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
I was always told by my neurologist, as well as reading it when I research CIDP, that the second purpose of treatments like IVIG is to “CONTROL” the progression of CIDP. I was on IVIG from 1999 to 2003 and I rarely felt improvements or felt like “wow, this is working”. For reasons unknow to me, he wanted me to stay on IVIG’s. I have been in a remission for seven years now, no sign at all of relapses.