Friday, March 21, 2014

11. The First Thing You Feel is 'Alone'

Оди́н в по́ле не во́ин.                   One can not conquer alone.                                                                  Literal: Single man in a field is not a warrior.

When you learn that you have CIDP, the first thing you begin to feel is 'ALONE'.  No one you know has ever had it. No one you know has ever heard of it. Most doctors have never heard of it, which is why sometimes it can go undiagnosed and progress to life-threatening levels or put you on ventilator, in a wheelchair, etc.  For me, I was diagnosed quickly so in the course of 12 days I was partially paralyzed to my waist only, and not to my diaphragm (which can stop breathing and you just die if not on ventilator).  Sure, I could barely walk and I hurt like crazy everywhere, and I couldn't stay awake or think straight - the inside of me was all raging, no matter how normal I looked on the outside. It's isolating when you can't really find words to explain nerve pain, nerve damage. 

But even if you're fortunate enough to have a quick diagnosis, CIDP or MS or Lupus or any of the many other autoimmune disorders can leave you searching for information, answers, a community.  

        "But you look so healthy!"

        "Are you sure it's not all in your head?"

        "I'll bet you just need exercise and to start eating right."

Those are statements you'll hear from people who do not have CIDP.  You'll hear them often.  So often, you might start feeling even more alone than you felt when you heard the diagnosis: CIDP.

I have been very fortunate to have very supportive family, but even so it's hard to explain what this is like inside my body, when the outside still looks the same.  Many others I know, though, have had very difficult time with family. Some couples ended marriages through their CIDP time, unable to get through the crisis that is chronic debilitating illness. 

I told you earlier I would give some guidance and connect you with people, in this case, who have or did have CIDP (some are 'cured' for all intents and purposes, having already gone through HSCT). The wealth of knowledge and support shared in these groups is phenomenal, and is your armor and line in battle.  I highly suggest joining the following ones on Face Book (of all places!) and you might have to ask to join as they are closed groups (not all of your friends will see what you're writing or be able to read the group's postings, saving family members and friends from worry).  

Some of the groups I found very helpful, supportive, informative:

And these about HSCT ( )

And this last one is about the prospect of finding yourself en route to Moscow, Russia, as I currently do, and to your own hopefully full remission or 'cure' via HSCT:

You'll stop feeling so alone. You might even begin to feel like a true WARRIOR!  It's empowering to learn, engage, suit up, do battle. Don't let anyone tell you there is no cure. Don't let anyone tell you you must put up with endless 'maintenance' treatments and drugs, IVIg and plasmapheresis, and the side effects of those.  Don't let anyone make you feel alone!

                          But these are just people, patients themselves.

If you find yourself thinking that, and thinking that you prefer to rely upon your Dr. alone, know that among these fine people are doctors, nurses, scientists and all people who have or did have CIDP (or MS, or Sjogren's, or Celiac, etc., etc.,), and share their knowledge of what works, what does damage, what can help and how to deal with your immune system trials and the people you live with who think "you look completely normal".  

Remember in earlier posts where I linked you to Kristy Cruise's segment that just aired on "60 Minutes"  in Australia?  She's just a normal person - a patient herself.  Well, and a nurse. And she's just one in an entire battalion of warriors that stand with you.  Welcome!  You look like absolute hell on the inside, and we all 'get it'.  

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