I have a bit of optimism today. Nearly two years ago I stopped working because it was too tiring for me. I fell asleep at my desk a couple of times and would frequently struggle to stay alert on the way home after a long four hour work day.
Pain isn't my enemy. Pain can be controlled. Fatigue can not be controlled. Its not that I need to nap every day. But I need to rest every day. I can't stand for any length of time or my back hurts. I need my rest. Call me a wimp but that's what it is.
I applied for Social Security Disability in the spring of 2016. I have been denied twice so I had a hearing in front of a judge yesterday. My attorney made some good points with the judge.
I have cautious optimism that I will get a positive decision from the judge before the end of the year. Actually I can only be cautiously optimistic that I will be approved. I have no other choices....
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Thursday, October 26, 2017
Sunday, June 18, 2017
The Combination Diagnosis
Presto, you were a healthy person, who in addition to going out for drinks and appetizers with friends on weekends, you also used to go to the gym, hike, bike, swim, blah, blah, blah. All sorts of activities. Then, the ball drops. Now you have cancer and another ailment which prevents you from doing much of everything.
You read about those 'other' cancer people, who took their athleticism to new heights after their cancer diagnosis. They climb not just mole hills, but Mounts Everest and Denali in the same month. They learn to stand on the big fat boards and pole their way across the Pacific. They boast about their return to health by stretching their athletic abilities 1000 fold. They walk 40 miles, or 39, or 60, to show their resolve to be healed and have their new normal. Their doctors and the rest of their medical team applaud their efforts to become and athletic over-achiever.
(Honestly, I find them a tad nauseating. I mean shouldn't you be happy doing everything you used to do once your hair grows back and you find some energy?)
During chemo, my doctors thought I was great because I would take a walk every day during treatment. Then my body decided to fall apart along the way.
Me, on the other hand, manage to walk to the end of the street and back on a good day. I try to fit in a little weaving and knitting as well.
Now I do go to the gym to help me along but it is a struggle. I only can go to the gym because I have the support of physical therapists and I was already exercising there before RA and fibromyalgia. I fight the urge to nap between making meals.... (what is wrong with a nap after breakfast anyway?)
Finally, I found someone else who feels the same way. Kelly Irvin, wrote for Cure Magazine and has Ovarian cancer and primary lateral sclerosis (PLS), said:
"My range of motion is severely limited. I recently graduated from a cane to a walker. A once active seven-day-a-week queen of aerobics, I now struggle to walk to the mailbox. How do the cancer ninjas in my boat reap the benefits of exercise that include reducing stress, keeping extra weight off or losing weight, maintaining muscle mass and fighting off the side effects of chemo such as fatigue and hypertension?"
"...we can exercise our joy muscles..."
"Find the activities that make you smile. Do them regularly. We can also find the spiritual exercise that calms our souls. For me, that means I can exercise my faith muscle—the one that offers me hope because I’m reminded that someday I’ll shed my scarred, limping body and dance the two-step with my heavenly Father. That muscle goes arm-in-arm with the empathy muscle. I exercise it when I pray for others who are paralyzed and receive cancer treatment in their wheelchairs. I need only look left or right to see others who exercise their courage muscles every day. Exercise comes in many forms. We don’t have to scale Mt. Everest or finish a triathlon to reap its benefits. We simply must get in the game—our game."
You read about those 'other' cancer people, who took their athleticism to new heights after their cancer diagnosis. They climb not just mole hills, but Mounts Everest and Denali in the same month. They learn to stand on the big fat boards and pole their way across the Pacific. They boast about their return to health by stretching their athletic abilities 1000 fold. They walk 40 miles, or 39, or 60, to show their resolve to be healed and have their new normal. Their doctors and the rest of their medical team applaud their efforts to become and athletic over-achiever.
(Honestly, I find them a tad nauseating. I mean shouldn't you be happy doing everything you used to do once your hair grows back and you find some energy?)
During chemo, my doctors thought I was great because I would take a walk every day during treatment. Then my body decided to fall apart along the way.
Me, on the other hand, manage to walk to the end of the street and back on a good day. I try to fit in a little weaving and knitting as well.
Now I do go to the gym to help me along but it is a struggle. I only can go to the gym because I have the support of physical therapists and I was already exercising there before RA and fibromyalgia. I fight the urge to nap between making meals.... (what is wrong with a nap after breakfast anyway?)
Finally, I found someone else who feels the same way. Kelly Irvin, wrote for Cure Magazine and has Ovarian cancer and primary lateral sclerosis (PLS), said:
"My range of motion is severely limited. I recently graduated from a cane to a walker. A once active seven-day-a-week queen of aerobics, I now struggle to walk to the mailbox. How do the cancer ninjas in my boat reap the benefits of exercise that include reducing stress, keeping extra weight off or losing weight, maintaining muscle mass and fighting off the side effects of chemo such as fatigue and hypertension?"
