Thank goodness the pain has come back down quickly. I'm back to my usual 5 or 6 so I guess that means that the new meds are working. Dr. D added Nortriptyline, a tricyclic antidepressant used to treat chronic pain. I've not had much leg pain at all since I started it so it appears to be working. She also wrote a script for outrageously priced Lyrica but my co-pay is $60 and I just can't afford it. Since the reasonably priced generic Nortiptyline ($8.00 co-pay) seems to be working fine alone, I'm not going to get the Lyrica filled. I took Lyrica from April 2009 till January 2010 and it made a difference for about 6 months. Then as quick as it had made a difference in the pain, it stopped working. My question to her was "why do you think it would work this time?" Her response was that maybe it was working and I didn't realize it. I can tell you it wasn't working because there was no difference in how I felt after I went off of it 10 months ago. If it wasn't working 10 months ago, why would it work now? I would be remiss if I didn't admit that I'm waiting for the pain to come back. That's the way these horrendous diseases I have act. I feel my physical body is pain bi-polar and subject to change at a moments notice. With fibro, chronic fatigue, neuropathy and myofascial pain you're pain free one day and in so much pain you can hardly breathe the next. Did I say the next day? I need to correct that because I can be pain free one minute and in agony the next minute.
Monday and Tuesday stress brought my pain up to a 7 or 8. The spin switch on the washer decided to die and I was stressing about how much it was going to cost to fix it and how we were going to pay for it. I had to pull the laundry out of the water and wring them out. There were 3 pairs of jeans in the load and they were so heavy and awkward to deal with. I could feel my pain going up. Thankfully Bill was home so he took over the job for me. Then he loaded them in the car and we went to the laundromat. Sitting on the wooden benches waiting for our laundry to be done sent the pain up a little bit more. I had to take a couple of breakthrough pain pills and just knew that this morning I would wake up unable to move. It was great to be surprised and wake up without pain. It's days like yesterday that remind me that I can't make plans too far ahead and that I won't ever be dependable again. I just never know how I'm going to feel from one hour to another much less one day to the next.
It's bedtime now and my shoulder and neck pain is going up again so I'm off to take my medicine and hit the hay.
Wednesday, October 27, 2010
Thursday, October 21, 2010
More medicine! Oh Yeah! October 20,2010 Pain Level 8
I slept until 11:45 today. Would have slept longer but I had a 2:00 appointment with the pain management doctor. Yesterday's rain really did a number on me and it wasn't even a hard or long rain. The middle of the afternoon yesterday the pain started going up and kept going. This morning the pain was still there and just as bad. As the day progressed it got worse because in addition to the increased fibro pain (and it got worse the longer I sat), the neuropathy pain got worse as I had to walk a long distance to get several places. Sitting at Dr. D's office always makes the pain worse because let's face it, chairs in waiting room are not designed for comfort. I love my pain management doctor but it's always a long wait to see her. The reason that it's a long wait is because of what makes her patients love her so much. Dr. D treats you like you are the only patient she has and never lets on that there is 5 or 6 people waiting to see her. She and I had a good talk about how the pain from the neuropathy has increased and what we could do for it. I came home with three new medicines to try to help the increased pain. I've often said that I can live with pain at a 5 or even a 6 but when it gets beyond that, I need help. I can't function if it gets above that. I guess I'm a just a baby when it comes to pain.
I'll keep you posted as far as how the new meds do.
I'll keep you posted as far as how the new meds do.
Tuesday, October 19, 2010
It's raining. Just what I didn't need. October 19, 2010
I'm not sure what the humidity is but it's 100% in my body. The rain is just a light sprinkling but the damp is ripping my muscles apart. It's 61 degrees which is on the cold end for me so I'd be having more pain today anyway. But throw in the dampness and I'm miserable. The only thing I've been able to accomplish today is sitting in the chair with my feet propped up checking my email and Facebook.
My legs are still aching something horrendous. For now, the burning has gone away. I guess this is what I have to look forward to with the neuropathy. Add the pain the damp weather has flared up and I can barely stand. My arms feel like lead weights. I once typed close to a hundred words a minute. Now I'm doing good to do twenty and today I may not be doing even that. Since I have the lap top on my lap, my arms are resting in my lap as well. That's a good think because I don't think I could hold them up to type. My head feels like an lead weight as well. I have a horrible headache and my neck feels like someone took a baseball bat to it. As I sit here, I keep dozing off so I guess I'll have to go take a nap soon. That's not how I wanted to spend Bill's day off. :-(
My legs are still aching something horrendous. For now, the burning has gone away. I guess this is what I have to look forward to with the neuropathy. Add the pain the damp weather has flared up and I can barely stand. My arms feel like lead weights. I once typed close to a hundred words a minute. Now I'm doing good to do twenty and today I may not be doing even that. Since I have the lap top on my lap, my arms are resting in my lap as well. That's a good think because I don't think I could hold them up to type. My head feels like an lead weight as well. I have a horrible headache and my neck feels like someone took a baseball bat to it. As I sit here, I keep dozing off so I guess I'll have to go take a nap soon. That's not how I wanted to spend Bill's day off. :-(
Sunday, October 17, 2010
Good days, Bad days and Learning to Adapt: September 10 - 17, 2010
This past week has been one of ups and downs much like the week before. Tuesday we went to visit Bill's mother but my legs were hurting so bad that I sat in the car and napped while they shopped at Walmart. I knew I would never be able to make it through the store. Friday I had to go to the store if we were going to eat and I was exhausted from the walking when I finished. Had I remembered to get one, I would have used one of the motorized carts but I didn't remember until I was halfway through with my shopping and wondering if I was going to make it to the check out.
