Where did September go? This week has been full of me realizing it was the end of September. The house note had to be paid by the 29th and even though I had reminders written down in several places, I almost forgot to pay it. The only way I remembered was that I looked on line at the bank account and saw where my LTD check had been deposited and I knew that it had to go to pay the house note. Yes, house notes are usually due by the 15th. However, when fibro fog and cognitive problems are running rampant, you tend to forget things. Well several months ago, I completely forgot to pay the house note. Yep, didn't even think about it until the mortgage company called and asked if we'd like to continue living here. Fortunately, they were really good about working out a way for us to get caught up over several months and allowed us to make the payment each month when my check came in.
My next realization that it was the end of September came when I realized the light bill was due October 1 and that was Friday! My pain level is so high today because it's been a very long, humiliating and humbling day with me either sitting for hours stiffening up or standing and causing my legs to start swelling. Because I can't work and my LTD is only 50% of what I made and medicine had to be purchased to the tune of almost $500 this month, we can't pay the light bill. There's just no way to make less than $50 pay a $550 light bill. So this morning I was at a local agency by 7:30 to get in line for my chance at part of the funds they have to help the many people that need it these days. Mornings are my worse time of the day. I can barely walk normally. Picture the shuffling feet of a 90 year old woman. That's me in the morning. I got there almost on time and then proceeded to sit for over 2 hours. We were packed into the waiting area so tight, there was no getting up to move around. This resulted in the little old lady shuffle being even worse when I was called back because I was still stiff.
As the social worker was interviewing me, I could tell by the look on her face that I was not making sense. I stopped talking, gathered my thoughts and explained my problems to her. She understood and we started over with her talking slower and me stopping to think about how I was going to answer before I opened my mouth. That was much more successful.
So here I sit stiff and hurting and hoping that tomorrow is a better day in more ways than one.
Thursday, September 30, 2010
September 29, 2010 - Pain Level 8
If you read the post for the 28th, you know that I did not pace myself and enjoy sewing without overdoing it. After going to bed a 5am this morning, I got up around 9:30 when Bill left for work, took my morning handful of pills and went back to bed. I set the alarm for 11:20. I'm not sure how many times I hit the snooze and how long I just plain slept through the alarm going off but I finally got out of bed around 12:15. I felt like I needed more sleep but had to get Bill's lunch made, shower, drop his lunch off at work and get to the church by 2:00 to get the newsletters fold and to the post office before 4. I got it all done and enjoyed my time folding the newsletters and visiting with the church staff. Once I dropped the newsletters off at the post office, the adrenalin or whatever it was that was keeping me going started fading.
I decided to stop at Hobby Lobby and see what they had on the clearance row. I knew that if I went straight home, I would hit the bed and not get up till Thursday morning. I found a birthday present for my best friend and some card making supplies to make her birthday card and a card for our newest granddaughter that's due the end of October. Thank goodness for clearance rows. Without it, we'd never have anything new for us or gifts for others. Hobbies which help me keep my mind going would be nonresistant. But when your family income drops over $30,000 in a two year period sometimes you can't pay for food, medicine and utilities much less hobbies.
People ask why I choose to stay home and not work. CHOOSE????? Why would I choose to have to decide if I'm paying the light bill or the phone bill this month? Why would I choose to decide which of my prescriptions I'm going to have filled this month? Why would I choose to stop working a year after having spent 2 years working to get a degree by taking 18 hours a semester at night and working 40+ hours during the day. My body forced me to stop. Had I had the energy, I would have gone down kicking and screaming but there was no fight left. I wanted to be a paralegal! I wanted to retire at 60 or 65 not at 52.
Most of us work until we literally can no longer get out of bed to go to work. For me, my cognitive abilities went before my body caught up with them. My last year of working, I was learning a new job to go with my brand new college diploma that I received at the "young" age of 51. Finally a college degree and a professional job where I could work my way up to a good living and a good retirement. Fibromyalgia and Chronic Fatigue took that dream away. Beginning 6 months or so before I finally quit working, I could be taught a new task on Monday and by Wednesday, not only could I not remember how to do it, I didn't even remember being taught it. If I didn't write everything down, and I mean that literally, I couldn't remember what anyone said to me or asked me to do. The end of February 2009, the pain and fatigue kicked in with a vengeance. I could barely wake up in the mornings and really thought that I would have to sit down on the bumper of a car in the parking lot to make it into the building the fatigue was so bad. And then the pain. Oh the pain. I would stand over the kitchen sink in the mornings and cry while bending my body all sorts of ways trying to get the pain to ease up so that I could get out of the door. Finally, I couldn't do it and my doc put me on FMLA for 3 weeks. I slept the entire 3 weeks. Almost literally. I got up to go to the bathroom and ate because Bill made me. This was a scary time because Bill was without a job and I was petrified of what I knew was coming but refused to accept. I had to work. I WANTED to work. But the writing was on the wall. I went back to work but it was short lived. I could not keep up the pace that a paralegal has to work at. My memory was getting worse and the pain was excruciating. Finally on May 1, 2009 I could do it no more. I looked at my boss and said, "I'm going on my approved intermittent FMLA". Fortunately, Bill went to work for a company with insurance on May 3 but took an almost 60 % pay cut to have a job.
I am headed to bed now, after not even being up 12 hours. But I'm exhausted and I have to be up by 6:30 in the morning to drive to the MIFA office. Tomorrow will be one of the most humiliating days of my life. MIFA is one of those organizations that help people that have had their finances devastated by illness or job loss. It helps those who have borrowed from Peter to pay Paul until they can't anymore. We've gone from being a family who supported the organization to a family that needs their help. With a $550 light bill and $40 to pay it, I'm going to have to ask for help. Me, the person who has always supported these organizations who help others. Me, who never dreamed in a million years that I would need their help. So as humiliating, humbling and scary as it is, I'll be there with everyone else in my situation, hoping and praying that enough people have been generous with their money so that I can have my light bill paid and we don't have to worry about the lights being cut off Monday.
