Obviously if you are even thinking about going to work you are not as sick as I am. I need help bathing because I can’t keep hold of the soap, help dressing because I can’t button a button, so even the thought of going to work makes me worry. Has anyone had problems with Medicare paying for IVIG treatments?
harpa2000,et al, I must agree; If this job is what truly makes you happy, then go for it and "McIver" your way into a new methodology to accomplish your heart's desires.
We all are different and you may find a way to overcome the fatigue that many of us experience. My hats off to you if you can and I hope it works out well. If, however, you find you are unable to put in a 40 hr week, then be open to talking with your boss about part time work. I am or was a forester working in private industry 30+ years and had opened my own consulting firm shortly before I became ill. Though I can no longer work, I do keep up my professional contacts and still manage to get to the woods occasionally. Its not the same, but it is a bit of heaven to see the trees and my friends in the 'Biz'! Good Luck!
My doctor is recommending Rutuxin(?) a type of chemo. It isn't as much for the cidp as the anti-mag and monoclonal paraproteinamia that I also have. I have been on ivig for two and a half years. Do you have another condition with you cidp? Peace nancy
BlueHose said:
Chirpybird, I have the same concerns. I was diagnosed in June of this year and my symptoms are basically numbness in both my hands and feet, extending to my elbows and to above my hips. Fortunately I experience very little pain, just the constant numbness. I began I IVIG treatments the first week in July with no results. The doctor started me on chemo the first week in August. I don't feel much, if any difference, just a different feeling in the numbness.I am hoping that the "feeling" is the sheathing repairing itself, but I'm no doctor.
My fear, like yours, will this condition progress. I feel extremely fortunate after reading this forum. I had no clue what this disease was until I was diagnosed and had one idea the extreme conditions that could come with the disease. Again, I feel extremely fortunate, but nervous at the same time.
Nancy: I do not have any other conditions. I had breast cancer 6 years ago. I had surgery and radiation and was then given tamoxafin. After 9 months of chronic fatigue and then memory loss I was taken off the medication. I honestly have to say that I never slowed down and had a lot of major events in my life since then. I think I have just totally overdone and haven't taken care of myself and then the CIDP hit hard and fast.
I appreciate all of the comments about this. The CIDP has really made me take time to reflect on my life and learn to say NO, which isn't easy for me. As my oncologist has always said "You are a caregiver and not one that likes to be cared for". I have come to realize it is now time to care for myself and let work go. I've had a long talk with my boss and I'm going to look into going part time. The hardest part has been getting my husband on board with this. We had to relocate right before I got sick due to his place of employment being sold. He was fortunate in that he was able to relocate to where I work but had to take a major pay cut.
I work for a university and provide technical assistance and training for counties and municipalities in our state. I honestly love what I do and those groups have been what has kept me going and kept my spirits up. Thankfully my job is one that I can sit and answer emails and phone calls most of the day. I will travel to the workshop next week, but have already had one lady call and ask to stay with me to help me out and one of the men call to tell me that he will be at the location to unload my car and help me get everything set up each day. God is so good in providing what we need, when we need it.
Thanks again for all your comments.
Your nervous system is unique. The antidotes of others are only generalizations for the most part. You will have unique disability, pain and perhaps relapse. Since stress is a product of nervous system actions and reactions, I would opt for circumstances that are serene, calm and mentally invigorating for you and your family. You sound money-driven and that is bad when dealing with a chronic disease.
I was a professional classical guitarist, a computer programer for the DOD, and a published novelist. Everyone of those careers ceased from remission/relapse when my right hand slowly turned into a useless claw. I've always written poetry and I great find joy in that. I am also a published poet... However, I use a pen name because I was mad at the world for most of my life and I still am.
Work if you can control all the parameters or find something you can do that you love to do with disabilities. BTW- CIDP is not the wimpy disease the literature makes it out to be. In my case, I call it ALS-lite, however I often bring myself back to a working and loving reality when I think of the unfortunate souls who have ALS.
