March is here already.

And I'm behind on my blogging. I didn't start the year out too well where that is concerned. There is so much to write about these days that I'm overwhelmed, and I end up not writing anything at all. Mostly, I want to improve upon my medical blog and genealogy blog, but I keep dragging my heels. I will eventually tackle the tasks.

I've been extremely tired and in a lot of pain, and pushing myself to the point of physically crashing. I'm struggling with achieving a reasonable balance in nearly every facet of my life, and while balance is something I will always strive for, what I only want to do at the moment is sleep.

I returned to counseling today, and it amounted to a rant session about my limitations and my inability to deal with peers who've crawled out of the woodwork to support the terrible current events that have taken place over the last two years. People I've grown up with, or are related to, or have been friends with for years are suddenly bigoted, and in some cases, cruel. That has been a difficult adjustment, and it has made me question how I ended up in their realm. Most of the answers are obvious: was born into the family, grew up in that town and went to such and such school, and share certain general interests. In other words, we were compatible by blood or proximity. In a few rare cases, people simply changed, or they always carried such views, but hid them until now because they feel more comfortable letting their ugly flag fly. As for what to do with them, there's no real answer. I've already cut my Facebook down by hundreds, and I've ditched the majority of the family. I've learned through studying minimalism that it's not just about stuff. It's about people too, and how they affect your quality of life. In math terms, you can ask yourself the question "Is this person adding, subtracting, multiplying, or dividing?" I've seen some people even make a written list. Remember the old slam books from junior high? They were terrible, but not completely unuseful. When struggling with someone's presence, weigh their pros and cons. It sounds like solid advice, but it's a whole lot easier said than done.

Back to my limitations, I've been doing what I always do, and that's push myself until my body crashes over and over again. I live in HUD housing, which has to be kept in acceptable condition, and there's nobody here to do that except me. Even if there was someone else living here, I wouldn't be sitting around expecting them to do everything. I have to be able to operate my body. I have standards for my living conditions in addition to that, and I try my best to achieve it for the sake of my own sanity. I've never been diagnosed with OCD, and I don't think I qualify, but if the diagnosis ever arose, I would do nothing more than shrug my shoulders and say "Fine with me. At least my body isn't gross and my apartment doesn't look like garbage." And that would most likely be the end of the conversation, because it's my body and my apartment, so thank you, that is all.

My counselor suggested I find a local service for people with disabilities that offers to help me with cleaning and shopping. Except there isn't one. I live rural. None of the grocery stores that I shop at deliver here. There's also no restaurant delivery (not even Pizza Hut for heaven's sake), and the only people who offer to clean are locals who are unlicensed and looking for extra money. I'm not desperate enough to let a stranger in here around my medications and inherited collectibles (the latter will eventually find new homes, but that's another story for another time). I can't afford maid service. Family is not an option.

So there's little 'ol frustrated me with the frustrated muscles. I'm doing what I can, and overdoing it often, and paying the price. There's nothing normal about living with systemic disease, and it could be a lot worse, but it's not something that I can bring myself to accept, and that's where my head comes into this. I know how to acknowledge that this is my life. I don't have a choice. But to accept it is a step that I can't seem to reach. I don't know if I ever will.

I have no solutions, but I will keep trying to make it day by day, and continue to do the best I can with what I've been given.

Remember Your Doctors

Another chapter in my horror story has finally ended. After three years of probation, the Department of Education informed me that my college grants have been officially erased under total and permanent disability, and that they are no longer monitoring me as of a month ago. What this means is that I am incapable of completing my education or securing gainful employment due to being declared disabled as documented by my physician. In my last year of college, I was so bad off I couldn't sit up long enough to eat a full meal or shave my legs, much less make it through my online classes, and campus classes had almost literally killed me a few months prior. Social Security acknowledged my permanent disability shortly after that, back in 2012, but the DoE's TPD department also needed proof from a doctor. The Muscular Dystrophy clinic ignored my letter, but thankfully, my former Nephrologist Dr. Fulop came to the rescue.

