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Gisèle
03-21-2008, 09:08 PM
Hi fellow lupies!

Since I am still a fairly new member, I am not sure if many of you remember me, but it has been a few months since I have posted, and I just thought I would check in and give a quick update.

Well, the past few months have been very busy for me(hence, little freetime.) But now I am on springbreak, so only two teachers are coming by next week, so I have about 5 days in a row where I can sleep and relax, finally!! I am still on the homebound schooling program(I have all of my teachers come by once a week(5 sometimes 6 days in a row), and they give me tests and a week's worth of assignments to complete. I've been on it since October(when my symptoms began to appear big time), and just a couple week ago, my rheumatologist told me that it's best I finish these last two months on homebound, and then go back senior year(I'm in high school) to get more stable and keep everything okay and under control. But it's been very busy, sometimes hard to keep caught up, but I am managing(only two more months!) With teachers coming over most days of the week, and then sometimes I have early morning doctor appontments, I get behind on sleep. I've had times where I wouldn't get enough sleep, then feel awful(mini-flare ups?) for a few days, then I would have to go up a one or two millligrams on prednisone to get out of it. But currently, I am down to three mg. :)

The plaquenil I started back in December is working GREAT!! Truly a miracle drug for me! My symptoms have decreased dramatically(joint pain much better, less times feel like I have the flu, etc.) I feel very thankful and blessed that something has worked. Sleep deprivation and stress are two things, though, that still give me problems, but I guess that's how it works, so I have to just be careful to avoid both. I still haven't received an official diagnosis of lupus, yet(not to my knowledge anyways), but my rheumatologist at each appointment keeps saying the word lupus and referring to anything new or any questions that I have with an explanation that involves lupus, and since the plaquenil has given me a complete 180 with my symptoms, I guess it's either RA, malaria, or lupus, and I don't have RA or malaria.

I did have a rash back in December all over my abdomen, and it appeared during a flare-up, and I went to a derm, and it turned out to be pityriasis rosea(common viral rash, once you have it once, you don't get it ever again), thank goodness! But for the past couple months, I have been getting these small-disc shaped lesions near or on my joints. They aren't in clusters or anything, just one isolated one appears each time. They are red and a bit raised at first, then the center gets very white and scaly, then it goes to pink, then, the part that worries me, it leaves a mark/darker spot behind on my skin that doesn't seem to clear up. My rheumatologist says he doesn't think it's lupus-related, but he said once another appears to go get a biopsy, but so far, another hasn't appeared yet, thankfully. Does that rash sound familiar to anyone? My rheumy wasn't sure, he said all of these rashes look so similar, and I've googled/researched it, and there are way too many conditions that come up.

One problem I have been dealing with now is menstrual problems.
:( Back in January, my GYN put me on Yaz to hopefully help with my bad pain every month(she thinks I have endometriosis), and it was working well, but the second month came by, and I was bleeding for about two weeks straight with bad menstrual cramps each day. My GYN took me off Yaz and told me to wait two weeks to start the new pills, and when I went off of those bc pills, I had a flare-up for about three days, I felt awful, and had to go up on prednisone, which took care of it. So, I was switched to Femcon Fe with a higher estrogen level, and it was going well, but since the beginning of this week, I have bleeding again and more bad cramps(and I am not on the inactive pills until next week.) I saw my GYN this morning, and she told me she really wants me to try to get through two more months to see if they help at all, and if not, then the next step is a laparascopy, and if endo is present, then she might put me on lupron. She said in the meantime though, to take pain pills when needed to get through this(vicodin, norco, or valium.) I am not a huge fan of taking these type of pain pills(I don't like the feeling they give you), but they do help with the pain. So it's been hard in that department, but I am keeping hope.

Well, that's what has been basically keeping me busy for the past few months. I just wish I had more time to be able to come online, and chat with everyone here, it's hard because my friends and family just don't seem to understand most of the time, but you all do, and it's great to know that there is a place I can come to where people can emphathize with you. I am going to try to come online more often. Well, I am going to go get caught up and read some threads, just wanted to give a quick update(sorry if I wrote I novel, I tend to do that, haha.)

