hoopy couldn't handle it and got the willies -- kept sputtering out at intersections and belching going downhill. I understood. My mind and my spirit get like that from time to time. Too much high-content information, and I get the existential willies--keep sputtering out at intersections where life choices must be made and I either know too much or not enough. The examined life is no picnic.

I realized then that I already know most of what's necessary to live a meaningful life - that it isn't all that complicated. I know it. And have known it for a long, long time. Living it -- well, that's another matter, yes? Here's my Credo:

All I really need to know about how to live and what to do and how to be I learned in kindergarten. Wisdom was not at the top of the graduate-school mountain, but there in the sand pile at Sunday School. These are the things I learned:

• Share everything.
• Play fair.
• Don't hit people.
• Put things back where you found them.
• Clean up your own mess.
• Say you're sorry when you hurt somebody.
• Wash your hands before you eat.
• Flush.
• Warm cookies and cold milk are good for you.
• Live a balanced life--learn some and think some and draw and paint and sing and dance and play and work every day some.
• Take a nap every afternoon.
• When you go out into the world, watch out for traffic, hold hands, and stick together.
• Be aware of wonder. Remember the little seed in the Styrofoam cup: The roots go down and the plant goes up and nobody really knows how or why, but we are all like that.
• Goldfish and hamsters and white mice and even the little seed in the Styrofoam cup--they all die. So do we.
• And then remember the Dick and Jane books and the first word you learned--the biggest word of all--LOOK.

Everything you need to know is in there somewhere. The Golden Rule and love and basic sanitation. Ecology and politics and equality and sane living.

Take any one of those items and extrapolate it into sophisticated adult terms and apply it to your family life or your work or your government or your world and it holds true and clear and firm. Think what a better world it would be if we all -- the whole world -- had cookies and milk about three 0'clock every afternoon and then lay down with our blankies for a nap. Or if all governments had as a basic policy to always put things back where they found them and to clean up their own mess.

And it is still true, no matter how old you are--when you go out into the world, it is best to hold hands and stick together."

Thanks Miz. Polly and yes, I promise to hold hands and stick together.

Well, as far as I know I beat the UTI infection and now am suffering from an upper respiratory (sinus/ear) infection. Tried a new med for the arthritis in between and got sick from it so stopped taking it. Feelin' pretty lousy tonight.

It was a beautiful spring day today, breezy, but warm. There's a disc (Frisbee) golf course in the park behind our apartment building and it's been very busy now that the weather is warming up. There are golfers of all ages and it's fun to watch.

My friend Star got her new wheelchair today. Not all that she needed but hopefully she won't have as much pain when we cruise around town. She was hoping it would be faster than mine but we tried it tonight and it isn't! She's not happy! I told her there is a chance he (the wheelchair man) could calibrate it higher next time he came out so maybe there was still a chance she could kick my butt yet!!! Now if we could both just start feeling better so we could get out there and burn up the trails!!!!!

I started doing some writing for my brother's e-magazine and am enjoying it. I do love to write: some days are better than others, mind you, but love it I do.

I've been contemplating moving mom someplace where she can have more help because I don't think I can handle it much more. It's a tough thing to think about but if my health does not improve, something's going to have to change. Plus, she's facing having to quit smoking after 71 years because our building is going non-smoking the beginning of next Jan. She says she'd rather live on the streets than quit. I'm exhausted right now and the idea of facing any of it is overwhelming. I know that partly it's the infection talking, but......tough decisions....one day at a time.

Well, Star was misdiagnosed in the ER. Her kidneys had not failed completely, she was dehydrated. They told her to limit her intake of fluids that night until she saw her PCP the next afternoon (this we were informed after I had to call the ER for her because they failed to send her discharge instructions home with her!!!) when what she actually needed was to drink more!!! Her kidney function levels had actually dropped (which is good!) and I wondered about that, plus her weight had gone down (it should have been rising due to fluid build-up) and I wondered about that. She saw her PCP the next afternoon and he told her she was fine and just needed to drink more.



To say I am angry and frustrated is an understatement!!! Just a couple of weeks earlier she had a UTI and her PCP wasn't there so she saw his back-up. He gave her an antibiotic that sent her to Abbott/NW Hospital in Minneapolis because above mentioned kidney function levels went sky high (meaning her kidneys were failing and needing dialysis)! He gave her an antibiotic that hurts the kidneys! Her primary diagnoses are congestive heart failure and renal failure - what the hell was he thinking? It seems like everytime she has to be seen by someone besides her PCP they screw her up somehow and these "little" emergencies are wearing me (and her) out!!!!



