Saturday, June 19, 2010

Plaquenil the Terrible

I have been taking Plaquenil 100 mg split into two doses for a couple weeks now. I have been sick to my stomach for most of these two weeks and the past two days have been pretty awful. I knew this was going to be a problem from the beginning because I had this same reaction when I was put on it after being diagnosed. My doctor was hoping that such a small dose would be better, but so far no luck. And I am running out of patience.

I also woke up with a migraine today which has not helped my mood. I had to take my migraine medicine twice during the night and then this morning 600 mg of ibuprofen (because I am not taking the Mobic right now because of my stomach).

On Tuesday I meet with her again to talk about my lupus and the results of my kidney ultrasound. I got a letter from her today that said I have multiple stones in them. This does not really surprise me because I have a history of kidney stones.

The weather is gorgeous here (but hot) and I have not been able to enjoy it because of my stomach. I am hoping things will change around quickly. If not then I will have to stop the Plaquenil.

Monday, June 14, 2010


Over the past few months I have been learning new things about my body. One of the most interesting things is that I have an extra cervical rib. For years I have had a mystery bump right underneath my collar bone on thee right side. Doctors have all felt it and tried to determine what it is. When my blood work started coming back abnormal because of the lupus, this lump caused them to think I had lymphoma (which of course scared the daylights out of me). However recently two doctors have determined that it is an extra rib. Only 0.2% of the population has one. They can cause some problems, but for right now it is not bothering me and so I'm not worried about having one. It just makes me feel very unique!

I have another congenital bone problem with my tibias, or the shin bones. They both are bowed to the side which causes my feet to turn out like a ballerina's. Unfortunately this does cause some problems for me and I think it contributes greatly to why the joints in my legs hurt a lot more than the joints in other parts of my body. Of course when other joints want to act up (like my right shoulder now) they really get going.

Also I have the congenital cataracts to deal with which have never really been a problem before this past year and a half. It seems like I was born with some interesting features to my body. There are a couple reasons I think this happened.

1. My mother had an autoimmune disease called sarcoidosis while she was pregnant with me. Her case was very severe and she was on very high doses of prednisone. Of course prednisone is deemed safe in pregnancy, but it has been speculated that the prednisone was the cause of my cataracts. Unfortunately my mother lost her battle with sarcoidosis when I was 5 years old, and seeing the effects it had on her make me resist prednisone even more.

2. I was born quite early. 2 months in fact. The details are a bit fuzzy as to the circumstances surrounding this but most of what I gathered involves "a lot of blood" and me being "impatient". Whatever the reason, I was preemie. I was pretty much OK once I came out and spent only a little bit of time in the NICU before I came home.

Whatever the cause of these issues, I may never know. I just have to accept my unique body and the lupus that comes along with it!

Sunday, June 13, 2010

Some Good News

I got back into the apartments for next year! I am beyond thrilled by this because my schedule and everything was based on me living there again. Also my house is packed with stuff for the apartment and if I did not live there then all this stuff would have to stick around for another year.

I went up to school to see the eye doctor on Friday. Since I started taking the Plaquenil, I have to go back and get a visual field test in about a month. Then we will also talk about having the cataracts removed which I really want. The doctor wants me to try getting new glasses with a special coating on them first.

Today I went to the gym for the first time since I had my kidney stones. It passed last night and I am not in pain from them now so I thought I could try going back again.

I am still jobless but this news about the apartment next year has lifted my spirits considerably. My online class is going well, I just have to find the motivation to do the work. I have to watch a 2 hour documentary tonight and I have a mini-paper due on an article tomorrow.

Hope everyone is doing well!

Wednesday, June 9, 2010

Turned to Stone

Unfortunately I am dealing with kidney stones at the moment. It is not the first time I have had them. One time they kept me in the hospital for a week and I was discharged on my (18th? It's hard to keep track) birthday. No hospital admissions in sight for me this time around though, I'm dealing well with them on my own.

My online class started yesterday and I have done none of the reading yet. I have also not gotten back into the apartments for next semester, found a job, and my financial situation is still pretty awful. All around I'm just not in the best mood.

That's it for now. I have to go to school n Friday to see the eye doctor again so I will post again after that.

Thursday, June 3, 2010

What Makes a Good Doctor?

I often wonder what qualities I like to see in a doctor. I am writing this blog because of my recent experience with my new rheumatologist and another one that I am going through right now. On Friday I called my eye doctor because I am really tired of how much my eyesight is diminishing because of the cataracts I have. They need to come out, but since that will change my eyeglass prescription I don't want to spend all the money to get them just to have to spend all this money to get it changed again. The doctor never called me back and I had to call again on Wednesday. Now I understand this was by no means an emergency and it was a holiday weekend, but I do not think that is acceptable. I am having a real problem with my eyes that leaves me completely frustrated most of the time because I can't see nearly as well as I should and the strain is giving me constant headaches.

I also mentioned my problems with my new rheumatologist. She prescribed Plaquenil, but my insurance wants a prior authorization. It has been over a week and the authorization has still not gone through. While I am not thrilled to try Plaquenil again because of the effects it had previously on my stomach, I do think waiting over a week is a bit ridiculous.

I guess my ideal doctor would be caring, a good listener, and available. My rheumatologist at school fits the bill, but she is the only one (out of many, many doctors I have had) who really does. In thinking about going into health care, I read many different articles and blogs written by and about health care professionals. I understand that they are often overworked and have a very demanding schedules, but what about our needs as patients? I often feel like a burden to my doctors and I have delayed or just plain not sought medical attention when I thought I needed it because of this.

This problem is bigger than just certain doctors. It is part of the problems facing our heath care system in general. However, there are certain things that I expect from my doctors and fins unacceptable and other things that I can give some leeway with.

Anyone else have any thoughts?