Patient & Caregiver Stories Main Menu

(English) 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

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Robin E: Scleroderma and Lupus

I do not know if I can describe what I am going through, because it changes each week, if not each day.

Apricot Flower for Robin by Sherrill Knaggs, ISN Artist I do not know if I can describe what I am going through because it changes each week, if not each day.

It started with swelling and pain of my feet, hands, and legs that I thought was arthritis. I have had fatigue so bad that I never thought I would make it through the day. Now my hands and fingers are so raw and sore, I hope someone will please tell me what to do about them. I have to use them every day with my work. I put lotions on them and antibiotic ointments and try to sleep in gloves at times. I have nothing but ulcers and it is like all the skin is peeling off my fingers, making them raw.

This is my worst problem right now, even though I know it will change tomorrow or next week, but this is so painful I need suggestions now for this. I have been told I have scleroderma by a specialist, but I have no idea what type yet because more tests are being run on me. But when I went to him this last time he told me one of the test showed lupus, too.

This has been going on since January of 2002, and everything seems to be coming on fast. I am almost forty-two and I have been healthy almost my entire life. Please let me hear from you.

~ Update 09-27-04 ~

Voices of Scleroderma Volume 2 Webmaster's Note: Robin's story is in the ISN's Voices of Scleroderma Volume 2 book, on page 248.

Thank you so much for the book! I had totally forgotten that I had submitted a story until I received the book. Anyway I just wanted to update you on my condition.

I was finally diagnosed with systemic scleroderma not too long after I first posted my story. I also have CREST. It has already affected my esophagus and I have acid reflux something awful. Sometimes I can take a swallow of something and I just about get strangled on it. Also at times after I eat I feel like I need to clear my throat I get strangled or either sometimes I start coughing like there is no tomorrow and all my food comes back up.

My hands finally cleared up (thank goodness), but I keep getting pits on the ends of my fingers. Right now I have one on the end of my right index finger that will not heal. It has been there for three months now. The pain with it gets so bad at times it takes my breath away. I hope they do not have to amputate. I am on prednisone for the swelling, which caused cataracts in both of my eyes and I had to have implants put in both of my eyes. I am on four types of blood pressure medications. It took a while to get my blood pressure under control. I have already been on methotrexate and in November they are suppose to start me on cyclosporine.

Back in March they almost lost me. I had been nauseated for about a week and could not keep anything down. I did not take my medications like I should have because I felt like I was wasting money I did not have because they were coming back up every time I got sick. Anyway, I woke up one morning feeling weak and weak eyed getting ready for work. I thought I was just dehydrated. I left home and as I pulled out onto the road I realized that I was almost blind! I had to pull over. I could only see out the sides of my eyes. I could not see straight ahead. I thought I had messed up my implants with all the dry vomiting I had been doing.

I went to my eye doctor and he could not find anything wrong so he sent me to the emergency room. They took all my vitals and sent me straight back and started giving me nitroglycerin pills. My blood pressure was sky high. It was 200 over 148. I stayed in the intensive care unit for two days.It was touch and go and my family never left my side. They did an MRI and found swelling on my brain but they found no major damage, thank goodness.

I do have slight memory loss. I was in the hospital a total of seven days. I have never been in a hospital ever except for giving birth to my two wonderful daughters. And this was the first time I had ever missed any work in about fifteen years.

I have my good days and a lot of bad days but the good has outweighed the bad until lately. It is getting very hard for me to get up in the mornings and some days I feel as though I cannot walk another step. My whole body is so tender I cannot stand for anyone to even touch me. My lips have gotten so much smaller. It really bothers me at times because I deal with the public every day.

I have checked into disability, but they told me as long as I am working I will not be eligible. I have to work to be able to pay my bills and get my medications. What is a person to do? I have to work to survive day to day. My family helps all they can but they have bills and families too. I have already had to cut down my work week. I just do not know how much longer I can hold on and continue.

I just want to thank you for all that you do. Keep up the good work. I will try to remember to keep you informed about my condition without being so long winded next time.

To Contact the Author

Robin E.
New email address needed 08-06-09 SLE
Old Email Prefix: robinssnacks
Story posted 4-26-02
Story edited 7-9-03
Story photo added 7-9-03
Story update edited 09-27-04 JTD
Story update posted 09-28-04 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Acid Reflux
CREST Scleroderma
Difficult Diagnosis
Raynaud's Stories
Types of Scleroderma
Voices of Scleroderma Volume 2 book

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill 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

Photo of JudithJudith 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!

Go to Robin H: End-Stage Renal Disease (ESRD)/Transplant Recipient

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected]. Disclaimer. Privacy Policy.