Sunday 21 June 2009

2:07 p.m.

I’ve never met a doctor quite like Dr. Ca___. He was the biggest jerk I’ve ever met. To start, all three “professionals” that came in to see me asked the exact same questions and ran the exact same tests (strength, motor coordination, et cetera). Then Dr. Ca___ asked me a lot of questions using a tone that suggested I was lying and wasting his time. After about ten minutes of talking to me as though I were a lying moron, he started attacking my weight. He was telling me to get bariatric surgery, which I wouldn’t do unless the situation was extremely out of control. Dr. Ca___ didn’t want to hear anything I said on the matter, he just repeatedly insisted that I have surgery. Dr. Ca___, the brain surgeon that would rather talk about weight surgery than brain surgery. No wonder he’s the “best” surgeon in the area, he refuses to accept any patient whose outcome is unpredictable (and in good favor, at that). After everything, he gave me a prescription for a CINE (short for cinematic and pronounced similarly) MRI. He completely ruined my day (Friday 22 May), and I cried the whole way home. He made me feel like trash.

On Thursday 4 June, I went to George Washington University for my CINE MRI. (Robert and I had decided I would go back to Dr. Ca___ only for the CINE results since he was so awful.) I showed up an hour early (which I was supposed to do, though I was only told about it the day before) only to wait the whole time. When I finally got to the machine, they told Robert to wait outside while they tested me in the machine – even though I’d told them I am extremely claustrophobic and do better with Robert in the room. When I saw the machine, I knew I was too large to fit inside. (I’m only 30 pounds under their weight limit.) It was visibly obvious I would fit inside, any idiot could have seen it. Still, I tried to go in, knowing it would be a 45 minutes procedure. I couldn’t lay my arms at my side, so they had to go on top of my torso. That was the second bad sign. The technician sent me in halfway, and I panicked. I knew I wouldn’t fit in any further, so I told her to get me out. She pulled me out, but she told me I had to go all the way in. I’m not sure why, but she would not let me get up. I wasn’t given the choice, so I went in again. The technician put me all the way in the second time, and I was panicking more and more the further I went in. The tube was so small that my arms were pressed into my chest, making it harder to breathe than the panic had already done. I started yelling at the technician to get me out NOW. She started pulling me out of the tube, and the top of it was rubbing hard against my arms. If I’d have been in that tube any longer, I would have gotten completely stuck. Zero doubts about that. After the technician actually let me out, they tried to convince me to undergo sedation! They wouldn’t even let me leave until I talked to the person who prescribes the sedatives – who tried to convince me to take Valium, which I’ve never been on before. (I’m very sensitive to medication.) I basically said no as politely as I could, and we got out of there. I guess Robert was supposed to carry me to the metro station if I’d taken the Valium. I don’t think we’ll be going back there – for anything.

At least I don’t have to go back to Dr. Ca___ now.

Saturday 16 May 2009

2:19 a.m.

I’ve gotten terrible headaches for as long as I can remember, and I’ve gotten progressively weaker over the last year. I’ve never been able to exercise for very long, because it causes headaches. Also over the past year, I’ve been dealing with vertigo, nausea, severe fatigue and balance problems, random stabbing and traveling pains, other weird sensations like things crawling on me and numbness, and ear problems (tinnitus, fullness) and eye problems (Posterior Vitreous Detachment in both eyes). I started having drop attacks (suddenly falling down with no warning) from sudden muscle weakness.

I finally got tired of being put into the wrong treatments, so I printed a list of my symptoms and took them with me to the doctor. I was tired of all of the little symptoms being overlooked in favor of the larger ones. Robert had also looked everything up online, and the closest thing he could find was Multiple Sclerosis. In the appointment with my doctor, he said he didn’t know what could include all of those symptoms, so I mentioned that MS kept coming up in the searches. Robert and I had done enough research to know I needed a brain MRI to rule MS out, so when the doctor mentioned it, I leapt on the chance. Dr. B___ also did a minor neurological exam and referred me to a neurologist, Dr. Ci___.

I had my first MRI on March 18. It was very stressful. Even though I had an open-air machine, I still panicked some. That MRI was on my brain, and it was with and without contrast.