Mornings are beginning to be harder again as the temperatures are beginning to drop into the 40s at night. When that happens, I can barely move until it warms up around noon. Late evenings are beginning to be hard as well because as the temps go down, it gets more and more difficult to walk. To say that I walk like an old lady would be an insult to old ladies! Most of them walk better than I do.
I've tried to accomplish as much as I possibly can during these good weeks. I hope to have a few more because I'd like to accomplish a little bit more before winter weather shuts me down for a while. I'm setting up a dedicated sewing room so that I can feel like I have somewhere to be productive. It really helps with the depression to feel like I can contribute something to the household even if it's just sewing my own clothing and gifts.
With fibromyalgia, neuropathy and arthritis, it's all about finding a new way to do things that is less painful. I say less painful because there is no such thing in my life as pain free anymore. Hand sewing is difficult because of the arthritis in my hands. Thank goodness for my sewing machine. Using scissors is difficult these days as well but I've learned to use a 60mm rotary cuter to cut most things. I have a smaller one that I can use when my hands are not quiet as bad. Last year for Christmas, Bill bought me a new sewing machine that can be operated without a foot pedal. I prefer to use the foot pedal but on days like I've had this week, it's nice to have that option. I spent most of the last week feeling as though my legs were on fire under my skin. My feet were numb and had the pins and needles thing gong as well as "falling asleep" so that I couldn't feel the foot pedal. Being able to sew with the push of a button was good. Anything I can do like that helps with the depression. I WANT to be a productive member of society. Unfortunately, MY BODY WILL NOT cooperate.
As I type this, my right hand is swollen and hurts. Especially the middle finger. That poor finger hurts so bad and is swollen much more than the others. The knuckle closest to my hand (is that one the first knuckle?) is so large that I can't straighten it out. Holding a pen or pencil is out of the question. Typing is painful but not as much because I've learned how to hold my hands to cut the pain some.
Memory becomes a bigger problem every day. I've pulled out my Daytimer from my working days to make lists in one place in something that's easy to find . I've also started putting notes from important phone calls there as well because I forget what arrangements, etc. I've made about our bills and that kind of thing. I've got notes in my phone too. The notes in my phone have kept me from buying patterns or supplies that I already have more than once. There's a reason that pattern was cute - I've already bought it. Yes, I did need a 3" block template - last month when I bought it.
It's time to rest my hands because my pain is up to a 7 or 8 from writing this. Thank you for sharing my life.
Mornings are beginning to be harder again as the temperatures are beginning to drop into the 40s at night. When that happens, I can barely move until it warms up around noon. Late evenings are beginning to be hard as well because as the temps go down, it gets more and more difficult to walk. To say that I walk like an old lady would be an insult to old ladies! Most of them walk better than I do.
I've tried to accomplish as much as I possibly can during these good weeks. I hope to have a few more because I'd like to accomplish a little bit more before winter weather shuts me down for a while. I'm setting up a dedicated sewing room so that I can feel like I have somewhere to be productive. It really helps with the depression to feel like I can contribute something to the household even if it's just sewing my own clothing and gifts.
With fibromyalgia, neuropathy and arthritis, it's all about finding a new way to do things that is less painful. I say less painful because there is no such thing in my life as pain free anymore. Hand sewing is difficult because of the arthritis in my hands. Thank goodness for my sewing machine. Using scissors is difficult these days as well but I've learned to use a 60mm rotary cuter to cut most things. I have a smaller one that I can use when my hands are not quiet as bad. Last year for Christmas, Bill bought me a new sewing machine that can be operated without a foot pedal. I prefer to use the foot pedal but on days like I've had this week, it's nice to have that option. I spent most of the last week feeling as though my legs were on fire under my skin. My feet were numb and had the pins and needles thing gong as well as "falling asleep" so that I couldn't feel the foot pedal. Being able to sew with the push of a button was good. Anything I can do like that helps with the depression. I WANT to be a productive member of society. Unfortunately, MY BODY WILL NOT cooperate.
