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My last visit to the doctor my blood tests shows I tested positive for a minimal form of lupus. I am newly trying to research this condition and it just seems so…bizarre to me that it can come and go, get worse or better, over time and nobody can like…cure it, so to speak.
My doctor says dependant on certain tests and new CT scans I have to take next week (which I shudder to find out what THOSE costs are gonna be) I may be able to go off of blood thinners but remain on asparins my whole life due to the lupus, and this might effect any kind of surgery or pregnancy and such I’d have down the line because stuff needs to be monitored.
This whole mess is totally tearing apart a lot of things I want to do with my life and vowed not to do…like stay on drugs or pop pills all the time. I am young and I want to feel young…not 80 years old already and having to buy a pill box with every day of the week on it so I remember to take them! Yet here I am, 26 years old and having to consider the most outrageous (in my mind) things like tight leg wraps to prevent clotting in the legs, or having to stay on blood thinners and get weekly blood tests…or more ultrasounds and CT scans every year. It’s crazy and expensive and now all the dreams I had of taking vacations and going places with my hubby and like…flying out the window because of medical reasons.
Maybe I’m over-reacting, but I swear the more I think about it aresearch things, the more anxiety I have. And even though my husband is a mechanical engineer with a job that pays pretty darn well, we’re living off Ramen, Aldi food, and have been continuing to cut back on spending and not go out to eat as much or just do anything involving money. My poor husband can’t even pick up a hobby for himself and all the mdeical bills I took on from the hospital have caused us to probably not go on our first anniversary vacation.
How do people take vacations every year? I just don’t know. How do they raise kids when they live paycheck to paycheck…I just don’t know, man.
At least though, we have no debt.
Dang girl. Im sorry. No, I dont have it, and I have only known one person who did, but hers was advanced. I really hope you are not feeling down on yourself. Its not something you can help and Im sure hubby knows that. 🙁
I’m really sorry to hear that, Water. I do know one person who has lupus, and what she described sounds very much like what you mentioned about how it comes and goes. But she seems to be able to manage the condition pretty well — she works full time as a microbiologist and also joins us for camping, rafting, etc. But I’m sure there are a lot of difficulties that she keeps to herself.
Like Ski said, its not your fault. Hang in there!
I know a few people with lupus, I think someone on the forum does to? I’m sorry to hear you have it. I realy don’t know much about it. The people I know seem to manage it pretty well.
I am sorry to hear that water. I don’t have it or know of anyone who has it. I do know that my bf is kinda going thru the same thing. He has diabetes and he is 37. The doctor told him that when you have diabetes, you body acts like it is 60. He also hates made a comment that the pill box and taking all of the drugs plus injecting insulin makes him think he is a junkie on drugs. Even tho he has to take the insulin and pills so his condition doesn’t get worse. I knew a couple of young children who had pill boxes because they had ADHD (hope that is the correct one) so they could remember. It is definately not your fault and things happen to us for a reason, I beleive. It will probably get better next year for you so you can celebrate your anniversaries. Chin up and let us know how things are going.
I don’t really even know how to respond to that….I know what you’re going through physicaly, what with my back injury, but since it was military I have the VA to cover medical……
I’m really sorry that you’re going through all this, and can only hope that you reach a stable livable position with these issues…..
Louis and I wish you the best, and send you warm fuzzies and healing energies! Love you!
I don’t have Lupus, but Lyme disease. I’m in much the same boat, where it comes and goes and as of yet isn’t cure=able, it just stays in my blood. My bones and joints feel like I’m 50, not 25.
Best wishes!
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My art: featherdust.comI’ve not heard of it but one of my old texts says it is “an autoimmune disease where the body’s immune system attacks it’s own tissues” and that there are two kinds, DLE and SLE, SLE being the hardest of the two. I was hoping to find something helpful but all my book gave was a very general description. All of us wish we could help so let us know if there’s anything we can do. I’d mail you a cake but it would get squished when I put it in the envelope. Take care and keep us posted.
My naturopath had lupus – past tense. That why she became a naturopath in the first place. She was diagnosed with it at 14. She eventually underwent a very strict naturopathic treatment. She had her second child 2 years ago (with lupus, no children). I don’t think her case is a typical one, though.
However, between traditional and alternative medicine, there’s hope. See if there’s any support groups in your area. I’m also a strong believer in the fact that our minds affect our bodies. Whatever you do, no matter how hard it seems at the moment, stay positive! Let us know.
Big hugs!
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http://www.sarahjestin.com/feedbacklists.htmI’m sorry to hear about the diagnosis. Just don’t let the anxiety overtake you. It may seem over whelming now, but you will find a way to make it work. Trust yourself. Always know that we are here for you. I would also second the comment about seeing a naturalpath doctor. It’s good to know all the options available to you.
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