We are not alone. Everyone I know who suffers from Fibromyalgia suffers a huge economic hurdle because of their illness. We're fortunate that even though the premiums and co-pays are high, Bill's work offers insurance benefits. Most of my friends don't and do without desperately needed medical care and medications. Don't judge a book by it's cover. You don't know the physical and fiscal pain that person is going through.
I decided to stop at Hobby Lobby and see what they had on the clearance row. I knew that if I went straight home, I would hit the bed and not get up till Thursday morning. I found a birthday present for my best friend and some card making supplies to make her birthday card and a card for our newest granddaughter that's due the end of October. Thank goodness for clearance rows. Without it, we'd never have anything new for us or gifts for others. Hobbies which help me keep my mind going would be nonresistant. But when your family income drops over $30,000 in a two year period sometimes you can't pay for food, medicine and utilities much less hobbies.
People ask why I choose to stay home and not work. CHOOSE????? Why would I choose to have to decide if I'm paying the light bill or the phone bill this month? Why would I choose to decide which of my prescriptions I'm going to have filled this month? Why would I choose to stop working a year after having spent 2 years working to get a degree by taking 18 hours a semester at night and working 40+ hours during the day. My body forced me to stop. Had I had the energy, I would have gone down kicking and screaming but there was no fight left. I wanted to be a paralegal! I wanted to retire at 60 or 65 not at 52.
Most of us work until we literally can no longer get out of bed to go to work. For me, my cognitive abilities went before my body caught up with them. My last year of working, I was learning a new job to go with my brand new college diploma that I received at the "young" age of 51. Finally a college degree and a professional job where I could work my way up to a good living and a good retirement. Fibromyalgia and Chronic Fatigue took that dream away. Beginning 6 months or so before I finally quit working, I could be taught a new task on Monday and by Wednesday, not only could I not remember how to do it, I didn't even remember being taught it. If I didn't write everything down, and I mean that literally, I couldn't remember what anyone said to me or asked me to do. The end of February 2009, the pain and fatigue kicked in with a vengeance. I could barely wake up in the mornings and really thought that I would have to sit down on the bumper of a car in the parking lot to make it into the building the fatigue was so bad. And then the pain. Oh the pain. I would stand over the kitchen sink in the mornings and cry while bending my body all sorts of ways trying to get the pain to ease up so that I could get out of the door. Finally, I couldn't do it and my doc put me on FMLA for 3 weeks. I slept the entire 3 weeks. Almost literally. I got up to go to the bathroom and ate because Bill made me. This was a scary time because Bill was without a job and I was petrified of what I knew was coming but refused to accept. I had to work. I WANTED to work. But the writing was on the wall. I went back to work but it was short lived. I could not keep up the pace that a paralegal has to work at. My memory was getting worse and the pain was excruciating. Finally on May 1, 2009 I could do it no more. I looked at my boss and said, "I'm going on my approved intermittent FMLA". Fortunately, Bill went to work for a company with insurance on May 3 but took an almost 60 % pay cut to have a job.
I am headed to bed now, after not even being up 12 hours. But I'm exhausted and I have to be up by 6:30 in the morning to drive to the MIFA office. Tomorrow will be one of the most humiliating days of my life. MIFA is one of those organizations that help people that have had their finances devastated by illness or job loss. It helps those who have borrowed from Peter to pay Paul until they can't anymore. We've gone from being a family who supported the organization to a family that needs their help. With a $550 light bill and $40 to pay it, I'm going to have to ask for help. Me, the person who has always supported these organizations who help others. Me, who never dreamed in a million years that I would need their help. So as humiliating, humbling and scary as it is, I'll be there with everyone else in my situation, hoping and praying that enough people have been generous with their money so that I can have my light bill paid and we don't have to worry about the lights being cut off Monday.
We are not alone. Everyone I know who suffers from Fibromyalgia suffers a huge economic hurdle because of their illness. We're fortunate that even though the premiums and co-pays are high, Bill's work offers insurance benefits. Most of my friends don't and do without desperately needed medical care and medications. Don't judge a book by it's cover. You don't know the physical and fiscal pain that person is going through.
Wednesday, September 29, 2010
September 28, 2010 - Pain level 4
Tuesday was one of the best days I've had in months!! It's for sure the least amount of pain I've had in a while. While really digging having the windows and doors open, I sat at the dining room table and worked on a baby quilt for a friend's new son. It was so good to be creative again. :-) It's almost finished. I'll post a picture when I'm done.
Unfortunately, I was feeling so well that I didn't pace myself properly. :-( I was having so much fun putting my blocks and rows together that I didn't have the common sense to go to bed at a decent hour. That's what happens with those of us who have Fibromyalgia, we finally get a good day and we try to make up for the days, weeks or even months of feeling like death warmed over. The result is a very bad day or days afterward. I finally came to my senses about 5 am Tuesday night/Wednesday morning and went to bed. I really wanted to stay up and finish putting my slashing on the quilt. I got it pinned on and went to bed. I fold newsletters at the church on the fourth Wednesday so no staying in bed all day to recover. What have I done to myself and when will I learn???
Unfortunately, I was feeling so well that I didn't pace myself properly. :-( I was having so much fun putting my blocks and rows together that I didn't have the common sense to go to bed at a decent hour. That's what happens with those of us who have Fibromyalgia, we finally get a good day and we try to make up for the days, weeks or even months of feeling like death warmed over. The result is a very bad day or days afterward. I finally came to my senses about 5 am Tuesday night/Wednesday morning and went to bed. I really wanted to stay up and finish putting my slashing on the quilt. I got it pinned on and went to bed. I fold newsletters at the church on the fourth Wednesday so no staying in bed all day to recover. What have I done to myself and when will I learn???
