Tuesday, December 28, 2010


Went and got hair chopped off today. Can't do the long hair and school! Totally exhausted and my left leg has decided to feel like it's exploding. Joy. Watching Lockup. So exhausted. Cant sleep!

Wednesday, December 22, 2010

Dear SNL,

Thank you for re-airing the 2009 Holiday special! I laughed my butt off last night! My favorite skits include Adam Sandler's Hannukah song, The Carol of Intimacy (leave me alone, please go away, I'm doing fine, just get away), Mr. Robinson's neighborhood (as Christmas is a time for giving, look what Mr. Landlord gave me, it's an eviction notice!), and the one where Justin Timberlake is dressed up as that giant dancing cup of soup. Of course all of the skits were amazing, about half of the ones from the second hour were incredibly innapropriate, bit still funny!

Hope you all have a great Christmas!

Tuesday, December 21, 2010

New updates are fun!

Well, we have finally found where we're going next! I have an appointment with a pediatric rheumatologist in February. Not that bad, about a month and a half from now, but I really wish we could have gotten in earlier! I have never felt like we truly ruled out anything rheumatologic since the rheumatologist I saw just thought it was tendinitis from the violin that I hadn't touched in months. Yeah, thanks dude. I'm not totally convinced that it is a rheumatologic problem, I think it is probably neurological, but this doctor comes very highly reccomended, so hopefully he has an answer. If he doesn't, we probably will end up waiting forever to get into the Cleveland Clinic. But, this new rheumatologist doesn't need special insurance approval, for me to be able to get in there, which means that we don't have to wait a month for them to tell me they will cover it. It took them forever to approve a Fabry's disease enzyme test, so that is where we are at.

I'm taking another huge AP biology test today, so hopefully I do good on it! If I don't get at least a B, then I'm in deep crap. I think we figured out my testing problem, and I think I'm going to do fine. Turns out, the bio book's CD in the back actually helps you with bio! *headdesk* Can't believe I didn't figure that out in the first place.

Looking forward to this week, which is intensely busy!

Tomorrow or Thursday, my mom and I need to go and get me some shoes and both of us are going to look at some dressy type shirts (neither of us really have dressy type shirts) and in my everlasting battle to make my family understand that just because I'm sick doesn't mean I have to look the part (the only bad thing is then they actually think I'm not sick, which results in the "you don't need your cane" conversations) I will be doing my hair (which needs a bit of a trim by the way. Just looks a bit long when straightened.) a day or two before our Christmas Eve gathering. Then, the 23rd, I am going to my grandma's house to help her do some cooking, then I'm coming back on Christmas Eve morning to do the same (still can't sleep well enough to feel comfortable there all night) and then we have our family party that night. Then, as Christmas is a religious holiday, midnight mass (I will get trampled at 4:30 on Christmas Eve if we were to go then, and mornings + me+ the exhaustion I will probably be feeling+ needing to go somewhere that involves effort= reciepe for the world to explode. Of course I will be taking half a Skelaxin with my neurontin starting with my midday dose on the 23rd, through Christmas Morning (probably taking a whole one after mass) to prevent excessive pain for me which will cause my family to have to deal with my bitchyness, so it's a win-win situation.

Friday, December 10, 2010

Finally, we figured it out!

So yesterday I talked to the people at school, and we figured out a solution. I'm dropping German. I'm dropping orchestra at the semester. I'm dropping algebra II. I'm finishing this semester of government, AP biology, and AP English. At the semester I'm going into an E2020 math class, which is credit recovery to get 1 credit of math. I'm also going to bio and English. That's in school. Homebound, I'm doing economics and health. If this works, I'll graduate with my class.

Friday, December 3, 2010


Hi there! I'm just a girl who is fighting to be diagnosed!I am trying to get through school as well. Teaching myself, figuring things out without much assistance. Dealing with the brain fog that chronic pain gives! Trying to keep up with friends. All while finding the doctor that will finally tell me what has been plauging my life since November '09!

My interests include playing my violin, hanging out with friends, and just trying to get through life!

For those of you who do not know my sitiuation (which I am assuming is everyone), I will give you a synapse of what is going on.

So I woke up one morning last November, and I had a headache. Dull, achey, bleh. I took some motrin, and it went away. Then the headaches came back. Took tylenol, it worked. Eventually all meds stopped working around Christmas, and in January I ended up in the ER with a migraine.

 I saw a pediatric neurologist, and he put me on Topomax and Maxalt, which didn't do anything for the headaches, and higher doses of the Topomax made me have depression and anxiety. In April, I got horrible leg pains. They got so bad, I had to go to the ER. They gave me some pain meds and sent me on my merry way. I got the number of a new, adult neurologist. My pediatrician ordered X-rays of my legs and reffered me to an orthopedist who had a bone scan done and a veinous and arterial doppler. All tests were normal. My mom also scheduled an appointment with another pediatric neurologist, which was in June (we dumped pediactric neurologist number one)as well as the adult neurologist, but that appointment was in April.

The adult neurologist put me on amitriptyline. He reffered me to another musculoskeletal doctor in the same practice. That doctor did an EMG/NCV. I had also had a CT of my brain done in January, an MRI of my head in April, an MRI of my cervical/thoracic spine.

At some point during all of that, we went to see a rheumatologist. He told me I had bursitis in my left leg (my bad leg). He gave me a cortisone shot, and I started feeling better. He also tested for lupus and stuff. All normal. Then a week later, my left arm started to hurt. We went back to the Rheumatologist, and he put me on tramadol (which is a non-opiate opiate. A less severe opiate. We heard that from pediatric neuro number two. I was promptly taken off of it by him) and told me it was all in my head. Tendinitis. Caused by gripping my violin too hard. Dude. I hadn't touched my violin in A FREAKIN' MONTH AND A HALF!!! I told him that, but he didn't listen.

Tramadol did nothing. So anyway, left him and we went to adult neurologist and he reffered us to another pediatric neurologist. We went to her, the day after we went to pediatric neurologist number two(who put me on neurontin and upped my amitryptiline), so she told us to stick with him and she had no idea what was up. They reffered us to adult doctors that would not treat kids and stuff.

In the end, we went to see a new doctor at the local university hospital (the one who did the repeat EMG). He refered me to a neuropathy specialist. Well, that went really bad to say the least, and she told me that I had a conversion disorder. We called my therapist, who already evaluated me for that, who told me I didn't have it. Now we probably will end up at the Cleveland Clinic at the CRPS/RSD clinic. Every road has pointed at that condition.

Still have horrible pain control. Still need help from doctors to get through this.

Oh, I will refer constantly to the Spoon Theory by Christine Misederano, so please read that!

Thanks guys!