Sunday, July 31, 2016

July Happenings

July is finally over. Thirty-one day months sure do drag. You would think they wouldn't seem much longer than 30 day months, but there is something about them that feel that way. I am making no sense, I realize.

I know this is no surprise considering my location, but it has been hotter than hades outside with accompanying flash floods, so I've spent more time at home than usual. I'll have to do the same in August and September. October is usually a welcomed sight, and November even more so. I don't know anyone who doesn't love Autumn.

I'm having a lot of rocky days, still. Periodic Paralysis is kicking my butt, as usual, and there are days when I can't do anything but lie on the couch, cringe over the condition of my kitchen or bathroom, and wish for a different life.

My kitchen and bathroom aren't bad, I've been told. In fact, a friend came over the other night and went on and on about how clean and organized my apartment is. Then I took her into the storage room - ha! Total disaster area.

She's right, though. I need to stop being so perfectionist and critical of my abilities or lack thereof. Another friend reminded me yesterday that we can only do what we can do. What we can't, we need to give ourselves some slack. There's no sense in beating ourselves up over something we didn't choose and have little control over. I'm glad I have friends that keep me in line sometimes. I need it.

So my perspective today is: there is a bucket of dishes soaking in the sink, and my bath tub needs a good scrub, and my storage room looks like a tornado hit it, but my apartment looks absolutely fabulous otherwise. So go me.

We'll see how long that lasts.

Anyway, I've spent several days this month on the couch mulling over undone tasks, and I finally sat up and told myself out loud "Get yourself together and DO SOMETHING".

I used to have a gigantic display of still life objects set up in a corner of my living room. I decided to tear it down and unveil the tables. I don't have a television, and I only have one sofa, so there was a lot of negative space in the room. I decided that should change, and it is now set up for board gaming.

I can seat 10 in chairs and two on the couch. My brother's family makes five. Add a few friends and I'll have a full house. I have been so sick of the misery on social media that I thought we could all use a break from politics and bad news. We're going to plan pot lucks and everything.

Speaking of food, I finally caught Schwan's Home Delivery at a time when they would be in my area, and I placed my first order. With a 50% off coupon, I scored all of this for $41.49. The meat is organic, and I didn't have to get out in the crazy weather we've been having to buy groceries. I call that a serious win.

This is not a sponsored post. I don't think they even have an affiliate program. If you do happen to check them out and they ask who referred them to you, feel free to type in my email address - I don't think they do anything like that, but I'm a newbie, so I could be wrong.

Yeah...July was Camp month. I accomplished very little, I admit. I had plans to write flash fiction and short stories, but I did neither one. Most of my word count, which I lost count of half-way through, was based on journal entries and essays that will probably never see the public eye. Oh well. November awaits, and I'll see what I can do when Official NaNoWriMo rolls around.

Two highlights this month: A friend took me to Pensacola for an amazing meal and some bird watching (this deserves its own post, so stay tuned), and of course the birth of my first nephew was a blessing. I don't know how often we will see each other in the future, if at all, but I'm glad he's here. Babies are the best, and I hope the little dude has a wonderful life.

I'm pretty surprised by how much I blogged this month. I'm certainly talking a lot more this year than I did last year. Is that a good thing? You tell me.

Friday, July 29, 2016

Tuesday, July 26, 2016

To the self-righteous hypocrites and haters of the ice bucket challenge

Click to get to the article.

May you all take a break from your charmed lives to swallow this planet-sized serving of crow.

Have a nice day.

Thursday, July 21, 2016

And It's Complicated

If you saw my Birthday Grub blog, I don't blame you if you were slightly (or very) horrified. That was a lot of food, but that's not the norm.