Tuesday, September 28, 2010
September 27, 2010 - Pain level 5
Today was a good day. My pain is still holding around a 5 and the fatigue seems to be better as well. We got up around 9:30 and were heading out to Bill's mother when our friend Patrick called. He graciously repaired the ceiling in my sewing room where it was damaged from our leaky roof. Fortunately, we had all the supplies we needed for the repairs in the garage. I got the privilege of playing with his daughter, our goddaughter, Kaitie while her dad worked. I feel so fortunate that today was a good day and I had the energy and felt well enough to enjoy having her here. I gave her a bottle and we snuggled up in the chair and I watched Project Runway while she went off to dreamland. Once PR was over, I put her in our bed for her nap. I thought she was going to wake up but instead she rolled over on her side, got her little arm just right and went off to dreamland. I'm trying real hard to learn to pace myself so I watched another tv show to rest and I'm sure I dozed in my chair.
I decided to do some sewing and got out my fabric for a baby blanket I'm making and cut my squares and slashing. I'm really hoping that tomorrow will be another good day and I'll be able to sew my top together and make the "sandwich". A fourth good day would let me get it quilted and the binding on it so that it can get to its new home by the weekend. Four good days in a row? Do I dare hope for that? Am I coming out of the latest flare and going to have good days ahead? That would be so awesome. I can't remember the last time I had a string of good days. With Fibromyalgia you never know. It's so temperamental and can change at the drop of a hat. The morning could be good and within an hour it could all go bad. Or the morning could be bad but then the day can turn around and the afternoon be great. I am hoping and praying that I am going into good days and that I will not overdo and ruin a good thing.
I love the saying "I have Fibromyalgia but it doesn't have me". I have finally accepted the fact that I will never be dependable enough or have the cognitive function to be able to work again. I just don't know what each morning will bring. But I refuse to let it take my whole life while I still have the energy to fight it. I promised myself that I would learn to quilt and would sew again when I retired and by George, I'm going to do it!
I decided to do some sewing and got out my fabric for a baby blanket I'm making and cut my squares and slashing. I'm really hoping that tomorrow will be another good day and I'll be able to sew my top together and make the "sandwich". A fourth good day would let me get it quilted and the binding on it so that it can get to its new home by the weekend. Four good days in a row? Do I dare hope for that? Am I coming out of the latest flare and going to have good days ahead? That would be so awesome. I can't remember the last time I had a string of good days. With Fibromyalgia you never know. It's so temperamental and can change at the drop of a hat. The morning could be good and within an hour it could all go bad. Or the morning could be bad but then the day can turn around and the afternoon be great. I am hoping and praying that I am going into good days and that I will not overdo and ruin a good thing.
I love the saying "I have Fibromyalgia but it doesn't have me". I have finally accepted the fact that I will never be dependable enough or have the cognitive function to be able to work again. I just don't know what each morning will bring. But I refuse to let it take my whole life while I still have the energy to fight it. I promised myself that I would learn to quilt and would sew again when I retired and by George, I'm going to do it!
September 25 - 26, 2010 - Pain levels stayed around 5!!
My body has gotten the Kadian loaded back in and what a difference it has made. I spent a lot of time this weekend sleeping which helped a lot with the fatigue. If my pain stays around a 5 or 6, I'm happy. I'm still in pain but it's doable. I can live and function with it. Someone once asked me if I didn't want to take my pain down to a zero. Of course I do. Who wouldn't? But you have to remember that Fibromyalgia is a progressive disease. Eventually, I'll have to have my pain medicine increased to keep it at a 5 or 6. I don't want to take a chance at building up a tolerance to the pain meds and then having to either go to a stronger pain meds or there be nothing to control it with. It's just a fact of life.
Saturday was a hard day fatigue wise. I wasn't able to get out of bed until almost noon. I really needed to get laundry done, clean up the kitchen, clean the liter boxes and vacuum. I remember when I could do that in an hour. Saturday it took me all day because I had to nap several times. I got up, fixed my diet Coke, sorted the laundry and unloaded and reloaded the dishwasher. I was exhausted. So I napped for a couple of hours. I got up, moved the laundry from the washer to the dryer and started another load. Litter box time. Yuk. Got the rabbit's box done with no problem and headed to the cat's box. That one was a chore but I got it emptied, took it outside and washed, brought it back in and put the clean litter in. Guess what? Nap time. Seriously?? I only slept for an hour and got up and rebooted the laundry again, and folded the clothes and put them away. By now, it's almost 4 so I pushed myself to get the house vacuumed and took a shower. I was so tired I could barely stand. So I climbed back into bed and slept till Bill got home from work. By 9:30, I couldn't stay up any longer and went to bed. I hadn't even been up 12 hours!!! We had planned to go to church Sunday morning but I woke up around 11:15. Bill told me that he didn't wake me up because I had not moved since I went to bed and he felt like I needed the sleep. He is so good to me. I don't know what I would do without him taking care of me.
Sunday was a much better day. I guess I needed the all the sleep that I got Saturday and Sunday. We had a wonderful afternoon and spent some great quality time together. That's a great day in anyone's book.
Saturday was a hard day fatigue wise. I wasn't able to get out of bed until almost noon. I really needed to get laundry done, clean up the kitchen, clean the liter boxes and vacuum. I remember when I could do that in an hour. Saturday it took me all day because I had to nap several times. I got up, fixed my diet Coke, sorted the laundry and unloaded and reloaded the dishwasher. I was exhausted. So I napped for a couple of hours. I got up, moved the laundry from the washer to the dryer and started another load. Litter box time. Yuk. Got the rabbit's box done with no problem and headed to the cat's box. That one was a chore but I got it emptied, took it outside and washed, brought it back in and put the clean litter in. Guess what? Nap time. Seriously?? I only slept for an hour and got up and rebooted the laundry again, and folded the clothes and put them away. By now, it's almost 4 so I pushed myself to get the house vacuumed and took a shower. I was so tired I could barely stand. So I climbed back into bed and slept till Bill got home from work. By 9:30, I couldn't stay up any longer and went to bed. I hadn't even been up 12 hours!!! We had planned to go to church Sunday morning but I woke up around 11:15. Bill told me that he didn't wake me up because I had not moved since I went to bed and he felt like I needed the sleep. He is so good to me. I don't know what I would do without him taking care of me.
