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In Loving Memory of Janet Paulmenn

ISN Artist
(Retired) ISN Sclero eNewsletter Manager

Since my kidney transplant, I have so much energy now that I want to give back to the International Scleroderma Network. I don't know what I would have done without the support of ISN Sclero Forums and all of you in understanding this disease.

Janet Paulmenn photo, reprinted With permission of Star News GroupI received a BFA and an MAT in Art and was an Elementary Art Specialist for 27 years. I was active in my profession and received many awards for both my teaching and my art. My student's work was recognized for awards at the local, national, and international levels. My personal artistic interests were painting, clay, and jewelry making.

I started feeling sick in February 2004. I would awaken in the middle of the night with my hands tingling and in pain. I thought it was carpal tunnel syndrome. Then my hands and feet began swelling and my hands became very sensitive and my skin became hard. I had no energy. I tried to treat it homeopathically with no success.

One day my school nurse told me she was very worried about me, that whatever was wrong could be something serious. I went to a neurologist who ruled out MS. I was typing in my symptoms on the internet and scleroderma kept on coming up. I was familiar with it because my mother-in-law had been diagnosed with it several years earlier. I read the ANA test was used to diagnose scleroderma and she was going to run blood work so I requested that test. It came back positive, speckled pattern. She referred me to a rheumatologist who, very crestfallenly, said I had scleroderma and referred me to a specialist in the field.

By September I was very ill; I even told my husband that I felt like I was dying. My rheumatologist called and said he did not like my recent blood work for kidney function and had my scleroderma specialist admit me to her hospital. The next morning I was brought down for a CT scan and couldn't even get on the table. I got back on the stretcher and felt my throat closing up. I said, "I can't breathe," and the techs said, "You're talking so you are breathing," and I said, "No, I am dying." The last thing I remember was hearing plastic being ripped open. I stopped breathing and my heart stopped.

I was unconscious for three days, coming to intubated and in intensive care. My kidneys had failed and I was on dialysis. I was in intensive care a week and in the hospital another week. I was home a week when things went wrong and I was admitted to a local hospital where I spent most of October. I retired on disability in 2005 due to diffuse scleroderma and renal (kidney) failure. I was on hemodialysis for five and a half years before having a kidney transplant on March 11, 2010. I have interstitial lung disease (ILD), heartburn (GERD), gastrointestinal problems, Raynaud's, calcinosis, and pulmonary hypertension.

My skin score started out at 45 but over the years has gone down to 5. The transplant has made all the difference in the world and I am very grateful to my donor and his family. I still deal with scleroderma and the new issues of a transplant which includes constant blood work and many medications to prevent rejection but the improvement in my quality of life is immeasurable.

I want to give back to the International Scleroderma Network. I don't know what I would have done without the support of ISN Sclero Forums and all of you in understanding this disease.

I tried my hand as the ISN Sclero eNewsletter Manager, an eye opening experience into the tremendous amount of information on this website, the dedication of the many volunteers who make it all possible, and "the dreaded" HTML code that creates these pages. It really wasn't my niche but I believe I have found a volunteer position that suits me better as I am now an artist for ISN. I hope my creativity will contribute to this wonderful website containing the most up to date information on scleroderma in the world!

~ Update ~

Janet passed away on Monday, August 22, 2016, after a long and valiant battle with scleroderma. We all dearly miss her at the ISN and in our Sclero Forums, where she was known as Miocean.

Related Pages

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The International Scleroderma Network thanks Janet Paulmenn for her donation to tackle scleroderma research, support, education and awareness! (Also see Sclero Shop/Donate and Janet Paulmenn) Posted 12/10/2015.

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The International Scleroderma Network thanks Shelley Ensz, Janet Paulmenn, and Sid and Sandy Strong, for their generous donations to tackle scleroderma in loving memory of Shelley's son, Nolan LaTourelle, who passed away suddenly on November 10th. Nolan was a co-founder of the ISN and is dearly missed by all. Posted 12/02/2014.

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Thanks to the following people for their donation in loving memory of Gene Ensz, who enthusiastically served as Co-Founder and Vice President of the nonprofit International Scleroderma Network since our inception in 2002: Amanda Thorpe, Shelley Ensz, Janet Paulmenn, and Margaret Roof. Posted 04/11/2014. (Also see Gene Ensz)

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Go to Piche, Susanne
 
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