After the MRI, I was given the films on a cd-rom to keep. Robert and I went home and looked at it immediately. We found pictures of brain MRIs showing lesions (people with MS) online and compared them with mine. We didn’t see any lesions on my MRI, but we knew we should wait for my appointment with Dr. Ci___ before we were sure.

Robert drove me to my first appointment with Dr. Ci___ on March 23, but I went in to the appointment alone. I took my cd-rom from the MRI with me and discussed my symptoms with Dr. Ci___. He did a more thorough neurological exam on me, including testing my balance and strength. After all of this, Dr. Ci___ finally explained what’s wrong with me: I have a Chiari Type I brain malformation. (Chiari is pronounced key-are-ee.)

Chiari Type I, also known as Arnold Chiari, is a malformation of the cerebellum. The most basic description is that my cerebellum is descending through the same hole in the bottom of my skull that my spinal cord goes through. the spine, spinal cord, and cerebellum all get cramped together and weird, sometimes even funny, things happen.

Chiari has been causing all of the symptoms I’ve already mentioned, plus other symptoms I’ve been having, like twitching (sometimes small, sometimes seizure-like) and aphasia (getting words mixed up, stuttering, getting stuck on one word or phrase). Not all doctors agree on which symptoms are or aren’t from Chiari, but patients agree that there are over one hundred possible symptoms. When the brain is involved...

Dr. Ci___ ordered two more MRIs for me, cervical spine (neck) and thoracic spine (between the neck and lower back). I had those MRIs on April 4. I was allowed to play my own cd, so I chose Violator by Depeche Mode. I was much more calm this time. These two MRIs were ordered to look for a condition most often related to Chiari, called Syringomyelia. I won’t go into that condition, since I do not have it.

In my initial appointment with Dr. Ci___, he told me that the only real treatment for Chiari is surgery, called Posterior Fossa Decompression. It involves removing bone at the bottom back of the skull and replacing it with a plate that allows more room to reduce crowding. Some doctors also open the dura and put a patch over it, but I will be opting out of that portion if my cerebrospinal fluid (CSF) flow isn’t blocked too badly. I wanted to get a second opinion on whether or not I needed the surgery, so I made an appointment with another neurologist, Dr. Ch___, on April 15. He confirmed the diagnosis and the need for surgery. He also ordered another MRI that I asked for.

My fourth MRI (but the third session) was for my lumbar spine (lower back) on April 28. This time, I was used to the routine, and I enjoyed Depeche Mode’s latest album, released only days earlier, Sounds of the Universe. I wanted the lumbar MRI to be sure that I didn’t have a syrinx (Syringomyelia) in my lower back. I was also looking for the bottom of my spinal cord to be completely sure I have Chiari Type I instead of Type II.

I had my next appointment with Dr. Ci___ on May 4. He reconfirmed my need for surgery, noted that I don’t have Syringomyelia, and referred me to the top neurosurgeon in this area, Dr. Ca___. That’s where I’m standing right now.

As a side note, Dr. Ci___ ordered a sleep deprived EEG due to my seizure-like twitches. He thought I might also have epilepsy. I completed the EEG on March 30. I was not diagnosed with epilepsy.

I’ve known since I was a very young child that something big – and bad – would happen to me, my body. Maybe I sensed the Chiari, or maybe I just noticed at a young age how many people seem to get cancer, break bones, and deal with other major physical problems. Possibly, I remembered (in the very back of my mind) that Momma had melanoma (skin cancer) when I was three and a half months old.

Being diagnosed with Chiari seems to have thrown everything for a loop, understandably. I have to get my head cut open, and that’s just scary. I’m not allowed to lift more than fifteen pounds, not like I can any more, anyhow. I’m not supposed to bend over. I’m also not supposed to go up or down too many stairs at one time. All of these seemingly unrelated things aggravate Chiari.

I’m doing the best I can for my health right now. Robert’s taking very good care of me and not being overbearing. The cats are even behaving half the time.

I have my good days and my bad days. On a good day, I can use the exercise bike for thirty minutes straight and go up and down the stairs without using my cane. On a bad day, I have a hard time getting out of bed due to fatigue, weakness, or headache. I can’t leave the apartment, and I don’t get anything done. I do the best I can with what I’ve got.

I know I’ll be fine after surgery, but dealing with that and everything around it (school and moving, to name two) is very stressful. I’m trying to find new ways to deal with my stress, but not a lot is working. I can only live hour by hour right now.