Sunday was a much better day. I guess I needed the all the sleep that I got Saturday and Sunday. We had a wonderful afternoon and spent some great quality time together. That's a great day in anyone's book.
Saturday, September 25, 2010
September 20 - 24, 2010 - Pain Levels been up and down
What a week. I can't believe that it's already Friday! This has been such a strange week. Sunday we dropped my Kadian prescription off at Kroger and went by Monday to pick it up. When we got there, they had not had enough to fill the prescription and had to order some more. (Note to self - turn prescription in 7 days before I need it.) I was really disappointed because a) I only had enough for one more day and b) they always have it in stock. I took my last dose Tuesday morning. I had finally gotten my pain to being manageable but without the Kadian it started creeping back up Wednesday. I spent all day Wednesday in bed because by mid afternoon the pain was up to a 10+. As long as I was laying down and dozing, it wasn't so bad. Being up and trying to do something was not good. Thursday I was determine to make it to Bible study and I did, 20 minutes late. Showering and getting dressed required that I lay down and rest between the shower and dressing and then after I dressed. Thursday night Bill picked up my prescription on the way home from work and I took one as soon as he handed it to me. I had another one this morning and the pain is going back down to a decent level. I forced myself to do some grocery shopping today because we had hardly anything left in the house. It took me forever to pick up the few things we needed. I'm headed to bed now and will take another pill before I do. Hopefully once I get Saturday morning's dose on board the pain will go down considerably.
This week has been so reminiscent of my last months at work. There is no way to be dependable with this hideous disease that hides itself from public view but yet wreaks such havoc on our lives. I started getting ready for my 10:30 Bible study at 8. It took me 2 1/2 hours to get ready to make the 15 minute drive to the church. This was how it was when I was working. I kept having to get up earlier and earlier to try to make it there on time. The problem was that my fatigue level kept going up and in order to get enough sleep to be rested enough to get up in time to be on time to work, I would have had to go to bed before I ever left work! I need at least 10-12 hours of sleep because of the Chronic Fatigue. To get to work at 8:30 meant getting up between 5 and 5:30. I certainly didn't ask for all of these disease/syndromes that I have but I have to make the best of the life God has given me. I just wish there was a way to make a decent wage working from home, using the hours that I am most productive and not having to go by someone else's rules. Unfortunately, even if I could find that job, my cognitive problems wouldn't allow me to learn the new tasks that I'd have to learn. But the memory and comprehension is for another day when I can actually remember how those problems affected my day.
This week has been so reminiscent of my last months at work. There is no way to be dependable with this hideous disease that hides itself from public view but yet wreaks such havoc on our lives. I started getting ready for my 10:30 Bible study at 8. It took me 2 1/2 hours to get ready to make the 15 minute drive to the church. This was how it was when I was working. I kept having to get up earlier and earlier to try to make it there on time. The problem was that my fatigue level kept going up and in order to get enough sleep to be rested enough to get up in time to be on time to work, I would have had to go to bed before I ever left work! I need at least 10-12 hours of sleep because of the Chronic Fatigue. To get to work at 8:30 meant getting up between 5 and 5:30. I certainly didn't ask for all of these disease/syndromes that I have but I have to make the best of the life God has given me. I just wish there was a way to make a decent wage working from home, using the hours that I am most productive and not having to go by someone else's rules. Unfortunately, even if I could find that job, my cognitive problems wouldn't allow me to learn the new tasks that I'd have to learn. But the memory and comprehension is for another day when I can actually remember how those problems affected my day.
Monday, September 20, 2010
September 19, 2010 - Pain level 5
Finally!!! My pain is back down to a 5. I feel normal again - whatever normal is. I really wanted to go to church today but couldn't wake up in time. Fortunately, the fatigue has gotten better over the day so I'm hoping I can be a little bit productive Monday. I was able to put the laundry away and to rip apart a wool skirt so I can make either a skirt for one of the girls or a small purse out of it. And I got caught up on my pain journal. I've been up half the night and I'm feeling sleepy so I'm headed to bed. I've not figured out yet why I can be so tired but sleep will not come. Does anyone know the answer to that question?????
See you tomorrow, oops today... hopefully, much earlier!
See you tomorrow, oops today... hopefully, much earlier!
September 17 and 18, 2010 - Pain Level 6
Friday the pain was almost back to normal. Doesn't mean I'm pain free because that never happens but it was down to a 6 Friday and "normal" is a 5 or 6. It would have been nice if the fatigue had gotten better with the pain but it didn't. I still had no energy. With the pain, I can take a pain pill and eventually reach a point where I can move around and do things. The fatigue is not so "generous". There is no way to work though it. I wake up and feel alive and well for about 3 minutes and then realize that I'm too exhausted to get out of the bed. On the 18th Bill and I celebrated our 6th wedding anniversary. I wanted so much to fix him a nice supper when he got home from work but I didn't have the energy. I am so blessed to be married to this wonderful man who takes up the slack of what I can't do. He loves me unconditionally and believes me when I tell him how bad I hurt or how tired i am.
September 16, 2010 - Pain Level 8
Thursday the pain started coming down. It was such a relief. I always have several days of recuperation when I come back from my daughter's but this time has been much worse. I really think that I've had a sinus infection of something along with it this time. It's so sad when a) you can't decide if you are sick or b)is this payback for having a good time. And don't forget about c) even though you have insurance, you can't afford to go to the doctor because you can't pay the co-pay.
