Thursday, September 30, 2010


Poor Jordan. Poor, poor Jordan. I think we're about to go round and round with the eyes again. 6 months after her JRA diagnosis her eyes joined it. We've had periods where she couldn't be inflammation free for more then a week or 2 then we added the biologic meds and she was doing OK. After about 6 months on Enbrel it stopped working and we went to Humira. She did great for a while, like over a year, and now her eyes are active again. Joints are too but I'm really worried about her eyes.

There is talk about Remicade. Don't want to do it but what other options do we have? Not many. We did up her metho as of 9/20 and we still have room to up it more if we don't see any improvement on this dose. She's also back on naproxen 2 times a day to help with the achy, stiff and swollen joints. We've only done 2 doses but Jordan told me today she feels better then she has in a long time. I feel bad because she doesn't tell me when she hurts. I have to pry it out of her and even then she doesn't want to take any meds. I guess hearing the doc say she needed to be on it again on a regular basis helped. So, we see the ophthalmologist in 4 weeks. In those 4 weeks before we see her we are tapering J's pred drops. Problem is, I know Jordan and her history of uveitis. J will be clear when we see Dr. T but a day or 2 later the inflammation will start again and I won't know it until we see the doc again. Usually Jordan can tell when she's flaring but this time it came on so fast and hard our family optometrist caught it. We've been running from doctor to doctor since the beginning of September and I'm tired of it. But this is the life of a mom with a family who has different medical issues.

I am supposed to see another rheumatologist tomorrow for my "second" opinion. I use quotes because my lupus has already been diagnosed but the new doc I saw a few weeks ago with our new insurance didn't believe I was really sick. So the day after I saw him I called to get in with another rheumy. I'm out of meds, I have a lovely rash on my face, I hurt all over, I'm totally exhausted-- took 2 naps today and plan to go to bed when the kids do- but I'm not sick. I went in for blood work and I've got a few results but the ones that will show, or should show, I have lupus aren't back yet. We'll see what happens tomorrow...

Is it bed time yet?!

Thursday, September 16, 2010

Am I sick or not?!

I saw a new rheumy today. I was thinking, I have a diagnosis so all he needs to do is go over my meds, take my history, examine me and just follow how I'm doing. Routine labs, med tweaking when needed. All the stuff I came to know and expect after I was diagnosed.

WRONG!!!! This guy doesn't believe I have any kind of auto immune disease. Yes, I am ANA+ but that can mean anything. I understand that BUT when I also have APS, inflammation of the blood vessels, AKA vasculitis right?!, anti thyroid antibodies, high ESR, seizures, massive hair loss, a rash on my face (& chest), sun sensitivity, virtually NO vitamin D in my system at all and Raynaund's how can I NOT have an auto immune disease?! Did I mention the debilititing fatigue?! I didn't? Well that is a huge part of my life, just ask my kids...

HELLO!!!!! Are you a doctor or what?! Even a first year med student would be able to tell that something isn't right with me. This guy told me all the meds I'm on were to treat different things. No kidding. I have several different problems. The MTX, plaquenil, prednisone & folic acid are for my "so called lupus or connective tissue disease." I use quotes because that's what he did. I'm on others for pain, depression & sleep. Ummmm.... I'm on nothing to help me sleep. I was told that these meds ***might*** help me sleep and of course they don't. Yes, I'm taking an anti depressant because it helps prevent headaches and it's supposed to help with chronic pain. I'm on *I don't remember the full name*pam to help with the seizures & twitching I'm not having. Apparently, the episodes that my entire family and my neurologist witnessed didn't really happen. If they didn't happen then why on Earth was I in the hospital for 5 days 2 years ago and why was I flopping around on my bed like a frickin' fish out of water just a few months ago. Can you see my eyes rolling yet? Oh I'm an attention seeking hypochondriac. Got it. My pain isn't real. The swelling isn't real. The fact that my blood wants to stick together and make lots of clots is something *I* made up in my head. Sure thing. I had never heard of this stuff until July '09 when I was diagnosed with lupus and all this other crap. But I don't have lupus according to this doc.

I'm moving on. This doc didn't examine me. He didn't see me try to get out of the chair, try to walk or anything. He didn't see my swollen hand and I guess he didn't see my face. See I'm tapering down from the pred because I've been on it for about a year now and when I taper down my body doesn't like it. I tend to get this red rash on my face & chest. But I guess that's all in my head too. Oh wait... I have pictures of myself with a red rash. I must have photoshopped them so I'd look like I have lupus. Ya know, I have nothing better to do with my time then to make up these medical issues. Eye roll again. Did you see it this time?

I'm calling tomorrow to cancel my next appt with this guy and set one up with another rheumy. I'll get my previous labs, I didn't have a chance to get them before now because this appt came up so fast, and I'm getting a new set done. I don't know what they're going to show seeing how I've been on treatment for over a year now so it would be one more thing to prove that this doc is right and I'm perfectly healthy. HA!

My husband and I have been together for over 20 years. I'm 36. I've been in pain and sick for over half of my life. He's seen me go from bad to worse. When I was 14 I had a bone scan done. They don't just inject radiation into a child unless they're looking for something. They never found what was wrong and at that time my parents didn't know whatelse to do with me and they didn't push for an answer. I've been looking for one since I was able to make appts for myself and not need my parents consent for anything. And finally I thought I had one. J'd ped rheumy believes I had reactive arthritis when I was a teen, which now I believe that too based on the research I've done.

I know too much now. I know I have some type of auto immune arthritis and I'm not about to let some quack make me feel like my symptoms and pain aren't real. I'm not lazy and I'm not crazy. I'm sick.

Monday, September 13, 2010

Life has changed for us

My heart is broke and it hurts like you wouldn't believe. I've spent the last 18 months caring for Granny. She's been gone for 3 weeks and it still hurts like she passed yesterday. I know this is for the best and she's no longer in pain but I am.

My days are empty now. Kids are in school and I'm alone. There are a million things I could do but I can't. I've been sick for 2 weeks. My stomach is a mess. I can't eat. It's not that I don't want to because I do, I'm starving, but when I do it hurts. I've lost weight, I'm depressed, flaring and miserable. I miss the way our life was just 2 months ago. Everything can and did, change so fast.

I hate cancer and I miss my Granny :(