An Actual Health Update

Once upon a time this was a blog I updated on my health multiple times a week. I now realize since the whole NJ tube thing I have not given an actual update on my health. A lot has happened in the last few months to say the least. I think the best way to go about this would be to go by specialist:

Rheumatology- As I mentioned a few post ago at my last appointment with my rheumatologist my joints were doing amazingly and I don't have to go back for a year. As of now I am only on celebrex for my joints, which I was really hoping to get off of but since sulfasalazine clogged my tube that went instead. The last week or two my left SI joint has been a bit stiff and sore but I am hoping tylenol will be enough for it.

GI- In September I saw a GI at Temple Hospital who is supposed to be the top doc for gastroparesis. He put me on domperidone, which is not FDA approved and did not help. The only thing he had left for me was an experimental surgery with a 50-60% success rate so I am taking a pass. I was largely unimpressed with him and his office so I am not seeing him any more. I also had a more permanent feeding tube put into my stomach called a GJ tube (yeah I had surgery and forgot to put that on the blog). In February I am seeing both and adult GI at UPenn and my GI at CHOP, although I do not think much will change.

There is now a hole in my stomach!

Cardio- As my fainting episodes have continued to get worse we keep playing around with medications. I am currently on a steroid called florinef, although thankfully it does not have all the same side effects as prednisone. However it is not enough to get my BP up and my heart rate down. My cardiologist wanted me to start epogen injections but my insurance wouldn't improve it so we are trying to get up weekly IV fluid treatment. I also have the official diagnosis of Dysautonomia.

Cardiology appointments require button down shirts.

GP- Okay, so this isn't a specialist but whatever. I just wanted to mention I really like my new GP in Philadelphia. He is at UPenn which is where my cardio is too so that makes life easier. He wants to see me every 6 months because I am medically complex. I like that he gets that and is very reachable by email.

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The Swollen Wrist

This morning I woke up to a red painful swollen wrist. My right wrist was not happy or useable for the better part of the morning. Of course my mom wanted to make a rheumatologist appointment for this week but I really did not think it is worth it. Since I am now in the 2 week period before my hip surgery I can not take anything but Tylenol anyway (no voltaren or fancy cream), so there is not a whole lot that can be done. We finally settled on me going to my GP (for the 2nd time in one week as I had a pre-op appointment with him on Monday), and I took a picture so I can show my rheumy at my next appointment. I managed to get an appointment at 11AM because my GP was in the office this Saturday. By the time of the appointment my wrist looked pretty normal, although I had the picture so he could see something was up. He had it x-rayed just to rule out any issues non rheumatology related, and as we both guessed the x-rays came out normal. My Lovely Wrist this Morning I was left wit...

The Perfect Body?

Today I am going to write about a taboo subject- body image, and how living with chronic illness/pain has affected it. I get told how great my body is a lot, I am tall and fairly skinny. Not to be egotistic but I look pretty good in a bikini. I should love how I look. I should be confident of my body, after all I just bought a pair of size 2 jeans. Yet I still struggle with loving my body. My New Jeans! In middle school I thought my legs were fat, that was when I had muscles from horseback riding, today I miss my muscular legs. My thighs tend to be two different sizes, the left one is almost always smaller. The reason for this is simple, my left quad has atrophied from months of limping and being on crutches when I was 15/16, at one point it was so bad my doctor measured it and the difference was a good 2 cm in circumference. Today they are almost the same size, and probably look the same to anyone else, but to me they still look different. If you haven't guessed it yet, ...

I Am Still Me

In the past two years it seems like my medical issues have become part of my identity. I am the girl always on crutches or limping, the one who doesn't participate in gym. No one asks where I am if I am not it class, they know I was probably at a doctor's appointment or if I come in a period or two late my friends know my shoulders are probably having a bad day so I had to take a bath to get rid of morning stiffness. I am not sure when it happened but people are now more surprised when I can walk then when I can't. Sometimes it is really hard for me to move past the medical parts of my life, because it does affect all the others, but it is important that I do. I try to do everything I used to do, which is hard but aside from athletic activities I have done a pretty good job managing. I can't always do everything I want to but I prioritize. There are a couple things I refuse to let my health affect. Debate is something I don't let get affected, since I have ...

Life with a Flare

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