I am so blessed that BMHCC pays for Long Term Disability insurance for its employees. Without that, I don't know what we would do. I have on-line friends who are pretty much destitute because they weren't "lucky" enough to have LTD benefits. There has got to be a better way for SSD to operate. The stress that the lack of money puts on me is enormous. With stress comes more pain. With more pain comes more depression. With more pain and depression, comes more stress. It's a viscous circle. There has to be an end to it. This horrible disease has changed my life physically and fiscally. I don't think either will ever be what they were. I'm not applying for SSD because I'm too lazy to work. If that was the case, why did I just about kill myself going back to school to learn a new skill to better myself?
I am so blessed that BMHCC pays for Long Term Disability insurance for its employees. Without that, I don't know what we would do. I have on-line friends who are pretty much destitute because they weren't "lucky" enough to have LTD benefits. There has got to be a better way for SSD to operate. The stress that the lack of money puts on me is enormous. With stress comes more pain. With more pain comes more depression. With more pain and depression, comes more stress. It's a viscous circle. There has to be an end to it. This horrible disease has changed my life physically and fiscally. I don't think either will ever be what they were. I'm not applying for SSD because I'm too lazy to work. If that was the case, why did I just about kill myself going back to school to learn a new skill to better myself?
Thursday, September 16, 2010
September 14 and 15, 2010 - Pain Level 10+
I woke up Tuesday morning as if a ton of bricks had hit me. The pain was so severe that I had no appetite and I could do nothing but lay in bed and moan. I managed to warm up something for supper but all I could get down Tuesday night was a couple of pineapple rings. Wednesday was worse. I ate absolutely nothing. I know I have to eat but it makes me sick to try. I've been drinking lots of water to try and stay hydrated. I've also been running a low grade fever and my lips are dry and cracked. Wednesday night, I cried myself to sleep because the pain in my legs was so severe that I couldn't lay still and the pain meds weren't touching it. Bill had to fix his own supper because I couldn't stand long enough to do it. Why can't I be a normal wife, mother and grandmother? In my mind there is still so much life to live but my body refuses to let me live it. I don't remember the last time I've been this down. All I want to do is pull the covers over my head and cry.
September 13, 2010 - Pain level 7
Monday night I rode the train back to Memphis and was able to sleep a good bit of the way which helped my pain level. It was almost 11p when we got to the house. My heart is aching to be closer to my children and grandchildren but it was aching just as much to be home to my wonderful husband. I wish there was a way to have both but this is where Bill's job is and in this economy, we can't afford for him to not have a job and insurance.
September 12, 2010 - Pain level 8
The more I try to have a normal life the more my pain goes up. We got home from the Celtic Fest and I took a shower and had to nap before I could do anything. I am getting more and more frustrated as it becomes more obvious that I can't be "normal", I can't work and Social Security just keeps denying me. Maybe if they sent someone to spend a couple of days with me, they'd see my limitations. I was unable to post from Sunday till Thursday because of my pain and fatigue. What good is a pain journal if you are in too much pain to post?
Saturday, September 11, 2010
September 11, 2010 - Pain = 7
I am to sleepy to post much tonight. My pain level isn't as bad as I thought it would be but I am so tired I'm falling asleep in my chair. I'm off to bed.. More tomorrow.
September 10 - Pain Level 10+
This is going to be short and to the point. I hurt something awful. My pain is off the scale. I hate this disease. I hate that I had a good time with my son yesterday and now I am in so much pain I can barely move. Why is it that if we try to live a "normal" life we are wracked by pain so bad that we can't to anything for days afterward? All I'm asking is to not have to live the life of an invalid. All I want is to be able to participate in life and enjoy it and not "pay" for it afterward..
Thursday, September 9, 2010
September 9, 2010 - Pain level = 7
My son picked me up this morning for us to go to see the ribbon cutting for the new Engineering building at Jackson State University. He's a Civil Engineering major. After the ribbon cutting, we walked over to the student center and bought a soft drink so that I could take my pain pill. I started out doing pretty well but then the pain in my right knee and hip started going up. The pain got up to about at 9 or 10 but the pain medication helped bring it back down to about a 7 or 8. When I got back to my daughters, I took another pain pill and a nap. The nap helped a little and kept the pain down around a 7. It's still around a 7 so no playing with the grandchildren tonight. :-( My feet and legs are swollen horribly and so I'm wearing my compression hose. Trouble with that is that my most severe myofasical pain is where my legs swell the most making the hose extremely tight. My legs were hurting so badly, I had to take the hose off and cried taking them off they were so tight and painful. I'm headed to bed now and I hope that when I wake up in the morning, all my pain will be back down to a 5. It's so sad that my "normal" is considered to be bad pain by most people.
September 8, 2010 - Pain level = 5
This morning, I was operating on one single hour of sleep in the last 24 and I'm not even real sure that I actually slept that long. Occasionally I just don't sleep and the last couple of days have been like that. I went to bed about 4 a.m. and had to be back up at 5 a.m. to catch the City of New Orleans to Jackson, Mississippi to go see my son for his birthday (I can't believe he turned 29 today!). A trip to Jackson also means seeing my daughter and her husband and kids as well as friends. I live in Memphis because that's where my wonderful husband is from. One day, we'll move back to Mississippi and I look forward to it. I ride the train to and from Jackson because I can stretch my legs out, let the seat back down and sleep all the way home. (It's the home of my childhood going one way and my adult home going the other way.) I got in my sleeping position and tried to sleep but the train was rocking too hard. Fortunately, I was able to walk around and work my kinks out and prop my feet up so my pain stayed about a 5, maybe a 5 1/2. I was thrilled. I took a nap when I got to my daughter's and managed to keep it down. Yeah!!! We'll see what tomorrow looks like.