I hope you all are okay and doing well and enjoying the beautiful weather and upcoming Easter! :)

sits_inthe_corner
03-22-2008, 01:45 AM
Hello Gisèle

Novels happen when you cant get in very often :lol: but I'm glad you make it back.

There are lots of choices out there right now for medication to help with your cramps...so if this one doesn't work out for you, let your doctor know and try something else. Anything to minimize the pain in our lives :) I hope you flare ends soon. While it's good that you are able to finish the year out at home it's kind of sucks too.

Thanks for bringing us upto date :) even if you dont have time to leave a post you can still sneak in and have a read :) and a giggle.

((((soft hugs))))

Nekhbet
03-22-2008, 03:57 AM
Hi Gisèle,

I was just re-reading your post about your rash and wondering how that was going.

Glad to hear that the plaquenil is working for you. That is fabulous. I'm in the same boat, it is working great and I just have the little minflare things. But I wonder if I am feeling great from the plaquenil or the prednisilone.

Check in every so often and let us know how you are going. 8)

jesseyleigh
03-22-2008, 04:48 PM
I went through the exact same problem with endometriosis they put me on Ovral (50mg) it worked extremely well and i have finally moved to low ovral after years on the high dose. Lupron is something my doctor refused to do due to the horrible side effects! Check in to the ovral its a common one for endometriosis. I hope that helped

mnjodette
03-22-2008, 06:27 PM
Good to have you back, Gisele, and I'm glad the meds seem to be working for you. Sounds like your doctor is doing the right stuff! Keep us posted on the GYN stuff - many of us have had similar experiences.

Jody

sick n tired
03-22-2008, 11:27 PM
Giselle!!! <<<hugs>>>

Glad to "hear" from you.....I was wondering what became of you and if you got off of homebound yet or not.

Sorry to hear about your gyn problems, but I am glad that you are doing better with plaquenil.

Happy Easter Break, :angel:

Karen

Faith
03-23-2008, 05:46 PM
Giselle,

It's good to hear from you. Seasonique or OrthoEvra are great. Personally, I love Seasonique. Less flares, less everything.

Take care,

Faith

Gisèle
03-23-2008, 07:18 PM
Thanks everyone for the sweet replies! It means a lot!

Also, thanks for the suggestions, I am going to look them up.

Thankfully, the bleeding has gotten a whole lot better, it's extremely light now, sorry if tmi. Also, I haven't had any cramps last night at all and today, which is GREAT! So things are getting better.

I hope everyone has had a Hoppy Easter! :D

sick n tired
03-23-2008, 07:23 PM
Great News, Giselle...I always love to hear when others are feeling better. And having a painless night, I'll bet you hardly new what to do with yourself.

IN Him,

Karen

Gisèle
03-23-2008, 07:42 PM
Thanks, Sick n Tired!

It was wonderful, I actually went to bed a normal hour last night and slept the whole way through without having to take a vicodin for pain. Such a nice change, it's great!

sick n tired
03-23-2008, 07:46 PM
I'll bet that you woke up in the morning and at first wondered what what different. Sometimes when pain is out constant companion it is strange, pleasant but strange when it first goes away.

Karen

Faith
03-23-2008, 11:34 PM
Hey Giselle,

To slow menses flows, purchase Cinnamon caps at your local health store or market. Take 2-3 per day and it will make a huge difference!!!!!!!!!!!

Take care,

Faith 8)

Saysusie
03-24-2008, 08:18 AM
Hi Giselle;
I've been on vacation for a week and just wanted to add my "welcome" to the ones you've already received. The rashes do sound like lupus rash, especially since you describe them as red, raised, and scaly. The treatments you are currently taking usually helps with the rash. Often, doctors will also prescribe Plaquenil which has been very effective for many lupus rashes.
I'm glad that you were able to get a few nights of restful sleep and that your menstrual bleeding has slowed down a bit.
Hang in there with school. It probably feels like you are doing more work on home school, than you would if you were on campus every day :lol: But, do try to hang in there. I admire your tenacity!

