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?
Tuesday, March 31, 2009
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!
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!
Sunday, March 29, 2009
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.
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.
Saturday, March 28, 2009
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.
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.
Friday, March 27, 2009
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.
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.
Thursday, March 26, 2009
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......
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......
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