it occurred to me tonight that i might never be normal again.

i might always have these headaches.

i might always be tired from all of these pills.

normal life couldve ended in early october for me.

i was starting to do better last week, but for some reason i started to take a downward turn a few days ago.   had an appointment with my IM today.  since things have gotten a bit worse lately, he requested that i come back in a week. :(  next week i have appointments with the neurologist (monday), ophthalmologist (thursday), and the IM again (friday).

right now i’m on five different medicines.  i’ve started marking my medicine bottle caps so that i can quickly find the ones that i need. its kinda sad when you start having a graphical set-up for all of your pills.

i’ve had a headache all day.  its just this constant pain that just wont go away.  it gets worse if i stand up too quickly or go from sitting on the floor to standing up.  i just get really dizzy and almost fall over.  my mom took me out to walgreens today to fill my prescriptions. afterwards we went to the grocery store. i felt really terrible. i kept walking into her and walking on her feet (i have to stand close to her left side so i know i dont walk into things that are on my right side).

i’m just starting to get very frustrated and depressed with all of this.  why did this happen to me? when will it go away?  how am i suppose to live my life with this if it takes years to go away or doesn’t at all?

so im trying to catch up on all the things ive missed in the past two to three weeks and its going slowly.

i was reading dear abby when i got the thought: i really love my bunny.

my jim is the most perfectest perfect person ever. he gave me a great anniversary present the weekend before we went away.  he took a lot of time and care into making sure it was a great big secret surprise for me. although i was sick, he took great care of me. always stopping and taking breaks with me during our busy days and letting me sleep in in the mornings.

it was him (and my mom) that pushed for me to go to the er when i went. i wanted to wait until the morning (which i think my mom would’ve agreed to). he just said “no. now.”  while i was there, he took off that first night and spent most of his time with me.  on sunday, his first night off, he stayed with me.  the poor thing couldnt get comfortable in a given recliner and he stayed up all night.. by 9 or 10ish, he just gave up and moved some things around, laid a sheet on the floor, and slept on the floor to be by my side.

every night when he comes in, he wakes me up with my pill and my water and tells me to take it. on my little white board, i had been putting a check mark next to the times that i had to take my pill.  the next day, i noticed that my 11.30 one had a check mark and a “given by jim” written next to it by jim. :)  each morning he sets the alarm for 7.30 to wake me up to take my morning pill.. i never hear that alarm, but he makes it snooze and i get up at quarter til. he doesnt complain, he just makes sure im definitely up by 7.45.

he’s just a very good man. i love him more than words can describe.

ok, not really, but very damn close…

so ive been really sick for the past month now. everyone thought it was a nasty sinus infection and ive spent the majority (27/31) of october on antibiotics for a sinus infection.. i had the sniffles, headaches and pressure, and some problems with my ear (i could hear my heartbeat and things sounded muffled like i was underwater). however when i started loosing my eye sight two weeks ago, it became apparant that it was a hell of a lot more than a sinus infection.

at first, my doctor wasn’t all that concerned that i was having dark blurry spots in my vision, just keep taking the antibiotics. by the mid/end of october, she gave me a new one and said “take this for the weekend and if youre not better, come back monday.” i went back tuesday (28th) and my eyesight was much worse. she told me to go to the er.  i made the mistake of going to casa grande’s er, something that ive heard multiple times was a bad thing to do.  after being there for 6hours, i was told its just a sinus infection, take these new antibiotics, but just to be safe about the eye, make appointments to go see a neurologist and an opthamologist.

i managed to see an opthamologist on that wednesday i believe. by this time my sight in my right eye was extremely poor.  they did a test on my peripheral vision and i basically had none and it was only getting worse. i was EXTREMELY lucky to get one who comes into that office only 2times a month and also had a background in neuro-opthamology. he informed me that i had idiopathic intercranial hypertension (IIH) and i had to see a neurologist IMMEDIATELY to get it dealt with.   idiopathic intercranial hypertension means that for some unknown reason my head has high pressure, in this case, of spinal fluid. this is the “new” name for it and it was previously called (and still called by many of my doctors who are still used to using this term) pseudotumor cerebri. pseudotumor cerebri of course meaning a fake tumor in the brain.  the brain does not have a tumor or a lesion of any kind, but it acts like it does and mimics the process and symptoms of a brain tumor.

i was told that in cases where there is IIH there is a 90/10 percentage.  90% of the time the reason is unknown and 10% of the time the reason is a brain tumor.  i had done two ct (or cat) scans, one mri, two spinal taps, and multiple tests on my blood and urine. several times a day i would have the nurse come in and take my vitals. if there was a test they could do, they did it. all of the tests they did were to determine if i had a tumor. they all came back negative/normal. i abso-posi-lutely do NOT have a brain tumor… but my brain just wants to act like it does.

so they finally discharged me after five days. they gave me a perscription for the meds they had given me in the hospital; they help to keep the pressure down. they also gave me pain medicine for my headaches if/when they come back.  i had some pretty nasty ones in the hospital (which got me morphine. morphine! i thought they’d just give me tylenol 3 or something).  im to do follow ups with the neruo and the opthamologist and also with my internal medicine / hospital doctor. he was totally kick ass.

they really all were.  one of the “problems” we did run into was that many of my doctors had the same last name of “khan,” so we just quickly started calling them “khan 1,” “khan 2,” “khan 4,”. (yes, to their face; that way we knew right now im talking to khan 2, the neurologist).  khan 3 said “don’t call me 3, just call me hassan (his first name).” i lucked out because my opthamologist said he had a partner with the last name of khan, so there was almost a fifth one.

they pretty much told me that its like high blood pressure.  not really easily curable, but managed with medication. i just get to take my medicine from now til god knows when. i cant drink and i cant smoke at all. both cause increased fluid production and my body just cant handle that and get rid of it. i need to keep on working on losing weight and keep going to the gym.

the neurons in the eyes are extremely sensitive and take a long time to heal. it will be roughly six weeks before i get my vision back. the neurologist and the opthamologist both were extremely hesitant to say that my eye sight will come back completely 100%. they both emphasized that there is a decent chance that there will be some permanent damage. the IM doctor said it would be slow, but he believed my eye sight will return to normal.

so far ive been experiencing almost all of the side effects from my new pill. mostly tiredness, upset tummy, and tingling (like pins and needles when your foot falls asleep) in my hands, lips, and feet.

the worst part is that it could come back. so i really need to make sure that i take my pill and stay away from smoking and booze. i just really started smoking back in may, so neither are much of a problem.  the worst is just the fear that it could come back at any time and so quickly and then BAM! i’m back on my side with a needle in my back to drain out two tablespoons of my spinal fluid.

i stopped and talked to one of the people at my school today. her name is liz and she is just the *nicest* woman ever. i told my mom today that liz has to be the nicest person ive met since we moved here. liz is the curriculum director for my school. she is the one that hires professors and makes sure that our curriculum at our distance campus matches the one at the main campus.  well, she was really worried about me and has called me several times since ive gotten sick. she told me today that she thinks it would be best if i took off the rest of the semester and focus on getting better. the two classes that ill end up leaving, ill have to merge into my schedule next year. i have absolutely no problem doing that.. in fact i kind of want to.. my mom on the other hand, thinks that i should start going back to my classes right away. she worries about what will happen next semester or next year if all of this happens again.   there is just too much to think about.