I have a difficult time eating like a regular person, at least not without big consequences. MD, CKD, GERD, and Gastroparesis do not make my relationship with food easy. I dare say it's an unconquerable battle. There's the fact that I have to avoid carbs, yet eat them to prevent Hypoglycemia. There's the sodium that I have to limit greatly without becoming Hyponatremic on three diuretics. There's the issue of wanting to eat more vegetables, but they contribute to kidney stones (of which I've had at least 40 in my lifetime, including surgery). I also have Dysguesia, which makes vegetables taste terrible to begin with, but that's another story. There are also the nightshade vegetables, which contain much needed Potassium, but by golly they also contain an ingredient that inhibits neuromuscular transmission. Epic fail. Fruit contains fructose, which triggers HKPP just as badly as glucose does, and artificial sweeteners are even worse than that - they've nearly put me in the hospital with serious paralysis. Thanks for that no-win situation, universe. Caffeine both helps and hurts, depending on what organ we're talking about. My Magnesium fluctuates just as badly as Potassium does, resulting in a wide variety of ugly symptoms that qualify as TMI (I could write a thousand words on Magnesium alone). My Phosphorus and Vitamin D are chronically low, with no resolution via diet nor supplementation - I've confirmed that nothing works, and nobody knows why. My Muscular Dystrophy diet is high protein and fat, and I've gained nearly 30 pounds as a result. I'm now borderline obese, and doctors are bringing it up. Some days, I'm too sick to eat anything substantial, so I drink protein drinks. My kidney disease and heart disease calls for - guess what - low protein and fat! That's the exact opposite of my MD diet - lucky me! I was referred to a Dietician concerning low electrolytes, who gave me quite possibly the worst advice a Dietician could ever give anybody - eat more chocolate and processed meats, and drink Coke. That was a WTF moment if I've ever had one, and a fast track to HKPP. My doctors keep telling me to eat things that I cannot safely eat, and take drugs that I cannot safely take, because they are dumbfounded by the situation and can't keep up with all of my triggers and side effects (not a real complaint, because I don't know anybody who could remember this much insanity unless they were living the life themselves). Not knowing or understanding isn't the issue, by the way. It's pretending to know and understand, or being condescending and criticizing in spite of the lack of knowledge, that is the problem. Doctors across the globe need to learn to say "I don't know, but I'll listen and try to help." I digress.

Let me get back on track. Food! It must be so nice to be able to eat and drink whatever you want without acute, life-altering side effects. If there is a heaven (I continue to believe there is, personally), let's just say I'll enjoy feasting. Because what I'm dealing with on Earth is a whole lot of BS.

It could always be worse. And I'm thankful it isn't. I'm human. I get frustrated, especially when every single day is difficult, and there is no reprieve. I don't want my daily life to be consumed by what I put into my body, nor the atmosphere that I surround myself with, but I have no choice but to obsess over it if I intend to survive and have any quality of life. I'll elaborate on the atmosphere part in another blog (same bat time...same bat channel).

At least I haven't lost my stupid sense of humor.

I'll leave you with pictures of many of the foods I eat on a regular basis. Protein galore. Hopefully this will be some kind of redemption from the gluttonous birthday bash I subjected you all to a few months ago. Enjoy.

Yellow Split Pea Soup with
extra crispy bacon

Turkey Vegetable Soup
I make so much soup.

Lots of Taco Tuesday happening,
albeit, without nightshade veggies.

Occasionally, I honor my grandmother.
It's a comfort food. I miss her.

The most incredible veggie frittata ever.
(Prior to nightshade elimination.)

French Lentils

Veggie Beef Soup
I'm making this again in a few days.

Shrimp Burrito
(Also prior to eliminating nightshades.
I don't buy flour tortillas anymore either.
P.S. - This is subject to change. LOL)

The beginnings of hummus.

Citric Acid is essential if you have kidney stones.

Kale and Collards
So bitter, but I'm trying.

A simple Hawaiian pulled pork roast
This fed six people, with leftovers.

New obsession: Turkey Tenderloin

As seen here.

And here.

No caption necessary.

I just discovered avocado smoothies
next door at the donut shop of all places.
It was great. Super high protein.

If you don't have access to this
Alabama goat cheese, I am so sorry.
It'll knock your socks off. Swoon.

Mediterranean Lentil Soup
I make this regularly.


I still have symptoms, even though I constantly analyze whether or not I should eat something. The thing is, I never know when even some "good" meals are going to affect me. It could be a matter of a pinch too much salt, or the carb load was too high that day, or eating slightly too much in one sitting, or not eating enough, or it may contain tryptophan, or I've had too much fiber - the list of possibilities goes on and on. As usual, I can only do the best I can.

One thing is for sure: being a foodie with systemic disease is like being in an intimate relationship - it's complicated.

I have nothing to add.

Credit to The New Yorker

Monday, July 18, 2016

Banana Advice

Thanks to Geoff Lehman for the meme.

