dr visit
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November 30, 2009 at 11:38 pm
Dr wanted to see how I was doing on the anti depressants. I explained the residual flare ups and the pain involved. But we talked about the pros and cons…told me it was more or less my last resort because I was unable to tolerate any of the others. I could not function on neurontin, zoloft caused extreme pain in my muscles and weakness, anything else he could offer were closely related to those. Okay so I will try and stick it out since I have felt an improvement in my emotional/mental state. And considering what my family is dealing with right now, and the amount of stress we are under, I think I will stick with the wellbutrin a bit longer. We will see if I stablize or not. If things get worse he wants me to see a specialist.
He was also interested yet confused that I was able to withstand very hot things like getting burned on the oven or stove and not realizing it, or showering or bathing in very hot water because I did not feel it was warm enough. He said feeling hot and cold and pain were different sensory nerves or something. I dunno. My kids think it is amusing. Since I do not feel these things normally, I do not remember to be careful. I have quite a few scars from cooking LOL! Anyhow, he had never heard of such a thing. He was putting some nitrogen stuff on a skin thingy I had and I could not feel the cold he was telling me I should be feeling. I did eventually feel a slight sting, but never any cold. This is why I have to be reminded to put shoes on before going outside to take snow photos or play in it. Yea….last year I didnt think of this and boy howdy did my feet hurt like hell!! Anyhow the doc found it interesting and is learning about the mysteries and things not found in text books about GBS.
I also got my second denial for SSI. Next step is court it said. I have an appt with legal aid this thursday. I also found some interesting research by Dr Parry I printed out and will take with me. I thought it odd that the denial was based on that I could move my arms and legs and could more or less get along with others so I did not suffer from mental issues, so I was able to work as long as it did not require lifting more than 20 pounds. It did not include anything about the way I have to sit so my legs dont hurt, or if I sit too long they ache and hurt or are tingling for a day or so. It did not mention my inability to stand for very long or walk very far due to pain and fatique…including muscle fatigue and bone deep fatigue in general. They said that although I experience some discomfort, I seem to be able to use my limbs and follow instructions so I should be able to work. *sigh* This is gonna be difficult proving my case. What other info should I include? I had my hubby and friend fill out paper work on my behalf and send them in. Each stating more or less the exact problems I deal with daily. I dont know what else to say or show or explain. Any ideas?? Any job I am qualified for requires standing for long periods or sitting for the day. Even my photography and other work at home I have to take breaks from, and if I over do it, I am in bed or on the couch for a couple of days….
argh!
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December 1, 2009 at 12:50 am
Hi, we are wishing that things get better for you in all these areas.
There are quite a number of antidepressants and many do work in different ways and have different side effects. If it is decided by you and others that the wellbutin is not doing “enough”, it might be worth considering either Cymbalta (seratonin and norepinephrine) or even Elavil. Elavil is one of the older medicines used for pain and for depression and Cymbalta is one of the newer medicines used for both of these.
There are actually a number of different kinds of nerves–one kind for pain, one for light touch, one for temperature, one kind for position, and one for vibration. Some people have only one kind affected, but GBS/CIDP often affects all the kinds.
Regarding SSI, would it be possible to see a rehabilitation medicine specialist and get an evaluation by this person and PT/OT with documentation of all the challenges you have AS WELL AS “medical statements” that these are really part of this stupid syndrome. I think lots of people cannot understand how hard it is to sit or to walk. You could also ask the rehabilitation person if there is some way to be able to sit more comfortably–such as a special chair and to be able to move on the job easier such as with an electric scooter. The reason I bring this up is that sometimes the best way to say how hard it is to work is to list all the ways that you would need modifications. Be sure also in what you say and in what people say for you to use the word safe a lot–such as that if you tend to start tripping more after trying to walk for a while, say so. People really listen about falling and safety. I have not applied for SSI, but I did apply for a scooter to use at work and this is what I was told–to talk about safety and to be as precise as possible–such as that I had to rest after walking about 100 steps.
The other suggestion is to get a lawyer for the appeal. I would tend to go with the rehab doctor and one additional reason is that you might learn something that would really help in other ways. I saw a rehabilitation doctor at a Rehabilitation Hospital for the assessment about the wheelchair. I went to see him with the hope for the appeal to work, but also with a couple of specific questions so that I would not feel disappointed no matter the outcome.
