Across the Pond

I got Lupus at age 19 (1987)while in Service for the Army. It was never identified until recently, but my first indications was mouth blisters, blood platelet and lymphocytes issues. The Army in all their wisdom said it was Hemophilia, but this has been disproven. My ANA up and down and over the years suffered hot flashes, swollen hands and feet, red dots on skin called Angiomas? I have had times when I thought I had Flue, but the only symptom was the temperature. I have had kidney problems for years, starting same time as Lupus in 1987. I never really had a rash, but I also have colitis as someone else wrote, But after 30 years just getting to proof stage as I believed I had Hemophilia for years thanks to Army. I got my Lupus from a chemical called Trichloroethylene, it was a waste product used on the bases for dry cleaning and is a degreaser. It is also used in small arms cleaning and repairs and I was an armorer for the Army for about 18 months. I also have what they are calling osteoarthritis, but with some research I found that EPA uses Calcium to clean up Trichloroethylene spills, so makes sense it plays havoc on the Calcium in your body also. I started have injuries to the spine that may not have been issue if not weakened by the Chemical. I worked when out of service as a hospital Maintenance man for 30+ years, and my wife and I was doing OK, we had built up our assets and others had left us some small money, but when I got to sick to work, we watched all that go away during the recession, and we ended up on food stamps and welfare. The Social Security and VA was slow to help, and I am still waiting. When all said and done they will help, but being a Man and having a rare for Men disease has cost me every dime I made when healthy enough to work. I had to research and find my own condition as I met resistant's at every corner, people wondering why I was not working etc.... When I was healthy I could work with anyone. So my condition has been with me 30 years, but the Doctors are just catching up. VA did not even know about the Trichloroethylene, and I did hear one person mention models? Probably to late but Paints, and paint thinners have Trichloroethylene in them. But first conditions I encountered was the mouth sores, blood platelets low and Lymps, and Kidney infections. I Just left the emergency room with the Colitis diagnoses. Don't let the family around Trichloroethylene. The only thing I have in Common with UK is distant relatives in UK and Ireland.

[Barnclown]

Hello TCoffey & welcome!

Am v glad you found us. This is a remarkably good forum....there are several guys here, + people from all around the world. The solidarity, info sharing and fun is The Best....I haven't found a lupus forum that comes close to this one. And Lupus UK itself is a wonderful organisation

Your story is very hard to read about, let alone live through. You've survived & achieved a great deal. I think you deserve & Mega Pats on the back...and, if you don't mind, I'm giving you a big virtual hug too 😉

Quite a few of us here have early onset lupus (mine is infant onset, was diagnosed around 1954 in the States...but due to my mother's secrecy, no one told me (i just thought I was "sickly"). So when I moved to the uk at 21, the health system here inherited me unaware of the SLE underlying my lifetime of multisystem illness & emergencies. Finally, 6 years ago, my lupus was figured out...am doing much better now on daily oral combined therapy meds (feeling more stamina + resilience + comprehension & less pain than I have since my early 20s)).

We think I was tipped over into lupus mainly due to 5 months of daily inutero exposure to the notorious endocrine disrupting artificial oestrogen DES (diethylstilboesterol). So I'm tending to identify with some aspects of your immune dysfunction & connective tissue disorder experiences 😏

Take care buddy...am looking forward to you being here on forum

🍀🍀🍀🍀 coco

[Nickymck]

Hi Tcoffey

I commend your bravery and resilience. You have had a hard time. Thus is a great forum with vet supportive members. I have mild SLE, interactive thyroid and recently diagnosed with Osteoarthritis in my knees. But I am in awe of some if the people on here, coping with their illness. Good luck.

[johare]

Hi and a big welcome to the site. It is hard to hear stories like yours, but you will receive support from others here who have their own stories and are finding a way through.

[jewel8888]

You have been thru so much with health issues and you deserve the best medical treatment with your time in the service. I have severe psoriatic arthritis and tried Humira , throwing me into Lupus with bladder infections, rash on going. I worked for the Lupus fdn here in USA and know they are pleading for advances in research funding to help with our suffering. Everyone in this group is so supportive and caring. My best wishes for everyone. Julie

[MEW53]

TCoffey,

Thanks for following me, I thought this post was very interesting especially as you mention being exposed to Trichloroethylene, you obviously noticed that I was exposed to perchlotathylene in another post. I was doing a Saturday job in a dry cleaners.

I had forgotten that they moved onto trichloroethylene.

Although I don’t have Lupus, there are a lot of similarities with Scleroderma and Myositis..

Keep smiling😀

[Hidden in reply to MEW53]

TCE is the key for most of us and Autoimmune conditions.

[Hidden in reply to MEW53]

I have scleroloderma and other conditions