Started by #164428 at 22,Mar,13 05:22
 | I have a lot of real friends here, and I know you care about my well being.
I found out yesterday that I am now seriously ill and quite literally on death's door. Tomorrow, I will find out if I need to be hospitalized to bring down profound inflammation with chemo, steroids, and aggressive diuretics. I can barely breathe, and I've never felt so awful in my life. Many know I have Lyme Borreliosis, but I have Lupus, too, a serious autoimmune disease. I had been diagnosed in 2000 and treated, but the Lyme wasn't diagnosed and treated, and I got worse. Then, I was diagnosed with the Lyme and told the Lupus diagnosis was incorrect, so I was not treated for that as well. And then my gut got wrecked from so many oral antibiotics.... I found out, recently, that I indeed have both, and I seem to have Lupus Nephritis now, and this kidney involvement is terribly dangerous. It will be fun trying to suppress my immune system on account of the Lupus while trying to keep the Lyme from advancing further.... I'm scared, sad, and so frustrated. But I'm gathering my strength and putting all career aspirations on hold. My job now is to get better, and my focus will be on that and building relationships, my faith, and ekeing the joy out of each day. I'll keep you updated. I should know something later today. Love you guys for real.  |
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Please keep me in your thoughts and prayers. I love you. You are such wonderful friends! Thank you for your caring concern, support, and love. It means the world to me.
all my love from Italy
Love!
I may have Parkinson's Disease, too, believe it or not. It runs in my family. I have bad hand tremors now. So the very serious Scleroderma, then Lupus, then RA. And then this! The stress really gets to me, especially with a mom who has dementia.
My faith and my friends really help me get through. Love you!!!
many kisses
A short update: One autoimmune disease just wasn't enough for me!
I have Scleroderma AND Lupus AND Rheumatoid Arthritis. Maybe Lyme and possibly a weird allergic kind of disease, Mast Cell Activation Disorder.
The Scleroderma is really scary because, unlike the other connective tissue diseases, it doesn't just involve the body attacking itself; it leaves scars. It turns the body into scar tissue, basically: the skin and internal organs. It's very serious, and while I've found moments of grace in my day through my faith and the love of folk like you, I'm still pretty frightened. One day at a time, right?
I may have to walk away from my house as it won't sell, and move to a small, unsafe apartment near NYC. I may need to be at the hospital a lot for treatments and other events like support group meetings and seminars....sigh.
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Right now, I'm only on supportive measures: a **** used to reduce symptoms and a steroid (as of tomorrow). Low doses just to give some help while I wait for more test results. If I don't feel better from this, I will take Cellcept, a chemo **** that can help some with Scleroderma. It can cause cancer and very serious infections. My immune system will be very suppressed....I may get IVIG injections, immunoglobulin, which is an immune substance....then, there will be treatments for individual problems, like my messed up esophagus.
I wish you all the best as do many people here! Take care!
Hang in there girl! (yes folks, I'm queer and Steffi knows me, so I'm allowed to talk like that!)
All the best from the Netherlands!
Thank you SO much for your continued thoughts and prayers. I love you.
I'll say more soon, but right now, it's 3 a.m., I need a shower, and I hope to ****.
But know that your friendship means so much to me, and you have lifted my spirits.
The good news is that my kidney disease is in an early stage at this point. Still problematic, but early. I hope I can keep it from progressing once I can get treatment again. I hope I can stomach the drugs, plus the Lyme ones which I would need, too. If my immune system is suppressed, the Lyme and Babesia (malaria-like infection) could kill me.
Anyway, I hope to see my old doc, who is now practicing in New York City, soon. I am very, very sick.
Lots of love, friendship, and all good things to you special folk.
I see the doctor on Monday. I'm afraid. I seem to have systemic Scleroderma. It's a very serious disease.
It helps knowing I have friends here who care about me and are praying for me and/or sending healing thoughts.
xaxier1
But I will write that to you in a PM.
Take care! XXX Ronald
I'm constantly thinking about you, have faith, you will pass this hard times!
God Bless You Miss Steffi
@}-;-'----
I am so sorry that you have two conflicting diseases. Neither of which I would wish on my enemy. I hope that there is a medical miracle waiting.
Be well,