Her advice includes;
"...we can exercise our joy muscles..."
"Find the activities that make you smile. Do them regularly. We can also find the spiritual exercise that calms our souls. For me, that means I can exercise my faith muscle—the one that offers me hope because I’m reminded that someday I’ll shed my scarred, limping body and dance the two-step with my heavenly Father. That muscle goes arm-in-arm with the empathy muscle. I exercise it when I pray for others who are paralyzed and receive cancer treatment in their wheelchairs. I need only look left or right to see others who exercise their courage muscles every day. Exercise comes in many forms. We don’t have to scale Mt. Everest or finish a triathlon to reap its benefits. We simply must get in the game—our game."
We cannot feel ashamed or upset that we cannot do what we used to do nor what we see others do. We must do what we can. I realize I cannot dream of climbing any mountains any more. But I can appreciate that I do the best I can. And that is all I can do. Our goals should be joy, empathy, and emotions.
Saturday, August 20, 2016
I Wasn't Up To Blogging
Yesterday I was not up to blogging. I meant to blog. But I didn't. I couldn't. I couldn't come up with anything to blog about because I was too tired to think.
I haven't been sleeping well for the past week or so. I have been very tired and not able to nap for some reason. And every morning either I had to get up and go somewhere or I just woke up and couldn't fall back to sleep. Thursday afternoon I was so exhausted. I wanted to nap but couldn't. I also had to take the (EK) to the vet. I just wanted to sleep. Thursday night even thought exhausted I didn't sleep well.
Yesterday morning I also had to go to an appointment with the SSDI doctor as part of my disability application. I was kind of dreading it. I didn't know what I was going to be asked. I didn't really know where it was. I was really tired. But my husband took the day off and drove me. He went out for breakfast while I talked to the doctor.
My appointment actually went pretty well. The doctor, a psychiatrist, wanted to talk to me about my depression and anxiety issues. I was so exhausted so that wasn't that hard to talk about depression. I hope it helps my application.
Once we came home, I got to lie down for a while (and watch bad TV - which is what I call anything that is instantly forgettable). I did talk myself into going to the gym because I didn't go for the last two weeks because we were away and I told myself otherwise I would have to go today to make up for it. However, I didn't get through even half my work out. I was too tired to finish my cardio (when you feel like you are falling asleep while on the stepper, its time to go home.
After I got home, I slept for about 45 minutes. Magic! It was wonderful. I felt so much better. Then I slept pretty well last night. Sleep is a wonderful thing so today I feel almost like a normal person.
I haven't been sleeping well for the past week or so. I have been very tired and not able to nap for some reason. And every morning either I had to get up and go somewhere or I just woke up and couldn't fall back to sleep. Thursday afternoon I was so exhausted. I wanted to nap but couldn't. I also had to take the (EK) to the vet. I just wanted to sleep. Thursday night even thought exhausted I didn't sleep well.
Yesterday morning I also had to go to an appointment with the SSDI doctor as part of my disability application. I was kind of dreading it. I didn't know what I was going to be asked. I didn't really know where it was. I was really tired. But my husband took the day off and drove me. He went out for breakfast while I talked to the doctor.
My appointment actually went pretty well. The doctor, a psychiatrist, wanted to talk to me about my depression and anxiety issues. I was so exhausted so that wasn't that hard to talk about depression. I hope it helps my application.
Once we came home, I got to lie down for a while (and watch bad TV - which is what I call anything that is instantly forgettable). I did talk myself into going to the gym because I didn't go for the last two weeks because we were away and I told myself otherwise I would have to go today to make up for it. However, I didn't get through even half my work out. I was too tired to finish my cardio (when you feel like you are falling asleep while on the stepper, its time to go home.
After I got home, I slept for about 45 minutes. Magic! It was wonderful. I felt so much better. Then I slept pretty well last night. Sleep is a wonderful thing so today I feel almost like a normal person.
Wednesday, August 17, 2016
I'm Not That Unhealthy
Last year I broke down and asked my rheumatologist if she would sign a handicapped parking placard application for me. After a long wait (several months) I finally received my placard but it was only good for one year.
I had to reapply this year and did receive a permanent placard that is good for five years and then I will automatically receive another one for the following five years (until I am gone). But, I have no idea what my rheumatologist wrote on the application, the RMV wants my doctor to clarify whether I am healthy enough to drive.
Honestly you didn't think I was unhealthy enough to have a handicapped placard last year and now you think I am that disabled? Seriously?
I had to reapply this year and did receive a permanent placard that is good for five years and then I will automatically receive another one for the following five years (until I am gone). But, I have no idea what my rheumatologist wrote on the application, the RMV wants my doctor to clarify whether I am healthy enough to drive.
Honestly you didn't think I was unhealthy enough to have a handicapped placard last year and now you think I am that disabled? Seriously?
