The more time that I have to think about the inaction of our current rheumy, the angrier I become. I am one of those people that does not like change. I try to give people many chances, & always believe that they have the best of intentions. It takes a LOT for me to get truly angry- angry enough to take action. Once I have reached that point, however, there is no usually going back. After reading how the treatment for her new diagnosis was exactly what I asked for (& was denied), I looked to Facebook to try to find a discussion on the matter. One reason that I love FB so much is because in a situation like ours, it gives you a way to connect, share info, & learn from others. If you're very lucky you may have the opportunity to teach, help others or simply share or exchange info. To me, that is huge.
In my search, I found a mom on Facebook whose daughter had been diagnosed with Juvenile Dermatomyositis about four years ago. She had a page going to raise awareness for JDM, & to help fund raise so that they can better care for their little girl. I had noticed that they are in our state, but they were seeing a specialist in Chicago. My thought was pretty much "Dear God, what have we gotten into???" She had also linked to the page that I had found about the treatments used, & for whatever reason I thought that was her page, too. That page had actually changed a lot for me; it was there that I realized that I needed to make a change and it gave me the courage to do it. So, I sent her a message via FB. I told her our plight and mentioned that the page made me realize I needed a new rheumy for our little one. She sent me a message within 24 hours asking me to call her. (This is why I love Facebook. Where else can you so easily find people who *KNOW*?)
The first question that she asked me was who our rheumy was. When I told her, she says "I knew it! I knew that it had to be!" She then told me her daughter's story. (Note that I usually mess up the details, so I may be remembering wrong on a detail or two, but the overall story is as told to me!) They had started out with our doc. He wasn't going to give them anything. Finally, he agreed on oral prednisone. It wasn't being absorbed into her body. You see, with steroid use the user develops a "moon face". Their physical characteristics are changed after using for more than a week or two, and generally go back to normal at some point after it is discontinued. She wasn't gaining weight, she wasn't getting the moon face, but he wouldn't see it. Mom had started to research and asked about Solumedrol. Apparently, he doesn't believe in it. He says that he feels uncomfortable with it. Her skin had literally started breaking down, opening up. She called him, panicked, and asked him what to do about it. His suggestion? Solumedrol? No. More powerful steroids? No. Balmex. Seriously, Balmex. Needless to say, she was thinking wth?, but didn't quite know what to say. It was at that point that she realized that they needed a serious change. Her daughter had gone from a wonderfully healthy, happy little girl that was very active in sports and was a model to a wheelchair bound mess. Until she discovered her doctors in Chicago, that is. She started fundraising in order to try to raise enough money to go. At first they were going every six weeks! She had the most advanced skin breakdown they had ever seen in Chicago. (I shudder when I think of that. That could have been us in the future.) How is she now? She's walking, once again able to brush her hair and teeth by herself. They're weaning her off of the steroids, & she's active once again. Thank you, Krissy, for sharing your story and your time with me. You made it perfectly clear that my decision to fire him is the right one. I am grateful to you for that! Same to you, Julie! I know, you tried to tell me first, but I am stubborn!
So, my pedi faxed stuff to the new rheumy's and I faxed the labs that showed her positive ANA (auto nuclear antibodies), along with a little note! :) I anxiously awaited a call from them. Two days went by as I waited and worried. I didn't want to rush anyone though. I had been told that this doctor liked to look through the charts for each patient before accepting them. I knew that she could help us, and I was not disappointed. I got the call Friday while I was at work. It wasn't just that Em was accepted. The person calling said "Dr. E believes that she can help Emily." It's not just "bring her in", or just scheduling yet another patient. That statement gives the impression that they care about their patients. That is all I can ask for. When you find a doctor that cares, generally that means they are good at what they do and they have your best interest at heart. Sometimes it's hard to tell. Sometimes they seem to but don't really, or it's just a job.
I know that with these doctors, they believe in treating when appropriate. That has also become more important to me now than I ever thought it would. I had always assumed that the doctors would treat as needed. I spent quite some time asking about Calcium Channel Blockers for Em's Raynaud's. I'm sorry, & maybe I'm crazy, but to me getting frostbite in school is not acceptable!!! My child not being able to walk for a week is also not acceptable!!! I don't want a billion meds just to shove stuff at her, but I don't think that I should be expected to just sit back and watch her take 20 minutes to shuffle to the bathroom because it's all that she can do, or accept that I can't hold her because it causes too much pain. I shouldn't be ok with her not being able to wear shorts in Florida in the summertime (when everyone else is dying of the heat), or that she can't go swimming without turning completely purple in the summer. I am not settling. I have asked, I have suggested, I have requested. I have asked 2 other doctors at the JA Conference, and they both agreed that they would be treating the Raynaud's. It's not cool that he's not treating the scleroderma because she can't use Methotrexate. My child is likely the only kid in the world that wants her MTX injections. Why? Because she's itchy all of the time. I know she can't take it because of her white cell count, but it's not the only drug out there used for it. However, apparently when a patient doesn't respond the way that they are supposed to, some people can't think their way around it. That said, I can't wait until Wednesday!!!!!
Today she's doing pretty well! She had a fever for 5 days but it's finally gone. Her pedi only calls when there's a problem with the labs and she hasn't called yet, so I'm thinking that the strep culture was negative. (Unless she just faxed all of the results to the new doc figuring that it's partially their responsibility and we are going there...) In fact, reading up on things, it looks like the JDM seems to cause fevers from the start so I'm betting that was it, if that's what is really going on. In my heart, I still believe that instead of it being all sorts of overlap conditions it will finally be called one thing- Lupus. According to the latest edition of Arthritis Today, Lupus is one of the most commonly misdiagnosed diseases, and can present as all of the diseases that she has been diagnosed with. http://www.arthritistoday.org/daily-living/relationships/you-and-your-doctor/rheumatic-diseases-misdiagnosed.php?WT.mc_id=52diseases "
What it is: A disease in which the body attacks its own joints, skin, tendons and vital organs. Lupus is episodic, meaning that symptoms will flare and then disappear. Doctors have dubbed lupus “The Great Imitator” because of its ability to look like so many other diseases.
Mistaken for: RA, scleroderma, rosacea, multiple sclerosis, Lyme disease, depression, vasculitis, myositis (inflammation of muscle tissue), endocarditis (inflammation of the sac around the heart), fibromyalgia, meningitis"
So, we shall see. She's walking around again, and mostly pain-free, despite one mouth sore. (That's a symptom of JDM). Praise God! Last week was a very hard week. Let's hope that this new week gets easier... Tomorrow is infusion #3!
I am very glad you have made the change. DR. E AND DR. M both care about their patients and I can not wait for you to see that for yourself!! Let us all know how it goes!!ReplyDelete
When I met Dr. M I really felt a very strong connection. Just from that alone I know it will all be ok. I soooo cannot wait!!! Lessons learned....ReplyDelete