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Grzybowski Syndrome


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#1 BC Gal

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Posted 12 October 2010 - 07:26 PM

Hi everyone,

I have not posted since 2007 and now I am back with a definitive diagnosis of Grzybowski Syndrome (similar to scleroderma but extremely rare).

It's been awful these last few years. The disease had progressed and I am very symptomatic with hundreds of angry red follicular papules all over my body from head to toe, lots of keratacanthomas that constantly require excision, and my poor face....I don't look like myself anymore :( My face is hard and mask-like. My lower eyelids have severe ectropion and my corneas are scratched from the exposure, giving me double vision. My doctors are trying to help me with various medications and treatments but so far not much has helped. I'm currently on Lyrica for pain, azathioprine, and amitryptiline. I have also done IV pulse steroid therapy which hasn't really had any desired effect. I've also been on acitretin for several years but that did not help so it was stopped.

I find myself having a hard time, I am grieving for the life I used to have before I got this extremely rare disease. I try very hard to stay happy, I am a positive person by nature but I feel so beat down by this disease. I just feel so alone sometimes, it seems that no one in my life can understand the emotional pain I carry. I'm trying very hard to maintain my happiness but I am struggling. Is this normal? Is there anything I can do to help myself with the emotional side of having a chronic and disfiguring disease?

Thanks for any advice :)

BC Gal

#2 Jeannie McClelland

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Posted 13 October 2010 - 03:20 AM

Hi BC Gal,

I'm very, very sorry about your diagnosis. It sounds like a truly awful thing to live with and I can completely understand how hard the disfigurement is affecting you. I think it is only natural to mourn the loss of such a crucial part of what determines our identity. I bet you've been told a hundred times that "beauty is only skin deep" and "looks don't really matter", right? Well, they do to us.

I think the first thing I would do is find a really good counselor. If you are near any large rehabilitation facilities, maybe they could recommend someone whose practice is aimed at folks who have had an injury or disease that affects their self-image negatively. Wouldn't it be helpful to be able to talk to someone openly about all the ramifications of your illness and the lack of understanding (and support?) of family and friends?

Another thing you might want to do is check out our section on emotional adjustment and coping. There are some helpful tips in there.

Keep posting - while your disease is so rare (only 30 cases reported in the medical literature, according to DermNetNZ) that I doubt many of us have heard about it before, we can certainly empathize with your problems. We're always here with a handy shoulder. Vent whenever you like!

Best wishes,
Jeannie McClelland
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#3 Amanda Thorpe

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Posted 13 October 2010 - 09:16 AM

Hello BC Gal

I am so sorry about your diagnosis. When I was first diagnosed with scleroderma one of my first worries was how I would be effected facially. I saw a film about scleroderma weeks before diagnosis and in the film the lady's face ends up a mess so of course I that that would be me.

Like Jeannie said anything that effects our appearance can impact on our self esteem and who we are as people. We then have only two options, make the most of it or not. Making the most of it is not as simple as it sounds because you start where you are, grieving what you have lost and admitting how awful awful is. You won't stay there though because you didn't start there and your personality will demand that you move on into acceptance and you will...when you're ready and able.

Here we all have a chronic illness or two and are having our journey's through it that brings challenges most people never have to face. We have no choice about what we face only how we face it.

Take care and keep posting.
Amanda Thorpe
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#4 BC Gal

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Posted 13 October 2010 - 09:34 AM

Thank you both so much for your responses. It brought tears to my eyes to hear words of support from people who know what it is like. I can't tell you how much that has lifted my spirits, it has made me feel like I am not alone even though my disease is so rare.

I really miss being a "girl" and I know that any woman reading this can relate. I miss wearing make-up, I miss wearing my hair up, I miss not having a care in the world, I miss not being limited in my choices of clothing or hair styles because of the physical manifestations of my disease, I miss the feeling of being 100% comfortable and pain free...I miss just about everything. I miss being the woman that I was and I feel like I took so much for granted before. My self esteem is at the lowest it could possibly be.

I have been thinking about finding a counsellor to help me so I will follow up on that and start looking today. I will also check out the link regarding emotional adjustments and coping. Thank you Jeannie :)

Thank you Amanda for your encouraging words, they were what I needed to hear. :) I'm going to make an effort to start facing this and making the best of it. It's going to be a long slow road back to feeling "normal" but I will get there.

