Thursday, December 6, 2012

Choosing Battles


Credit: CorgiAddict.com
This is pretty much how things are going lately.


My body doesn't seem to know which way is up anymore. Even my uncle, whom I share a house with but never speaks of my condition, finally chimed in and said "You're not functioning."

No kidding. Thanks for letting me know.

I manage to get a little bit done most days, but it usually involves something small. As most with systemic disease know all too well, I have to choose my battles. I can wash my hair, or I can load the dishwasher. I can prepare a semi-homemade meal, or I can struggle through a load of laundry. I don't take these things for granted whatsoever. Not a one. I find myself taking note of every little finished task on my to-do list and calling it a win. I can't help but be sad at times, though, that I consider taking a shower and putting on clothes an accomplishment. Who does that? Apparently, I do. Perhaps I'm not the only one.

I'd be lying like a dog (pun absolutely intended) if I said my treatment was going terribly well. It's not. My body is frustrated and it's making that known every minute of every day. I'm in horrendous pain from head to toe with no relief. I seem to be entering a state of acidosis thanks to acetazolamide, which I still have not successfully titrated to the amount that the doc wants me on. I pray to God for mercy that I don't start passing stones again, and I can't get in any position and be comfortable enough to rest. I literally do not sleep until my body crashes, whenever that may be. It's usually sometime in the morning or afternoon for three or four hours, and I'm usually in the middle of something. I can be in mid-sentence typing on my laptop in bed, and suddenly I wake up later with my hand still in position on the keyboard, partially paralyzed. I wonder sometimes how long I can continue existing like this. I'm trying so hard to function, but I am exhausted in every possible way.

I do what I can to distract myself. I'm working on an inspirational eBook, small craft projects when my arms and hands allow it, and spend a lot of time on Twitter and Facebook. I am grateful to those who put up with my ranting, raving, and rambling on social media. It keeps me sane.

I'm supposed to be heading to Louisiana today for a relative's wedding, but I am physically and financially unable to make the trip. I'm pretty upset about it. No matter how long I've lived with this disease, I can't get used to the fact that I don't have the same privileges as the rest of my family and friends. They can go and do what they want or need. I struggle with not being granted such normalcy.

I refuse to give up on having a life again, and I count my blessings in spite of this prison.

Monday, October 22, 2012

Facebook Tip: How to stop comment notifications after you've commented on someone's post (pictures included)

Do ya hate when you comment on someone's post, and then receive a bunch of notifications of others' comments from that moment forward? It can get kinda annoying, right?

I finally figured out how to bring it to a halt!

Once you receive a comment notification following your comment, you can do the following:


Go to your notifications icon



Hover over the post you wish to unfollow



Click on the X



Choose Unfollow



TA DA!

You've unfollowed that post and will no longer receive notifications on it. Please tell me I'm not the only person who didn't know about this until recently. Glad I know now. My notifications are much less cluttered!


Wednesday, October 10, 2012

Low Sodium French Onion Soup Recipe

HELLO, SOUP SEASON!

I put so much cheese on top
it sank and took the croutons with it.


Anybody who knows me knows that I am a soup fanatic. Last year, I was dead set on making a great low sodium Chili. This year, it's French Onion Soup. I am so hooked on the French Onion Soup at Atlanta Bread Company, I could eat it every single day. I decided to give it a shot myself, on a day when I could use my muscles well enough to pull off the task. It turned out well, so I thought I would share my recipe with you.

First let me say that this is ideal for people on a low sodium diet, and also for those who do not use wine in cooking. I would use wine if it didn't spoil so quickly, but since I don't drink it (triggers HKPP episodes), I don't buy it.

That said, here we go. Sorry there are no step by step photos...I couldn't find my camera at the time (edit note: I added the photo above more recently).

Ingredients:

8-10 onions (yellow, Italian red, or both if you like)
6 cups low sodium beef broth
1/2 stick unsalted butter
Splash of balsamic vinegar
2 bay leaves
Pinch of salt (I use kosher)
Several grinds of fresh pepper
Gruyere or Swiss, shaved or grated
French bread, toasted (optional of course)


Slice onions in eighths and put in a large pot with a pinch of salt and the butter. Cover and cook very slowly, somewhere between 1 and 1.5 hours, until onions are caramelized.

Once onions are fully caramelized, deglaze with a splash of balsamic and slowly stir in broth, bay leaves, and pepper. Bring to a boil, then reduce to a medium simmer for 15-30 minutes, stirring occasionally. Add salt and pepper to taste.