Wednesday, September 8, 2010
September 7, 2010 - Pain Level 5
This was another day of horrible fatigue but the pain is back to my normal. . I was so incredibley tired but couldn't fall asleep until almost 6 and had to be back up at 9 to take my mother in law to have some blood drawn. Still falling asleep sitting up so I'm off to take a nap.
September 6, 2010 - Pain level 6
My fatigue level is so high that I'm behind making my entries. Today was Labor Day and we did very little labor. :-) I slept until 2pm and really could have slept longer but the phone rang and woke me up. The extra sleep help to lover my pain to a 6. I am still super fatiqued and falling asleep here at the computer so I'm going to sign off for now.
Monday, September 6, 2010
September 5, 2010 - Pain Level 8
I'm late posting for yesterday. My day started out pretty well. It was a beautiful day that God had given us to start our day by going to church to worship Him. About half way through church my knees started to hurt so bad that I could barely sit still. When it came time to go up to the altar to celebrate the Holy Eucharist, I was afraid to kneel because I was hurting so bad that I wasn't sure if I could get up or not. So I stood and I hate when I have to do that. I did ok going up the 3 steps to the altar but had to have help getting down. When we got in the car, I took a couple of breakthrough pain pills. They helped a little which was good because we were headed to my mother-in-law's for the day. She lives on the second floor and I didn't think I was going to make it up the stairs to her apartment my knees and legs hurt so badly. After a nice lunch, I was ready to rest. She needed to go to the grocery store (she can no longer drive due to being legally blind) and I didn't have a list with me and I didn't know what to tell Bill we needed. So, I put my shoes back on to go to Kroger with them.
Bill went with his mother to help her shop and I took off by myself. My goal was to get everything we needed and go sit down in the deli area until they finished. And that was what I did. I know they really weren't that long finishing up after me but it seemed like forever. When we were leaving the store, I asked Bill to help his mother to the car so that I could lean on the cart. We were parked in the first handicapped spot from the door but I may as well have walked a mile. The pain was so intense just from walking through the grocery store. Bill got his mother in the car and then put the groceries in the trunk while I crawled in the car and stretch out best I could on the back seat. I always wear my seat belt but not Sunday afternoon. There was no way I could stand the idea of bending my knees to sit normally in the car. My feet had begun to feel like I had construction bricks for shoes.
When we got back to her apartment, I had to tackle the stairs again. It hurt even worse walking up the stairs again. We got upstairs and Bill helped her get the groceries put away and I hit the couch.
I felt so guilty not helping with anything. Usually I wash the dishes after lunch but I just couldn't do it Sunday so an 83 year old with knees that need replacing did them. Bill and I usually put her groceries away together. But no, I couldn't do it. I feel useless, helpless and like a burden to my family a good bit of the time because everyone else is working and I'm sitting on the couch in tears because the pain has gotten so intense. This is the life I've been given but I'm still not sure how I'm supposed to live it.
Bill went with his mother to help her shop and I took off by myself. My goal was to get everything we needed and go sit down in the deli area until they finished. And that was what I did. I know they really weren't that long finishing up after me but it seemed like forever. When we were leaving the store, I asked Bill to help his mother to the car so that I could lean on the cart. We were parked in the first handicapped spot from the door but I may as well have walked a mile. The pain was so intense just from walking through the grocery store. Bill got his mother in the car and then put the groceries in the trunk while I crawled in the car and stretch out best I could on the back seat. I always wear my seat belt but not Sunday afternoon. There was no way I could stand the idea of bending my knees to sit normally in the car. My feet had begun to feel like I had construction bricks for shoes.
When we got back to her apartment, I had to tackle the stairs again. It hurt even worse walking up the stairs again. We got upstairs and Bill helped her get the groceries put away and I hit the couch.
I felt so guilty not helping with anything. Usually I wash the dishes after lunch but I just couldn't do it Sunday so an 83 year old with knees that need replacing did them. Bill and I usually put her groceries away together. But no, I couldn't do it. I feel useless, helpless and like a burden to my family a good bit of the time because everyone else is working and I'm sitting on the couch in tears because the pain has gotten so intense. This is the life I've been given but I'm still not sure how I'm supposed to live it.
Sunday, September 5, 2010
September 4, 2010 Pain = 7
Today was fairly productive. I was actually able to get out the door by 11 am. Not bad considering I didn't get up until 8. It only took me two hours to drive 4 miles to the bank, make a deposit at the drive up window and then go to Walmart and pick up 6 items. By the time I got home, my head was pounding but I stayed up instead of taking a nap so that maybe I can get my sleep pattern back on schedule. My biggest accomplishment for the day was that I was able to sort my button stash by color and match up sets if I came across them.
Keep in mind that I got up at 8 am. It's now 2.23 AM and I am just now beginning to get sleepy enough to go to bed and hopefully fall asleep. I just don't understand how I can sleep 18 hours one day and the next not be able to fall asleep for 20 hours or so. I did take advantage of being up and have showered and washed my hair for church in the morning. Since I'm up so late, I'll need have as much prep done as I can to get there by 10:45. Bill's ushering and I really want to go to church. So I have to be ready to leave by 10:20 because ushers can't be late. I don't want to take two cars because I think it's a waste of gas and because I am cutting back more and more of my driving because it's beginning to be difficult with the cognitive function problems
Good night all.
Keep in mind that I got up at 8 am. It's now 2.23 AM and I am just now beginning to get sleepy enough to go to bed and hopefully fall asleep. I just don't understand how I can sleep 18 hours one day and the next not be able to fall asleep for 20 hours or so. I did take advantage of being up and have showered and washed my hair for church in the morning. Since I'm up so late, I'll need have as much prep done as I can to get there by 10:45. Bill's ushering and I really want to go to church. So I have to be ready to leave by 10:20 because ushers can't be late. I don't want to take two cars because I think it's a waste of gas and because I am cutting back more and more of my driving because it's beginning to be difficult with the cognitive function problems
Good night all.