Hello, here are some quick answers to your questions about me.
1 - No I can no longer work as I once did.
2 - Yes I do have significant numbness and pain from my hips to my toes. It's kind of weird to be numb and have pain at the same time but I do. I am having IVIg treatments and I take a couple types of oral meds a couple times a day. Lyrica seems to work best for the really strong "electrical" type of pain or sensation up and down my legs and toes. Nothing helps the continued weakness.
3 - Because I no longer work I don't have to deal with that part of the equation BUT It seems now that my entire life revolves around this illness and yes it has an affect that I can see on my family.
I had to request SSD 5 years ago. It is not even close to what I used to earn but I had to do something. I am grateful I was approved for the income and insurance.
You have some very good advice above, discuss this with your family and doctor and don't allow your "boss" to make this decision for you. Perhaps you can apply for SSD again, I just don't know but because this is a "chronic" illness be very sure of yourself before you make any decision to return to work.
All the best to you and yours.
I am struggling with the decision to stop working too. I usually work 13 hrs a day, worst part is, I own the business...meaning I have to close it. I feel ur pain
I have continued to work as a music teacher, though my skills level dropped about 8 grades right after onset of this illness 7 years ago. Work is part-time, and sporadic, but I am still managing to support myself. Thank God, | saved money during the years prior to this happening, or I would be in serious trouble now. I want to work as long as possible, and am living a frugal lifestyle in order to make ends meet.
I've had some improvements in the last year or so. I can now walk up and down stairs at times, without putting both feet on each step. And this year, I actually managed to get around without once using my medical rollator. It has sat next to my kitchen table for 7 years, and this week, I carried it down the basement. So that's an improvement!!! And I've been able to walk outdoors without actually propping myself up with my cane, most of the time, and that is just wonderful. I still carry my cane, but only use it to fight off attacking dogs. (no pun intended)
Another improvement has been that I can now fit into some of the shoes that I used to wear up till the time this illness hit me following my flu shot in 2007. I was able to actually fit my low-heel dress shoes onto my feet again, and can wear them if I don't stand. My weight has gone down again, and I can again wear some of the clothing I haven't been able to wear for almost 7 years, due to the illness-related weight gain from mobility issues. I can flex my knees better. And my fingers are more flexible, though my right hand is more cramped than my left. I understand what Esteban is saying, as I teach guitar and piano. The pain has never left my hands, and it is a constant battle to fight for what mobility I can maintain and wrestle from the effects of this illness. A few years ago, I couldn't thread a needle, but one day I sat at my sewing machine and forced myself to thread it again. It took half an hour to do it. But since then, I have relearned how to knit, how to crochet, how to read and write, how to lift, how to walk, how to speak properly. Of course, it is a constant effort to do these things, but I have found that life goes on, and the quality of life depends on attitude, and then the happiness I gain from every successful effort, be it small or large.
One of my goals is to bring my bike upstairs, and push it to the tree where it rested, at the 2007 flu shot clinic. I would like to push my bike around town, even though I haven't the balance and strength to ride it again (and am scared I'll break a bone if I do manage to actually ride it again.)
Another thing I am learning (a constant battle) is to channel my bad feelings...anger, grief, anxiety ...into something real and constructive. Just 2 weeks ago, I was able to actually lift my arms enough to mop that dirty bit of my ceiling over my kitchen cupboards caused by the kitchen exhaust fan. It hasn't been cleaned for 7 years. Believe me, it was a victory that I rejoiced over, just being able to lift that Swiffer mop and have the upper body strength to hold it above my head again, and push it around for 2 minutes.
So life goes on, with work and whatever else, though I've had to make many realistic and necessary adjustments. Yes, this illness is a bummer, and so far, I'm not the same as before, but life is for LIVING!
Hi Jan glad you excepted my friend request this disease is so hard but I did research on the new drug rituxan and Im not going to do it I have in flamation in my lungs and if I take this drug it could be quite harmful any way I'm going back to the ivig its the only semi relief I get any no side effects .I hope you are doing OK.