Re: Changes

[Guest guest]

Sorry kiddo, I forgot to address this one on my last posting.

You're emotions will run rampid for a while until you adjust to this

new situation and even then it's a give and take with them. I, too,

cry at the drop of a hat where I used to just say, " aw, isn't that

nice. " Hallmark commercials are the worst for me.

My son's achievements in school, his fifth grade graduation, not to

mention is 8th grade graduation, giving him is drivers permit book

(yes, he's that old), my husbands success in his new position with

the bank, going on vacation, coming home from vacation...you get the

idea, all stir something inside me and I well up with tears and

emotions that I didn't realize I had. It's usually pretty bad when

I'm coming to a flare up.

My hair has always been baby fine and straight. Actually, pin

straight. We moved to Florida and it curled but kept falling out. I

was lucky, I never went bald (though sometimes I wouldn't mind with

this heat) but the texture has changed and so has it's gleam. I

can't say it's for the better or worse, it's just different.

You will often read when I post here that you should take a deep

breath. You may not realize how important it is. Although as an

athlete you probably do, now more than ever. Find a stress reliever

somehow. I do a lot of crafting projects, play with my dogs, Ricky

and Lucy, things like that. I had to find my own way for 12 years

until I found this group last year. They've been my saving grace and

my confidants, my brothers and sisters, best friends, advisors, and

at times spiritual guidance. Stick around, you may learn something.

Take care and be well.

Ellen

[Guest guest]

Hi Mike,

Physically, everything changed for me - I went to being this person who

could do everything to someone who could hardly do anything. I worked 60-70

hr weeks and supported us. My husband took care of the household (role

reversal thing - just happened because he worked for Seattle public schools

and we started to fear for his life with kids and guns). He still did his

photography on the side, but his main job was the house, etc. Anyway, I

loved my job, but found out when I got sick that my career was a lot of who

I was. Physically, I couldn't get enough sleep. I was exhausted. I could

barely work an hour a day at the end of my career. I gained over 60 pounds

in the first two years from medications and now in the last year I lost over

70 lbs because of different meds and flares. At first, I felt like couldn't

even put my feet on the ground in the morning because they hurt so bad.

Then I knew that by noon, I'd feel like I'd have the worst flu ever and my

temp would start to rise. By 7pm, my spiking temp would be anywhere from

101 to 104 and then back to 97 in the morning. I couldn't pull up my own

covers. I'd get what we would call 'claw foot' -major muscle cramps in my

feet -up to 5 times a night - they would wake me up out of a sound sleep and

I'd be crying from the pain. I have nodules in my muscles (arms and legs) I

still really don't know what they are - although I'd like to - they keep

getting bigger. I had shingles multiple times on top of all the stills

issues that caused nerve damage on my face deep in my left eye.

Emotionally, I feel apart - especially at my so called 'retirement party'

the company had for me. Let's call it what it was - I was sick, I couldn't

work and it wasn't any retirement party. But people wanted to see me. If I

ever wanted to have a drink and couldn't it was that night. I worked so

hard to get to be a VP in that company and it was part of who I was and

people were actually 'congratulating' me on my decision to stay home. They

had no clue.. I didn't decide anything. My body did. - and that is when I

learned how much society puts on 'what you do' versus 'who you are', so I

had to start all over on 'who I am', because I didn't really know without my

career.... So I actually now have a lot of sympathy for the kids coming out

of high school that are told to pick a 'career' right away - we really don't

totally know what we want to do for the rest of our lives in most cases and

yet we are expected to - anyway...

I had a lot of acceptance to work through, almost like a grieving process of

letting go of who I was and and working on who the new is. Along with

understanding and managing this new illness. It wasn't easy, but working

through this process sure helped.

It's been years now and I don't grieve anymore for work or who I was because

I have new hobbies that keep me busy when I can do things for an hour or two

and I have learned how to manage the illness a little bit better so as to

enjoy a bit more.

Well, gotta go now, but that's the readers digest version.

Allsion

-- Changes

Can some of you share the changes that happened to you both physically and

emotionally?

I had a few, I had mentioned my memory was not quite as good. I wonder how

much of that had to do with running a fever for almost 5 weeks straight,

sometimes very high.My hair is different now. I cut it short when I first

came home form hospital and it never grew the same again. It came in thin

and sporadic at first, now my hair is wavy at the back, and real grey, my

hair was always super straight.

I had problems getting my sex life up and going again and was super

depressed that for a time I had to take a pill for this to happen, at 35 I

thought that was the worst, thank god that is gone.

My emotional status has changed totally, now the little things mean so much

to me and I find myself to be so much more emotionally fragile than I was at

any other point of my life.

I guess the obvious we all share is the loss of energy to maintain a

perfectly normal life.

If you don't mind please share, there may be some things i expeienced that I

may not have known that was realed to Stills

Mike...

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