Monday, November 16th

Me on November 16th, 2015 at 10:09 PM
Me on November 16th, 2015 at 10:09 PM

Hello everyone! How was your weekend? Mine was… below average. Thursday I vomited twice – so that sucked. Saturday, we met the dog trainer at the local park and near the end of the session, I had a seizure. Yay. I was unconscious for a bit longer than normal – a bit over 30 seconds and I had some minor convulsions (head bobbing). Talked to the neurologist today and he is calling in a higher dose of one of my seizure meds to the pharmacy – I see my local oncologist on Wednesday and will discuss the seizure with him. So, hopefully nothing will happen Tuesday or Wednesday, so hopefully my update on Wednesday will be relatively uneventful.

Talk to you on Wednesday!

Monday, July 6th

Me on Monday, July 6th, while watching Let's Make a Deal
Me on Monday, July 6th, while watching Let’s Make a Deal

So, the past few days have been okay. The new dosage of prednisone isn’t that bad – just makes me a bit nervous before I have to take it, because, well, 50 mg tasted horrible. 4×10 mg is much easier than 1×50 mg. So, on Friday, I was very tired from the Methotrexate. On Saturday, I was pretty tired, but my stomach was not very unsettled, so I had a cheeseburger for dinner, it was very good. Yesterday, my family (My parents and my brother) and I went out to look for a pet to adopt. We are most likely going to adopt a dog, but we are in the beginning stages of looking at animals to adopt. We’re going to adopt either from a rescue, or the Humane Society or ASPCA, because adopting from breeders and puppy mills are just ugh – and anyway, mixed breeds are just healthier.

So, yesterday was my town’s fireworks (They don’t do it on the 4th because it’s cheaper not to) and it was enjoyable – I might’ve stood for too long talking to my cousin (and updating her about how I am doing with treatment), so my spleen & legs were a bit uncomfortable after standing around for a while – but nothing that lying around after getting home doesn’t fix. Also, I ate a bit of funnel cake. Unsure as to how wise that was, given my recent eating habits, but ohmygod it was so indulgent and crunchy. I think the prednisone at a lower dosage is trying to make me gain weight – I keep having the urge to eat salty things, which I know is bad, because it will make me swell up like a balloon. Evil prednisone. I don’t want to swell up. Last time I did, my feet turned purple. Let’s avoid that.

My Monday is going well so far. I am watching The Price is Right (it’s 11:10 AM) and I am about to take my prednisone soon. Ate some frozen organic Maple Waffles from Whole Food this morning. They were pretty good. They had little chunks of like crystallized maple scattered throughout the waffle. Yum. For lunch, I had egg and cheese on a hard roll and for dinner I had a hot dog with a pretzel bun. It was pretty good. So my Monday has gone well. It’s now 6:53 PM on Monday.

So, last night I was talking to some people and they said that I should start posting random medical facts about myself, because apparently they are interesting. So here’s some fun facts:
1. I do not remember any dreams that occur. I just fall asleep, then I wake up when my alarm goes off. No dreams are remembered. The best theory by neurologists? Well, they’ve seen a small spike in electrical activity during EEGs – it is a generalized (aka all across the brain) spike that lasts about 3 seconds, and usually occurs once a night during REM sleep. It was rather odd.
2. A frequent phrase I hear from doctors? “This is very interesting. I have only heard about this in medical journals/textbooks/medical school!” It can be entertaining. At least the doctors don’t call me a miracle like all of the nurses do – that gets a bit boring after a while.
3. My first neurologist was a very good, but very eccentric man. He loved my case because it was so odd. The guy is very eccentric – he is licensed in pediatric neurologist, adolescent psychiatry, and clinical genetics. So, his interests were varied, to say the least. Every time I would see him, he would have me do the standard neurological tests, along with some other stuff. Then he’d turn to whatever parent drove me there and say “Okay, now you do it!” He really liked to see my parents do the activities, I assume that ties into his genetics background. He was a *great* neurologist. He still practices here in NJ, but he doesn’t see patients with epilepsy, as far as I know – too much risk, and he has a kid who is like 10 years old now.

