What next? Coming to grips with me as I am...

All in all I think I've done a pretty good job of coping with all the huge changes that have come into my life since April. I am, in many ways, a far different person now than I was then. The emotional and spiritual changes- all positive. The physical changes I am still dealing with.

This next section sounds like I'm whining. Maybe I am. I know there are people with far greater physical infirmities than I have...but I am coping with the hand I've been dealt. No, the Lord is not punishing me. I'm being pushed to change and to grow. I'm supposed to learn from all this. I know I have, but it has not and is not easy.

I'm not the first or only person around who suffers from fatigue; this is an age old problem with many causes. Not surprising in someone who isn't sleeping well.

I'll get it in my head to do something, and try to do it. I tried to do some weeding today. Sounds simple enough. Bending over causes bad reflux problems because of the way my heart, trachea and esophagus have shifted to the left since my surgery. It doesn't take long till I'm out of breath and just resting. The weeds don't care about my heavy breathing, or my coughing. I could do very little, even sitting on a rug scooting along. Simple tasks like laundry must be done in shifts. Do some, rest. Repeat. We've hired a lady to help with the big housecleaning because I just can't do it.

I would love to quit coughing. Not only has it toasted my voice, but it's exhauting. It wears me out. We're not talking about a little ladylike cough, I mean like I'm coughing up my toes. It's embarassing. It has made speaking incredibly difficult and talking on the phone almost impossible. It's a vicious cycle: coughing makes it hard to speak and speaking makes the cough worse. Not a good thing in a medical clinic. It's also made playing the harp in public impossible.

The shortness of breath can be significant. I frequently am very dizzy when I stand up.
I haven't even touched on the side effects of the medications, which are a delightful trip through goober-land on on their own.

Some days I feel like I'm just sitting here using up oxygen. I spent untold hours of study and devotion and the majority of my inheritance on my master's degree / Adult Nurse Practitioner. I've done an extra year's study in hepatology. Now--I'm unable to use that training. I want so desperately to go back to work, but do I have the stamina--emotional and physical? Will I get my voice back / cough control enough to make it possible?

Dear Lord,
You have given me everything and in such abundance, including the means to help people medically. There are physical issues that are preventing me from continuing that, and I'm feeling useless. Heal me enough Father, so that I may continue to serve You, or show me how I should otherwise serve. I don't want to miss your message or plan. I humbly ask this in the name of your precious Son Jesus...Amen

A courageous friend helps me

My best friend has MS. She was diagnosed in 1999 when her hands stopped working properly. This diagnosis presented problems, because she was a hairdresser: had her own chic salon, was an educator for several product lines, all around tops in her field. Long story short: she had to close her salon, move in with her sister and try to create a new life.

That was a very difficult time for her, and the subsequent years were
(are) very challenging. Loss of function, loss of endurance, loss of mobility, loss of dexterity, waves of severe fatigue...the symptom list is endless and ever changing. MS is a moving target... it changes its attack over time. Can you imagine the depression of coping with all those changes? She struggled, but never, ever lost her sense of humor.

As her friend, I did what I could. We eventually referred to her disabled parking permit as the "princess parking permit": we could park closer to the stores. Her wheelchair provided myriad opportunities to hang shopping bags when the shopping trips got serious. She went back for vocational training and started her own travel agency specializing in travel for clients with mobility issues. She is an expert on those motorized carts in the grocery stores, and navigates crowded stores with confidence. Her struggle and resilience were amazing and humbling to see.

Fast forward 11 years. Tables turn. I am the one who's struggling now. She's the one who understands what it means to have your life turn on a dime and change into something that you don't recognize. She knows what is means to be strong, healthy and active -- only to have that disappear.

Kristi is teaching me that it's OK to be sick, that it's OK that I'm not the strong one now. She understands what it's like to drive a scooter in the store -- as a relatively young person who normally wouldn't need one--- and have people look at you with pity. To feel you're pathetic in the eyes of the world. She understands what it's like to appear healthy and normal, but be so desperately fatigued, you don't know if you can go on one more minute...

Energy conservation. This is something that I have spoken about in generalities with my own patients for years. Now it is the reality for me. Kristi has become an expert in task analysis for this purpose. Living it changes everything.

What a gift that I have this wonderful friend in my life -- who I've known for 30 years -- who is willing walk through this with me, drawing on her own experiences to offer hope and encouragement to me!

I've only been down for about a month. I've lost a lung, and still have chemo ahead of me... then I have a breast surgery and chemo coming. Who knows what I'll have left after all this in terms of functionality? My body does not define who I am. Losing a lung hasn't changed who I am or what I believe in. If losing a breast is going to save my life, so be it. I am not my breasts.

The Lord has a purpose and a lesson in all this for me... I must keep my head and heart open for it.