Started methotrexate for Lupus...most likely my diagnosis

[Tinker]

Hi eye2dry,

To answer your question:  those hose drive me BANANAS!!!!  I know I need to wear them, but no matter what I do, they itch and cut off my blood supply.  I do keep my legs up most of the day as I am in bed.

I have a special device that helps me put the stockings on, but my thumbs are so painful that it's a real chore.  My lymphedema/or ? pitting edema is not bad......it's a +1.   So, it's not terrible and right now I can deal.

If you wear those stockings everyday, my hat is tipped to you.  Thanks for your input and your advice.   

[eye2dry]

Yes Tinker......I wear gradient hose when I work all day.

I work (LPN) 9-11 hours a day on my feet and I need the support.

I do not have varicose veins (yet??)

I know what you mean...they drive me crazy too...especially in the summer but

I don't wear them at home.

Hope you get straightened around soon...best of luck to you.

eye2dry

[Tinker]

I'm 65 , adding a disease every year it seems. 

So, I had written a couple of mos. ago that dr. felt I had lupus.  He made it sound as if it was not a sure thing.  But this visit, he said I definately have it.  He does make light of it , but he is still the best dr. I ever had.  He's more like a friend and taking me through this.

Anyhow, I don't know what to expect:  will it be my lungs, brain, liver, kidneys, skin, heart?  The Rockets coach, Kevin McHale, just lost his daughter to Lupus and she was only 23.  They thought she was getting better but she got worse in a hurry and died.  Sooooo sad.

I don't know if I"ll be one of those who are mildly affected or severely affected.  Since I'm older, I know something is going to claim my life but I don't know what or when.  My money is on the lupus right now.

Does anyone here have lupus? 

[aussie mum]

My daughter was diagnosed with SJS at 17. Now she's 23 her Dr has added Lupus to the mix. 
As you can see by my signature, she has a few issues and it hasn't been an easy ride physically and emotionally.

For the past couple of years she's been relatively well. Apart from medication for her thyroid and insulin resistance, she does not take anything for the SJS or Lupus (Plaq, pred & sulfa does not agree with her) but has recently had to add a new medication due to GERD/stomach issues.

I think it's pretty common to have both SJS & Lupus.
Like you, it seems we all collect new AI illnesses as time goes on.

Wishing you all the best

[Carolina]

Hi Tinker,

Ack, Lupus.  I had a doctor who thought I had it when I was 22!  He kept testing, I didn't have it.  But I read up on it and decided against it right away.

I have met lots of very successful people with Lupus....Full, active lives, tennis, Dean at a University, major accomplishments.

I have also know some less happy outcomes.  Lupus is like every other Immune Mediated condition...it varies from person to person, and from time to time.

I sincerely hope you are feeling better with the lymphedema, that is an awful condition and very disabling when it is in full swing. 

I too have collected something new almost every years since Sjogren's at age 60.  Amazing isn't it.

In my case I have severe coronary artery disease (under control now, as far as I know) and when it was discovered at my age of 57, I figured that would be my end, and fairly soon. 

Little did I know that I was spared a heart attack early on to amass a horde of other conditions!  Of course my osteo arthritis (garden variety) is the most painful.  My Peripheral Neuropathy is the most disabling, my Primary Immune Deficiency is the rarest and most costly ($140,000/year to treat), but it is still my Coronary Artery Disease that will probably be my exit visa.

I'll be 72 next Sunday.  I feel as well as I have in ages (mostly the Medrol, a form of Prednisone, I imagine).  There always is an exit visa.  And here in NC it is unlikely that a sink hole will open under my bedroom......but honestly, Tinker, we NEVER KNOW what lies ahead.

Have you read "How to be Sick"?  It's a great book.  I was embarrassed when I bought it because my husband already thinks I'm a hypochondriac.   But it has some very good ideas about acceptance of what IS. 

Keep us posted.  I have to think of 'conditions' like merit badges.....we are amassing quite a few, aren't we?

Hugs,  Elaine

[Tinker]

Thanks aussiemum and Elaine,

EXit visa.....that's a clever way to put it !  lol   but we've all got to face it at one point or another and I think my visa is stamped and just going through the proper channels now.

I'd like to read this book you speak of.  This is the only place I talk about this.  My son thinks I'm a little nutso even though I have only spoken about the lupus maybe 2 times for a short telephone exchange.  I think he just feels helpless, therefore, Mom is overreacting.

I guess I'm supposed to say it's nothin' atall.  Just a little bump in the road. 

My daughter gets it cause she has RA.  Thanks for letting me vent.    Tinker