Life with a Flare

I haven't mentioned much about the doctors appointments I had last week yet so I thought I would elaborate. I mentioned to my new PCP how my hands get really cold, like to the point it is painful and they are a different color. I had thought he would have said it is just poor circulation, but instead he said it was probably Raynaud's which was probably related to what ever autoimmune disease I may have. Totally forgot to mention this to my Rheumatologist the next day. Anyway Wednesday she had called and said she was not sure I should have hip surgery but I needed to stop my medications right away because of the surgery. Anyway she talked to my OS and everything got cleared up I guess because she seemed less worried Thursday. Although she went over the fact that if there was an autoimmune condition the surgery will not make the hip completely better. She also seemed to be leaning towards autoimmune arthritis again, and briefly mentioned starting to treat it more when I go ba

Six weeks is a long time to be on crutches, to make it a little better I decided to decorate them! I started by searching Pinterest and Google for ideas. Mostly duct tape crutches came up, I took them into consideration, but I also found colored crutches that you could order online. They were a bit more than I wanted to spend, but I liked the way they looked a lot better than the duct tape ones. Finally I found a way to get the look I wanted myself. I found alcohol ink! It is awesome and can stain metal. Soon I ordered alcohol ink , an  applicator for the ink , and zebra print crutch covers on amazon. I started by taking my standard crutches and taking the adjustable part out and unscrewing the handles. I wish I had taken a picture of them at this point to show what I mean but totally forgot. Next out comes the ink! It comes in three packs, each bottle only has half an ounce, which made me nervous, but I ended up using only a quarter of one bottle for both crutches. T

Senior slump has hit! I have finished midterms and I have been accepted to college, so why do I need to show up to school still? My life seemed almost normal for a little while, just enjoying senior year. Yes body protested at times but I was doing really well. Also I hadn't had a doctor's appointment is a while, until today. Reality hit again while I saw my new PCP for the first time (since I am just switching from a pediatrician). All he did was give me a flu shot and go over my medical history, and I realized it was more lengthy than most 17 year olds. Then I had to go next store for blood test. Ok so maybe that is not the typical day of a second semester senior... And tomorrow the fun continues as I go the NYC for another appointment... And so it is back to the medical word again.

With just over two weeks to go until my hip surgery I am getting nervous. This feeling has really surprised me, this is the 3rd surgery I will have had. Ok so for the first I was only three so I did not exactly know what was going on, but last year when I had knee surgery I did. Before the knee surgery there was not a definite plan, the doctor would go in and see what was happening, and hopefully fix it. Well that kind of happened but not totally. Without a plan I should have been nervous before that surgery but wasn't. So I don't know why I am sitting here over a year later, weeks before hip surgery, one where I know exactly what is going to happen nervous? Maybe it is because nothing was going right for so long? Maybe it is because my hip will be dislocated? Maybe it is the possibility of missing three weeks of school? (Hopefully I will only miss one week) What scares me the most is if it doesn't help, what will be next? Or what if the biopsy comes back positive for

I got into SUNY Binghamton!!!! I am in complete shock, I keep re-reading the e-mail they sent me, each time expecting to notice I had read the words wrong, but I didn't!!! For so many months this year it felt like my life was spiraling out of control. It seems like finally it is starting to get back on track. I am still waiting to hear from all the other schools I applied to but Binghamton was high on my list!

Ever get a compliment that you just really feel like you don't deserve? I have had a few of those lately and they seem to highlight some sort of insecurities I have. I think I already wrote about the time someone told me how well I am handling everything, but at the time I really wasn't. I was about two seconds away from a complete break down. Now even though I am doing better I think I might still feel awkward if someone said that to me. Another one I hate is when people say "Your so brave for going through this." Wait! You mean I have another choice? If I could avoid the medical mess I currently find myself in I would, but I can't. I would love to not go for blood test monthly or doctors almost weekly, and I definitely would rather not be having surgery in a month. But my body never asked permission before freaking out on me. The Last one is "You are so responsible," but truth is once again I have no choice. I really think if any other person my

Everything today went pretty well, I am still in shock. My doctor's appointments never ever go well, like EVER. First when my OS came in it sounded like he wasn't going to decide on hip surgery yet, but the appointment ended with me scheduling my right hip scope! I was even offered tomorrow when scheduling surgery, since apparently someone just cancelled, but with midterms next week that was not happening. I was hoping too schedule it with my four day weekend in February but no such luck, but ended up with February 4th, which is earlier than I expected. Not happy to learn that I would miss one to three weeks of school was hoping for a week tops, oh well. Things That Will Happen During Surgery Excess bone (FAI) will be shaved away Labrum will be repaired A biopsy of the joint lining (to check signs for RA and Lyme) So the Rheumatologist told the OS that she didn't think that there was enough proof at this point for a rheumatology problem, and the OS thinks there

After years of tests I feel like there are almost no surprises because I have already been through it, x-rays, MRIs, ultrasounds, injections, blood test. I am a pro, completely desensitized to needle. I can even point to the best spot for the nurse to find a vein. Tuesday I am actually going to experience something new, a CT scan, two actually, both my hips. This is to help the OS see the bone abnormalities better, so there are no surprises during surgery. I know a CT scan is basically just a series of x-rays, but still not having had the experience of one yet makes me nervous.  The thing is for test like x-rays, MRIs, and CT scans, since they are noninvasive no one thinks to explain to the patient what is happening, which can be really frustrating. Once I had to stand in a rather painful position a long time after an x-ray just because the tech never told me he wasn't going to take another picture. These test are technically painless, but for someone who is already in

I am sure I am not the only one who has seen a picture of a jar filled with notes floating around facebook. The idea behind it is that at the end of everyday you write down something good that happened to you and put it in the jar. At the end of 2013 you empty the notes out of the jar and read them. I do not usually actually do these things, but decided to for once. Yesterday I sat down and wrote my first note and plan on doing another one today. I do not have any intention to do it every single day but maybe a few times a week. Instead of waiting till the end of the year to read them all I think I will just take one out when I have a bad day. My Jar with My 1st Note!

I'm bulletproof, nothing to lose Fire away, fire away Ricochet, you take your aim Fire away, fire away You shoot me down but I won't fall I am titanium You shoot me down but I won't fall I am titanium While listening to this song I realized how much it describes how I feel right now. 2012 has been a year that has really tested me, especially in these past few months. In March I lost my grandfather, I am very close to both my paternal grandparents, and see them at least twice a week. My grandpa was always positive, always telling me everything would work out. I miss him everyday, and it is hard to think of going in to a new year without him. And as you probably already know if you are reading this blog, I have been struggling with my health. When I entered 2012 all my problems were orthopedic, but the same does not hold true as I leave 2012. Accepting these acts have been really hard, and I probably could not have made it this far without my friends. During a month