So, that’s it for now. I’ll post again on Wednesday. Not much is going to happen, so the next blog post might be a bit shorter than this one :P.

Other things I will post about on this blog.

Obviously, I have other interests than my current medical issues. For example, I hold a Bachelors of Arts in Special Education – I am a certified teacher in the state of New Jersey in Elementary Education (K-6) and Special Education. I’ve been looking for a job since I finished student teaching December 2013 – but I was unable to start looking until March 2014 (Yay for wisdom tooth extraction & the state taking a while to send out my license?), so I was looking for almost a year until we found out about my cancer – so the job search as been temporarily suspended. It’s a shame, too, since this is when every school starts to post jobs, as it is nearing summer (even though schools in NJ don’t let out until the middle or end of June, depending on how many snow days were scheduled).

So, I went on a bit of a tangent there, but a necessary one to provide some more background info on myself. Some interests I hold are genealogy (aka family history), which I have been interested in for around 5 years – my family tree is a bit… hard to research, so not much progress was made until recently, when I got an subscription for a nice discount ($99 for their world membership for 6 months of access). The farthest I have traced back is to a couple on my mom’s side, who came from Baden-Wurtemburg and were born in the 1820s-1830s.

Another interest of mine is special education & advocacy. I have a lot of personal experience with special education, given my multiple disabilities, I have been through almost the entire continuum of special education services* – self contained, partially mainstreamed, resource room, general education, inclusion, and adaptive PE (A special form of gym class for those who cannot perform well in a regular gym class). I am very interested in advocacy for those with special needs due to the fact that I was not treated very well K-12, as after I was taken out of the self-contained classroom, the district failed to comply with the law (A fact my parents never knew, until we got my special education records after my HS graduation), which resulted in me being unable to even write my name legibly.

I am also interested in advocacy for people with disabilities in general – I know a great deal about SSI (Supplementary Security Income, a service the United States Social Security Administration offers for people with severe disabilities to have a small stream of income) – as it took me 30 months to qualify for it, to the point where I had to convince an Administrative Law Judge that I was disabled enough to qualify for SSI (Sort of a catch-22, when one of the reasons you are applying is because of anxiety). So if any readers of this blog have a question about genealogy/family history, special education, special needs advocacy, or just anything regarding education in general, feel free to post a comment and I should reply within a few hours, unless I am sleeping, or at the doctors.

*The continuum of special education services consists of the folllowing placements, from least restrictive to most restrictive (However, the most restrictive might be the least restrictive for a student with a disability, based on their needs. This is different from the term Least Restrictive Enviroment, which all students with disabilities are guaranteed to per IDEA, the Individuals with Disabilities Education Act)
Placement with nondisabled peers (general education)
Inclusion (A special education teacher comes into the classroom, teaches either a few classes or the whole day with the general education teacher)
Resource room (A placement where the student is split between gen ed/inclusion and a room with other disabled peers where they learn under the instruction of a general education teacher)
Self-Contained (The student spends 60% of more of their day in a classroom taught by a special education teacher – they might leave, or be mainstreamed, for one subject, such as language arts. They typically share subjects such as computers, art, etc. with nondisabled peers, along with lunch)
Homebound Instruction (Typically given when a student is too ill to attend school OR a doctor determines the student is unable to attend school and would function better if instructed in their home. Some states allow cyber schools to be their method of instruction, others require a teacher to come for 1-2 hours a day after school and instruct the student)
Out of District Placement (District pays for a student to attend a private school for students with disabilities, which tend to have excellent care, but are targeted for specific types of disabilities, so you might have a school just for students with autism, one for students just with learning disabilities, etc.)
Residential Placement (Think boarding school, but just for students with disabilities)