Monday 12 January 2009

8:54 a.m.

Today is the first day of the new semester. I’m finished getting ready, and I have time to spare since my first class has been cancelled for the day.

I’m so nervous about this semester. For one, I’m taking Precalculus, Accounting I, Geology, History I, and English. This is also the campus that I want to attend for the rest of my time at NVCC, so through Spring semester of 2010, including this Summer. I really want to like the campus and the people there.

I’m not looking forward to precalc, but I know that I’ve got the tutoring at school and Robert to help me. So as long as I work hard, I should be just fine. I’m definitely nervous about accounting, because other than one chapter in my Introduction to Business book (that I didn’t do so well in – the chapter, I mean), it’s completely alien to me. I’m looking forward to geology, even though I don’t like lab work. (There’s even a voluntary field trip to one of my favorite parks!) I’m not looking forward to history, plus I’m confused about it. Required reading includes Selected Canterbury Tales by Chaucer and The Prince by Machiavelli. I’m so confused! Last, I have English (composition). I’m very mixed about it. I know I can pass pretty easily as long as the professor isn’t psychotic, but I hate writing papers. Then again, I found my favorite movie (Onegin) because I had to watch it when I took English at Louisiana Tech. Very, very mixed.

Wednesday 31 December 2008

2:47 a.m.

I did a few big things this year, but I can’t think of many smaller ones this time.

Some time around April, I became a vegetarian. I’m still learning about vegetarianism and making one change at a time. For example, I’ve recently begun only buying shoes that are not made with leather. I’ve decided to be a lacto-ovo-vegetarian, at least for now. I want to work on things like cutting out leather and making healthier dietary choices before I restrict my diet further.

Robert and I started volunteering for Alley Cat Allies over the Summer. We had been procrastinating on getting physically involved, but when the situation came up at Meadows of Chantilly, we knew it couldn’t wait any longer. We did a couple of trappings and we helped build shelters and feeding stations. We also ran the booth a few different times at various expos and conferences. I would love to volunteer more, but most of the opportunities are in the office (in Maryland) or at times when we‘re both busy.

I also (re)started college in August. In December of 2007, I decided to go to college. I initially decided to teach English, but then I realized how homicidal I would be after dealing with teenagers every day. From there, I decided to become a veterinary technician. At least, until I realized that I would strangle the first person that wanted to declaw their cat. I decided that I would work with people and volunteer with animals after that.

That’s when I settled on nursing, and it’s also when I applied for school. I took one class, Orientation to Health Care, during the first eight weeks. When the class was winding down, I found out that I would have to dissect a fetal pig in one of the prerequisite classes for nursing. I realized that I could never compromise my morals to get a career in anything, so I decided to change my major to Business Management with a specialization in Health Care, an Associates degree that would stand on its own.

Before I could officially change my major, Robert decided that he wanted to go back to college for a double masters this coming August, so I tweaked my major a hair more, to an Associates degree (Business Administration) that will allow me to directly transfer to a specific four year college upon completion. The following Bachelor’s degree will be Business Administration as well, only with a specialty. I haven’t narrowed that down yet, but it certainly won’t be economics or accounting!

4:49 a.m.

I’ve been thinking about what’s happened in the past few years. In August of 2005, I quit smoking. In November 2006, we moved out of a dangerous neighborhood and into one we fell in love with. In December of 2006, I came across a disturbing picture (while trying to name a specific type of monkey in our pictures) that led to me the beginning of my education about animal testing.

In 2007, I learn a lot more about animal testing, and I began learning about other forms of animal abuse, like declawing cats and chaining dogs. I also started learning about the cruelty in the fur industry. It was also in December that I made the choice to go back to college.

Then, of course, there was this year, where I became a vegetarian, Robert and I started volunteering, and I actually started college.

6:02 a.m.

I’ve mentioned internet celebrity gossip, notably (maybe only) around this time last year. In 2006, internet gossip took up most of my time – and I didn’t even find it interesting. I decided that in 2007, I would cut down on it and not read everything I came across. That was successful, so I decided that in 2008, I would cut way down and only read what seriously interested me. Success! I can’t remember the last time I read ANY article that wasn’t worth my time. So it didn’t just work on celebrity gossip, it worked on other things as well. I guess I got a bonus.

9:55 a.m.