Friday, September 3, 2010
September 3,2010 - Pain level 9
Today was one of those strange days. I woke up this morning about 4:30 a.m. and felt pretty good. Fixed Bill's lunch, cleaned the living room, dining room and kitchen and then checked email before 8 a.m. I ran a couple of errands and came home and started organizing my new sewing room. It's going to be so nice to have a room dedicated to my sewing and crafting. I'll be able to just turn off the light when I finish sewing and not have to put things up. Sometimes when I have to get everything out, I'm too exhausted to sew or craft by the time everything is set up. So this will be nice if I ever get it organized.
I got some depressing news today. It seems in rare cases you can have a recurrence or flare of Guillain Barre Syndrome just like fibro and chronic fatigue. What joy - not! After my friend Janie told me about it I did several Google searches. The general consensus seems to be that only 2% of those who have had GBS will have a recurrence but when you figure that those of us who have had this rare disease account for only 5% of the population, it seems we have a good chance for recurrence. So now I'm left to wonder - is the numbness and heaviness in my arms a recurrence of the GBS or is it FMS? What about the problem I'm having with my eyesight "going south" suddenly? My legs are feeling so heavy. What's up with that? And the fatigue is worse than it has been in a long time. My head even feels too heavy to hold it up.
So here's the strange part of the day which is really not unusual. Around 5pm, I began to feel tired, got the old fibro fog going and my pain levels shot up. All in about 45 minutes. We didn't have anything planned but a quiet night at home which is a good thing. There's no way that I could go anywhere.
Anyone want to take a guess as to how tomorrow will go? Will I feel like crap at bedtime or will I have the energy to continue my story about my life with fibro pain.
I got some depressing news today. It seems in rare cases you can have a recurrence or flare of Guillain Barre Syndrome just like fibro and chronic fatigue. What joy - not! After my friend Janie told me about it I did several Google searches. The general consensus seems to be that only 2% of those who have had GBS will have a recurrence but when you figure that those of us who have had this rare disease account for only 5% of the population, it seems we have a good chance for recurrence. So now I'm left to wonder - is the numbness and heaviness in my arms a recurrence of the GBS or is it FMS? What about the problem I'm having with my eyesight "going south" suddenly? My legs are feeling so heavy. What's up with that? And the fatigue is worse than it has been in a long time. My head even feels too heavy to hold it up.
So here's the strange part of the day which is really not unusual. Around 5pm, I began to feel tired, got the old fibro fog going and my pain levels shot up. All in about 45 minutes. We didn't have anything planned but a quiet night at home which is a good thing. There's no way that I could go anywhere.
Anyone want to take a guess as to how tomorrow will go? Will I feel like crap at bedtime or will I have the energy to continue my story about my life with fibro pain.
Welcome to My Life with Fibromyalgia Pain
This blog is going to serve as my pain diary. Pain diary you ask? Yes, Pain diary. I am in the process of applying for Social Security Disability. I’ve already been denied twice and now I’m waiting for a hearing before an Administrative Law Judge. Part of the evidence that my attorney and I will submit is my pain diary. I began keeping a pain diary when I first got too sick to work. It was hand written and in a big official looking black bound journal. The problem is, my hands hurt so badly at times that I can’t hold the pen to write. If I keep trying, I may be able to write a little but even I can’t read it. For some reason typing isn’t as difficult. I thought of just having a typed journal kept safe on my hard drive to print off and take to the hearing. Then I decided that if I was able to help just one person by sharing how I became ill and my trials with life that it was worth putting it out for all to see.
I suffer from Fibromyalgia, Chronic Myofascial Pain, Chronic Fatigue Syndrome, Short Term Memory Loss, Peripheral Neuropathy and Peripheral Edema. My Internist interprets my SED rate as positive for Rheumatoid Arthritis but my Rheumatologist says it’s not quiet high enough. Most of these are Autoimmune Disorders. All of these conditions add up to one thing – I am in pain 24 hours a day, 7 days a week. Even with prescription pain medication, I live with pain that is around a 5 or 6 on that scale they show you at the doctor’s office. On a bad day, 10, the highest number on their scale, in no way describes the pain that I feel.
I am not alone. Fibromyalgia alone affects over three million people in the United States alone. You can develop fibromyalgia syndrome (FMS) at any age, though, typically, a diagnosis will be made between the ages of twenty and sixty. Fibromyalgia tends to hit people during their middle adult years and those who are diagnosed with fibromyalgia feel the burden of FMS at points in their lives when they are at their busiest. That was true with me when my fibro got so severe I couldn't work. I had finally gotten a college degree at 52 and begun a career as a paralegal. When people ask me why I don't work, I tend to want to slap them. Instead of that, I tell them about how I worked 40 - 45 hours a week, carried an 18 hour class load and maintained a 4.0 average in college. I tell them about how I started being unable to remember how to do tasks in my new job. I would be taught a new tasks and two days later, not only did I not remember how to do it, I didn't even remember being taught how. I tell them about the days of dragging myself out of bed to go to work and standing over the sink in the so much pain that I was throwing up. I tell them about pain literally so bad that I had to crawl from the bed to the bathroom because I couldn't stand up. I finish my story with a recap of the day that my supervisor and I sat down and talked and I realized that I could never learn a new tasks and was losing my ability to remember what I did know. It was at that point that I knew I had to let my pain win and give up. I fought a good fight against Fibromyalgia but in the end, it beat me to the curb.
