Hang on for the ‘Wild Ride’!

May 28, 2007 at 10:21 pm

The whole thing about CIDP is that if, IF you’ve gotten this far in the diagnosis process, well, the rest is merely fine-tuning. You’ve read and will continue to read of good, strong, previously vital and active people, who- well just had to change how they direct what energy they have in other directions, and more wisely! Keep in mind also, that for some here it’s taken decades. That is a humbling thing to learn.
I really like what Debs called it: NOISE! There’s the ringing in the ears noise many have, there is the muscle spasming noise, the nerves doing everything except what they’re supposed to noise….and on down the complete sets of lists! And of course, let’s not forget to include all the OTHER noises the meds make or do to us….
It really is a HUGE AMOUNT to take in, on top of not being ‘normal’ like you used to be.
I’ve come to the conclusion that getting CIDP was a sort of a roll of the dice thing…The numbers just came out the way they did …just when they did. There are soo many factors such as waters, ground or environment contaminations. Food additives, genetics, vaccinations, whatever…or all that can start the autoimmune system to go attack itself. That YOU have gotten a diagnosis and the best TREATMENT now known as soon as you have is one definite plus!
Keep it all in perspective – you have had a major attack by your body to your body…It didn’t attack your brain or your central nervous system…This is not the kind of illness where there is a magic potion and boom! Back to old self. You are change by this, as we all are. How you change because of it, and what you become as a result of all the changes is up to you. What you DO in the future is still to be determined…I believe you’ve the savvy to do a good deal. You just have to put your pain on one side and focus on the other…getting better and getting on! The pain is always there, lurking, but if you allow your other self to block it in part or all…ALLOW yourself to laugh, love, smell the flowers, or just, enjoy – really enjoy! sitting in the sun! We are fortunate to have that opportunity, at least.
The more acute of the pains do decrease/abate after a while..it can be 3-6 months or a year..but they do tend to settle down in a routine, of sorts. It takes a combination of the IVIG, and finding the best pain meds for you, each with their own set of good and bad aspects. It’s all a trade-off, I hope you find your own happy medium.