BC Gal (Annie)

#5 Amanda Thorpe

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Posted 13 October 2010 - 09:48 AM

Annie normal is over rated, weird 'n' wacky is way better! :emoticons-yes: It's the best way to be! :VeryHappy:
Amanda Thorpe
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#6 Joelf

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Posted 13 October 2010 - 10:08 AM

Hi Annie

I was so sorry to read about your diagnosis. Like the majority of people I've never heard of it but I can understand how awful you must feel to have it affect your appearance and therefore how you feel about yourself, never mind the actual pain you're experiencing. I can empathise a little bit with you as I know how worried I was in the beginning that my hair would fall out and that I would put on weight due to the medication and I was far more concerned about that than the actual disease.

I do hope you will keep posting on the forum for support whenever you need it. :)

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#7 Shelley Ensz

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Posted 13 October 2010 - 04:45 PM

Dear Annie,

I'm really sorry you have Grzybowski Syndrome but glad you've found a support home with us. It's a huge thing to adjust to, but you are already on the right track by finding us and by seeking out counseling as well.

I agree with Amanda, that you should just give up on the whole idea of being normal again! Normal is just a setting on the dryer, anyway; other than that, there hardly is such a thing. Once you get over the emotional hump, and the grief phase (just plain face it, get it over with, counseling is fantastic for that), the next phase is Weird 'n Wacky, and I can't think of anyone better than Amanda than to teach you how to muddle through that one.

Chin up; this is only a phase and soon you'll find yourself in a new place, where you can be happy just to be, and to be you, and find that life can still be fun and happy and lovely. You can have those carefree days again; different yes, but if you use this as an opportunity to grow, which you are, it won't be long and you'll be the one here, providing comfort to the newcomers and being able to solidly assure them that yes, they too can become just as weird and wacky as you and Amanda!

Here's some flowers and warm hugs, to help tide you over in the time being. :flowers::emoticon-hug:
Warm Hugs,

Shelley Ensz
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#8 enjoytheride

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Posted 14 October 2010 - 04:22 AM

I'm so sorry that you have landed in this place. You certainly have a lot of issues that would make it hard for anyone to work around. Sometimes it's just too wearing and you need to rest a bit emotionally. But you will be refreshed. If giving hugs will lift you up, you know there are dozens and dozens and dozens coming from here. (((((hugs)))))

Are there any things you have thought about doing? You know the kind of things you would do if there weren't so many other things getting in the way?

Me, I've always dreamed about taking beautiful photographs and have found myself sitting on my porch taking pictures of the animals and trees. I found that a good place to put my thoughts. There are many things like this from crocheting to rubber stamping to writing poetry or a short story to painting to composing songs to whatever. Sometimes just thinking about it is enough.

I guess I think of this because at the lowest time in my life, someone suggested doing something that had been tucked in the back of my mind but I never got around to it- so I started it and it dragged me out of myself to a better place.

With warmest wishes for you,

Priscilla

#9 BC Gal

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Posted 14 October 2010 - 06:25 PM

Thank you everybody :) I'll keep you posted on my progress.

BC Gal (Annie)

#10 Shelley Ensz

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Posted 16 October 2010 - 09:31 AM

Hi Annie,

Enjoy/Priscilla made a terrific suggestion. One thing that helped save me when all else bit the dust was turning to hobbies. I had to make adjustments, doing projects that were easier and quicker to complete. I gradually turned to drawing, painting, cooking, writing, and taking photos. Years later, I added sewing and now if anything near me sits still long enough, it gets either drawn or sewed! Anyway, I certainly had more time on my hands, and by spending it doing as many creative things as I could muster, it helped to keep me from ruminating.

Ruminating on illness is like about the worst thing in the whole world, if you ask me, and involvement in other activities is its antidote. So that's why you'll probably hear many people jump in with ideas on how they overcame that initial, awful hump of "why me" and terrific pity parties that could last all night long. Counseling is a necessary tool, and a great help. And the other end of it is how we help ourselves.

Also I learned that it is not necessary to be "in the mood" to tackle old hobbies or develop new ones. It is simply a matter of doing, and by the act of just doing something (anything) we begin to build a new life. I was so excited to be able to talk to people about the new picture I was drawing, rather than all the aches and pains and doctor visits! Really, that bores both me and them to tears half the time.

So there is much more wisdom than meets the eyes to Priscilla's hobby suggestion.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 Buttons

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Posted 17 October 2010 - 12:40 AM

Hi Annie,

I can't pretend to understand what you are going through at the moment but like others have suggested taking part in some sort of hobby helps because at the end you feel you can still achieve which is good for your self esteem. Like others on here I took up photography and went back to doing sewing and even hand knitting! Something which I hadn't done for nearly 30 years!

Do take care and be kind to yourself.

Best Wishes

Buttons