Wednesday, August 17, 2011

The next several days, and school plans

Thursday: To University Hospital in Jackson for EMG/NCV and Nephrology appointment

Friday: Recovering from the EMG from hell. :( Also, a young man I'm mentoring starts college...will be waiting on egg shells for him to tell me about his first day. I'm so nervous for him but so glad he's going. I've known him since he was born and I can't believe he's in college with me now!

Saturday/Sunday: Resting as much as possible

Monday: Log in to my classes and begin the semester!!!

I had to make the trip to the campus to get my receipt from the business office and go to the bookstore to pick up books. Mind you, I am really in no condition to do this, but I survived thanks to the staff accommodating me with a motorized wheelchair and the bookstore clerk taking me to the front of the (horrendously long) line. She found my books for me and security even helped me with paperwork and getting in and out of the bookstore without mowing anyone down (I did slam into a wall while going in reverse, but you didn't hear that from me). I was completely unable to speak, so it was interesting to say the least. Thankful for caring people at JC today.

Hopefully I will only have to return to the campus three more times during the semester, for the two proctored tests and to turn in my books in December. I feel like I'm on track to get my Psych/History degree. The only thing I will be missing in general requirements when I leave JC is Finite Math and Biology, which I will dive into upon entering the university. It looks like they do a constant flow of short terms where I'm headed, which means I can take two short term classes at a time and still be considered full time. Great news, because that will allow me to finish my degree in five semesters once I transfer, which is a whole lot better than the eight to ten semesters that I was expecting. I'm really, really hoping this works out. I also confirmed that I can get my Master's there in a year's time, and I am going to go straight into it as soon as I finish the Bachelor's. How lucky am I to have found a university as close as this one is (less than 4 hours away) that has comprehensive Psych, Social Studies, and Post Secondary Ed completely online. Teaching Psych and History online is the goal now, and I feel like I am well on my way. I am of course concerned about my condition and the fact that I cannot always sit up and communicate, however, I refuse to let fear of the unknown stop me from pursuing this. My college experience has been stressful, but worth it and I am pressing on. I refuse to lay here and merely exist. I am going to do something with my life.

Prayers appreciated for this Thursday's hospital appointments. Need answers and help.


Wednesday, August 10, 2011


I discovered yesterday that I'm 1.5 lbs to goal weight. As always, this is the result of being very ill. While I'm happy to be nearing the weight that's ideal (health-wise) for me again, I'm never happy with how it happens. Nevertheless, I hope my condition will somehow improve and I can still keep the weight off. I don't count calories. I'm too tired. I have developed an extreme intolerance to many foods since my drastic decline...foods that I've eaten my entire life. It's really odd how my body is constantly changing in that way, and I hate it. I am having to nearly eliminate grains, tomatoes, and cheese, which are my three favorite foods. I have been lucky to find that Swiss cheese is naturally very low in sodium, so I can have that. It's sure not cheddar or mozz, though. I still have a lot of tomato-based foods in the cabinet and freezer, and I'll go ahead and eat those so I don't have to throw them out. I imagine I will still eat salsa in moderation, but I'll have to give up pasta and my whole wheat pizza pretty much for good.

This is of course the new development. I've had to eliminate a host of other foods over the past few months and years as well. At this point, I am pretty much reduced to low-fat, low-salt proteins and non-starchy vegetables. I still eat some grains and fruits in strict moderation, and to keep me from indulging in sweets that will result in HypoK attacks, I have given in to sugar-free goodies also in moderation. I drink nothing but water and tea, which I believe has been the biggest factor in my weight loss with the exception of ditching fast food. I've also cut down my portion sizes and eat only enough to take my meds (since I have to take them so many times a day, and supposed to eat each time). I still order from Gabe's, because I am good friends with them and I know they make everything as fresh and healthy as possible. For a little drive-in tex-mex joint, they are extremely health-conscious and I love that. Gotta have my taquitos every once in a while...a girl's gotta keep her sanity.

I am out of my mind, but I kept my college fall schedule. It is strictly online of course. I honestly can't afford to give up, and don't want to. So as soon as I return from Jackson, I will be diving into a year of Algebra and Humanities (Art History and World Lit) online through JC. Then it will be on to my Plan B (Plan C? Plan Z?) and transferring to university to major in Psychology, with a minor in Social Studies. I am actually really looking forward to studying Psych, even though it is not what I wanted to do with my life. The reality is that I am forced to attend college from bed, and if I manage to work again, it will also have to be done from bed. So the goal now is to get my Master's in Psych and teach Psych and Social Studies online at a community college level. I hope to have enough school funds left over to take some graphic design courses online as well through a continuing education module. I don't know how well I'll learn graphic design online, because I am a visual learner, but we'll see. Perhaps someone has photoshop, illustrator, and in-design tutorials on YouTube. I haven't even thought to look. Then again, I don't have Adobe on the Macbook yet so I'm not in a hurry. Hoping to eventually get my hands on CS5, despite it's ungodly price.

I'm liquidating art supplies and paintings to pay for meds. No sense in the paintings being stacked up in the way when people have inquired about them. Might as well make 25 or 50 bucks if possible. My potassium is over $100 a month and I currently have no income.

I put my Prismacolor drawing back on the table (yes, the one I started in drawing class a year ago). I opened my pencils and picked out the colors needed to finish it. I am still not able to draw as my arms are extremely weak, but I do want to try to knock it out sometime before I kick the bucket, please and thank you...

Thursday, August 4, 2011


It's not always good.

My condition has greatly progressed as a result of the April and May attacks. I continue to have paralysis, and my body feels so much more unstable than it used to...I can't even explain how unstable. There are days when I can't sit up for more than a few minutes at a time. I can't complete many basic every-day tasks anymore. I now have a weakened esophagus and I cannot always swallow or speak. My voice is gone at the moment, as my vocal cords are partially paralyzed as a result of the constant fluctuation of my potassium levels.

My life is so different now. Hard to describe, but the word prison comes to mind. I am bound by this disease, and I am pissed off. That's just the ugly truth. I hate my life but I'm fighting for it as best as I know how. Sometimes, I feel like I'm fighting alone, but I know I'm not.

On behalf of all who suffer with Hypokalemic Periodic Paralysis, I started the awareness album on Facebook. People can turn up their noses all they want. I am real, I am open, and right now, I am pissed off. And those who truly love me and care about my well-being are supporting my efforts and keeping me going.

Knowing that I would very likely not be in this condition had I been listened to and taken seriously over the years is down right despairing. This battle began when I was 12 years old. There are so many people with this condition who were diagnosed and treated in their youth, and they lead fair, even good and productive lives to this day. Instead, I've been ignored, shunned, mocked, falsely accused, mistreated...and now, I'm like this. I saw it coming, I made it known, and I was pushed to the side.

Damn right I'm mad.

I'm in battle for a life that has barely begun. It's not even a life that I like, but I am trying nonetheless. I grew up a timid, submissive, non-aggressive doormat, and now I see clearly where that has brought me today. It is disheartening. There is nothing I can do to change my past, but I will fight with all that is within me for the future.

I have to believe in purpose, because I believe in God. He still holds the blueprint in His hand. I don't see it and I don't understand it, but I believe in it. I am here for a reason whether it seems that way or not. I pray that my purpose will be fulfilled, whatever in the world that means.

May He be my strength and my help in this time of progression.

Tuesday, August 2, 2011

Not a real blog entry

I have a lot to talk about, but I don't feel like typing it all out right now. I'm just completely exhausted, and not well.

16 days until an EMG and Nephrology consult in Jackson. Can't get here fast enough.

My life is wasting away.