Thursday, February 19, 2009

Anime & the Rheumatologist

For those of you that have been following me for a while, you might remember that we have been going through ups and downs with Anime's health. We have been (not so) patiently waiting to see the rheumatologist in our area that agreed to see her. ( May a pox be cast on the rheumatologist on our insurance plan who refused to see her because she is not sixteen!) Monday was our big day. The office had given us the first available cancellation due to her increase in frequency of her symptoms.

We were told early on to be prepared to be there for a while as the doctor likes to give each patient the time they need rather than rush patients in and out. He did that, and for that I am grateful. What he didn't do was give us a diagnosis.

Maybe I went in expecting too much? Perhaps I was fooling myself, even though I know there is no one specific test for lupus? Maybe I just wanted, so badly, to know what is running rampant in my daughter's system so that we could finally understand where all this is coming from and what we are facing in the future? Probably all of this combined is what was running in my head.

What did we get? We got a "maybe". Maybe this is lupus. Maybe not. He agreed that there is definitely something wrong, something that most likely is in the auto-immune disease category. But we have no concrete answers. Nothing to still the questions or, at the very least, send my question in a new direction. We do have a plan, of sorts.

We are to keep a diary. Track each day, her ups & downs, her temperatures, when we see her starting to go down-hill & how long it takes for her to recover, when she is taking meds & when she is not. Most importantly, we are to track how she responds to the sun. Specifically, does she break out in a rash & is it on her face (most typically in a butterfly pattern), and/or does she become ill with exposure to direct sunlight. The doctor had wanted to know how she reacted to the sun last summer but I couldn't tell him as A) I wasn't paying attention to it last summer, and B) she rarely went outside last summer because she felt so crummy most of the time. Apparently reaction to sunlight is a big factor in diagnosing lupus, although I have read that not all lupus patients have the photosensitivity component.

We did come home with one pain reliever to try. She is taking prescription strength Naproxen at 500mg twice a day. She is taking it for two weeks now and then will go off it to see how she does. When I see her start to slide down-hill again she is to back on the Naproxen to see if it will help curb the symptoms. This is a stop-gap to get her through the rest of the school year as she is dangerously close to the maximum number of sick days allowed. Regular doses of ibuprofen don't even touch her pain, thus the higher dosage of Naproxen. Since it can upset your stomach, she also has Omeprazole to take before hand, to limit the stomach discomfort of the Naproxen. She is also taking Loratidine again to help with hayfever, sinuses, etc. to see how that affects the symptoms.

I was surprised that a chest X-ray was not ordered, considering the pain she has when breathing. Nothing was done in regards to her shortness of breath and chest pain. She did donate more blood to the lab vampires for various tests. The office will not call us unless anything is abnormal, but I plan to call tomorrow to find out what the results were and what her ASO, ANA, and hemoglobin levels were. I also want to ask if they tested for all of these things, which go along with lupus.


All in all, I don't feel we're any further ahead than we were before. I still feel like I'm being a hypochondriac when telling doctors what she's been going through. Most of her symptoms are so general to many diseases that sometimes I feel as if they're looking at me like I'm making it all up. We were told that if she starts to have a fever or more per week over the course of a couple of weeks we need to call in to the office. He said they may not be able to get her in to be seen because he is so busy and is short two partners. If that is the case we are to take her to her general practitioner. This is not because they will really do anything for her, but rather to have it "documented" on her medical record for the sake of diagnosis. Hell, if I'd realized that, I would have taken her in for EVERY fever she's had over the past year and a half. But I didn't because I knew they wouldn't do anything for her or they'd do the reverse and just stick her on another antibiotic. I'm one who prefers not to use medication unless absolutely necessary.

I'm frustrated and worried and scared. Scared that this may turn out to be something huge that's being missed with how slow this whole process of diagnosis is. Worried that something irrevocable is happening inside her body to any number of organ systems while we search for a diagnosis in order to be able to start some type of treatment. Frustrated that in a country with such supposedly wonderful health care, we have to wait MONTHS to see a specialist.

So I will track her health and every little thing that goes along with that. We are set to go back again on September 9th to show our little diary to the rheumatologist. SEVEN MORE MONTHS! It's ridiculous. A big part of me is wondering about attempting to get her in to be seen aT a children's hospital/clinic about 5 hours away from us or even if we could get into another rheumatologist in either of the (bigger) cities that are about 3 hours from us. Or would it be better to stay the course and document for the next several months. I know that we will have to call back for an earlier appointment because there's just no way that she will go seven months without another relapse into fevers/fatigue.

This is a guessing game that I don't want to play anymore.


LUPUS FOUNDATION OF AMERICA, INC.

8 comments:

Kate said...

My heart goes out to you and Anime -- this sounds so frustrating for you both.

If I were you, I'd try to see a doctor in each of the cities that are a few hours away. Considering how long it took you to see this doctor -- and how long it was originally supposed to take before you got bumped up -- it can't hurt. And say you get an appointment from one of them two months down the road -- you'll have a two-month diary by that time. That could make the difference in getting closer to a diagnosis.

The Missus said...

Wait... So I am confused... Did the doctor not do a blood test for Lupus?

Emily said...

Oh poor both of you -how frustrating and worrying. I agree with Kate I think you should keep recording AND chase alternate appointments. Go after everyone and hopefully some one will be able to help you - the children's hospital sounds like a good idea specifically!

The Modern Gal said...

Ugh. It sounds like you've been going through a lot lately. I hope things get straightened out soon and Anime starts feeling better.

Shania said...

This has to just be hell for you both. I'm sending good vibes your way.

Wyld Raven said...

My SO went through several years without a diagnosis before one doctor finally called it Mixed Connective Tissue Disease. So many of the auto-immune diseases are quite difficult to pin down. Best of luck to you both.

Andi said...

So sorry to hear about what you are going through. Discovered you through a SoMi comment, I am a 30 blogger (at least for one more year) and have also lamented on the lack of activity for them! Nice to find you, adding you to my feeds.

Frogdancer said...

How awful.
I have nothing constructive to say... just wanted to let you know that I'm thinking of you.