Comments on: Invisible Illnesses

By: Kathy

Kathy — Sun, 09 Nov 2008 16:02:00 +0000

I have had lupus for 26 years now, and I must say that the first 20 or so were really pretty minor in the lupus world…but I’m quickly catching up !!! I was recectly diagnosed with a real winner of a complication called Pure Red Cell Aplasia. It is a bone marrow failure issue where I make no RBC’s and am getting ready for my 4th set of blood transusions in 1 year. High doses of Prednisone had worked until last month, now that isn’t working either. They are talking of possible IVIG treatment. I also have Ventricular Tachycardia, aortic valve insufficiency, lung damage from SLE (sleep with oxygen), antiphospholipid antibody syndrome, chronic kidney stones, hypothyroidism, and best of all is the inability to get any medical insurance !!! I’m in the process of a 3rd attempt at Social Security Disability, which I will then at least to be able to get medicare after 2 years.
I would have to agree with most of the people and say that for the most part, SLE is an invisable disease. I can’t tell you over the years how many times I’ve heard “but you don’t look sick”. Well, that can be so frustrating…let me tell you. Since the high doses of Pred for the last year, I now have the ol “moon face” on top of my overweight body, I’m sure people who do not recognize the moon face just think that I’m getting fatter and fatter (which I really am). Well, enough of the feel sorry for myself crap….I really was blessed to have put off all of these problems for so long. Thanks for the chance to vent.

By: Mari Anna

Mari Anna — Tue, 28 Oct 2008 15:09:51 +0000

I voted for “Nobody would guess that I have an illness.” That is true about 90% of the time. The only time it isn’t true is when I have a butterfly (although almost no one outside of the lupus world knows what that is anyway), or when I am hobbling from terrible pain, or when I am so bad that I have to use my cane. I have a handicap parking permit and I still wonder what other people are thinking when they see me get out of my car….are they thinking that I’m a faker and there’s nothing wrong with me? I have to remind myself that I have the permit for a reason and that my doctors and I know what’s going on.

By: Jeff

Jeff — Sun, 26 Oct 2008 23:39:20 +0000

Squeaky: Thanks for voting, and I’m glad you found the blog. The lesions do look a little like that, but they’re not just at the tips of her fingers.

By: squeaky

squeaky — Fri, 24 Oct 2008 16:02:01 +0000

I actually voted for : Nobody would guess that I have an illness. Then for the first time I’ve butterflied this week and its not horrible but certainly miserable also about the dry hands, do the lesions look like water bubbles at the tip of her fingers? Glad I found your blog its been most interesting. I hope you have a good weekend.