Saturday, April 28, 2012

Recap, Retrospect, Regret, Rejoice, Rinse, Repeat...

My college career has ended.

But let me reminisce for a while if you don't mind. I have a lot to get out of my system.

My semester went out with a bang. Despite being online, it was very difficult physically. But academically, it ended strong thanks to my four instructors, who were accommodating of my hospital appointments and bouts of paralysis. They extended deadlines, let me make up tests that I missed, and I ended up passing with flying colors. I really owe my Algebra teacher especially, as she went far out of her way to make this happen. I am more grateful than I can express. Truly grateful.

I am still amazed that I was able to accomplish all of this from my bed. The ability to learn online, especially when one is too disabled to sit up at a desk on campus, is a tremendous gift. It gave me a reason to get up every day, and on days I couldn't, I laid on my side in bed and typed with one hand. You know what they say about life giving you lemons. I made lemonade, darn it. I made as much lemonade as I possibly could.

The little bit of time that I spent on campus over the past few years was very risky. Thank God nobody had to call an ambulance for me. It was close on several occasions. No one will ever know how difficult it was for me to be there. It got to the point where I didn't even have the strength to put pillowcases on the pillows I dragged into class each day. That's pretty pathetic, but I desperately did not want to give up on my dream of making it through that course. Hell or high water, I was going to make it or die trying. I meant it, and my stubbornness was probably (ok definitely) obvious. In spite of the fact that my instructor became frustrated (who wouldn't, I guess...I know I'm not easy when I'm in this condition), he extended grace to me throughout my attendance and I will always be thankful for that. Lord knows I had my moments of frustration as well, and made some mistakes in the social realm. I regret joining the art guild, and I also wish it had never been told that I was an instructor. Life would have been a little easier had I stayed quiet in my little corner, in my opinion...for me and others. I wanted so much to help and make a positive difference while I had the chance, but operated with anxiety and urgency because I knew my time was short. I've discovered that I'm not alone in how my brain works...seems like this is a common trait among the chronically ill. Nevertheless, those who are healthy don't "get it", so there will inevitably be annoyances and misunderstandings. I never intended to be a problem to anyone, and it hurts my heart to think that I might have been. Hindsight is hard to embrace, but I suppose there's a lesson in there somewhere. I wish everyone the best.

How happy I am to have survived the classes, though. I still cry if I think about it too hard. I've wanted to be an artist since kindergarten, and have said since high school that I would take the drawing and design classes at JC. Three attempts later, I finally did it, and no one can ever take that away from me. I hope someday I will be well enough to visit the studio and perhaps audit or just observe. It is therapeutic to me to be there, even if I'm only admiring everyone else's stuff.

When I became too ill to do anything else, I began taking online courses part time. Rocked History, as I always do, but Psychology...WHAT??? Where did THAT come from? It came from the leftest left field in the history of left fields. It came from the parking lot behind the leftest left field. I had no idea I would love Psychology, much less kill it and want to pursue a degree. If somebody had told me four years ago that I would even be talked into taking the intro class, I would have laughed in their face. What an unexpected development, and I'm absolutely devastated that I cannot pursue that degree. I had a plan mapped out and everything - Psychology and American History Post-Secondary Education. I wanted to be an online college instructor. I wanted my Masters or maybe even my PhD. I could have revamped Art W/Heart and done mentoring and therapeutic art again on the side.

I had a plan. But apparently, it's not God's plan. At least not right now.

I'm being forced to give it up. I am too sick...and I have been urged to apply for Social Security. A college education is useless if I'm dead. They're right. I have to take care of my current situation, and that means getting on Disability, SSI, and Medicaid. Anyone who knows me or has followed my story for the past year knows I am 100% disabled. I am bed-bound most of the time. I have worked so hard to overcome this disease, but the reality is that I am losing the battle, and losing it badly.

