epasen

Update

10 posts in this topic

Hello all,

 

Last monday I had the 15th (which is usually the final) session of Selective Ultraviolet Phototherapy (SUP), and we were up to 13 minutes. After this I saw my dermo. We looked my pictures taken last fall before I started to receive SUP, and there was a difference. Even that I look a bit tanned now ( :D ) we noticed that affected areas at least on my stomach had gotten a bit lighter and that way it looks smaller, cause the light areas on the edges had gotten lighter too.

 

We are now continuing my sessions, now only 2 times in a week, and the minutes are the same each time. It is actually quite relaxing to get 13 minutes in the middle of the day out of everything else, laying down in a warm light listening the calming sounds of the machine. After this someone even puts cream on your back! I'd pay anything to get those 13 minutes in the middle of every day. It's just amazingly relaxing, and it feels like I have much more energy to go trough the rest of the day.

 

I am just feeling really bad because of my left side and ankle. I feel the skin getting tighter and tighter, and I can really notice that while stretching. It's not the muscle, it's the skin. I'm afraid what will happen if I cannot move my ankle someday anymore.

 

Dermo said that there's nothing I can do about it. Then she added that if it's really getting bad, whe can try some meds but not before I really need them. I believe her, but I'm still worried about this.

 

What else.. well even that this skin tightening is really giving me hard stuff to think about, there's something great in my life too! In the beginnig of the March I heard that I'm going to Spain for 6 weeks to work in PortAventura in the summer! Yay! I hope this will be a great experience and worth of leaving all these good things I have in here behind. Luckily two of my friends got jobs too :)

 

I'm also going to the Caribbean next summer! I have some friends there and I'm going to stay with them for a couple of weeks. So it really sounds like it's going to be a great summer vacation for me!

 

I also get to spend 2 weeks in Finland too! It's in July when it's suppose to be warm and sunny in here. Hopefully Raynaud's won't bother me during this summer ;)

 

Thanks to all,

Emmi

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I am so glad the SUP treatments have worked well for you. Your summer plans sound terrific. Wish I could go with you.

 

The ankle sounds a bit worrying, since you are a dancer. Are you seeing a rheumatologist or just the dermatologist? I think I have asked you this before, but I can't remember. I suppose I don't need to tell you to keep up your stretching exercises on the leg and foot.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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The next consultation with dermo is in the fall after I come back from the Caribbean. I'm going to see rheumatologist in the next december, earlier if I have to. I think that if this ankle is getting worse I'm going to tell my dermo to send me to the rheumatologist when I get back to Finland.

 

Take care,

Emmi

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Emmi, have fun on your travels and adventures. Can you speak enough spanish to understand what people are asking you for? You will learn so much getting this opportunity. Have fun in the crystal clear waters in the caribbean. We will look forward to some of your learning experiences and great times. Two weeks of relaxing in Finland with your school mates and close friends will be fun. You will have so many things to talk about. It is special you are getting this opportunity. You parents are giving up much to see that you get this opportunity. Appreciate what they may be giving up so that you can flourish and grow. Safety is a big concern. They want you back after your adventures, so use extreme caution while keeping an eye out on your surroundings at all time. Ok your sclero mom has said enough. Make many memories and enjoy this opportunity. Sclero MOM


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Em,

I'm so excited to hear about your adventures...

I hope your treatment continues to help your symptoms.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Emmi,

That's great that the SUP treatments are working for you! Keep enjoying you 13 minutes while you can. Oh what it would be like to be young again and be able to travel.... hmmmmm Enjoy your time this summer but don't let your health go. Get back to see the dr if you need to.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Emmi,

Sounds like your schedule is full for quite a while and with fun stuff! Have a blast! Take pictures and share when you get back. I'm so glad the SUP treatments are working and that the time spent is relaxing rather than nerve wrecking. Keep doing gentle stretching with those ankles even if the skin feels tighter. Gently work it to keep it working for you. If it gets worse, please try to see a rheumatologist sooner than next December.

 

Have fun on your adventures!


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Thanks Sclero Mom and everyone else ;) I will be careful and I feel like going to Spain is a great opportunity for me to "practice" how to live on my own and show myself that I can take care of me.

 

And I will certainly call my rheumatologist before Dec if this tightening is still bothering me after I come back.

 

Less than 10 weeks to go and I'm all excited!

 

Stay healthy,

Hugs,

Emmi

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