Only been 2 days... trying to figure it all out

[wildgirl1979]

Hey all- So happy I found this forum. :smile tee So many questions and wondering... However on the plus side, I am excited that I finally have an answer to something, and this part of my inflammation makes sense.

Little background. My body is chronically inflamed. When it gets inflamed it comes out with a rampage. :evilsmile One of my diagnosed and currently treated diseases is called SLK (superior Limbic Kerostisis) of my eyes. Basically my body gets mad, and attacks my corneas thinking they are a foreign body. I am allergic to most medications and have awful reactions, so surgery usually is all that is left.

Fast forward to the last 2 weeks. Got a awful UTI about 3 weeks ago, I get them all the time.. *so I thought* whatever.. went on Cipro, since I am allergic to everything, and it didn’t work. Went on Macrodenta (spelling) and still didn’t work. In the meanwhile I sent to a rheumatory arthritis doctor, as it is thought now that I have Systematic Lupus, and I am currently awaiting results. He sent me to a Urologist, and BAM she knew right away.

I am still new to all this, and trying to figure it out. I cut out caffeine, and yesterday was AWFUL!!! I had the worst headache and felt awful. See I am a tax accountant, and I drink A LOT of caffeine, so I imagine I was having some pretty strong withdrawals.. Feel little better today... Trying no caffeine and no cranberry for a week, doctor thinks I will feel better. I hope so... it hurts!

Hard, I am new to all this and this world. Cutting out foods/beverages is nothing new to me. I cut out potatoes, tomatoes, wheat, sugar and dairy about 1 year ago... I am struggling with cutting out fruits now.. Also I just want the inflammation to go away.. Been 2+ weeks of er, relations with my hubbie and it SUCKS!!! I don't know the "fine line" to walk on this, and I am trying to figure it all out.

Ah so much to say.. but that is the jist of it. Just trying to get a grip/hang on this whole thing. I am still waiting results for Lupus (should be end of April) and I see an allergy doctor middle of April. Currently most signs point to Systematic Lupus, and getting diganosed with IC adds to the puzzle pieces, and hopefully I am along the way to getting my puzzle put together.. It's been a long 10+ years and I exhausted.. :confused:

[ICNDonna]

In my signature is a link to a diet list. It's very easy to read and printable. It should help you with your shopping and meal preparation.

I have a friend with lupus and she does very well --- if it turns out that you do have this diagnosis, it's much more controllable than it was even twenty years ago.

I'm glad you found us --- be sure to let us know if you have questions. My IC was diagnosed in 1975 and, like most people with IC, I feel good most of the time.

Warm welcoming hugs,
Donna

P.S. If you ever come to Eugene, we could meet for "no coffee." :)

[wildgirl1979]

Thank you. Your links were very helpful. It seems I have been doing some things to "limp" along through this, prior to being diganosed, and now I know, I just have to find out what works. Thankfully my husband is ubber supportive and always has been of my health stuff. I all most hope the Lupus results come back postive, because than I will have an answer, and working on keeping disease at flare. SO exhausted from no answers. Also hoping allergy doctor might find something I wasnt aware of in my environment. Big puzzle trying to piece it together.

Any suggestions for constipation? Its been awful since i quit caffeine, and softners don't work...

Thank you for your support. I would love "no coffee" sometime ;-) I am a Beaver, so I come to Eugene every once awhile when Beavers play in Eugene

[Lesleyjoy]

Yes, I've been tested for Lupus but it came back negative! You can still have it though and be sero-negative. I believe that's what I've had all along, I also have the sicca sytems classic of Sjogren Syndrome (a cousin to Lupus) but I'm also negative when tested for this, so also sero-negative!!

I've had so many weird things happen to my body systems, over the years!! I'm seeing my rhumatologist in May for some more tests, esp after this IC diagnosis...

Take care,
lesley (New Zealand)

[wildgirl1979]

It was thought at one point, I have Sjogren's as well, and I was tested about 1+ years ago.. With all my SLK and eye inflammation eye problems. But I kept telling the doctors when they asked "Are you sureeeee you dont have dry mouth?".. Yep pretty sure.. RA doctor that ran Lupus complete blood work tested me for that as well.

Side note. I had this spider bite once on my breast area about 4 years ago, yea my body freaked out, and the infection went internal. I had to have it removed and have a drain pipe right in my nerves for 1+ plus.. HOLY pain. I was unresponsive to antibotics, which I usually am, so it was surgery. Anyone else out there have infection and unresponsive to medications? My body just gets SO mad when I put meds in it...

[Lesleyjoy]

Yep we can get these weird infections, I can get these tiny hair folicles on my breast which can become inflamed ans sore then I have to take a short cousre of antibiotics!! Of course it can be years befopre it happens again!!

I've had weird stuff going on in my body since I was in my 20's and I'm 53 now...I fit though but this IC has slowed me down, I had an attack of this 15 years ago, terrible pain...was given Dittrpan and it cleared up and all good till now!!

15 years ago, I had no clue what it was and as it went away I never followed it up, so it was obviously IC then...just diagnosed moderately severe 3 weeks ago!!!

Do let us me know the outcome of your tests :)

Cheers, Lesley x