Update-Sorry I've been MIA for so long

[mschmidt]

Hi everyone!  I'm so sorry I've been out of the loop lately-I've had so much going on, and so many changes.  My husband and I moved the end of July, I travelled the entire month of August, moved into our place September 2nd, had a horrific round of iv's that lasted until Labor Day, my dad was in the hospital shortly thereafter, and I'm just now settled into my place, and finishing up my 8th round of iv's.  I just read 8 pages of new stuff on RBF to get caught up, and I'm so inspired by everyone that's posted about their problems, victories, etc.  I'm overjoyed with all the success stories, and my heart goes out to those who are suffering.  I've had amazing progress since I started my iv's in March, and I wanted to share my experiences this summer with everyone.  I'm now up to running 2 miles at a time, I walk 4 miles 3x/week, run 1 mile 2x/week, and run 2 miles 1x/week.  (Randy, we ARE going to do that triathalon some day soon!!:D) My energy levels are off the charts, and the only thing I'm struggling with lately are hormone issues, which are getting addressed next week.  My thyroid has crashed, I gained some weight but, I knew that was coming.  I've been dealing with some RIDICULOUS itching, and had to go off my Lyme meds (Omnicef, Biaxin, Plaquenil) since Monday, and will re-introduce them one by one next week to see what happens.  I had to go off my strict diet when I was travelling because it was impossible to stay on it out of a suitcase for a month.  (I've resumed it this week)

My nurse commented to me the last few iv's that my skin is considerably looser than when she started with me in March.  No shiney skin, my knee pain is almost completely gone, joint pain in hips, legs and arms is gone, my flexibility is getting better (I can touch my heel to my butt again to stretch my legs), and I feel like I'm 80% there.  The lyme meds have made a difference, and I've only been on them since July.  I think once my hormones are brought back to some normalcy, I'll feel even better.  My hands are still the tightest part of my body, and I still have slight contractures but, I know they will come back to me some day. 

To all the newbies, AP WORKS…it takes some time but, it works.  I often forget about how far I've come because I focus on what's wrong with me still so, I'll tell you what has changed:  Since my 1st visit w/Dr. F in late Feb.2009, I can open my mouth 6.5 cm (was 5.7 cm), my skin scores are down to 4.5 (was 17, and remission is 0), my range of motion in my lower body is at about 80% (was about 40%), range of motion in my upper body is 90% (was 20%), I can pinch the skin on my forearms, and everywhere else on my body affected by SD, and finally, I have my dimples back in my face…and my butt.  I welcome the face, and I'll take the appearance of fat on my butt because it means my skin is loosening:blush:

Thank you for all of your support, and I promise I won't be a stranger anymore.

God Bless you all-

Maria

[Parisa]

Hooray for dimpled butts, hairy arms and sweating like a pig!

Thanks for sharing all your wonderful progress.

I hope you can get to the bottom of your itching.  My husband had horrible itching at one point but I think it was actually the babesia/Lyme.  IV Rocephin also made him itch at one point but we decided to go after the bugs, ignore the side effects and he just took  alot of Benadryl.  Still we were happy when he was switched to a different med a few months later. 

[richie]

Hi

Skin itching is very common in diffuse scleroderma –as the skin starts to loosen for some reason the skin itching really picks up —-it lasted with me about 2 years or so mainly in winter—Dr T felt it was the skin healing internally —I used an OTC product called Sarna lotion –it helped somewhat –also make certain the skin isnt dry –and use a lubricating product like Eucerin –also I switched to Basis soap for sensitive skin –still use it –that also helped —

richie

[Kim]

[user=13]Parisa[/user] wrote:

Hooray for dimpled butts, hairy arms and sweating like a pig!

I couldn't have said it any better, Maria. :roll-laugh:  It's not even twisted humor ~ for us, those ARE good things.

I am so very happy that things are all heading in the right direction for you.  Are you still in the Chicago area?

Take care…..kim

[mschmidt]

Thanks for the advice Richie.  Dr. F has me on hydroxyzine (antihistamine) daily, and it only takes the edge off.  It's the worst when I sweat, and get out of the shower.  If I put any lotion at all on my body, it makes it worse.  I have to say, it's pretty relentless, and uncomfortable.  My skin is definitely loosening so, I'm sure it has something to do with healing and getting the circulation back in thos areas.  Maybe putting a filter on the showerhead will work as well.  I hope this doesn't last for years because it's already making me crazy, and it's only been a month!!

[mschmidt]

Kim,

I'm SO happy to read the word “Remisson” under your description:roll-laugh: Yes, I'm still in Chicago.  I noticed the itching onset a month after starting my Lyme meds, which tells me things are being stirred up a bit.  We live so close to each other, we'll have to make it a point to get together sometime in the future. 

Maria

[Christina V]

Hi Maria, Just want to say I am thrilled  for you and the progress you have made.  Thanks for sharing, these are the things that give us hope and keep us going.

All the best, enjoy your new home, Christina.

[Author]

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