ChirpyBirdy – YOU CAN DO THIS!

November 16, 2011 at 7:43 pm

The creepy crawlies at night; the burning; the worry that your CIDP will progress; the real concern about how to hold your life together with a disease like CIDP? You have lots of company.

Here are a few tricks I use to keep my feet on the ground and my mind from spinning out of control:

What’s the beauty of having kids when you have CIDP?
You have to get out of bed in the morning.

What is the best news about being “the” job – the one with the insurance – when you have CIDP?
You don’t have to make a choice; you have to go to work in the morning. (Choices are overrated, anyway!)

The even better news about CIDP?
Thank God for medical advances.
If you lived in a tent in Haiti, it would be raining and there would be no medicine for your pain; no hope for your CIDP and no soft place to bury your head at night for a good cry.

I have (extremely painful, progressive )CIDP and other debilitating neuro-muscular diseases that have quickly progressed. When I to into a doctor’s wait room (too many these days), I am always the worst one there – the kind where people nod, whisper and look at me with pity. I met many doctors who were overwhelmed by the complexities of my case or who lacked the knowledge, experience or understanding to unlock the medical mysteries of my disease process. Friends and neighbors shake their heads and tell me they don’t know how I do it. It would be easy to give up.

But guess what?
I get out of bed each and every morning. Why? Because I have a husband and 3 teenaged boys who need me. They are each 6′ and bigger but they still need their mom. What a gift – I am needed – cane, footbrace, wobbling and all. I can’t “do” much, but I can listen and I can surely love. I am blessed.

I go to work 5 days a week (when I can). Why?
Because I have the job. The process of getting there (and trying to stay there) is ugly but I don’t have to think about whether or not I want to go – it’s just how am I going to get there. When I finally do get to work I am relieved – I love my job; they need me and I find I have a lot to offer, despite my physical limitations. Working is a great distraction from my tormented body. I have taken sick days – too many – but I am still working, I still have my insurance…and… I am still having my weekly infusions.

The doctors? CIDP resources?
Keep looking until you find the right resources. Eventually you will find doctors who are up to the challenge of getting you better. Bring pictures of your kids with you – let them see what your priorities are. It took some time, but eventually i found kind, caring, compassionate and very capable medical professionals. Use this forum – read every entry. it’s a wealth of information and CIDP/GBS experience.

The future?
Wow – for me it’s daunting. But it’s also a gift – my priorities are crystal clear: my kids, my family, taking the time to look at the sky, stopping for a minute to celebrate that I am still …. alive. I intend to get every minute of living out of my life. CIDP just reminded me to do that.

Life is a gift = get tough, hang in there. And when the going gets really rough, tape a picture of your kids on the wall by your closet. You’ll have to get out of bed to see them. By then you’ll be able to open your closet door, get dressed for work and… live to see another day.

I have taped this quote to my desktop at work; it might help you, too: PERSERVERANCE GAINS YOU WHAT OTHERS MISS BY GIVING UP TOO SOON.