Friday, May 9, 2014

54.  PEACE! Odds and Ends at the End of Pirogov Stay, and then HOME!

“In Russia it is always the future that is thought of. It is the crops next year, it is the comfort that will come in ten years, it is the clothes that will be made very soon. If ever a people took its energy from hope, it is the Russian people.” 

I am transformed! In numerous ways I will never be the same as I was only months ago. It is that way when we risk, when we travel, when we seek our own healthy future, and when we look deeply at the cultures that, together, make  up our world.  

I am so grateful for each of my transformations while here, the greatest being a whole new immune system within, which gives me my future planning and life back. And is a gift also to my family and friends whose lives have been impacted by having an 'ill' member within the ranks. It's hard on everyone. It challenges all. It robs the entire family of an essential life force within their own lives, and isn't fair to anyone.  

That said, I have just some scattered add-ins today. Only 2 more nights at Pirogov and then I make my way HOME. Will continue to add to the blog, but not so often now. I will be moving through my own normal life and will try very hard not to let this become a forgotten toy dragging on a string behind a happy toddler's path forward.  I care about us all!  YOU matter to me. YOUR future health matters to me. 

There are very real problems to be worked on to help change the reasons so many are having autoimmune illnesses. I am not an activist at heart. But I think I will hold a bit of a grudge against those companies whose lust for money and power leaves so many damaged people in the wake of their fast-speeding yacht-like trajectory to Oligarchy in America (USA).  I hope you will help me!  LET'S MAKE A BETTER FUTURE where we don't worry which of our children or grand-children will be the next to be hit by autoimmune illnesses.  I need you! We all need to work together on this. 

It is not a partisan or political issue - it is our basic health and future.  


And now - a few parting shots of info for HSCT people about my final days at Pirogov:

First, I will tell you that I have only 4 packets of my favorite type of flavor enhancer for my cold water intake. These are not my favorite ones. I like the Blackberry Pomegranate best. But we stock-piled for weeks, bought them out in each of our local stores (Thanks Jack!) and look - I think this exactly meets my remaining days' need.  And we didn't even do the math. WOW. Feels like we ought to win something for having counted the jelly beans right, though, doesn't it  (smile)

BONE PAIN:  There is some bone pain that goes along with building a brand new bone marrow factory of immune system function.  I'm off all IV meds that helped manage it beautifully for me during this month, and so last night I did have my worst night of bone pain - maybe a 3-4, did take a Tramadol. No huge deal, but wanted to mention it.  (NOTE: It isn't as bad today, but will come and go for a while. I can certainly handle it.)

BP: Along with it, around 2 a.m., I also felt some pressure in my chest.  I did get up and check BP, which had fallen low to 90/60. Then it rose a bit within an hour, and more the hour after, so it's  back to my normal lifelong (non-CIDP) BP levels of around 118/68 by now. 

I spoke with Dr. Fedorenko about it on his normal rounds, and he reassured me it is normal, and the heart works harder if BP drops. But he also immediately ordered an EKG just to be positive nothing at all is going on before he releases me.  

EKG:  Within 15 minutes the EKG Tech was in my room, and the EKG was done, and Dr. Fedorenko stopped by to say everything is completely fine.  How great is THAT for heath care delivery?  I only tell you this story so you will understand that if YOU are a helpful and willing and participating part of your TEAM here at Pirogov, the service is awesome.  I am so grateful for my HSCT, and to Dr. Fedorenko and the entire TEAM PIROGOV that have truly given me my life back.  These people heal. They are not interested in farming endless profit by treating people with symptom-masking pharmaceuticals. 

Let's change our Health Care Business Model and system at home to one that is a 'cure' mentality and not a giant profit base for a few companies to mine.  I'm going to keep talking about this part for as long as it takes to change it. It is part of OUR dialogue to National health. And it is our children's future we are looking to, is it not?  


PORT  SCAR:  We removed all dressing from my catheter entry point. It is not going to add much to my record for body scars (Greer), but it represents the entire  intrusion into my body - a tiny tiny scar where magic happened. Wow, huh!  Here is what it looks like today. It will look better very soon and then totally disappear.  Note: most of that raw area around it is from the early days when I didn't adequately convey that I am allergic to non-allergenic medical tape.  You probably will have none of that at all:

People will say, "you look so normal".  How will they ever know what a choir of angels has been doing within me?   My bald head will cover with hair again, I will have energy and stamina. I will be as normal as I look - finally!  

But every time I look at someone and think the same, I will wonder what their inside invisible challenge might be. That is another way CIDP has transformed me. I know that invisible and devastating battles wage within so many. We can't see it. Only they know it's robbing them of a full life.  BE KIND to everyone. You don't ever know fully another's plight or path. 

Okay that's all for today. I'm going to shower (late) and read, and maybe nap. And I'm going HOME!

No comments:

Post a Comment