I first begin to experience fibro symptoms after a case of Guillain Barre Syndrome (GBS), an autoimmune disorder, when I was 14 years old. GBS is a rare disease that can be life threatening. It occurs after a viral or bacterial infection. GBS initially affects the peripheral nervous system. I believe that I had Miller Fisher Syndrome, (MFS) a common clinical variant of GBS, it’s identified in approximately in 5% of all Guillain Barre Syndrome cases. It is a syndrome of acute external ophthalmoplegia, ataxia and areflexia without significant motor or sensory deficit in the limbs. MFS causes descending paralysis, i.e. paralysis that begins in the upper body and gradually spreads downward. The difference between MFS and GBS is that different nerve groups are affected such that paralysis in GBS tends to start in the legs and move up, where in MFS it starts in the head, affecting eye muscles, balance and slowly descends to the neck, arms, etc. MFS does not generally have the life threatening aspects of GBS but can be very difficult to live through with double vision, nausea, weakness, difficulty. There is a close connection between antiganglioside antibodies which cause Peripheral Neuropathy and the Miller Fisher Syndrome. When I had MFS, I could walk ok. The problem came in with navigating something as simple as stepping up onto or down from a sidewalk and I couldn't climb steps
I still suffer from areflexia, the absence of neurologic reflexes such as the knee jerk reaction and Ataxia – wobbliness, incoordination and unsteadiness due to the brain's failure to regulate the body's posture and regulate the strength and direction of limb. I believe that I have remnants of Ophthalmoplegia, a paralysis or weakness of one or more of the muscles that control eye movement. The condition can be caused by any of several neurologic disorders. It may be myopathic, meaning that the muscles controlling eye movements are directly involved, or neurogenic, meaning that the nerve pathways controlling eye muscles are affected.
Tomorrow we’ll talk about how my Fibromyalgia has progressed over the last 40 years.
What's Wrong With Me
I suffer from Fibromyalgia, Chronic Myofascial Pain, Chronic Fatigue Syndrome, Short Term Memory Loss, Peripheral Neuropathy and Peripheral Edema. My Internist interprets my SED rate as positive for Rheumatoid Arthritis but my Rheumatologist says it’s not quiet high enough. Most of these are Autoimmune Disorders. All of these conditions add up to one thing – I am in pain 24 hours a day, 7 days a week. Even with prescription pain medication, I live with pain that is around a 5 or 6 on that scale they show you at the doctor’s office. On a bad day, 10, the highest number on their scale, in no way describes the pain that I feel.
I am not alone. Fibromyalgia alone affects over three million people in the United States alone. You can develop fibromyalgia syndrome (FMS) at any age, though, typically, a diagnosis will be made between the ages of twenty and sixty. Fibromyalgia tends to hit people during their middle adult years and those who are diagnosed with fibromyalgia feel the burden of FMS at points in their lives when they are at their busiest. That was true with me when my fibro got so severe I couldn't work. I had finally gotten a college degree at 52 and begun a career as a paralegal. When people ask me why I don't work, I tend to want to slap them. Instead of that, I tell them about how I worked 40 - 45 hours a week, carried an 18 hour class load and maintained a 4.0 average in college. I tell them about how I started being unable to remember how to do tasks in my new job. I would be taught a new tasks and two days later, not only did I not remember how to do it, I didn't even remember being taught how. I tell them about the days of dragging myself out of bed to go to work and standing over the sink in the so much pain that I was throwing up. I tell them about pain literally so bad that I had to crawl from the bed to the bathroom because I couldn't stand up. I finish my story with a recap of the day that my supervisor and I sat down and talked and I realized that I could never learn a new tasks and was losing my ability to remember what I did know. It was at that point that I knew I had to let my pain win and give up. I fought a good fight against Fibromyalgia but in the end, it beat me to the curb.
How Did I Get Here?
I first begin to experience fibro symptoms after a case of Guillain Barre Syndrome (GBS), an autoimmune disorder, when I was 14 years old. GBS is a rare disease that can be life threatening. It occurs after a viral or bacterial infection. GBS initially affects the peripheral nervous system. I believe that I had Miller Fisher Syndrome, (MFS) a common clinical variant of GBS, it’s identified in approximately in 5% of all Guillain Barre Syndrome cases. It is a syndrome of acute external ophthalmoplegia, ataxia and areflexia without significant motor or sensory deficit in the limbs. MFS causes descending paralysis, i.e. paralysis that begins in the upper body and gradually spreads downward. The difference between MFS and GBS is that different nerve groups are affected such that paralysis in GBS tends to start in the legs and move up, where in MFS it starts in the head, affecting eye muscles, balance and slowly descends to the neck, arms, etc. MFS does not generally have the life threatening aspects of GBS but can be very difficult to live through with double vision, nausea, weakness, difficulty. There is a close connection between antiganglioside antibodies which cause Peripheral Neuropathy and the Miller Fisher Syndrome. When I had MFS, I could walk ok. The problem came in with navigating something as simple as stepping up onto or down from a sidewalk and I couldn't climb steps
I still suffer from areflexia, the absence of neurologic reflexes such as the knee jerk reaction and Ataxia – wobbliness, incoordination and unsteadiness due to the brain's failure to regulate the body's posture and regulate the strength and direction of limb. I believe that I have remnants of Ophthalmoplegia, a paralysis or weakness of one or more of the muscles that control eye movement. The condition can be caused by any of several neurologic disorders. It may be myopathic, meaning that the muscles controlling eye movements are directly involved, or neurogenic, meaning that the nerve pathways controlling eye muscles are affected.
Tomorrow we’ll talk about how my Fibromyalgia has progressed over the last 40 years.
My Pain for Today
September 2, 2010: My pain today has gone up and down from the usual 5 to a 9. I’ve had a headache and hurt so bad that I slept about 18 hours of the last 24. I managed to get up for a couple of hours to drag myself to the bank with Bill to sign some paperwork. As soon as I got home I went back to bed and slept from 9:45 a.m. to 3:30 p.m. Got up, took some more medicine and was back asleep till 6:15 p.m. I had no energy to do anything but sleep.
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