When you're a regular, (meaning you see your doctor more than you see your family!) I understand that your doc and you get to know each other very well and not all of that information gets into the record, it can't, and it's all that extra info that makes a doc/patient relationship work. Unfortunately, not knowing that information can also be dangerous to we the patient as well. There have been times when I know I would have been in deep trouble had I not been conscious when visiting the ER/Clinic/Hosp. - meds that I can't tolerate (which are numerous!) and meds that had been changed but hadn't gotten into the records yet, etc.



Like my doc told me once, it is called a "practice," or the medical "arts," and a former doc told me that, at least in Rheumatology anyway, it is an educated guessing game and that each patient responds differently. I know we all have bad days and docs are people too, but man oh man when it's your life or your best friend's life........!!!!!!!!!!

My best friend's kidneys stopped working tonight. Actually a couple of days ago. We knew this day was going to come. Now that it's here I feel numb...and not. I have an infection and don't feel well enough to be with her and it hurts. I've been with her every step of the way so far so she wouldn't have to be alone and today when she had to go in and have this dreaded news delivered, I wasn't there - she was alone.

And now she'll begin the journey of dialysis. A journey we've both dreaded for over 8 years. Dialysis is tough on those with a strong heart and she only has about 10% of her heart functioning. Dialysis is very dangerous for her...and I'm afraid I won't be able to be there for her when she starts and it's breaking my heart. She's been my best friend for 8 years now and my partner in crime, my scooter buddy, my co-pilot on road trips, and my comic relief. She can always make me laugh. She's terrified of dialysis, mostly because her niece and sister have been through it and their experiences were horrendous...and I may not be able to be there for her. Of all times for me to get sick. I believe there is a divine reason for everything. This one, whatever it is, sucks!

We've both known she's been living on borrowed time for quite awhile, but now it's getting a little too real. We were out scootering recently and she said to me, "You're going to have to find someone else to scooter with...who are you going to scooter with?" We've talked about her moving into the hospice house when the time comes, we've talked about (more like laughed about) her coming back to haunt me, we've talked about death, and faith, and afterlife...but how do you talk about the pain of losing her - of being left behind. She says she's ready but I know she's terrified. So am I. She wants it over; it's like living with a ticking time bomb inside your body and she's tired of being sick.

But....who am I going to scooter with?

I have another infection and not exactly a little one either. So far I get to stay home but if the antibiotics don't kick in by Thursday, I'm back to the clinic and I suspect back in the hospital. Well, at least the weather is lousy so I'm not missing out on being outside!

I've been enjoying my time on facebook. It was very intimidating in the beginning but it's nice to be able to communicate with folks anytime of the day and to rediscover old friendships and reconnect with family again. It's kind of fun!

The sun is trying to come through the clouds and it looks so good. I do love being outside; it brings me a lot of peace and healing...and a great deal of fun and enjoyment as well. I love watching the changes along the river trail. The goose I see every spring down by the bass pond is there again only this year it looks like the muskrat didn't build its house as in years past. She was pretty low to the water level. She always puts her nest on top of the muskrat house. I wonder what fate befell her trusted muskrat? The cardinal that hangs around the end of the trail was singing again when I went by the other day. Glad that one's back. Haven't heard the red-winged black birds yet, that's always a sure sign it's spring. The Robins have been sassing a great deal though and that's music to any one's ears after a long and rather old fashioned winter!

My Yorkie is trying to tell me something and I'm just not understanding. It must be so frustrating for her! Usually I can figure it out but not right now. She's as restless to get back outside as I am. I think one of the first words she recognized was "outside."

Well, I better go rest and try to fight the mean little bugs that are in my body raising all kinds of havoc. I plan on winning again!

What's happening to my body now? What's causing me to sleep so much? Why is there always something going wrong?



Being chronically ill can be exhausting, discouraging, frustrating, unending, dispiriting....I feel sad, anxious, concerned, worried, out of control, and wonder if what I'm doing is helping me or hurting me. Are the medications being used to help actually shortening my life? And yet if I don't try something could the disease itself shorten my life? I know it can make me lose what independence I have left if I don't at least try...hell of a choice: longer life but much less independence or shorter life with side effects and independence...It can all be so disheartening after a while...and then a friend writes with good news, or someone wraps their arms around me just to say hello (when you're disabled you usually only get touched by health care workers and sometimes family), or a small furry loved one sticks her nose in my neck and burys her face just to tell me how much she loves and trusts me, or an unexpected warm day beckons and in answering it's beckon I see an Eagle soaring overhead.



The good and the bad; the fearful and the healing; the light and the dark. A life of duality. Just like Minnesota weather, wait a few minutes - it'll change.

