AnonymousDecember 29, 2011 at 11:52 pm
Hello my name is Paul. I was diagnosed about a yr ago with cidp. I am goin through ivig treatments every three weeks. I was wondering how many people work with cidp. Right know im disabilty, is it possible to go back to work full time. My neuro said im not ready. Just a couple of days ago my right arm has been hurtin to the point that i can hardly use it. Also thr right side of my back both upper and lower have been very painful. The right side of my neck stings and burns. possibly another relapse, am goin to go to the neuro tomorrow. thanks
AnonymousDecember 30, 2011 at 10:14 am
I was dxed in Dec ’10 and haven’t worked since. I’m not as bad as a lot of other folks pain-wise, but fatigue and strength, shakiness and what I call “brain fog” effect me. I am going for a stem cell transplant in march and hope soon after that (probably about 6 months after) I will be able to get back to work. I am Member Service Rep at a credit union. Lots of brain work, paperwork, writing, computer, $$ handling, etc.
December 30, 2011 at 3:55 pm
I was dxed in june of 2009 and continue to work, I own and operate a residential care facility for people with developmental delays. I have the slow progressive type of cidp and fortunately it has only affected my feet, ankles and calve muscles at this point.
My job is not physically strenous so I am able to continue to work full time. If it required a lot of physical ability I would not be able to, my balance , coordination and walking is what is affected.
If your Doctor is saying you should not work, then that is probably best for you right now—to be able to save your strength and energy for getting better 🙂
Just need to keep on the posititive note–that cidp is treatable and will improve with the right treatment. Im still in search of the right treatment right now too—-finished 2 1/2 years of ivig and onto PE in January. Have a nice New Years 🙂
December 30, 2011 at 11:49 pm
I have had CIDP since 2007, just had my 4 year “Helliversary”. I work in the financial business as a technology specialist. My work involves a lot of problem solving, memorization, computer programming (in multiple languages), project management, and some physical movement of computers in and around the region.
I never missed a beat at work, as a matter of fact I don’t know what I would do without my job, it keeps me sane.
I go for IVIg every 4 weeks for 3 days. I spent 3 years on IVIg every 5-6 weeks for 5 straight days. I am on many medications including Lyrica, Cymbalta, Imuran and blood pressure medication. I’ve done the Prednisone route and Fluoxetine along with some other stuff over the years.
I only miss work when I am getting treatment or seeing the Doctor. I have good and bad days, but I push on and work 40-50 hours a week.
It is not easy as the medication makes concentration very challenging. I also find that pressure causes my symptoms to flair up.
Most importantly I find that working all day is about all I’m good for. Its not like I come home and work out, paint a room, play golf or anything. I have made the decision to use my energy at work.
I am EXTREMELY lucky that both my Boss and my company are very, very accomodating to my situation. They have stood behind me since day 1 and still want me working, especially if I can stay productive.
Be advised, Obama saved many of us CIDP’ers…..With NO cap on health care coverage many of us can stay employed for many years. If your getting treatements every month then you are running up quite a bill and after 6-8 years that would add up to “max out” of most health plans….THEN WHAT DO YOU DO IF YOU WANT TO KEEP WORKING ????
I hope you can get the right treatment plan down so you can return to work if you so desire.
Best of luck
December 31, 2011 at 9:08 pm
There are many cases out there where people do return to work full-time. Don’t put the work in front of your recovery. Listen to your Doc’s..but question them at the end of the day you are going to be the best judge about when you feel you have the strength and endurance to return and in most cases the doctors will follow your lead.
AnonymousJanuary 1, 2012 at 8:45 pm
Paul ~ After a long haul getting a diagnosis of CIDP, hospital time & lots of hurdles, I went back to work half-time for a year. One day, I realized I just could not keep up and my only option was to retire ~ so I did.
It was strange to wake up the next day and not go to work, so I did the logical thing and got really totally depressed; during that time I really went deep into myself and determined doing something was better than nothing – how brilliant was that! But, hey, unless you’ve never had CIDP or some other ‘real’ malady, I don’t want to hear it, I needed to know it. Sometimes the ‘something’ wasn’t much but it was the right direction.
So, I set up an office in a small room in our house, had a phone installed, bought a computer, a file cabinet, a desk, a chair… and would get up each day, get dressed, eat breakfast and ‘go to work’. A lot of boring, dull sweaty, painful, emotional, fearful hours in CIDP-land staring out the office window. I began to question everything I thought I knew and found I’d been on cerebral auto-pilot most of my life – good jobs – did well – healthy – primarily followed my dreams until they found me.
During that time ‘in my office’ it occurred to me I should find an occupation that built on what I could do – not what I can’t. I found a list of ‘licensed occupations’ put out by the state and figured if I had a license, I could charge more money for my time. It would have to be at home and part-time. I chose to be a licensed tax consultant – and took some classes, passed the state preparer exam, worked the state required 800 hours for other tax consultants and then passed another state exam to become a tax consultant myself and opened my own business – easy, it was not, but driven to succeed, I was – and did. I took another three national IRS tax exams – that took two years of study and passed. I actually beat my text books with my crutches. Boy, did that feel good.
One day a friend visited and asked for some help figuring out some problems he was having doing project management, cost estimating, and similar work. I shared what I knew, he succeeded and I was asked by his board of directors for a resume’. I gave them one thinking they wanted to know my background so they could hire someone. My background primarily involved knowing how to get any job done and I felt that competence trumped a lot of letters after a name. A few months later they invited me to a meeting that turned out to be job interview. I told them my terms… part-time (some days wouldn’t be able), work at home … board meetings once a month and only work at their office if absolutely necessary, option to ‘just leave’ at anytime for any reason, supervise no one, and no need to fire me if I couldn’t cut it – just tell me and I’ll say thanks and I’m gone – and an outrageous hourly rate. After some negotiations to lower the outrageous hourly rate (I actually got what I wanted) I accepted their offer. That was in 1995 and I’m still there!
During all this time I had to deal with CIDP, IVIG, mortgage, son on his way to college, life 101 ~ and I was a wreck. The option was to quit and enjoy my depression or go on, so I went with what I had. My son graduated from college, my mortgage paid, no debt, home office humming, life was and is OK.
My doctor was concerned that I was doing too much but did recognize I was in a positive place – he wasn’t going to stop me anyway. I had and still have some miserable, rotten days but I always consider the option.
Clearly and with no doubt about it – I discovered that everything I’ve done in my life was in preparation for what’s next. Life is a journey that resembles a test; so I’m going to enjoy it as much as I’m able and know that I can in fact take a bad situation and succeed by using just the good parts.
Certainly, my hope for you is that you get 100% better and go back to work and forget the whole thing. That’s what I still want but until then my Plan B is operational.
I believe each of us have amazing untapped capacity to overcome almost anything that life throws at us. I’m still impatient, angry at times, frustrated, tired and all that, but glad I can move about on crutches at home, drive to meetings by myself – with my power wheelchair in the back, go on trips – like my son’s wedding. There are times when I’ve done all I can and just go with the flow.
I recently heard an expression I like, “I’ve suffered a lot of catastrophes in my life, thank God most of them never happened.”
Best Regards…and to all a Happy New Year
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