I could continue to relate all the symptomology but it would be repeating basically what I've told you. I sort of learned through all this that if I removed myself from me and looked at what was going on in different parts of my body that it helped keep the pain controlled longer and I could be up more... not particularly helpful around the house but I could do my own laundry and do the dishes some evenings. Bless Carol for being sooo very patient through all this. She just continued doing around the house and in the yard and if I was up she would talk about what was going on with me and check to see how I was feeling and didn't push me about not being up or sleeping too much. I had talked with her about not wanting to add any more medications to my body until the liver doctor got back all those results from the blood tests so that he would have as clean a slate as possible for me when he decided what my treatment would be so that if there were side effects with any of the meds he would be able to make whatever necessary changes without the waters being too muddied, as it were, and she understood where I was coming from about not pressing for more pain meds or trying to rush the doctor about getting to see me. Believe me, when you are waiting to make an appointment with a liver specialist for the first time and you get a phone call and the voice says, "This is the Liver Transplant Center calling for Helen Gardner" it tends to get your attention and I wanted to fully cooperate with the doctor to avoid the possibility of a transplant.
So time passed and I fogged in and out of the pain and time came for my appointment to find out what all the blood work indicated was going on in my body. A dear friend drove me to Oklahoma City to the Transplant Center, seriously that is the name of the clinic. I didn't trust myself to drive because of the pain and the drugs I had been taking. I told the doctor that it felt like my body was trying to rip itself to shreds. I had a war going on inside and he agreed that my good guys were attacking what they perceived as my bad guys in my body and trying to eat them and destroy the invaders. What it basically all boils down to is my autoimmune system is AWOL. Every test it seems that is checking autoimmune markers is out of range. The doctor said that he really wasn't in the mood to transplant me so how about if we try to get you back to some semblence of a normal life by the use of medications. He also told me that if I hadn't been so pig-headed about getting off the steroids I wouldn't have had to go through all I'd been going through for the last month or two, something that I'd already figured out for my own stubborn self. I told him that he was right, that I had been so frustrated with nothing seeming to improve that I was just fed up with all of it. The doctor said his goal is to get the liver enzymes back in a somewhat normal range and controlled for three years. After three years my antibodies might forget about the ones they thought were bad and he could then try getting me off all medications. Sounds good to me... I'll only be 70 and I'll be ready to go dancing!
He started me again on the prednisone and I'll be on it until I see him in January. Within two days the pain was nowhere even remotely near what I had been dealing with for almost two months. I still have had to take pain pills occasionally but not 4 - 6 times a day. I'll have to get blood drawn in another week, but will not have to go back to the lab during the holidays. That sound like a great Christmas present to me. I walked the dogs for the first time in over two months and they were happy babies to go poop somewhere other than their own little yard. Carol and her sister went to Habit For Humanity and found carpet squares and I actually was able to help lay down new carpet in the living room, hall and front bedroom. Nancy, Carol's sister, took up the old carpet and padding and we decided that when the mobile home was built they must've paid the workers by the staple because there was a butt-load of staples used to put the padding down. My brother had given me a multi-use tool on one of my trips to Ft. Worth and I figured out that one of the attachments would cut the staples off even with the floor and Carol's eyes lit up and she became a staple and old nail cutting mother! She is in a wheelchair most of the time now but she could bend where she could make the tool flat to the floor and cut those nasty staples off. She got after it, which is good because I still wasn't up to being able to help much but when all the cutting, cleaning and prep was done and the glue was rolled on the floor I was able to help lay the squares down. I was so excited to be able to help do SOMETHING around the house that I was almost in tears. The best part about it was I was able to do something to help two days in a row. Not like I used to be able to do but able to help and do some of the repair/fixit around the house stuff that I so have enjoyed doing over the years. I'll have a good day or two in a row then I will still have a fall out and sleep a good portion of the day spell. I really feel like maybe, just maybe I am on the road to being able to do around the house and next spring maybe I can get back out into the garden.