I’ve decided to give up drinking alcohol in 2009. It’s not a big deal, though; Robert and I drink twice a year – IF that. Neither one of us believe in getting drunk, or even buzzed. Personally, I don’t like having my senses dulled. We’ll still use alcohol occasionally cooked in a meal, I just won’t drink the stuff. It’s pointless; I’d rather spend the money on cds.

10:03 a.m.

As far as I know, 2008 has been a rotten year for pretty much everyone, including myself. It seems that the harder I try to take care of myself, the worse I get. I’m in terrible health compared to this time last year, even though I’ve been making healthier decisions. I even weigh almost twenty pounds less than last December.

I know that 2009 has GOT to be better than this. I’ve already begun to feel much more motivated and focused than I have during the year. Here’s hoping that my energy will pick up soon, too!

Tuesday 16 December 2008

9:10 a.m.

What a crazy couple of weeks. This past Wednesday we were rearended, Fate’s sick, and my finals and projects are all due last week and this. Things are quite hectic around here.

1:30 p.m.

I dropped off Fate’s urine sample at the vet on my way to school. I really hope they know something by six or seven tonight. I want my boy to feel better as soon as possible. I HATE being at school when he’s sick. At least he gets to spend the day in the Master Bedroom. He’s always loved our room, but he hasn’t been let in since January of 2006.

Sunday 30 November 2008

6:44 a.m.

I feel like the year has slipped away from me, especially since September. I really need to learn more and better time management techniques. I feel like I’m not getting anything done even when I am, probably since I have so much that I want to do.

I think the first and most important thing I need to do is work on my discipline and willpower. There’s not really much I can do in that department other than force myself to work even when I don’t want to. It’s alright, though. I feel a surge of motivation coming. Obviously, or I wouldn’t even be writing. I think the motivation I feel is my usual start of Winter motivation. It tends to kick in when my body (not the calendar) tells me that Winter is here.

I’ve been losing weight little by slowly. My average weight for September was 261.5, and my average for October was 259.7 (when my goal was 260). I set my November goal at 258, but the average has turned out to be 256.4. I haven’t really been exercising since my plantar fasciitis in my right heel doesn’t like it when I do, but I have been adding a little physical activity to my day. For example, when my back isn’t hurting, I park as far away as I can from my classes so I get to walk farther.

Monday 29 September 2008

8:13 a.m.

This is the first morning in weeks that I haven’t woken up sore, stiff, or both. It definitely made a good start to my day.

Robert and I rearranged the bedroom a couple days ago, and we love the new layout. It’s somewhat unconventional, but it works quite well. We both got tired of the five foot long dresser sitting in front of the five foot long window, so the dresser is now being used as a footboard for the bed, which is another plus. The windows aren’t being blocked any more, and the energy in the room feels so much better. We were also able to create a makeshift vanity out of a dark wood tv tray table and a chair, so we were able to place the vanity I don’t have yet as well. I’m very happy with the new arrangement.

I’ve decided that I’m going to start doing habits each month again, though I’m not quite doing it the Fly Lady way. Instead of having a habit that is simply “brush my teeth”, my October habits will be “Before Bed Routine” and “Morning Routine”. The habits are going to include everything on the list and the times I’m supposed to do them, 8:30 – 9:30 p.m. and 4:00 – 7:00 a.m. respectively. November will continue to include my Before Bed and Morning Routines; it will also start my “Cycle for 15 Minutes” and “Physical Therapy Exercises, 2 Sets of 5 Each” habits. December will continue to include the two routines while moving to “Cycle for 30 Minutes” and “Physical Therapy Exercises, 2 Sets of 10 Each”. The cycling habit will grow until I’m at an hour, and the PT exercises will advance until I’m at two sets of twenty five. If I seriously fall off my habits in any given month, I will revert to the previous month’s habit set for the remainder of the month. Then, I’ll add the new habit back in again on the first of the next month. I plan to keep up with my habits on the same calendar that I write my weight on every morning. If I complete both habits that day, then I’ll highlight the date. At the end of the month, I’ll determine whether I did a good enough job to proceed or I need to stay at my current level another month. I’m actually looking to it.

