Patient & Caregiver Stories Main Menu
(English) Stories by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z
All Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Andi P: UCTD, Inflammatory Arthritis, and Possible Scleroderma
As long as I can remember I have always been sick.

Pink Rose for Andi by Sherrill Knaggs, ISN Artist As long as I can remember I have always been sick. When I was little it was thought that I had cystic fibrosis but that was later deemed negative.

I went through a period of time where things were semi-okay then things started to happen again when I turned twenty-one. I would have symptom free periods of flares, they would come and go.

Now it is a different story, I have been to at least fourteen different rheumatologists and finally found one who I think is going to help me. I also have an orthopedic doctor working with her. I recently had a knee biopsy and am still awaiting the results.

It is believed that I do have an autoimmune disease they are not sure if it is systemic or not, but I know what I live through on a daily basis. I suffer extreme bouts of psychosis to the point where I want to be institutionalized for my own safety. I am not sure if it is the side effects of all the medications or not.

I tried to go without any medications but it was not going to work that way. I slept all the time and when I was awake I was not well, in the physical sense. My symptoms changed in the beginning but now they are the same for the most part.

I do have Raynaud's phenomenon. I have had this since I was twelve years old. I was also born with a sub-mucous cleft palate which they did not discover until I was three years old. I have stiffness in all joints; my arms and legs feel heavy; I have trouble walking up and down stairs, my eyes feel heavy all the time and I have a hard time concentrating on anything.

I always have pain in my clavicle and in my right rib near my kidneys. I have pain whenever I eat anything. It does not matter what, I actually get the pain when I drink stuff too. It is kind of in the back of my ribs. I feel constant tightening of my skin especially in my hands and sometimes my feet. I also have a hard time moving my muscles in my cheek and find it hard to smile sometimes (not psychological.)

My skin on my hands gets taut and shiny, my fingertips hurt all the time making it hard for me to work now. I used to be a data entry operator.

I am at a loss, but I try to be positive. Sometimes it is hard because every day is different and I try not to think about it. When it is too hard to deal with I just hide from everyone and rest until it passes.

I know what I have. I am just waiting for the doctors to figure it out. It has been grueling, I won't lie. My mother is the one who goes with me on every appointment I go to.

I try to think of the positive, but if that does not work I look at other things such as crafts to get me through the day.

I hope my story has been helpful to some of you out there and keep a positive mind because someday you will get the answer you are looking for. And sorry I am mentioning god, it is the right to freedom of speech, even though I get mad at him I really do know he is helping me the best way he knows how.

~ Update 06-21-06 ~

I have been taking medicines for this disease, whatever UCTD is, for about the last two and half months and so far I feel that it is not helping. I am taking Plaquenil and have felt rapid changes especially in my hands. It feels like rheumatoid arthritis, plus skin tightening, plus Raynaud's but with no skin color changes except for mild redness and swelling. My hands hurt like hell and my arms are sore, I cannot lift them above my head.

Even doing water aerobics is difficult. I feel like I ran a marathon and it is not doing me a bit of good.

I just started a new antidepressant which has me up at night with nightmares. I am not sure if it is helping me at all.

I just also found out I have iron deficiency anemia. I have not had a redraw but will post an update with the information on that. My platelets were low, not bad, but low enough to cause anemia.

I am scared that I may have to have bone marrow aspiration for confirmation that I do not have cancer. Better safe than sorry.

I am up with nightmares right now. I have a sleep study scheduled for Saturday night and will keep you updated on what happens with that. I hope they can help me resolve this issue.

Thanks for listening. We all have bad days but please do not let this bit of negativity bring you down. It does not help me and it will not help you. Positive thinking is good for the soul.

To Contact the Author
Andi
Email: Barney3813@aol.com
Story edited 03-06-06 JTD
Story posted 04-21-06 SLE
Story edited 04-28-06 SLE
Update edited 06-21-06 JTD
Update posted 07-12-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
LINKS
Depression
Raynaud's
Raynaud's Stories
Difficult Diagnosis
Scleroderma
Sleep Disorders
UCTD
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series !
New Personal Stories
Mila: Morphea Now I am twenty-five years old, and that spot has grown throughout my right leg and on one side of my belly button...
(Español/Spanish) Mila: Morfea Hoy en día tengo 25 años y esa mancha está en toda mi pierna derecha y al lado de mi ombligo...
(Español/Spanish) (Update) Jeins: Esclerodermia Sistemica Difusa y Dermatopolimiositis Ya había escrito mi historia hace 3 años cuando recién estaba pasando por la enfermedad. Para quienes no lo saben tengo esclerodermia y dermatomiositis desde los 19 años.
Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
More New Stories: November 2008
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
Keep on Surfing!
Go to Andrea: Girlfriend with Raynaud's Syndrome
Contact ISN. We are a full-service nonprofit scleroderma charitable foundation.
Email: isn@sclero.org or
Post in Sclero Forums!
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
USA
Toll Free Hotline in U.S.
1-800-564-7099
Direct Line
1-952-831-3091 (U.S.)

Donate in Memory to the nonprofit International Scleroderma Network at sclero.org. We will make a custom donation form and link for you, and send thank you's and acknowledgement cards. We list donors and events in our website and newsletter.

Please help raise awareness of scleroderma and related illnesses by mentioning and linking to the nonprofit International Scleroderma Network at sclero.org in conversations, speeches, web sites, and publications.

(We are also known as the Scleroderma from A to Z web site.)
© Copyright 1998-2009 International Scleroderma Network
All Rights Reserved