What it all boils down to is I have missed visiting you all and wanted to let you know that I may be back on the road to getting back to my ornery self. Or at least 2/3rds of my ornery self. Thank you all for caring what's going on with me and checking up on me. My doctor said that I'm not done with things in my life and he wants to get me back to taking care of business. I totally agree with him...
I'm not done yet!
Thursday, November 15, 2012
Wednesday, November 14, 2012
Still Kickin'
I knew it had been a while since I've posted on my blog and when I looked I was embarrassed to see how long it had been... A lot has happened since my last post and nothing really has happened since my last post. Let me explain that statement.
In August I was pretty much tired of feeling like the hamster in the wheel, running and running to nowhere on the medical side of my life after getting my blood drawn every month and going to the G.I. and having virtually the same conversation about getting the liver function down to somewhere near normal. I was having some side effects that I attributed to the Imuran, the liver medicine that I had been taking, along with prednisone (steroids) for months. My doctor was getting frustrated, also I think, because my liver readings were not getting down to where he thought they should be and I was thinking if the dang liver med hadn't kicked in to deal with the problem and get me off the steroids then why am I taking it? We talked and I told him that I felt some of the problems that were putting me in the dirt were side effects of the Imuran and I wanted to know if there were other options. He was honest with my that he really didn't know as it was pretty much all he knew to do and he would prefer that I go to a liver specialist that would be more knowledgeable about it all. Fine with me but I'm getting off the Imuran and he said that was fine but would you not go off the prednisone. Well, I thought what is 7.5 mg every other day going to do for me but for now I stayed on it.
I went to Ft. Worth for the weekend of August 24th. My sister-in-law was going to sing for her first time with a gospel group and 6 or 8 songs solo in the program. The concert program was at a large church in Benbrook, a bedroom community in the south part of Ft. Worth. My sister that lives in Weatherford, TX, west of Ft. Worth drove in and we got to visit and sit together during the concert and that was fun to get to catch up with her. It seems we don't get to do that often enough.
This was the flyer for Diane's first professional appearance. Gloria Diane Gardner or as we call her GG or Diane. She also went with Praise, Inc. to Vermont for 4 days of concerts. My baby brother went with her and Praise, Inc. on their Vermont trip and they got to visit with my cousin and her husband that live close to where the concerts were being held. I was jealous that they got to visit my cousin as it has probably been 15 or 20 years since I've gotten to see my cousin... but I wasn't cognizant enough to fuss too much about it. I, once again, have digressed from my post...
Meanwhile back at the ranch... The Evening Of Praise was wonderful, but also very long. Anyone that has ever gone to a gospel singing evening knows it will go at least 2 hours and more likely 3-4 hours. Since I went with Bennett (baby brother) and Diane we were at the church so they could get set up and do sound checks and all that pre stuff and then we were at the church for the tear down and all total we were there from about 3:30 in the afternoon until 11 p.m. that night. I was wiped out. I slept for the better part of Saturday. Praise, Inc. was going to sing at a car show and I was looking forward to getting to see all the older cars and enjoy some more music but I was so exhausted that I told Ben he was going to have to go without me. Diane was also pretty wiped and was staying home until little brother called and smooth talked her into going to the show and doing some more singing both solo and with the guys. I slept, watched a little t.v. and slept some more and some more.
I had planned to get up and go to church with B. and D, on Sunday but I didn't wake up until almost noon on Sunday and when they got home from church we all basically crashed, napping and watching t.v. until Sunday night when we met two of my nephews at the movie, the first one I'd been to at a movie theater since I went with Ben and Diane to see "Elf" when it came out several years ago. I got up on Monday and drove home. Exhausted.
Somewhere during that stretch of a few days I decided in one of more disastrous decisions that the prednisone wasn't doing any good no more than I was taking... 7.5 mg every other day. The doctor hadn't told me that you have to step down, way down before you quit taking it and I figured there wouldn't be any problem. I was so very wrong as any of you who have been on an extended steroid regimen know.
