Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

First Visit With Rheumatologist


  • Please log in to reply
13 replies to this topic

#1 ErinF

ErinF

    Senior Bronze Member

  • Members
  • PipPipPip
  • 53 posts

Posted 14 March 2007 - 08:37 AM

Well, I've been referred to Dr. Kevin McKown at the University of Wisconsin-Madison's Rheumatology clinic. I'm both anxious to go but also scared to death. I'm almost afraid to be completely honest about my symptoms because I'm so scared of the diagnosis, but I know I need to be completely honest. I couldn't get in until April 9, and I feel like it's forever from now. My primary care physician prescribed Xanax to keep me calm because I keep sort of "losing it," I.e., I'm crying a lot. I know that things are better today for systemic sclerosis than in the past, but it's still so hard to think about and not feel torn apart inside. As a psychologist, I'm very aware of how quickly I could become very depressed at the rate I'm going right now. I wish I could just "snap out of it" and be positive like so many people keep telling me to be, but that just feels like something I am completely incapable of right now. Does it get better? Do you get to a point where you make it through a day without crying?

--Erin

#2 scampie5

scampie5

    Silver Member

  • Members
  • PipPipPipPip
  • 158 posts

Posted 14 March 2007 - 08:58 AM

Erin my heart goes out to you try to keep positive you will have alot of support on this site I undersatnd that this I a hard condtion to accept and we all deal with it differently , I just said to myself I have it nothing I can do put to follow advice from speacalists I have crest and diffuse with lung damage raynalds , vasculatis ect keep your chin up will be thinking of you and keep in contact with the sclero site best wishes Lynn

#3 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 14 March 2007 - 09:35 AM

Dear Erin,
Big, big hug first of all... when I was suffering my first symptoms I was passed around from Dr to Dr. My forth doctor finally diagnosed me and I felt such relief. Yes scleroderma's a bit frightening but I felt knowing is soooo much better than not knowing. Let me encourage you to be completely honest with your rheumatologist as it will help in the diagnostic process. Once they reach a diagnosis they can start treatment and hopefully you’ll start feeling better.

At first I cried everyday too. I tried and tried to be positive, but eventually Lexapro brought back normalcy. Let me encourage you to get involved in a local support group. It helped tremendously to meet others, share emotions, doctors, drugs and to see that they have managed their symptoms for years and so can you.

Don’t be afraid.
Your rheumatologist is there to help you and so are we,

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#4 Sam

Sam

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Delta, Ohio

Posted 14 March 2007 - 09:47 AM

Erin, yes you do make it through the day without crying. But that happens when your ready to make it happen. I was 21 going on 22 when I had found out and I had cried all the time. I remember wanting to go away and never coming back. Also I had asked for me to be around to watch my children grow up and graduate from school. They all did plus I have two new granddaughter's this past year as well. Things do get better but right now you are going through what so many of us have. Coming on here and reading and talking with others will be a big help to you. So dont get too discourage when your feeling down, I still getting feeling down every now and then, especially when something in my life goes wrong, but I think as a person we all do that regardless if we have a disease or not. Take care, Sam
Sam

#5 nan

nan

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 649 posts

Posted 14 March 2007 - 09:54 AM

Erin,
I was diagnosed in December 06 with CREST(Limited Scleroderma), Sjogren's, and Fibromyalgia. I was so thankful to have a diagnosis that at first I was ok. Now I am somewhat numb! I am on disability retirement and I found that I am withdrawing from activities I used to do. I think eventually you will get over the crying, but this is devastating to face. I think that once you see the doctor you will feel more comfortable and not as anxious because you will have more knowledge. I do know from what I have read that so much progress has been made in the area of treating Scleroderma. This site has helped me immensely. I feel good when I hear of people that have been battling this for 20 years. I am sorry they have had to suffer so long, but it's good to hear that many years. Feel free to send me an email anytime. I have you in my thoughts. :D
Nan

#6 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 14 March 2007 - 10:04 AM

Hi Erin,

I'm so sorry for the way you are feeling right now. I've certainly been there, but I'm here to tell you that time makes a big difference. Once you start working through it, have a great doctor to help you, you do adjust. I'm going to give you a link on emotional adjustment that may help you.