WithHope for a cure of these diseases.
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December 1, 2009 at 3:29 pm
tried cymbalta and it caused severe chest pain. Elavil is close to neurontin I think that is what the dr told me so he said that was not a good choice either.
As for special chairs or scooter, I am not ready to give up completely. Still holding onto a thread of hope that one of these days it will be okay again. When I sit, I have to find odd positions to sit in to be comfortable (have tried ergo chairs and the same thing), which doesnt help because if I do that too long my legs and feet hurt. Add not handling chaos/stressful environments or events and well it is an interesting combo. My brain shuts off under those conditions and I literally can not think right and I swear things fall out of my ears or get lost somewhere. Anyhow, long list and hopefully someone will listen or see that I am serious about things. Maybe I should just find work, try it out, end up calling in sick for the next couple of days, then work again, etc. Right now after 19 years of being a stay at home mom what I AM qualified to do is saturated and no one will hire someone like myself who may or may not be able to show up. Not a discrimination, just the truth esp when there are others that will show up and can stay all day and want the job too. Does that make sense? I don’t want to waste anyones time either or take away a much needed position that I may or may not be able to stick with. We will see what happens. I appreciate your ideas and input Withhope *hug*
just frustrated….hope my reply doesnt come across the wrong way.
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December 1, 2009 at 5:20 pm
[QUOTE=fairly_odd_mother]. . . not handling chaos/stressful environments or events and well it is an interesting combo. My brain shuts off under those conditions and I literally can not think right and I swear things fall out of my ears or get lost somewhere. Anyhow, long list and hopefully someone will listen or see that I am serious about things. Maybe I should just find work, try it out, end up calling in sick for the next couple of days, then work again, etc. Right now after 19 years of being a stay at home mom what I AM qualified to do is saturated and no one will hire someone like myself who may or may not be able to show up. Not a discrimination, just the truth esp when there are others that will show up and can stay all day and want the job too. Does that make sense? I don’t want to waste anyones time either or take away a much needed position that I may or may not be able to stick with. We will see what happens. I appreciate your ideas and input Withhope *hug*
just frustrated….hope my reply doesnt come across the wrong way.[/QUOTE]
Hi Fairly,
I had a long weekend (my daughter got married) and I was practically in a coma by Monday. I am having lots of residual problems right now and would like to cut back on work and apply for SSDI. I have some experience with SSI, since my daughter is almost completely deaf. She was turned down the first 2 times, and people told me that was “normal.”
You might want to start a separate thread about SSI or disability, you would get more responses that way I think.
I think it is common for us GBS-ers to have low self esteem and not feel “worth it” to work or go on disability. Although that is what it is there for, girlfriend! Keep your chin up dear! **{HUGS}} 😉
PJ
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December 1, 2009 at 7:08 pm
I hear you about not wanting to give up, but, really that is exactly the reason that I got the scooter. I knew that I could not walk enough to be able to work, but I could do all the other parts of the job that I have. the reason to say this is that attitude always makes a big difference. There are often more than one way to view a decision. Using a scooter or a walker or cane is not a statement for me of disability, it is rather a statement of refusal to give up. I will not let this disease take away my ability to do what I love most to do. Do you understand?
It would be really, really hard for anyone to go back to work after so long working as Executive HomeMaker (mom). The problem with us is that as you state stress acts out physically and the physical toll zaps the mental strength down. What I hear from you is that you feel like you are between a rock and a hard place and this is understandable. What I think all of us are trying to say is not to feel like the rocks are going to squish you from either side. You are strong. Believe in that. But maybe also use all that life experience that being a mom gives you to find ways to dodge those rocks if they do start trying to tumble on you–either as arguments against you getting SSI or as arguments against you getting a job. One of my good friends told me when I got this neurologic illness that what I needed was a “Mother” to help encourage and advocate for me–someone to listen and be positive and to help sort through challenges and find ways around it. If you have some special friend or sister or mother that can help, get together and make some lists of ways that you would be better in life with each path and ways you might circumvent tough situations in the way. Do you know what I mean?–to use attitude to show your strengths and minimize what is not as strong.
WithHope
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