Not doing well:(

General
1

Hi everyone...I can't believe I haven't posted in so long.

I was diagnosed with PsA and Sjoren's syndrome last March. I did pretty well right after being diagnosed with "basic" drugs (alsulfizide, plaquenil, Lodine). I'm a teacher so my summer was pretty stress free. When school started, I was in a major flare within 3 weeks and at my Rheumy's request, I took a leave of absence and started Humira. I really felt better pain wise pretty quickly after starting the injections, but the Sjoren's Syndrome was really bothering me-mostly with being really thirsty, bad taste in my mouth; my eyes didn't and still don't bother me much. And of course, I was really tired as all of us who have autoimmune diseases are. I have loved being home again and being a full time stay-at-home mom (we have 3- 9, 14 and 16 yrs. old) again.

Then November came and I came down with Pityrasis Rosea (this is a viral skin rash) that my rheumatoligist didn't know what it was when I first showed him and told me to go ahead with my injection that week (honestly, it starts out looking like a Psorisis patch and although I haven't had any trouble with Psorisis yet because I'm one of the ten percent where the arthritis shows up first ,I thought that what is probably was). When the rash started spreading all over, I went to our family doctor and she diagnosed it, put me on Prednisone for 8 days and told me to hold off on the Humira. It's been ten days now, I'm still having the rash (she did say it would hang around for about 2 months) and looks like I'm flaring again. My back,chest, shoulder and both hips are very tender; I'm sooooo tired and lethargic and not only am I still more thirsty than ever, I now have seem to have lost my sense of taste...or if I can taste it, it's awful. I see my Rheumy on Wednesday and I plan to tell him about this then. I don't think he'll do much about the Sjoren's because when I saw him last month and I told him how bad the dry mouth was and I was concerned about the Sjoren's, he sort of blew me off and declared the Humira was working (which it was working for my arthritis).

I would love to change rheumatoloigists (this is not the first time I've not been impressed or felt like he didn't listen to me) but I'm right in the middle of this medical leave mess and not sure what to do. My short term leave (3 mos) is supposed to end Dec. 16 and I was just going to go ahead and resign and just tutor/sub part time. I'm not even sure if I can do that anymore. I get just totally worn out just taking kids to school.

This is so far my lowest point in my journey with this disease. I am only 46; really believed my dr. when he told me in March that I was in a "moderate" stage; cannot believe how fast my world changed. I feel so guilty that not only do I not feel like doing anything but that because of this issue, we are losing my salary and my husband is once again the sole earner. He's fine with it, we are okay financially although things are going to be "tight" and

when my job is officially over, we've got to figure out insurance

(we will do COBRA for awhile then switch to his ). I hate that I'm coming on here after being AWOL since July, but honestly, no one "gets" this. I have really tried not to feel sorry for myself since I've been diagnosed because it just didn't seem that bad (not MS, not cancer, not anything "life threatening) but I feel like I've just been b*%@$ed slapped the past few weeks.

Anyway, this has somehow turned into a pity party instead of a "discussion." Sorry:); do any of you have issues with Sjoren's? Right now it seems to be the major issue.

Thanks for listening...I hope all of you are doing well and had a great Thanksgiving.

Libby

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Hi Libby! Its ok to feel sorry for yourself sometimes, don't feel guilty about it. We are dealing with something that affects our lives everyday. You just have to remember how strong you are for getting through it this far. I haven't heard of Sjoren's sorry so i can't help with that. Just wanted to let you know that there's someone out here that heard you :). I have had PsA for 19yrs and was diagnosed at 8, i've been through some terrible doctors and know the amazing sense of support and trust and help you can receive from a good one. It is worth searching around if you aren't happy with yours. It could mean the difference of getting your life back. With a bad doctor it can feel like they give up on you and then your left feeling should i give up to. Keep fighting for yourself, find a doc you are comfortable and always trust your instincts. I really hope that things get better for you soon! Take Care :)

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Oh Libby, you sound so sad, and it's not a pity party! I think that's what this site is for, to share & vent about your issues with people who get it. Sorry, but I can't help you with the Sjoren's either. I don't know you but reading your words it struck me that you've been very strong & managed to cope with sooo much that life has been throwing at you.

Try to hang in with making a final decision re your job if you can stall them/take more leave/take unpaid leave etc. I gave up my career b4 I should have and lost out on various benefits.

Take care!!

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Libby, I hear you too. I was diagnosed with Fibromyalgia in 2002 and continued to get other symptoms that did not match those of Fibro...hence being diagnosed with PsA a year or so ago. This year though has been the worse...I have aquired a problem with caffeine...small amounts even make me have cystitis...Vitiligo (loosing pigment in the skin)...Sjogrens; mine is in my eyes even though I do drink a LOT of water the eyes are the worse. I have 2-3 days a week where my vision is very blurry because of the dryness and not much helps. If you look on the Mayo clinic website they usually give great info on diseases. One of my meds is Plaquenil and that is actually supposed to help Sjogrens...we will see. I too am at a point of maybe giving up my job. I have also acquired a tremor in my right arm and hand...seeing the neurologist Thurs. I am also in that 10 percent with out the psoriasis yet...

I am so sorry that you are feeling so badly and am sending you a gentle hug. I hope hearing that you are not alone in this helps you as much as it helps me.

Alma

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Hi Libby,

I'm so sorry that you're going through this. It is so hard when you want to work and can't, and people just don't seem to understand. Do not compare your health problems wo those with MS or cancer. It is different, horrible in its own right, and people don't understand it. If you had MS or cancer your life might actually be easier because people recognize those problems and support patients.

I do not have Sjoren's, but many secondary conditions related to autoimmune problems. It seems life is a delicate balance, and when one thing goes wrong, the whole thing is knocked off balance and can set you back months or even years. Although you're not thrilled with your doc right now, I would recommend staying with him/her until after your leave. Don't know where you live but in NJ where I am it's a total pain in the butt to switch docs while on medical leave.

I totally relate to your guilt about not bringing in income. Until I got "sick" I worked two jobs and made great money. Bills were paid, there was extra. Now the most I can work is 24 hours a week and financially we are beyond stretched. I feel responsible for the financial downfall of my family. Unfortunately, it's one of those things in life we don't plan for, and its shocking when it happens. Don't be down on yourself for not being able to work right now. If you had MS or cancer no one would question it at all:0)

Hang in there, it will get better. Take care of you and yours and let the rest work itself out.

Carly

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Libby,

Sorry to hear your are having a rough time right now. I don't have experience with Sjoren's but have battled psoriasis since I was 17 (now 51) and have recently been diagnosed with PSA, so I have an idea of what you might be going through. It's amazing how most people don't really get the auto immune disease thing and when I try to explain the pain and mental anguish of dealing with being so fatigued, they just sort of look at you. It's easy to get depressed but you have to stay strong. It sounds like you are a great mom and loving wife, you should draw strength from the fact that you were not only "bringing home the bacon, raising kids, taking care of your husband but also dealing with a very difficult disease". You are stronger than you think. I'm having trouble adjusting my life and scaling back on certain things but it can be done. Hang in there and it's ok to have a pity party once in a while. We understand!

Dealing with insensitive doctors is a discussion all by itself.

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Libby,

Just found your post and wanted to see how you were doing? I'm sorry you have had a difficult time. I was diagnosed with PsA, Sjogren's and Fibromyalgia and Plaquenil is working somewhat. My Sjogrens comes out different ways- changes daily with the dry mouth and my eyes are always bloodshot. I hope I never get pulled over.

What happened with work- have you been able to find rheumy. I hope you are doing better.

Achy