Getting Social Security means no financial aid for college, even pursuing an online degree from the confines of my bed. They are not with "the times" so to speak, so I've been informed that my pursuit of a future is over. Disabled means just that, and I truly am. This disease is not going away...it is real and progressive, potentially deadly, and I am currently at my worst. I know my goals were far-fetched, but what can anyone expect from me? I am 34 years old. I don't have Mama and Daddy or a spouse taking care of me. When my aunts and uncles are gone, I have me. And what do I have? Absolutely nothing. Not a leg to stand on. It's just me and God. No income, no committed caregiver, no hope outside of God's provision. I am at His mercy and the mercy of those around me. I am at the mercy of the government, probably for the rest of my life. It is the most helpless feeling on Earth. I don't have words for this. I am utterly broken beyond belief.

Of course I was going to try to get a degree and find an online job. What else could I do? What else WOULD I do? I don't want to be dependent on the government or anyone else. There is no hope in that. None. What's the point of living like that? Any responsible person would try their hardest to make it on their own, and that is what I did. I only give in by force, and I think I've proved that. Nobody can ever say that I didn't try. I've nearly dropped dead from trying.

No matter what happens to me, I don't regret trying.

Friday, April 27, 2012

It's Over.

I emailed my teachers last night to thank them for dragging me to the finish line. I missed my last Algebra exam due to being too ill to take it, but my instructor was able to make special accommodations due to my condition, and I was able to take the test at home at the end of the semester. It made all the difference in the world in my grade, and I am so grateful.

The ladies at the proctor center also have my sincere thanks for going above and beyond to help me, especially this school year. They rescheduled my proctored tests many times without saying a word. They let me use the employees only door because it's closer to the parking lot. Wednesday, they helped me in the door, brought me water, helped me out of my chair, and assisted me back out the door to my car. I appreciate everything that everyone has done to help me at MGCCC. I haven't take it for granted.

Will post grades, a recap, and some news soon. For now, sleep.

Monday, April 23, 2012

Almost Done, & Other Ramblings

I am way too old for this college thing, people. It's killing me...I swear. I'm thankful that I've made it this far, though, and I will be done with the semester this week. Two more tests and I can spend the next couple of weeks sleeping and dealing with hospital and social security crap until a new chapter of life begins at university. I am extremely tired, but glad I didn't give up on getting a degree and I am looking forward to continuing to pursue it, albeit, from my bed. I'm trying not to worry about the unknown, but it's hard not to be anxious about it.

In other news:

I wrote a paper on the Periodic Paralyses for Health class. I'll publish it after it's graded.

My application for disability is still being processed, I guess. I haven't received an appointment yet. I'm making copies of medical records to take to them, though. Hopefully that will get the ball rolling.

I'm thinking of letting ugottafriend.com expire. Not that I want to, I just don't have the funds to spend on renewing the domain. I sold some of my art supplies this week to pay for basic necessities. Like paper towels and toilet paper kinda necessities. Hard times 'round here.

Need to put some paintings up for sale. Will have a friend take photos soon, so I can update my portfolio. I think I may put a few on display at the library too. Just need to find some help with that.

I guess that's all. It's 4AM and I have no idea what I'm typing anymore.

Monday, April 16, 2012

"A Letter to Normals"

Someone shared their heart on Facebook, via Fibromyalgia Network, and I wanted to share it. Although not HKPP, I did receive an incorrect diagnosis of FMS when I was a teen. The symptoms are eerily similar, and this lady's rant describes my life in every way. I imagine it applies to all with Periodic Paralysis as well as other systemic diseases. I believe everyone can learn something from this.

https://www.facebook.com/notes/fibromyalgia-network/a-letter-to-the-normals/206566062700764

Feel free to pass it on.

Friday, April 13, 2012

Aggravated? Stressed? I don't even know what to call this one.

Breathe. Don't punch anybody in the face. Just breathe.

I have been waiting for the local clinic to call me about receiving an IV infusion of potassium. It has been ten weeks now. I figured they had lied about ordering it for me, but decided to give them the benefit of the doubt and ask them to follow up on my order. After some drama, they told my brother (who works there) to tell me that they didn't order it, and they don't plan to.

