View Full Version : Newbie

10-04-2005, 07:02 AM
Hi, I'm Cinnamon.

New to this forum. I've had SLE probably since birth. I was diagnosed as "allergic to the sun" as a child. Went into a remission then had problems again after the birth of my first child. Took 10 years and I finally have a correct diagnosis.

I don't like my rheumy. He's arrogant and has a terrible manner but rheumys specializing in Lupus are hard to find here.

I work full time and have FMLA for sick days. My employer is giving me a very difficult time about it.

My DH gets frustrated that I'm 'sick and tired all the time.'

I'm "morbidly obese" (that term cracks me up) and that doesn't help matters. My doctors recommend WLS but I'm not willing to take the risks.

Can't wait to meet everyone and finally get some much-needed support.

10-04-2005, 11:42 AM
Hi Cinammon, welcome aboard. Sorry you have to be here tho. {{HUG}}
I hear ya on the rheumys, we only have ONE in our town and I refuse to use him so mine is actually in GA. (I'm in FL).
Sorry to hear your dh is not dealing well with it either. Have you guys tried counseling? Mine wasn't dealing with it at all, preferring to ignore it instead. I finally got us into counseling and he told dh he might as well face it cause it ain't going no where. He specifically told him to look it up and get informed, and that a support group wouldn't hurt him. Not sure if he's looked it up (this was two weeks ago for our first appt.) but he is a lot more understanding and less resentful of it, and therefore of me. It's not easy having it and I'm sure it's not easy on them living with us having it but what can you do? I even asked dh if he wanted out cause he had flat given up on me. I didn't want to be with someone who didn't believe in me ya know? It's made a big difference, slowly. Hopefully your dh will come around too, but it might help for him to research it himself and talk to others who have it or live with someone who does (my dh has a co-worker whose wife has it so he's using him for a sounding board). {{{HUG}}} Support is a big thing for us and I hope you get some soon from your family.
It took me seven years to be diagnosed (finally last week I got the diagnosis) and it was the hardest thing ever. To have to fight for a diagnsos like that, when you KNOW that's what it is. I'd like to line up all the people who said it's in your head, or I don't know what it is, or even my mil for saying she thought I was a hypochondriac. GRRRRR Finally got diagnosed so should be starting treatment soon. Have you started treatment?
{{{HUG}}} Welcome to our family.

10-04-2005, 04:12 PM
Hugs to both of you!

I'm one of the lucky. My primary LISTENS, and he figured out my probable diagnosis pretty quickly. He sent me to one rheumy who was a b***** and who I refused to see again. The second one I went to was a LONG drive, but good. Now I'm going to one who's pretty local and pretty good.

Do what you can to find a rheumy who you can talk to, who won't ignore you and whho you are comfortable with. It can make a world of difference.

Cinnamon, the FMLA is a great help. What will also help is educating your HR department on lupus. You're probably getting a hard time because your boss and your HR department don't understand autoimmune conditions. If you can give them some information it might make a difference. Go to lupus.org or webMD. If there's someone at your work who has MS, explain that there are similar fatigue issues - more people have heard of MS. Knowledge is the beginning of understanding - AND of having your need for rest better understood.

10-04-2005, 05:41 PM
Welcome cinnamon, you came to a good place for support. I think most of us have had to deal with at least one terrible doctor, if not more. I'm struggling with the work issue and often wonder how long I'll be able to continue working. Are your symptoms pretty bad now?

I like the idea of counseling or a support group for you and your DH. My dh and I go for counseling about once a month to talk and try to adjust to how much our lives have changed since I have gotten sick. Take care and I am glad you are here.

10-05-2005, 06:44 PM
Welcome Cinnamon,

I'm new here too. Was actually just given the diagnosis about 2 weeks ago after 6-7 years of symptoms and various other diagnoses. My husband hasn't been the most understanding in those years preferring instead to deny and ignore it, and make light of it by calling my symptoms chronic slacker's disease. He doesn't deal well with illness, we just went through some major stuff with his dad being sick and he just about self-destructed. Then just after we got through that, I got diagnosed. It was an awful week that followed. The day after diagnosis I came down with a cold, had a bit of a flare, dealt with headaches for a week and a husband who wasn't talking to me. We ended up having a major blow-out and I aired a lot of things I'd been holding in for years. He must have realized that this was a real thing and wasn't going away because things have gotten better.

Now, I wouldn't recommend this method, but so far it has worked for us.

Good luck!

:D Kathy

10-10-2005, 08:18 AM
As for my DH, he (like all my doctors) thinks that everything will just 'get better' if I lose weight. Yeah, I know it's not helping and I'd just go lose weight if it was that simple. I know I'm obese and it doesn't help Lupus symptoms but I get tired of being reminded of it constantly. They act like there will be peace in the Middle East if ONLY I'D LOSE WEIGHT. My OB and rheumy suggest WLS. I'm not willing to risk orphaning my kids because others don't like looking at me. My bp is great, cholesterol is great, sugar is great. I don't want to risk my life with unnecessary surgery at age 37.

I'm leaving copies of Lupus Now in the bathroom. I figure DH will eventually read it! I'm trying to understand his frustration and I can't. It must get annoying having a tired and sick spouse all the time (he's said as much), but I can't help it. I try hard to hide it when I'm not well.

We're also a blended family and we're dealing w/ so much right now. I appreciate the support and I look forward to getting to know everyone.