Tuesday, October 26, 2010

Tomorrow...

Tomorrow is a big day for the Peanut. First she needs to have some labs done to check her blood sugar. Her last 3 random tests have been high. I doubt she has diabetes but with it being on Rick's side like crazy, it would be best to know. So the poor thing has to fast for 12-14 hours. She's never had to fast before so this will be interesting.

After her labs she has a follow up with the ophthalmologist. I'm praying that her eyes are clear and she'll be able to stay on Humira. I have a feeling we're not going to be able to stay on it for much longer. Since her eyes came on so fast and so strong this time I'm sure they will do it again. I want her off the pred drops. We stopped them a few days ago so we'll see how she is tomorrow.

I started Enbrel on 10/14. I've had 2 injections and I think I may have some improvement in my swelling. I still have pain but the swelling in my elbows and hands is down. I can even wear my wedding rings again AND they're a tad bit big :) I did have a bad weekend and slept most of it away. Missed Bubby's game on Saturday, could hardly move yesterday and I have a wicked bladder flare going on right now. I have Interstitial Cystitis along with everything else. I know that is my own fault seeing how I had pizza and tacos over the weekend. So, I'm taking the bladder meds I have and I'm going to try to get through this flare without seeing a urologist. We can't afford more doc visits and more meds.

I hate being sick and having a sick kid. I just got a call from the school and it seems J's wrist is bugging her. She said it's a bit warm and crampy. Her stomach is bothering her too. Not what I wanted to hear today. We can't flare at the same time! Blah!

Tuesday, October 12, 2010

World Arthritis Day means......?

***I'm real late on this but I'm hosting some amazing friends who are visiting from out of state, I'm super tired, achy & swollen. And I just found out that I have RA myself. I was diagnosed with lupus first which wasn't the whole story. I'm finally seeing a rheumatologist that is going to help me. I'll be starting Enbrel this week. Wish me luck!***

If you belong to any active online arthritis community you've heard about WAD. The Arthritis Foundation and American College of Rheumatology (ACR) have decided that today will be World "Arthritis" Day. Too bad they are only focusing on osteoarthritis, (OA). When you hear the word arthritis you probably automatically think of OA, which is the type of most people have or will have at some point in their life. It's painful, can cause a lot of damage leading to joint replacements. I know that's how I was until the other type of arthritis, autoimmune arthritis, (AA) came and invaded our lives forever.

To learn more about autoimmune arthritis visit International Autoimmune Arthritis Movement

Jordan was diagnosed with JRA when she was just barley 3. We went 6 months of seeing different doctors, having different labs done, surgery to finally have an answer. Juvenile RA isn't well known. In fact, adult RA isn't really known or understood. When you tell someone you have AA, which is what I tell people J & I have, they look at me funny. When I go on to tell them about the treatments we need they question me or say, "Well, so and so has arthritis too and all s/he needs is advil or aleve. That may be true for OA but not AA. With AA the treatments include but are not limited to: NSAIDs, steroids, low dose chemotherapy, biologic drugs, physical and occupational therapy.

A few faces of arthritis




I'm all for arthritis awareness but I wish the ACR and AF were making a bigger deal about AA. IAAM is working hard to re brand the word arthritis. People need to know that "arthritis" isn't just something old people get.

"IAAM, the 1st nonprofit in history that focuses exclusively on the 7 Autoimmune Arthritis diseases, is asking you to participate in this global awareness event by forwarding and posting this newsletter and, if possible, purchasing one of the 3 awareness designs shown on the publication. These items can be purchased by visiting the IAAM website atwww.IAAMovement.org. (The awareness designs range from $5-15 with 100% of the proceeds donated to IAAM to create future awareness programs)."


Sunday, October 10, 2010

A quick update!


But first, isn't she beautiful?? My baby girl has the most amazing eyes. Yes, I'm Momma so I'm allowed to say so :)

So, the inflammation is better but it wasn't totally gone when we went for our follow up a week after we noticed the flare. We're sllloooooowwwllllyyyyy tapering off the pred drops and we have a follow up again on 10/23, I think. Gosh, either J or I have appts once a week. They all run together....

She's doing better as far as (the minor) joint swelling and pain go. The Aleve twice a day is wonderful. I wish J would just TELL ME WHEN SHE HURTS!!! I understand not wanting to be different but I can't believe she keeps it to herself. Everyone knows when I don't feel good or hurt. Not that I go telling everyone but I do remind the kids sometimes the Momma isn't feeling 100%. Can't she do the same?

I see the new rheumy again tomorrow. I like her so far. She told me that my labs for lupus came back either negative or slightly elevated. However, it doesn't mean I don't have it. I have been on treatment for over a year now so that could be why. I got my records from my first rheumy who diagnosed me in July '09 and I think he's a quack! There are sooo many mistakes about symptoms I have/had and my bladder issues! Seizures is written as fever, which I get messed up in the dictation, but these are medical professionals and I expect better record keeping. I have lab reports from 3 different labs. I understand, I think. One lab stated that I am ANA positive with a speckled pattern, the other does not. One states I have APS. Rheumy tells me I have APS and I should start taking aspirin daily. I do, but there is no record of him telling me to do so in my records!!!! I don't understand any of it so tomorrow, I'm going to have a long talk with the new rheumy to figure out what exactly is wrong with me, what meds I need to be on and what I can ditch. It will be an interesting appt I think!