Again....welcome back and we hop to hear from you often

Peace and Blessings
Saysusie

Gisèle
04-07-2008, 05:49 PM
Thanks again everyone for your kind words!

It's been a couple weeks or so since I have checked in. I still have a lot of homework coming in, ugh. Saysusie, you are so right that it seems I am doing much more work on homebound than I would be at school, it's ridiculous.

I haven't really noticed any new rashes, so that's one positive thing. Also, the Femcon is working really well now like it should, so I am so relieved about that.

Last week, I waited until the last minute to do a research paper(not the best idea), and I ended up staying up until 6am finishing it for the next day when my English teacher came by. Well, first, it turns out mine was too long(I had 8 pages, and she just told me it's supposed to be only 3-5 :shock:) , how am I supposed to condense it that much? I wish I knew that from the beginning then I wouldn't have stayed up and worked so hard on it. Secondly, I think staying up until 6am flared my symptoms up, so this past week, I've haven't been feeling my best, unfortunately. But, I think, and hope, I am getting out of it now.

Then, I had to finally get some routine tests done for my rheumy. You know how the doctors write those medical codes down for insurance purposes? Well, under the diagnosis/reasoning section, I looked up the codes he wrote down, and one of them turned out to be SLE. That was a bit of a shock, I didn't think he diagnosed me, I thought I was still suspected. Anyways, I just got the results back today, and some of the UA results are abnormal, but the most important one is that my protein is 2+. I've had protein show up before, but in lesser amounts, never that much. Does anyone know if that's bad? My rheumatologist ordered a repeat UA for tomorrow. I've been reading how that much protein shouldn't show up at all in your urine. :? Is that a cause for concern?

Well, that's been me for the past couple weeks. I still try to pop in from time to time and catch up on threads, it just seems I have no time. I can't wait until summer, I am counting down the weeks.

sits_inthe_corner
04-08-2008, 12:30 AM
Hi ya Gisèle

For some it is a concern. No matter what type of lupus you have, each person is very unique in how they display their symptoms. So yes you need to be aware of things. But just cross bridges as you come to them. There's no point in worrying about what may never happen. :)

Do you take courses through the summer or do you have a break untill fall?

Pearl
04-08-2008, 05:54 PM
Gisele -

Sorry I didn't pop in earlier to say hello. I am so glad to hear the plaquenil is working for you. Hopefully, you will be back to your young self (or close to it) in time to enjoy your summer with your friends. In the meantime, take care.

Jana

kukukajoo
04-10-2009, 08:08 AM
have they done an ultrasound to rule out fibroids? I think that is a huge reason for heavy, long periods and messed up cycles.

I had one the other day where they inject your uterus with fluid to see the lining better and it showed many in me, with one huge one. I at the docs today to discuss the possibility of ablation and more than likely a hysterectomy. I am done having kids and get so sick with my periods which come every 2-3 weeks and pretty anemic so they can have it if they want it long as they leave my ovaries!

After the ultrasound, I came home and looked it up and this is common for fibroids. I have had the lap and no signs of endo anywhere.

Hoping for the best for you!

Oluwa
04-10-2009, 10:04 AM
Gisele..where was I when you posted...humm. Lovely to read you again...hugs...and you're doing great for the most part.

I've wonder how you had been, I think I may have even put an APB out there for you....

Results in from your UA, yet?

Loves...
Oluwa

Rastagirl
04-10-2009, 10:35 AM
Hey Oluwa...

Just thought I'd mention...looks like this thread was from back in 2008...

I too was surprised to see Gisele's name on the board....but looked closer and saw it was an old post.

Mmmmmmmmm............. I do hope she's okay though. I know she was a regular here for quite while.

Lori :heart:

Oluwa
04-10-2009, 01:51 PM
Oh, I see the year now..I had read the day and must have skimmed over 2008. Maybe she has this marked and will receive an email...Thanks, Lori...