Pour into individual bowls, shave Gruyere on top, and serve with toasted French bread. I like to put the toasted bread in the bowl, top with cheese, and broil in the oven.

Keep in mind that this is a lower-sodium recipe, and the taste will reflect that. By all means, use full-sodium broth or add salt as you wish. I think it's great, for what it's worth, and I hope you will too.

Wednesday, July 25, 2012

Welcome To The Freak Show


Treatment as of July 2012

If they add anything else to my regimen, I'll have to buy a bigger dry-erase board.


From physical and mental to financial and time-wise, this is a challenge in every way. I feel like a juggling Guinea pig in a circus freak show (where you at, Ripley's?) who returns to her cage when the act is done. And this juggling Guinea pig has over a dozen acts a day, because the Ringmaster thinks she's qualified to handle the workload.

I am not qualified today. Or this week. Or this month. In fact, I'm not sure I'll ever be qualified for this.

Five years ago, I was an executive office administrator in the corporate world, working two jobs seven days a week and still managed to take online college classes and do charity work on the side. I took one pill a day and one shot every 11 weeks. Although I was still recovering from a severely separated knee caused by an incident with post-Katrina debris, I appeared to be in a mild sort of remission from the Periodic Paralysis. I didn't take it for granted. I seized every day as if it were my last. I did the best that I could.

The Periodic Paralysis reared its ugly head again, and I found myself flat on my back at the end of 2007. I had to resign from all jobs, and I was back to the drawing board. Weaker, but determined.

I didn't give up. I redefined my life. I threw caution to the wind and ran off to Florida, where I trained and certified to teach Bob Ross painting workshops. It was the craziest, riskiest, most spontaneous thing I've ever done. It was also the most incredible, amazing experience of my life. I returned to the Gulf Coast and began teaching for very little income, but I was happier than I had been in a long time. Summer of 2008 brought forth another spontaneous decision - going back to college full time. I dove in head first. Two weeks in, I landed in the hospital and had to have two kidney stone operations, missing almost a third of the semester. One of my teachers told me that I was an academic goner and suggested I withdraw.

But I didn't give up. I worked night and day to catch up, and I walked out of there on the Dean's List.

I continued teaching and going to college, and I helped launch a non-profit organization. My vision of getting my Fine Arts degree, bringing Art Therapy to the Gulf Coast, and eventually qualifying for foster parenting was finally becoming possible. Then my body began to weaken again, and I saw the inevitable. I went to doctor after doctor, and warned loved ones about what was happening. Nobody took me seriously, even after I had to drop my Art courses because I was too weak to handle them.

But I didn't give up. I was devastated, but I dropped my Fine Arts major and continued college strictly online. I surprised myself by choosing Psychology, and kicked some unexpected, unprecedented butt. Perfect score. I found my academic niche, and ran with it. The new goal: Troy University's Psychology/Social Studies Post-Secondary Education Masters, with Bob Ross instruction and art therapy in the plans as volunteer work on the side. I had a real goal again, and was so excited.

April 9th, 2011, my world came crashing down when my body went into a paralytic episode following a painting workshop. I was severely mistreated by the hospital staff, resulting in multiple episodes and a drastic nosedive in my condition. I never fully recovered, my doctors have declared me permanently myopathic, and life has been a roller coaster from hell ever since.

At the horror of those around me, I refused to give up on college. I continued online, propped up on pillows in bed. I couldn't complete some of the assignments on time due to episodes and hospital visits, but my instructors made accommodations to extend deadlines, and I finished strong. When I was forced against my will to drop out of college this year, I left with a 4.0.

And now, my life is this. One pill a day has become an overwhelming list of crap that I have to write down to remember and borrow money from relatives and charities to pay for. Some days are better than others, but overall quality and all future plans are out the window. Some days, I can't swallow well enough to take all the meds. Some days, the side effects are worse than the symptoms. Some days, I take the meds and they flat out don't work. Some days, it would just be easier to give up, because I am absolutely not qualified for this.

But then I am reminded of everything that I once strove for. I am reminded of all of the people, young and old, that I have mentored and counseled to never stop hoping and never stop trying. I am reminded that I don't deserve to talk the talk if I'm not willing to walk the walk. I am reminded of who God is. I am reminded of who I am. I may not have much or be much, but one thing I know for sure - I don't give up.

I may not be qualified for this act, but with everything in me, I'm gonna keep juggling.