Saturday, April 23, 2016
I'm Not Unhealthy Enough
As I expected the Social Security Administration does not think I am unhealthy enough to receive disability benefits. I did not expect to be approved the first time I applied. According to them since I can walk and lift up to ten pounds I should get a job. They understand that I have degenerative disk disease, depression, rheumatoid arthritis and fibromyalgia but they are all being treated to a level where I should be able to work.
What they missed is that all of these ailments are treatable but they missed the one that isn't treatable: fatigue. Other than a good night's sleep, which helps me for a good part of the following day, there is not much else you can do for fatigue. I do exercise, which leaves me with good mobility and range of motion, so my body is physically tired to help me sleep. But I rarely sleep all night. And the good mobility and range of motion allows me to move around better than most people with my ailments.
Last night, we had house guests arriving late, I feel asleep on the couch at about 9 until they arrived around 1030. Then after everyone settled down I went to bed and it took me at least an hour to get to sleep. I kept waking up and finally got up around 630. I know I will be tired later but I'm okay for now... until I need to lie down for a few hours this afternoon. Tomorrow I would like to sleep until 9 am but I doubt that will be possible.
Anyway, now I need to file an appeal with Social Security to see if I can eventually receive benefits. As I said, I did not expect to be approved now. I expected it to take up to two years and its only been less than three months. (Proof that the wheels of the government can move at a relatively normal pace.) Now to find a lawyer. I think I have the name of one and will start there.
What they missed is that all of these ailments are treatable but they missed the one that isn't treatable: fatigue. Other than a good night's sleep, which helps me for a good part of the following day, there is not much else you can do for fatigue. I do exercise, which leaves me with good mobility and range of motion, so my body is physically tired to help me sleep. But I rarely sleep all night. And the good mobility and range of motion allows me to move around better than most people with my ailments.
Last night, we had house guests arriving late, I feel asleep on the couch at about 9 until they arrived around 1030. Then after everyone settled down I went to bed and it took me at least an hour to get to sleep. I kept waking up and finally got up around 630. I know I will be tired later but I'm okay for now... until I need to lie down for a few hours this afternoon. Tomorrow I would like to sleep until 9 am but I doubt that will be possible.
Anyway, now I need to file an appeal with Social Security to see if I can eventually receive benefits. As I said, I did not expect to be approved now. I expected it to take up to two years and its only been less than three months. (Proof that the wheels of the government can move at a relatively normal pace.) Now to find a lawyer. I think I have the name of one and will start there.
Wednesday, February 10, 2016
Getting organized
Now that we are settled in to our new house, I am doing something I never thought I would do: Apply for SSI disability.
I quit working last fall when working four hours in a day made me have the need to take a nap. My fatigue levels are very high. For example, if I go out for more than a few hours, I need to come home and lie down. I have been known to walk in the door and head straight for the bed or couch - which ever is closer - before anything else.
When I was diagnosed with fibromyalgia and rheumatoid in the fall of 2012, immediately I began to have problems with fatigue. I left my other job at the cancer center because it took too much out of me. It also required evening meetings and weekend events which I could no longer do. First I cut back on my hours by by June of 2013, I left completely.
Then I tried to work closer to 20 hours at my remaining job (the one I just left) but over the next two years I had to cut back my hours because I couldn't last through a 6 hour day, three times a week. Then it was 5 hours a day, and then 4 hours a day. Then it was two days a week instead of three.
I am a fan of social services programs which provide help for those in need. But I am not in favor of those who abuse them. I do not agree with people who feel they provide a free ride in life. I never thought I would be the one who would need one.
But in a couple of weeks, I meet with some one at the local office to fill in the paperwork and begin the process of applying for benefits. I do not expect it to happen miraculously, instantly. I assume it will take some times and appeals to get through the process. I realize I could be denied and not receive the benefits. But I have hope.
I quit working last fall when working four hours in a day made me have the need to take a nap. My fatigue levels are very high. For example, if I go out for more than a few hours, I need to come home and lie down. I have been known to walk in the door and head straight for the bed or couch - which ever is closer - before anything else.
When I was diagnosed with fibromyalgia and rheumatoid in the fall of 2012, immediately I began to have problems with fatigue. I left my other job at the cancer center because it took too much out of me. It also required evening meetings and weekend events which I could no longer do. First I cut back on my hours by by June of 2013, I left completely.
Then I tried to work closer to 20 hours at my remaining job (the one I just left) but over the next two years I had to cut back my hours because I couldn't last through a 6 hour day, three times a week. Then it was 5 hours a day, and then 4 hours a day. Then it was two days a week instead of three.
I am a fan of social services programs which provide help for those in need. But I am not in favor of those who abuse them. I do not agree with people who feel they provide a free ride in life. I never thought I would be the one who would need one.
But in a couple of weeks, I meet with some one at the local office to fill in the paperwork and begin the process of applying for benefits. I do not expect it to happen miraculously, instantly. I assume it will take some times and appeals to get through the process. I realize I could be denied and not receive the benefits. But I have hope.
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