I’d like to introduce myself and my husband to all of you.
We’re Jerry & Carolyn Glein and we’ve been actively dealing with Systemic Lupus Erythematosus and everything that goes along with it, including Fibromyalgia for the past 20 + years. I personally have lupus & fibro, along with several other things often found when dealing with these chronic illnesses.
Lupus is an autoimmune system, connective tissue type chronic illness that has the potential to end our lives earlier than normal; fibromyalgia is not an autoimmune system illness, often thought to be an illness of the muscles, does no apparent damage to the body, can cause mild to severe pain and can involve the way our brains perceive pain. Both are illnesses with many variables, occurring more often in women than men, and seldom have the same symptoms as another patient with the same illness.
I was firmly diagnosed with lupus in my early 40′s by a rheumatologist who tracing my medical history believes I had it as early as 18, and my lupus may have been triggered by a moderate bout of polio when I was 8 years old. That history included several complicated surgeries over the years, 6 miscarriages, migraines, deep vein thrombosis, blood clots in my lungs, early onset arthritis, TIA’s (minor strokes), to name a few items. It also included misdiagnosis of Rheumatoid Arthritis and Multiple Sclerosis. Like most, it was a relief to finally get a firm diagnosis. My husband & I decided we needed to know as much about lupus as possible to be able to handle it, and live with it as well as possible. My rheumatologist admitted that he had little time in his extremely busy practice to help us with the day to day coping but encouraged us to find places to educated us and people to help support us.
The Lupus Foundation of America was my first stop, who directed me to the nearest local chapter that was then available….we lived on the Oregon coast at the time, and the chapter was in the Bay Area of California. We also contacted another national lupus group at that time (they later merged with LFA), and we found a small local support group that had been meeting in Seaside, OR. The leader of that group happened to be secretary of the church we were attending and we became great friends sharing a similar illness. The support group had been meeting regularly for a couple of years, but usually with only 5 or 6 in attendance, and she was planning to bring it to a close. I asked her to please wait a few months so I could meet them and pull as much information as possible from the members to help us with what we were facing.
Each member of the group was struggling with a different problem with lupus : one had prescription drug induced lupus, another was in kidney failure, one with extreme sensitivities to everything from smell to sounds to sunshine. The one male member suffered from seizures and I had ‘antiphospholipid syndrome ‘ with my lupus. It clotted my blood via the miscarriages, thrombosis, embolisms, hematomas, including a full blown stroke with a clot on the left side of my brain. Some of those had been happening in a mild form from the time I was 18 until I was diagnosed which began all the very severe and dangerous problems (stroke included). Needless to say, I did not want the support group to end, so with Jerry’s help we became the facilitators of the group in 1990.
Many of us dealt with cognitive problems so I started sending out monthly reminder letters to the 15 names who had attended a meeting at one time or another. Doing this, we made contact with everyone including some who couldn’t attend meetings due to the severity of their lupus and others who were still holding down jobs. All wanted to stay in touch for those times when the lupus flared to the extreme. Some would call us just to talk and I decided that when I sent out the monthly reminders I would add an article that I thought was pertinent or would write about something that was discussed at one of the meetings.
I encourage all to check out support groups. They are not for everyone, but they do offer some terrific things. For those who are unable to attend meetings or not interested in going to a support group, I encourage you to find out all the information you can that deals with your particular type of illness whether it be a newsletter, an online group, an up to date (current) book or any medical professional who has time to spend with you.
We are no longer directors of the Northcoast SLE & FM Support Group, but are still doing a quarterly newsletter on lupus, fibromyalgia and anything that may pertain to either. Our work is now called MY Lupus/Fibro Support Group and are still hosting the forum/bulletin board of the same name.
We usually traveled during the summer months when the support group didn’t hold meetings, but later we had a couple of others in the group that would fill in for us as needed. We really enjoyed traveling and, in 2005, we purchased a motor home as we felt it would be more comfortable for us. When we had made it through a 2nd year with no flare ups, we decided it was time to really start living the retirement life that we had dreamed of – being a full time RV traveler. Our home on the Oregon coast sold in May and we had two great gals who had agreed to facilitate the meetings for the Northcoast SLE & FM Support Group.
We were able to sell all of our furniture and household items to one party, we packed up our few collectibles (our large book collection) and put them in storage, jumped into the motor home and have not looked back once. I can now see the light at the end of the tunnel while knowing I may not reach it without once again dealing with active lupus.
I know what it’s like to suffer some of the worst times lupus has to offer while remembering those days before lupus. Today, I’m knowing the days after lupus and the changes it has made for me along the way.
I now have the worst hair…thin, fine and hiding bare spots; a weight gain of 60+ pounds…losing some each year; cognitive problems…some permanently due to the stroke; …and a large thirst for life…let’s go and see and do more !! And I plan to do that as long as I am able to do just that. We are still traveling in our motor home, still doing the newsletter, still adding to our website, still trying to educate and inform others while offering support, but also living our dream. Come check us out at www.lupusfibro.com and find out where we are now….look for “Where’s Jerry & Carolyn ???” on our forum/bulletin board.
We do care……….. J & C
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Carolyn and Jerry are MLWT Advisory Team members who offer a tremendous amount of support, educational information and, especially, inspiration in living their life with lupus firmly in the driver’s seat. They can also be found cruising Twitter under @MYlupus.
If you would like more information about the Northcoast SLE & FM Support Group in the Seaside area, send MLWT an email and we will get more information to you.