So I've been anticipating this possibility for nothing. I wasn't at all surprised, because this is the kind of BS that I get at every clinic, especially the low-income ones. It's like I'm just not important enough. Let's lie and tell her it's on order so she'll leave us alone...maybe she'll forget about it eventually? I have no idea what the hell they were thinking. My brother caused a scene on my behalf. He was pissed off and he let them know it. I was glad to see that he cared enough to get angry at his own employer.

So I'm still in the same condition with no hope of an IV infusion. I'm stuck dealing with the oral meds and trying to figure out what to do to make them work. My internist and I are both baffled at this point. I see him again in May, and I honestly think we're both going to be speechless.

School is almost said and done, and the last half of the semester has been stressful. I'm in the final stretch with a few tests and a big research paper on Periodic Paralysis. I'm working on it now...it's going to be pretty extensive and time consuming, but I think it will be worth the effort (eventually)!

Twelve more days at MGCCC, then a three week break before university.

I can do this.

Tuesday, April 10, 2012

One Year Ago

My world came to an abrupt halt. Barely able to walk following a class that I taught, I went to my sister's house and crashed into a Hypokalemic attack that changed my life. I was helped to bed and woke up hours later unable to get up. I managed to reach for my phone and text my brother, who took me to the emergency room at Providence Hospital. By the time I was seen, I could no longer use my limbs or trunk. I was in an episode of flaccid paralysis. Thankfully I could still speak, but the ER doctor interrupted me as I tried to explain what needed to be done. "Yeah I know what it is", he said. Great, I told him. Finally someone knows what it is.

Then I was given a sodium chloride IV, despite me fussing that it would make me worse, and was released in just as bad of shape as when I arrived.

Since then, I am weak 24/7 and crash almost daily into episodes of paralysis...sometimes unable to move or speak. I returned to another emergency room in May - Infirmary West - in full blown paralysis, and I was mocked and mistreated the 20 hours I was helplessly in their "care". I was jabbed repeatedly in the chest, screamed at, mocked, called a fake, accused of drug seeking...I have yet to get over it and I wish I could sue them to this day. The ER at Infirmary West is an utter disgrace. I still despise them, and I pray to God I never experience such a nightmare again. I would rather die, I'm almost sure of it.

After this happened, the MDA finally acknowledged me (I had been trying to get an appointment with their clinic for over a year prior), and the doctor concluded that I am permanently disabled. On my best days, I can walk with assistance of crutches or a walker. There are times when I can drive short distances. I shop and get around large places with a borrowed power chair. I looked at buying a used power chair the week of my birthday. Who shops for a wheelchair for their 34th birthday?

My mother says she supports me yet rejects my condition (in the name of religion) and won't listen to or read any information about it. The MDA doc urged me to make my family understand, but she said she doesn't want to hear it or know anything about it. She refuses to be a caregiver, take me to the doctor, help me with medication, or have me in her home while I'm seriously ill. My father is deceased and didn't believe me when he was alive. My siblings care but have their own lives to worry about, they don't want or need to be concerned with me. I love my relatives although many are apathetic, skeptical, and cowardly and make me very angry at times, but mostly sad and weary. Do they realize it could have easily been them walking this road? Because it could have. To be part of such a huge family, I feel like I'm not a part of it at all. Truth hurts, doesn't it? Yes, sometimes it does.

In spite of my efforts over the past year, my condition has not improved anywhere near the function that I once had. My body is completely different now, severely weak and unstable on a daily basis from the chaos of this progressive disease. I'm grateful for what I have, but I can't help but grieve for all that I've lost and all that could have and should have been.

I am broken.

But, I'm not dead yet. I'll never stop trying, and I won't stop hoping for better days.

Friday, April 6, 2012

Friday Funnies: HALP!


Guess what, kids? It's finals time!!!!!