Learning to cope w/all my medical issues

Welcome! Welcome! Being part of a community can have such a positive influence on your life. It can provide not only a caring social connection, but also a wealth of information your healthcare provider may not know or may not share.

In addition to this group, you may wish to join a Facebook or Instagram group for your various conditions/diseases. If you can’t find one for your disease because it is so rare, check resources in that particular area of medicine (for example, the endocrinology society).

I, too, have half a dozen autoimmune diseases, a couple of which are rare. I believe a lot of my immune related issue stem from taking contaminated L-tryptophan in the late 1980’s.

About 1,500 people in the United States were affected by this contaminated L-tryptophan, manufactured by a Japanese company and sold in reputable stores, like Fred Meyer (in my case).

I had just started taking L-tryptophan, a supposedly “safe” sleeping aid, while attending graduate school, as a single mom with two kids. I became ill very quickly and was blessed to have a rheumatologist who told me to quit taking every prescription medication, vitamin and supplement, so they could eliminate each of those as potential causes. At the time, I didn’t take any prescription medications except birth control.

What inadvertently halted the progression of the disease was quitting L-tryptophan, but no one knew that at the time. (However, the damage to my immune system had been done.) It wasn’t until four years later that the mystery was solved. [The story involving the Japanese company, the doctors who figured out the cause, and the number of people affected, was published in Reader’s Digest.]

Prior to that, I had been in excellent health. After that first episode of the disease, I would have flares throughout the years, but it took some time for me to understand them. Then in 2005 I got my second autoimmune disease, and after that, I acquired additional ones more quickly.

I also have symptoms that have no explanation. How about the rest of you? Some may show up for a week and be mild. Another symptom may crop up out of nowhere and send me to the emergency room. I might deal with it off and on for six to nine months. It will baffle my specialists then disappear. Does this sound familiar to any of you?

I also have some symptoms which my specialists believe are autoimmune conditions but which have not yet been identified, so as far as my medical records go, they will use the classification that is the closest match. I’m sure many of you have the same issue or your specialist uses the code for “Other” when there’s nothing else in that category.

I would not be surprised if there are a large number of us whose annual retail cost of medications (regardless of whether we pay any of it or not) far exceeds our annual income. I have my pharmacy prepare a print out for me at the end of every year with all my medications. Included in that is the retail cost (what insurance saved me). For the past few years it has been equal to about, twice my Social Security Income. I am so grateful for my insurance.

Speaking of grateful, I strongly believe the daily practice of gratitude changes my outlook on my life. We may not be able to choose our circumstances, but we can choose how we respond. I have a strong faith in God and He has taken care of me throughout this journey. He has stayed close beside me and strengthened me each day. There are times when I am taking it hour by hour with him. There are those of you who will know what I mean. In addition to being Creator God, He is such a wonderful Friend!

To the one who wrote in: He is there beside you, even if you can’t see Him. Just talk with Him as you would a friend. I will ask Him to comfort you and and give you His supernatural joy like He has done for me.

Take care, my friend and fellow walker on this path. May I encourage you today. Keep your eyes lifted up. Express your gratitude. Reach out to trustworthy family and friends. Feel free to contact me. Share your joy with someone who is feeling discouraged today.

Giselle

So glad to have you in our community! It sounds like you have a lot on your plate, sorry to hear that you are struggling to get through the bad days. I talk about coping with my rare disease in this article: https://raredisease.net/living/coping-when-life-feels-heavy It isn't a perfect plan. Obviously it would be easier to not have to deal with these issues at all! But having a community that understands is very helpful. I love that you have so many furry friends to keep you company! I have a service dog that I love and who loves me. She is so smart and well-trained. I can't imagine life without her. Furry friends can make a world of difference for those of us living with rare diseases! Warmly, Tatiana (raredisease.net Team Member)

Welcome to the site! We have some amazing people here. Feel free to reach out to me if you'd like. Living with a chronic illness is hard, let alone multiple. Dogs or pets are so helpful. We feel less alone. My dog is laying right next to me as I get some work done.

That is so much you’re dealing with and understandably challenging, especially on harder days.
I’ve found reaching out to others who I feel safe with to be a great help during harder times as well as participating in weekly mental health counseling and even support groups at times, whether in person or online. In therapy I learn coping tools, a lot of them are cognitive behavioral to combat bothersome thoughts and change behavior that feeds my depression, that I can use in addition to receiving emotional support from my safe people. This combination works the best for me.