IV clinda saved my life

[annie from hawaii systemic sclero]

Greetings everyone!  After moving from Hawaii to get medical care at USC, I've been living with friends/family and haven't had easy access to internet.  But now I finally have my own apt!  But re my systemic sclero, my skin has gotten much better, but I have banding.  Disappointingly my nails are curling a bit, which is becoming increasingly painful.  On the issue of pain, I'm finally narcotic free!! When my sclero first flared, I had horrible skin pain to light touch and was on high doses of morphine.  Now, I'm just taking neurontin and NSAID.  Great news, no internal damage.  My doctors and I feel 5 rounds of IV clinda saved my life bec it slowed the fire-paced progression of the disease.  Now I've got 20 lbs to lose since living with my mom and being on the morphine; hopefully exercising will give me more energy and relieve some of this skeletal pain.  The skin on my forearms are still hard, but getting better, and my fingers are still stiff.  I've missed your postings so much and it's going to take me a while to read all the post I've missed.  Annie from Hawaii:roll-laugh:

[Cheryl F]

Annie:

So glad to see your post. I have been thinking about you.

Cheryl

[Randy]

Hi Annie,

Welcome back.  It sounds like you aredoing much better!  Keep up the progress, and I  look forward to your posts.

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[Goodwife]

annie,

great to hear from you!  I was wondering what happened to you.  Great news on your improvements – keep going!  Looking forward to reading more of your improvements down the road.  Take care,

 

[MaryP]

Congrats, Annie and continued improvement!

[Kim]

Welcome back, Annie.  So nice to hear from you, and even nicer to hear how much better you are — WOW!  All the stress and energy required in a move, you would have been lucky just to have stayed the same, but to have dramatic improvements is really something.  What a relief to see the light at the end of the tunnel that has been such a nightmare for you.  Was it hard to get off of the morphine?  I've heard that can be a whole other set of challenges that you didn't need.

Hope it's smooth sailing for you from now on…….kim

[Author]

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