NEWS FLASH... Sometimes I just amaze my own stupid self... I just now in talking with Carol realized I lost almost two months. I was thinking that I just lost about one month, but I'd been thinking that the concert was in September when they were in August. I got home on Monday even more tired than usual from my trip. And from there things pretty much started heading south. I slept, got up to eat, maybe get on the computer a bit, maybe not, back to sleep and the next day repeat. Then the pain started. I would take pain pills when I got up to feed the dogs in the morning, go back to bed and when I'd get up again I'd take more pain pills just to try to keep the pain at a manageable level... it wasn't working very well. I went to my regular doctor about getting stronger pain medication until I could see the liver doctor. I had my first appointment with him on Sept. 20th I think. Before he did anything medication wise he wanted to get lab work and then we would get down to the business of figuring out what he was needing to treat. He order 15 different blood tests. I got the bill for them the other day... over six thousand dollars of tests. Thank God for Medicare otherwise we wouldn't be having this conversation because I'm one of those that has no other medical insurance.
In the time after the blood tests until my appointment to see him again, the pain really kicked in. I would wake up one day with hot, searing joint pain in maybe my elbows one day and then in my wrists and hands the next. You could see the swelling and almost feel the heat coming off whatever area was hurting that day. My hands looked like I had been in a fight. My knuckles would swell up to almost double normal size and the swelling would go halfway up my arm. When the pain traveled again it went to my knees. I was in such pain just trying to walk from my bed to the bathroom (about 12 steps) that I had to use Carol's cane for several days and thought about getting her walker but I didn't get quite that bad. As the days passed I got to being almost analytical watching the pain traveling from one area to the next in my body. Almost as if I was on the outside of my body looking in and observing what was going on. For example I figured out when the low grade fever started coming on the pain would start intensifying. The pain meds my family practice doctor gave me that were stronger than what I normally take for the fibro pain and they would afford me some time where I wasn't curled up in a whimpering blob on the sofa or asleep in the bed on an average of 12 hours out of the 24.
I'm going to make this a two-parter because I'm getting worn out trying to remember what all went on since the end of August. I can remember 40 years ago great, just don't ask what I had for dinner last night and here I'm trying to recall what went on in my drug induced state for almost two months. I promise not to make you wait for two days, much less two months but I have to take a break for now...
In August I was pretty much tired of feeling like the hamster in the wheel, running and running to nowhere on the medical side of my life after getting my blood drawn every month and going to the G.I. and having virtually the same conversation about getting the liver function down to somewhere near normal. I was having some side effects that I attributed to the Imuran, the liver medicine that I had been taking, along with prednisone (steroids) for months. My doctor was getting frustrated, also I think, because my liver readings were not getting down to where he thought they should be and I was thinking if the dang liver med hadn't kicked in to deal with the problem and get me off the steroids then why am I taking it? We talked and I told him that I felt some of the problems that were putting me in the dirt were side effects of the Imuran and I wanted to know if there were other options. He was honest with my that he really didn't know as it was pretty much all he knew to do and he would prefer that I go to a liver specialist that would be more knowledgeable about it all. Fine with me but I'm getting off the Imuran and he said that was fine but would you not go off the prednisone. Well, I thought what is 7.5 mg every other day going to do for me but for now I stayed on it.
I went to Ft. Worth for the weekend of August 24th. My sister-in-law was going to sing for her first time with a gospel group and 6 or 8 songs solo in the program. The concert program was at a large church in Benbrook, a bedroom community in the south part of Ft. Worth. My sister that lives in Weatherford, TX, west of Ft. Worth drove in and we got to visit and sit together during the concert and that was fun to get to catch up with her. It seems we don't get to do that often enough.
This was the flyer for Diane's first professional appearance. Gloria Diane Gardner or as we call her GG or Diane. She also went with Praise, Inc. to Vermont for 4 days of concerts. My baby brother went with her and Praise, Inc. on their Vermont trip and they got to visit with my cousin and her husband that live close to where the concerts were being held. I was jealous that they got to visit my cousin as it has probably been 15 or 20 years since I've gotten to see my cousin... but I wasn't cognizant enough to fuss too much about it. I, once again, have digressed from my post...