Dr. Fulop is no longer my doctor (I was told he moved back to Hungary), but this is the second or third time that he has saved my ass. When I arrived in his office in a partially paralytic state years ago, it was pretty clear that I needed help, but he didn't know that relatives were already discussing what kind of nursing home to put me in. And until I wrote him in 2015, he probably didn't know I was at risk of losing a percentage of SS Disability income to the Dept of Ed either, which would have surely ruined me completely, as things are financially very difficult as it is. We had problems in the beginning, but eventually put our anxieties aside and communicated effectively. I have no doubt I'm still here today because he listened and cared about my perils. I wish I could talk to him and at least thank him for saving me from a terrible fate. I hope he knows that he is my friend, and I'm really grateful to him for turning my life around. It's a very emotional thing to recall, even now.

My current Nephrologist is super sweet, and he seems to know more about me than I know about him, so I don't know what's been said or documented. At any rate, I consider myself lucky to have him, and I hope to God he stays. I can say without hesitation that for those with chronic illnesses, it is absolutely crushing to lose a good doctor. Sometimes, they are among only a few consistent and compassionate listeners in our lives.

I still have some dark moments. Author F. Scott Fitzgerald wrote "The loneliest moment in someone's life is when they are watching their whole world fall apart, and all they can do is stare blankly." I live these words day in and day out. I had plans for my life like everybody else. I was going to rise above the trauma and pain, reach my educational, career, and non-profit goals, achieve the independence I so fiercely longed for, and be somebody. Instead, I wonder why on Earth I was even born. I'm tired. Sometimes, I just want this to be over. But then I remember how Dr. B is always happy to see me, picks on me like a dad, and tries to make sure I have all of my prescriptions. I'd be dead as a door nail without him. I remember Dr. C who wants to know more about my weirdness so he can spread the word and maybe patients in the future won't suffer as much. He asks that I not lose hope because somehow he knows that I have. I hardly know how to respond to his kindness. I want to have coffee with him or something, and I never want to have coffee with anybody. Drs. Witt and Hillman continue to see me at Muscular Dystrophy clinic once a year even though they know there isn't a thing they can do for me. Primary Periodic Paralysis being acknowledged as a form of Muscular Dystrophy was a life-saving turning point as they agreed to re-diagnose me with Periodic Paralysis and refer me to the renal clinic across the hall, where I met Dr. F. It took going through years of hell to get to this point, but I have hit the freaking jackpot of physicians.

So I remember them, and the respect they've shown me, and I think maybe the world isn't quite as terrible as it seems, and I take a deep breath, and I pray, and I continue to seek a life worth living.

A Better Person

I've been feeling like a thousand angry piranhas are chewing their way through my lower torso, but it was so beautiful outside, and I couldn't stand the thought of being confined to my apartment for another day, so I made the quick drive over to one of my favorite places: Bellingrath Gardens. I am lucky to live a mere 13 minutes away. I sat in the cafe and drank tea, watched the fountain, and pretended my insides weren't being stabbed by a dozen tiny samurais.

Photos don't even begin to do this place justice - especially my photos.

A fountain and a friend. :-)

The gift shop is nice. LOL

This is so cute.

In further rebellion, I went down the road to the park on Portersville Bay and sat for awhile.

This made me laugh. It said "Class of 2028" on the other side. Gotta love a kid's heart. I won't be birthing any myself, but I really love kids. They great.

While taking the pics, my muscles announced their impending meltdown, so I stopped immediately and made the 5 minute drive home, where effervescent potassium and my bed awaited.

Life has been turbulent for a long time, but it's not something I'll ever get used to. All I can do is propel myself through the day as I am able, or surrender as needed (because that's ok too, sometimes). After everything I've been through, learning to be kind to myself has proven to be a challenge, but I'm giving it my best effort. I can't help but wish I had understood 20 years ago what I do today; I would have avoided some trauma, without a doubt. I know I still have plenty to figure out about me, but who doesn't? After all, we are all a constant work in progress, right?

One of my 2018 goals is to tackle my stress and PTSD, not only for the sake of my mental and emotional health, but physical as well. HKPP and stress are sworn enemies, and I have to do whatever I can to kick my escape response to the curb. Not just for myself, but for those I allow into my strange, silly, broken, passionate, intense, unpredictable world. I think most people don't really know what to do with someone like me who has both fire and ice in their soul, but I will always appreciate those who try.

I'll keep trying, too. I'll never stop wanting to be a better person.