Please cease and desist this terrible advice to HKPP patients. :) I would personally have to eat 26 bananas a day, and not only would my body not absorb or magically utilize the potassium properly, I would die from the carb load. We don't care that bananas have a little bit of potassium in them. You don't understand Primary Periodic Paralysis.

Stop the madness. Thank you. :)

Sunday, July 10, 2016

Brooks Falls - Katmai National Park, Alaska - Bear Cam

Brooks Falls - Katmai National Park, Alaska - Bears

Late summer in Alaska = bears catching salmon!

Loving this feed. It's a great little escape from the woes of social media.

Edit: It didn't embed. You'll have to click on the link. :-)

Edit: Here, I took a few screenshots. I even managed to get a few salmon mid-jump.

Saturday, July 9, 2016

Medical Equipment Drama

It has taken me a few days to get to this post because of all that has happened this week, but here's a short update:

Indy 500 (my rolling walker) and I have visited a large local med equipment company a couple of times. They may be really nice folks, but they are the absolute worst salespeople I've ever met. Every time I have gone there for walker or wheelchair discussions, they have said things so ridiculous and aggravating, I've wanted to scream. Just a few examples:

"It doesn't matter what kind of seat is on the walker, you're not supposed to be sitting on it anyway."

"That one only holds up to 200 pounds." (Side note: I'm not 200 lbs)

"The whole chair is 129 pounds. It's not THAT heavy."

"You don't need a wheelchair right now. You don't want to become dependent on it."

"You look like you're doing fine."

These people have tested my patience to its maximum level.

At any rate, they informed me that a power chair lift cannot legally be installed on a Buick because it sits too low to the ground. They said some people have been brave/crazy enough to rig a lawn mower trailer on the back of their cars for this purpose, but that is not an option for me for several reasons. Mostly, I wouldn't do it because power chairs are a thousand bucks, and I'm not "rigging" a thing. It will be done right, or it will not be done at all. But I also live in public housing with one parking space, and a trailer would block incoming traffic. This is not a possibility.

A truck or SUV with a proper hitch is the only way to legally do this, so that is what I'm facing. An approved vehicle first (unknown cost), then a chair and lift (which amounts to about $1950, not counting tax, accessories, or lift installation).

In summary, I'll have to accept my limitations on the walker unless my circumstances (finances, living arrangements) somehow change.

Edit Note: Now pursuing this because it is easily assembled and disassembled for travel. The heaviest piece is 28 lbs, which is very important since I can barely lift anything. On days I'm able to get around, I can put this in the back seat of my car, and (according to them) quickly and easily put it together in parking lots as needed. I can also carry it with me when riding with someone else, as long as they have room to spare. I just have to figure out how to obtain it now.

Friday, July 8, 2016

8 pounds, 2 ounces, 20 inches, and Infinitely Loved

In the midst of so much pain, heartbreak, chaos, and death
there is the miracle of joy, hope, comfort, and life.
Thank you, Asher Grey, for arriving a little earlier than expected.
You are a precious light in our very dark world.

Tuesday, July 5, 2016

So much to do. No power to do it.

My mind is constantly churning information. Instead of focusing on and executing one project at a time, it wants to mull over fifteen ideas at once while getting absolutely none of them done.

This is my life every day. It is frustrating and exhausting.

Constantly thinking about what should be done isn't helpful when you're too weak and tired to make it happen. Icing on the proverbial cake, I guess. I hate cake.

Sunday, July 3, 2016

Grandmother's Independence Day

I've always called July 3rd my grandmother's independence day. I can't believe she's been gone nine years now. She was one of the best people I've ever known.

My grandmother loved everybody, even all of the people who did her wrong. She took too much crap, but it was her nature. I'm almost sure she loved me more than anybody ever has in this world. She (and my other grandmother) defended me when nobody else did, and I'll never forget that.

I was her part-time caregiver for 3 1/2 years, and her slow, cruel death from Alzheimer's is still the worst thing I've ever seen. She was such a fighter and didn't want to leave us...she suffered for a decade. We were heartbroken, but relieved that she was finally free. I will always miss her terribly.

When I arrive at death's door someday, I hope she's on the other side waiting for me with buttermilk biscuits, butter beans, and sweet tea on the red and white checkered dinner table.