We are here for you!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 14 March 2007 - 12:27 PM

Hi Erin,
Many of us have been in the same position you are in right now. My heart goes out to you because I remember all too well having to leave work because I was crying and just could not pull it together. It will get better. Yes a positive attitude would be great, but it is very hard to do until you can fully understand what is going on. Hang I nthere, it will get better.

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)

#8 summer

summer

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 522 posts

Posted 14 March 2007 - 12:34 PM

Hi Erin,
I can totally relate to how you are feeling as I am also yet to be diagnosed.
I fell into deep depression a couple of weeks ago and eventually went to see my doctor who prescribed an anti-depressant. I made the big mistake of going off my anti-depressant only 1 week after initially taking them because I felt too normal!!, a few days after stopping them I felt like I was falling into a deep black hole of despair, no interest in anything and not wanting to do anything. I resumed my anti-depressants the next day and now feel almost normal (mentally) again. I will not go off them again.
I have a 3 year old son and a husand and I know that I have to fight this and get up every morning and sometimes pretend that everything is normal for my sons sake. I can honestly say that I don't think that I have really cried over this, which I suppose is a bad thing really. I know the time will come when I will cry maybe when I am officially diagnosed>
This disease teaches you to be patient it unravels itself when it is ready and I am no longer in an over anxious state (for now anyway).
If you are still in a very emotional state every day maybe you should seek more help from your doctor and he/she can prescribe something a bit more effective for you. I was told my anti-depressant can take up to a month to work.
Always remember that you are not alone fighting this battle this forum is a great site and the people here are always encouraging and optimistic. We all have our down days if we didn't we wouldn't be normal.
Anyway Erin, try to relax I have learnt that worrying will achieve nothing it only exasperates the symptoms that you are having.
Chin up and take care
KInd regards
Celia

#9 Heidi

Heidi

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 573 posts

Posted 14 March 2007 - 01:46 PM

Hi Erin,

It seems like everyone has given you great advice. I don't have too much to add.... only realize that even if and when you get a diagnosis, it doesn't have any predictive value. In other words, even with a diagnosis, you still will not know for sure what will and will not happen with this disease. It is unpredictable and no one knows how it will or won't progress in you. I was pretty anxious the first year after I got sick and my rheumatologist was pretty sure it was scleroderma (he still has me diagnosed as undifferentiated connective tissue disease 5 years later). I over-interpreted and over-analyzed every change I noticed in my body. I was convinced my lungs were going to become involved any day and kept waiting for my skin to harden to the point that I would lose mobility and function and for my Raynaud's to get so bad that I would start developing ulcers. NONE of that has yet to happen. After about a year, I realized that my worrying about what might happen with this disease was just causing me undue stress and I would just live each day to the best of my ability and worry about the future as it occurred.

I know it is easier said then done, but please don't expect the worst with this disease and try not to worry, but to focus on getting appropriate treatment for the symptoms you have now.

Warm wishes,
Heidi

#10 PAULINE

PAULINE

    Bronze Member

  • Members
  • PipPip
  • 26 posts
  • Location:Utah

Posted 14 March 2007 - 03:58 PM

Hi Erin,

I am so sorry to hear that you are not feeling well and that you are scared about what the rheumatologist is going to tell you or not tell you. Even thou I don't post to often I read the sclero forum and it is the best support ever! In five more months I will be at my 1 year mark since I was told I have Diffused Scleroderma with lung and esphages involment plus Raynaunds. But I am feeling good and there are medicines out there to help with this illness. Keep in mind that they are comming out with new drugs everyday that possible will be what all of us need to be well again. For me the good days surpass the bad, This to I wish for you and all of us fighting this illness.
Take Care and Look Forward to the help you will enjoy here on the Forum.

HUGS


Pauline Huggins

#11 americanmike

americanmike

    Senior Bronze Member

  • Members
  • PipPipPip
  • 72 posts

Posted 14 March 2007 - 05:29 PM

Erin-- ok I know how you feel. It stinks. But you're being too pessimistic.

I'm not an expert or a Doctor. But I have done tons of research and I have read every article on this site and many many more. And here's what I'm sure of...

You will beat scleroderma. Scleroderma will not kill you. You do not need to say good bye to your beautiful daughter. Stop it. Stop it Stop it. I'm sure your rheumatologist will tell you this. But try to trust me till you get there.

