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susie54

Skin Lesion Biopsy

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Ever since I have had this MCTD for 7 years now, I get these two dot lesions that come up in different shapes, alot look like bruises. I have had a quite a few biopsied and they all come out different. I think I really have the one and it comes out Different every TIME> This time they were consistent with a bruise. Now, you tell me how two purple dots appear out of nowhere and they are a bruise. Other times they have been pseudo folliculitis, granuloma type, BUG BITE, and I believe two were consisitent with leukoclastic vasculitis. Does anyone else get frustrated with skin biopsies ? Just venting.

On the sad note, I just finished my last arts and crafts class with the nursing home. I have been doing it for four years twice a month. A friend and I do it together. My hands just won't take it anymore and it takes alot of energy. It is hard to say goodbye to the things we love doing. But I have to put my energy in other places now and have to move on. Susie54

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Susie,

Those purple dots do sound strange. I get a rash every once in a while, but nothing like what you describe. Do they itch?

 

Sorry to hear that you are having to give up your workshops. :( I do know how you feel. I've had to do the same. They use to call me "the workshop queen" but now I just stay behind the scenes and do most of the prep work. Too stressful and they were the type of workshops that required me to get dressed up in a cleanroom "bunnysuit" and work around chemicals and silicon wafers. NOPE - don't do that anymore. Like you - the physical side effects were way too unpleasant, so it's best to give them up and find something else to replace them with. Hope you find a suitable replacement.

 

Big Hugs - Janey


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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Hi Susie,

 

Those biopsies do sound very frustrating...how could the same dots come up as such different things each time! GRR.....

 

I am sorry to hear about you have to give up your arts and crafts classes also. I am sure it is for the best, but hard nonetheless.

 

 

Warm wishes,

Heidi

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Susie,

 

Yes, those two dots sound weird. Do they appear at the same time and the same place (together)?

 

I had a very bad rash the first year when I was most sick. It was kinda like chicken pox on the trunk, arms and legs. Thankfully it never appeared on my face, hands or feet. The itching drove me crazy for one year. I wore long sleeves and slacks. I had two biopsies and they came back as urticaria (hives), I think it was a lump-all for when they can't pinpoint something. My rheumatologist said it was definitely scleroderma related. My family doctor couldn't figure it out so he first treated me for lice! Oh, my . . . :o

 

I know it is hard to let go of people and activities we enjoy. Just remember how many good times you had and how many people you brought happiness. I hope you find something else you really enjoy.

 

Warm thoughts,

 

Dee

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Yes Susie, I really do hear you. Everything you said strikes a chord with me--that could be a pun--I had always played guitar. I don't now but not because of the same reason as you having trouble with your hands.

 

I have problems with my vascular, neurological and respiratory systems and can't even walk around and shop. My story is too long and complicated for this forum but I understand your loss!

 

I had always been so very active in everyway. All of us here in this forum(and those outside it dealing with other chronic illnesses) are all trying to live the best way we know how. None of us want to be burdens or bring other people down; yet it is so important to be able to voice our pain. It is so hard to remain stoic.

 

As far as being fed up with the biopses, I am just so fed up with the medical system in general. It doesn't sound any better in the US than in Canada either.

 

Susie, maybe you will be able to do crafts again sometime. What kind of crafts did you use to do? You have the right attitude though--about moving on.

 

Last year at this time, I couldn't even hold a telephone! I had lost all neuro-muscular control over my hands and arms. This year I am able to type this out and although I could play guitar a little, I struggle with breathing and just feel distressed like no one could imagine. I just never could have ever known or imagined what this kind of distress would be like before I became so ill.

 

So keep up your hope and just know that we all really hear and understand what you are saying.

 

Best Wishes

Hailee

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Hi Susie54,

I don't have any experience with skin lesions, but the frustration aspect of it, I have alot of and can answer to... I only hope a commonality rears its head so there will no longer be such a mystery involved... for you.

 

As for having to give up something you have enjoyed so much... I feel bad for you and all who participate in that activity... what a great thing you did, during this time! I have no doubt at all you will find some way to stay connected with these folks in due time. Hang in there!

Big Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thanks Hailee and Susie,

 

I just read your reply and that was so nice. You are right, all of us here are dealing with change (some greater than others) and I feel so lucky to have alot of problems that are able to deal with and keep going in a pretty good pace.

I want to go back to my painting and I hope to join an assistance league in the area. They could give me alot of options on which way I could be of help.

Hailee, I hope you get back to your guitar. That is a hard one to play with fingers and hand problems but ought to keep them active. It sounds like you have gone through alot of complicated problems without much being resolved. I hope things get better for you.

 

THanks again and here is to a positive DAY! Susie54

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