Meanwhile back at the ranch... The Evening Of Praise was wonderful, but also very long. Anyone that has ever gone to a gospel singing evening knows it will go at least 2 hours and more likely 3-4 hours. Since I went with Bennett (baby brother) and Diane we were at the church so they could get set up and do sound checks and all that pre stuff and then we were at the church for the tear down and all total we were there from about 3:30 in the afternoon until 11 p.m. that night. I was wiped out. I slept for the better part of Saturday. Praise, Inc. was going to sing at a car show and I was looking forward to getting to see all the older cars and enjoy some more music but I was so exhausted that I told Ben he was going to have to go without me. Diane was also pretty wiped and was staying home until little brother called and smooth talked her into going to the show and doing some more singing both solo and with the guys. I slept, watched a little t.v. and slept some more and some more.
I had planned to get up and go to church with B. and D, on Sunday but I didn't wake up until almost noon on Sunday and when they got home from church we all basically crashed, napping and watching t.v. until Sunday night when we met two of my nephews at the movie, the first one I'd been to at a movie theater since I went with Ben and Diane to see "Elf" when it came out several years ago. I got up on Monday and drove home. Exhausted.
Somewhere during that stretch of a few days I decided in one of more disastrous decisions that the prednisone wasn't doing any good no more than I was taking... 7.5 mg every other day. The doctor hadn't told me that you have to step down, way down before you quit taking it and I figured there wouldn't be any problem. I was so very wrong as any of you who have been on an extended steroid regimen know.
NEWS FLASH... Sometimes I just amaze my own stupid self... I just now in talking with Carol realized I lost almost two months. I was thinking that I just lost about one month, but I'd been thinking that the concert was in September when they were in August. I got home on Monday even more tired than usual from my trip. And from there things pretty much started heading south. I slept, got up to eat, maybe get on the computer a bit, maybe not, back to sleep and the next day repeat. Then the pain started. I would take pain pills when I got up to feed the dogs in the morning, go back to bed and when I'd get up again I'd take more pain pills just to try to keep the pain at a manageable level... it wasn't working very well. I went to my regular doctor about getting stronger pain medication until I could see the liver doctor. I had my first appointment with him on Sept. 20th I think. Before he did anything medication wise he wanted to get lab work and then we would get down to the business of figuring out what he was needing to treat. He order 15 different blood tests. I got the bill for them the other day... over six thousand dollars of tests. Thank God for Medicare otherwise we wouldn't be having this conversation because I'm one of those that has no other medical insurance.
In the time after the blood tests until my appointment to see him again, the pain really kicked in. I would wake up one day with hot, searing joint pain in maybe my elbows one day and then in my wrists and hands the next. You could see the swelling and almost feel the heat coming off whatever area was hurting that day. My hands looked like I had been in a fight. My knuckles would swell up to almost double normal size and the swelling would go halfway up my arm. When the pain traveled again it went to my knees. I was in such pain just trying to walk from my bed to the bathroom (about 12 steps) that I had to use Carol's cane for several days and thought about getting her walker but I didn't get quite that bad. As the days passed I got to being almost analytical watching the pain traveling from one area to the next in my body. Almost as if I was on the outside of my body looking in and observing what was going on. For example I figured out when the low grade fever started coming on the pain would start intensifying. The pain meds my family practice doctor gave me that were stronger than what I normally take for the fibro pain and they would afford me some time where I wasn't curled up in a whimpering blob on the sofa or asleep in the bed on an average of 12 hours out of the 24.
I'm going to make this a two-parter because I'm getting worn out trying to remember what all went on since the end of August. I can remember 40 years ago great, just don't ask what I had for dinner last night and here I'm trying to recall what went on in my drug induced state for almost two months. I promise not to make you wait for two days, much less two months but I have to take a break for now...
Subscribe to:
Posts (Atom)