As I type this, my right hand is swollen and hurts. Especially the middle finger. That poor finger hurts so bad and is swollen much more than the others. The knuckle closest to my hand (is that one the first knuckle?) is so large that I can't straighten it out. Holding a pen or pencil is out of the question. Typing is painful but not as much because I've learned how to hold my hands to cut the pain some.
Memory becomes a bigger problem every day. I've pulled out my Daytimer from my working days to make lists in one place in something that's easy to find . I've also started putting notes from important phone calls there as well because I forget what arrangements, etc. I've made about our bills and that kind of thing. I've got notes in my phone too. The notes in my phone have kept me from buying patterns or supplies that I already have more than once. There's a reason that pattern was cute - I've already bought it. Yes, I did need a 3" block template - last month when I bought it.
It's time to rest my hands because my pain is up to a 7 or 8 from writing this. Thank you for sharing my life.
Sunday, October 10, 2010
It's been a good week :-) October 1 - 8, 2010
The last week of September was one of the most stressful that I've had in a long time. Stress = pain. It was crazy with the pain levels going up and down every day. Sometimes more than once in the same day. The life of a fibromite! The only thing that is predictable, is that fibromyalgia is unpredictable. Fortunately, the light bill got paid through the generosity of a couple of wonderful people. It was very humbling having to ask for help. I'm accustom to helping others, not being the one needing help.
Once that crisis was over, My pain level started falling from the 9 it had gone up to on Thursday. Saturday morning, it was back down to a 6 or 7. By Monday, my pain was at a 4 or 5. That's my goal for my pain. There's still a good bit of pain at that level but it's a point where I can function. I am loving it. I know that winter will be here soon but I plan to enjoy this break from the weather and get some sewing done.
Monday, Tuesday and Wednesday were good days and my pain stayed at my goal of a 4 or 5. For some reason I woke up Thursday in a good bit of pain. It was up to a 7 or 8. I had planned to go to Bible study at 10:30 but I couldn't move fast enough. I was hurting too bad to get dressed much less leave home. I went back to bed and slept till noon and was successful. There was a mailing at the church that I had promised to do and I was able to go do it. All I did was sit at a table and fold a one page letter, stuff it in the envelope and run it through the postage machine I got so stiff even with getting up own a regular basis and walking around for a few minutes. I had to stop by the grocery store on the way home and by the time I made it home, I was exhausted. The bed was calling my name and I climbed in and slept for several hours and still didn't have the energy to get up and do anything but move to the couch. I spent a little time with Bill but was back in bed by 9pm.
Friday morning I slept until I woke up and the fatigue had started going away but I was still moving slow. Amazingly, my pain went back down while I was sleeping. This morning I was able to be productive and traced a pattern to make me a top. Hopefully, I will feel like sewing it it the morning. I had lunch with two friends today and it was good to get out and spend time with people who have hung in hear. One of them has fibro too and we compared notes on how we were doing with the weather change.
I'm off to bed. I hope everyone has a great and relatively pain free week.
Cynthia
Once that crisis was over, My pain level started falling from the 9 it had gone up to on Thursday. Saturday morning, it was back down to a 6 or 7. By Monday, my pain was at a 4 or 5. That's my goal for my pain. There's still a good bit of pain at that level but it's a point where I can function. I am loving it. I know that winter will be here soon but I plan to enjoy this break from the weather and get some sewing done.
Monday, Tuesday and Wednesday were good days and my pain stayed at my goal of a 4 or 5. For some reason I woke up Thursday in a good bit of pain. It was up to a 7 or 8. I had planned to go to Bible study at 10:30 but I couldn't move fast enough. I was hurting too bad to get dressed much less leave home. I went back to bed and slept till noon and was successful. There was a mailing at the church that I had promised to do and I was able to go do it. All I did was sit at a table and fold a one page letter, stuff it in the envelope and run it through the postage machine I got so stiff even with getting up own a regular basis and walking around for a few minutes. I had to stop by the grocery store on the way home and by the time I made it home, I was exhausted. The bed was calling my name and I climbed in and slept for several hours and still didn't have the energy to get up and do anything but move to the couch. I spent a little time with Bill but was back in bed by 9pm.
Friday morning I slept until I woke up and the fatigue had started going away but I was still moving slow. Amazingly, my pain went back down while I was sleeping. This morning I was able to be productive and traced a pattern to make me a top. Hopefully, I will feel like sewing it it the morning. I had lunch with two friends today and it was good to get out and spend time with people who have hung in hear. One of them has fibro too and we compared notes on how we were doing with the weather change.
I'm off to bed. I hope everyone has a great and relatively pain free week.
Cynthia
Thursday, September 30, 2010
September 30, 2010 - Pain Level 9
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.
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.
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.
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