There are three meetings of my Orientation class left. I’ve learned to much from this class, but it has been HELL. My group presents our PowerPoint presentation on dental hygienists tomorrow. While I find that I’m not really afraid to speak in front of the class (a total of 60 students), I am having difficulty learning the material. I’m pretty sure that has something to do with the fact that I have zero interest in the field. I just can’t bring myself to truly care, so I’m going to have to fake that park. I finally finished the group paper for that project yesterday; now I have until October seventh to finish my own paper. (It’s on nursing.) I also have an extra credit paper to write, four chapters to read, and ten chapters to take notes on. Plus, my group has another presentation to give on October seventh. I’m trying to get as much as possible out of this class, so I’ve been doing even more than is asked of me. If I’m going to pay over seven thousand dollars for an Associate degree from the smallest campus of the second largest community college in the country, then I’m going to get my money out of it. I’m noticing that there are things even n this orientation class that will help me pass the NCLEX. What on Earth could that be? Well, it includes information on time management for one. For another, it has quizzes to find my learning style and tips to help me maximize it once I know what it is. All of this hard work is not lost on me; I truly appreciate it. I just would have preferred it not all be crammed into eight class meetings!

Thursday 25 September 2008

4:44 a.m.

It has been extremely difficult for me to adjust to school. In addition to the fact that I haven’t been in school for six years, there’s the fact that I haven’t really been around people in four years. Even being on campus one day a week is a major change for me.

The one class I’m taking is not making the adjustment easy, either. It’s a one credit orientation class that meets a total of eight times, and we’re expected to do a group presentation on a current medical event, a group PowerPoint presentation on a health care career, an APA format paper to accompany the PowerPoint presentation, an individual APA paper on the career we’re trying to get into, book work, class discussions, and there’s an opportunity for extra credit that requires an APA format paper as well. I’m not sure how the professor planned to fit any teaching into the last five classes, since there are 24 presentations for the class to give over all.

I’d love to say I’m doing wonderfully, but I’m not adjusting well at all. I had planned to finish the group paper two weeks ago today, and I’m not even completely done editing it. I haven’t started my individual paper other than checking out some library books. I barely have time to breathe, and I’m not procrastinating much at all. I haven’t even had time to observe my religious days, and it makes me sick.

Tuesday 26 August 2008

8:55 p.m.

I went to my very first class today, and I realize I’ve already made my first mistake. This is an orientation class, so naturally (to me), that meant it would be along the lines of “Hello. This is college. We’re going to teach you how to study!” Oh, wrong, so wrong. That’s what I get for basing my expectations on previous experiences. It was much more like a crash course in everything we’ll be doing throughout school.

I’m not complaining at all; it’s much better for me to deal with all of this now than to later suddenly realize what I’ve gotten myself into and want out. This is a much more realistic approach that I will learn so much more from.

I’m really glad I’ve only got this class right now. It’s an eight week class, and there are three major projects and at least two minor projects. We’ve been put into groups for two of the major projects. I shouldn’t say we’ve been put into groups, since we chose them ourselves. I’ve become the representative for my group, so I get to keep everything together and everyone connected. It’s usually what happens when I do group projects, but this time, I don’t really mind. In fact, I like it a little bit.

The first project is a Power Point presentation plus a paper, so Robert will be giving me a crash course this weekend. It’s a group project on a healthcare career. We’re due to present this project on September thirtieth.

The second project is about current events in healthcare. We have to make a presentation about a published article and field questions. My group is scheduled to present on October seventh.

The third major project is for individuals. It seems to be similar to the first project, only much more personal. Those are due on October seventh as well.

One minor assignment is email-based. It’s a “getting to know you” piece that’s due on Friday. The other minor assignment is a take-home quiz that we’ll get later. Then, of course, there’s everything we’ll be doing in class. I’m definitely going to get my tuition’s worth on this one!

Wednesday 20 August 2008

12:48 a.m.

Robert and I woke up at three thirty on Monday morning, and we left at five. We thought it would take us until six, but we arrived at the airport around five thirty. It felt so odd dropping Robert off and returning home. We haven’t been apart over night since before we were married, and I’ve never been completely alone over night.

I watched Netflix movies on the Watch Instantly section all night Monday. I wound up passing out in bed around four on Tuesday morning. Then on Tuesday, I woke up very late and got nothing done but laundry.

I’m actually about to go to bed (from Tuesday), so hopefully tomorrow (technically today) will see a lot more getting done.