You have been diagnosed in 2007. There have been cures! There have been many many complete remissions. They are working on these tremendously good early results and they will get better. You are young. You so far have a slowly progressing form. I know it's terrible news and a terrible disease... the statistics say you most probably will beat it.

I'm sorry you feel terrible. That's natural. But it's not time to say good bye. You are nowhere near death. 15 years ago patients with SCL-70 had like a 67% survival at 10 years (check this websites survival studies links and read the actual retrospective studies from university of pittsburg). Some fat people face worse survival numbers! Sorry that sounds crude but it's true and relative to your fear.

The mathmatics say you're not at deaths door. The "incurable" nature of this disease is no longer the case. Your initial presentation is very positive (from what you've described).

I've been to the land of despair, fear, and anti-depressants. But I came out of it, and I know you can too. You just need hope, and you need to put death back into abstraction and stop feeling that sadness. Look your prognosis is relatively good.

I'm like a broken record. But really and truly you have so much going for you and the science and medicine say you're gonna be ok.

Wishing you hope and rejuvination!!!

Michael In Florida

#12 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 14 March 2007 - 05:57 PM

Erin Darlin'
Yes you do get to the point where you can make it through the day without crying. It might take a while, but it does happen - as long as you decide to fight this and not give into it. You can't let yourself become the disease, but rather just accept it as being a part of you, just like the part of you that is a wife, a friend, a mother, a teacher, a daughter, a psychologist, etc.

I have come to treat my health as just one of my part-time jobs. I spend a certain amount of time dealing with it, then I move on to my other part-time jobs. I also try to do something that makes me laugh every day. :D It took some time to get there, but I'm so glad I did get to that point because Yes -we have to think about it and deal with, but we also have to get away from it as well.

Keep in mind, that you have a new family here at ISN and we will support you in any way that we can. Many of the people here have been dealing with this for more than 20 years. I'm going into year 5 but expect to be around for many, many more years. I promised the hubby he would have to put up with me for at least 50 years - that's a little over 17 years from now.

Lots and lots of big hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#13 kramer57

kramer57

    Senior Bronze Member

  • Members
  • PipPipPip
  • 82 posts
  • Location:Michigan

Posted 15 March 2007 - 03:15 AM

Hi Erin,
Big hugs to you! The process of getting diagnosed is tough. It was an emotional roller coaster for me. When I discovered my esophagus problems could be a symptom of Sclero and read about Sclero. on the internet I was actually happy, filled with a sense of discovery and relief - "so this is what's wrong with me!". But when I met the Rheumatologist last Oct. and he looked at my fingers and said he was sure I had Sclero, my heart sank and I didn't want to believe it. So I had him do a finger biopsy, which confirmed it. Then I got all sad and crying and afraid of what would happen. Then I joined a couple forums and felt relieved when I read about all the people who have it, because everyone progresses at a different rate and has different issues, so I didn't feel so afraid and alone anymore. So yes it will get better, I think it takes a while to get used to the idea of having Scleroderma, and I just had to let myself cry sometimes to get the emotions out, and now I don't need to cry as much. ( I have depression anyway and I've been in counselling for a few months and I recently started Zoloft which seems to be helping too). Try to remember it's a disease that you have, but it's not your whole life - you are a lot of other things besides a person with Scleroderma. Don't let it consume your whole life - find some time every day to relax or do something you enjoy to take your mind off it. Hang in there, it gets easier.

Hugs,
Karen

#14 Nancy K

Nancy K

    Bronze Member

  • Members
  • PipPip
  • 18 posts
  • Location:Ludington, MI

Posted 15 March 2007 - 04:49 AM

Hi Erin,
So sorry for you and what you are going thru right now. I'm pretty sure everyone here can relate, as you've seen in the multitude of postings. Just wanted to add my support to theirs! I'm a social worker, and you can't help but wonder sometimes if it's depression, or just a normal reaction to this troublesome disease. Personally, I think it's pretty normal to cry a bit & have a little pity party once a day, or more on the really bad days! I've had this mess for 33 years and have alot of kick left!

Hang in there, and I truly hope things go well with your rheumatologist.

Lots & lots of hugs!
Nancy K