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Getting Nervous Now


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#1 janeygirl

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Posted 07 August 2007 - 06:52 PM

Hi,
Right now I am a bag of nerves. I have an appointment in two days(friday) to go see my dermatologist but this time my daughter robyn is coming with me as I think she may have the same as me (linear scleroderma en coup de sabre). The reason I am soooo nervous is I havnt explained to my daughter what can happen with this disease as I didn't want her to have to deal with all the emotion if she doesn't have it. But I am still trying to understand the disease and deal with it myself. Like normal being the mum I want to be strong for her if she is told she has it, but I already know I won't be as tears are coming to my eyes while I am writting this. I know none of you can help in this situation, I guess its just nice being able to tell someone how you feel otherwise I bottle things up and it just makes it worse...
thanks for listening
~jane~

#2 jefa

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Posted 07 August 2007 - 09:10 PM

Hi, Jane. I can understand how you feel. Anticipation can be a great stressor. Try to relax for yourself and your daughter. How old is she, by the way? You are right about not keeping the feelings bottled up inside. That is one of the greatest things about this forum.
Warm wishes,
Jefa

Carrie Maddoux
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#3 Tammy

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Posted 08 August 2007 - 12:47 AM

Hi Jane, I can relate to how you are feeling right now, the anxiety alone is a lot to deal with. I am making an appointment with a rheumatologist today, I am very new to this site and everyone here has been so wonderful, if you need support you have come to the right place!! I have known of my doctors suspescion for several weeks and I tried to deny it, didn't even want to know about it, then I found this site. I finally let myself have a good cry last night (while posting), now I am ready to move on and do something about it! Keep your head up and post anytime, it really helps to talk with people who understand what you are dealing with.


Good Luck, Big Hugs
Tammy

#4 Sweet

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Posted 08 August 2007 - 04:07 AM

Hi Jane,

How old is your daughter? My heart goes out to you, as I've had the same kind of emotional battle within myself with my kids. I keep them informed, but try not to go into too much detail and worry them unnecessarily. Depending on the age of your daughter (if she is an adult) this could be the time where there is a bit of role reversal and she may be the comfort for you during a difficult time - there is nothing wrong with that. :)
Warm and gentle hugs,

Pamela
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#5 Sheryl

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Posted 08 August 2007 - 04:52 AM

Jane,
Good luck on your appointment tomorrow. Does Robyn have the same marks in the same places that you have? When you talk to your Dermatologist tomorrow ask him for a recomendation to a (Scleroderma specialist) in Rheumatology. That will make him fee honored and he will of course assume that you will still continue to go to him. As you well may. If you don't have scleroderma specialist near by you may have to just get on the phone and see which rheumatologist is interested in learning more about your situation. Several people here have gone though several doctors before finding one that they work well together in deciding the best solutions for their situation. Let us know how things work out. Sheryl
Strength and Warmth,
Sheryl

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#6 Shelley Ensz

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Posted 08 August 2007 - 06:06 AM

Hi Jane,

I'm sorry you are also facing this possibility with your daughter. Although you can't promise her this will be easy, one thing that you could do is also focus on the positive aspects of it, with the tried and true stress reliever of it-could-always-be-worse approach. Sure, it does sound lame, I know, but framing things in a positive manner, or as positive as you can manage at the time, can help.

For example, linear scleroderma in the scalp can conceivably spread to the face. But, prompt treatment with experts could greatly reduce that possibility. So she is very lucky to have you guide her in that direction!

And, although linear scleroderma can cause additional complications (in a few cases, headaches and seizures, etc.), treatments are largely available to help with them, too. Plus, although it is not a desirable thing for anyone to have, you can teach her to take comfort in the idea that at least it is not fatal.

And if you both have it, you have an automatic built-in support group! But right now all you have is worry and uncertainty. After you know one way or another whether she also has it, it will be much easier to kick your super-coping methods into high gear and set a superb example of communicating, reframing, and coping with it for her.

It's also possible hers may be nothing. Decades ago, I started getting fleeting pains in the back of my head. And there were what seemed to me to be some lumps there. But I didn't want to appear like a silly goose in the doctors office, so I started feeling the back of the head of anyone who would let me (mother, brother, son, etc.). I figured out that nearly everyone had bumps in the back of their head, although mine did seem to be a lot more prominent than theirs.

A long time later, the pain worsened and I finally went to the doctor. I had two egg-sized benign tumors in the lymph gland in the back of my head. They were removed with no problem. What I had forgotten in my inspection of other people's head bumps, was to ask them whether they ever caused them any pain on a repeated basis, or whether their head bumps appeared to be increasing in size. DUH.

So I don't know what the moral of the story is, except it's possible she may have a similar groove as yours but that hers may be a natural formation while yours is due to scleroderma. Some of it is in the severity, symptoms, history and extent of it, to detect the delicate range from normal to abnormal.

Anyway, try to comfort yourself and your daughter as best you can. It should (ideally) get a little less stressful from this point on, as the worst of everything is usually tied up in the uncertainty.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#7 WestCoast1

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Posted 08 August 2007 - 06:19 AM

Hello Jane,
I am glad that you posted. My thoughts are with you as you go to your dermatologist. apt. with your daughter. You are a great mum for supporting her is such a gentle way.

Big Hugs &
*WestCoast*

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#8 janeygirl

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Posted 09 August 2007 - 01:00 PM

Tammy I want to personally thank you for your support, I think you are such a strong person. you are only new to this yourself and trying to deal with your own things, but you still managed to find the time and strengh to give me support, I think that is great... THANKYOU VERY MUCH and I wish you well
~Jane~

#9 janeygirl

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Posted 09 August 2007 - 01:39 PM

Thankyou pamela, carrie, sheryl, erin and shelley for your thoughts and support. I dont really know why but even now while I am writtng this I am sitting here with tears streaming down my face, I just can't stop crying. I think its again because I dont think I have dealt with this yet with what can happen to me, but now there is a chance it could happen to my daughter aswell and that tears me apart. She is 21 years old but the age doesn't make any difference she is still my daughter and im the mum who is meant to be strong for her, but I can't at the moment be strong for myself so how am I meant to be strong for her. I just wish it was a little while down the track before we discovered her symptoms as then maybe I would have been a bit stronger. But some how I have to stop these tears as in a couple of hours my daughter will arrive as she lives 5 hours away. My husband and I have decided to go back to my daughters place to spend a week with her, so if she does have this disease I will have the week with her to go through things with her. I will be sooooo glad when today is over atleast either way we will know what is going on. A couple of you asked if she has the same symptoms as me, well yes she does we both have 2 dents on our heads that can change so much through out the day, they can be flat then a couple hours later be huge dents or one can be a little dent the other a huge dent and we both have headaches just about everyday, but im still crossing my fingers that she doesn't have it. 7 more hours and we will know. I will get back to you all to let you know what happens... thanks again for listening
~Jane~

#10 emmie

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Posted 09 August 2007 - 04:41 PM

Dear Jane,

As a mom, I know you will find in your heart all that you need to be there for your daughter. I wish both of you all the best tomorrow.

xoxo emmie

#11 janey

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Posted 09 August 2007 - 04:58 PM

Jane,
My heart and thoughts are with you and your daughter. We'll all be thinking of you tomorrow and wishing the best. When you feel up to it, please let us know how things went.

Big Hugs to you both,
Janey Willis
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