Well, I slept most of the day again, although it seems to be getting better slowly each day. Spent some time with my mom, did a little quilting, and spent time on the computer, including face book which is relatively new to me. It's brought me into contact with family I otherwise don't hear from and that has meant the world to me. I wrote to some friends I haven't corresponded with for a while and organized my papers that need filing, mostly because I need a tax form that I now realize I never received; will be chasing that one down this week.

I love to write but don't quite know where to start when I get on here. I remember my first college class was Comp. 101 and the instructor always preached to write what you know about. I know about Rheumatoid Arthritis (I've had it for 27 years); I know about how the health care system around here works, or sometimes doesn't work; I know about alternative or holistic medicine and it's good and bad sides; I know about living with a 6 lb, almost 8 year old Yorkie; I know about caring for an 84 year old mother whose had two strokes, one heart attack (that she never went in for until after it was over), three bouts of pneumonia, moderate to high level of dementia as well as cataracts so thick the ophthalmologist can't see her retina, no teeth, hearing loss, and is in a three wheel scooter full time (although she can transfer), and smokes incessently. I call her my crusty marshmallow: crusty on the outside but all mush on the inside. It isn't easy but I love her dearly and will care for her as long as her or my body will allow us. I know about power wheelchair scootering on the river trails of my hometown and all the changes the river goes through. One of my favorite haunts is a place called Miller Woods which is an Oak Savannah Restoration Project. I have a lot of pictures from up there including what I call my Chipmunk series: they are little hams up there and will pose for me. I know I love my hometown and it's people. I know what it's like to live in a Senior Living Commmunity and the emotions and experiences all that brings. I know what it's like to watch a dear friend die slowly of congestive heart failure/renal failure and feel so incredibly helpless to do anything. I treasure every moment I have with her. Oh, and I know a little about quilting.

I guess I do know a lot and so have a lot to write about.

Slept the whole day. I don't get it and it disturbs me. I think maybe it's exhaustion from my road trip to St. Cloud yesterday but I'm not completely sure. It happened the day after I got back from Mayo as well. Frustrating.

My neighbor brought over hotdish (that's Minnesotan for casserole) for supper tonight so I didn't have to cook anything; a definite blessing!

My brother is starting up an online magazine and he's asked for my help which makes me feel really good. I hope I can be of help to him. There's about 7 years between us so we've never really participated in anything together. This could be fun....I hope so.

Made an appointment to take mom to get her hearing checked on Monday. This is a big step as she doesn't like doctor offices of any kind. She's even talking about having her cataracts removed which is HUGE because she's been putting that one off saying either "I've seen everything I need to see" or "I don't approve of eye drops." Now you have to remember that she's 84, has had two strokes, suffers from moderate dementia and is scared to death of any procedure that might take another piece of her away (she's worried about the anesthesia for the cataract surgeries). She's lost so much, she's trying to hold on to what little she has left.
I hope she goes through with both...we'll see.

Hmmm, power issues.....an electronics piece goes out on my wheelchair; an electronics part goes out on my adapted van; my nervous system has been damaged by medications; I am experiencing considerable fatigue...power...energy...there seems to be a bit of a pattern going here. What exactly is/are the powers that be trying to get my attention about? Where is my physical strength, my personal power? Curious.

Welcome to my first attempt at blogging. I will be writing about everything from my health status, to happenings with my family and friends, to my experiences in the health care system, to those things that touch my heart and catch my attention at any time, and probably a little of everything in between.

Today I'm taking two friends to rehab. appointments, one for a wheelchair assessment, the other for shoulder therapy. One is terrified and the other just wants to get it over with. I on the other hand am exhausted; mostly due to the recent beginning of a drop in the level of Prednisone that I have been taking since late July of last year. In that year I have gained 60 lbs. An experience I am ready to let go of now; not enjoyable at all.

For those who may not know me at all, I was diagnosed with Rheumatoid Arthritis when I was 23 years old. I was doing quite well for many years until I had to give up my health insurance due to financial restrictions and went without medical help for four years. In that time I lost the use of my knees and am now using a power wheelchair full time. I am now back in the health care system and have been blessed to find two doctors that I adore and we have become a team. It has been a very rough 5 years of trying to find the right medicines (which is ongoing) and surviving side effects and the ensuing infections that come with Rheumatologic medications, but I persevere. I have come to know the hospital and clinic staff on a first name basis-not a good sign! ;-)

Had my wheelchair repaired yesterday. It wasn't holdin' a charge, so I couldn't go very far and as Spring is upon us, I tend to spend many a mile on the river trails here in town and need to be able to go all over town without fear of running out of power. There's a metaphor there but I'm too tired to pursue it. Running out of power....hmmmm......