I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Wednesday, February 28, 2018

Rare Disease Day '18

I have systemic disease: conditions that affect multiple systems of the body.
I'm going to make this easy on myself and share links from Wikipedia.
The references are valid, so don't worry too much about misinformation.

I may have forgotten some things, but I tried to share as much as I could.
I'll reboot the medical blog soon. I get tired of talking about it sometimes.

At any rate, if you have questions or concerns, you may email me.
I won't promise a quick reply, but I'll eventually read and address it.

I've learned you never know what someone is really going through.
We only see the surface most of the time, so it's best not to be judgmental.
Thanks to those who bring awareness, and to those who stand by us through it all.

Tuesday, February 20, 2018

You're not the only one who noticed.

I have also noticed that I blog more often, not less often, when I'm sicker. Laptop computer for the win? It's the fact that I can't get up and out and do other things, I suppose, so I sit here and type.

I am doing better, though. I am still having a great deal of head-to-toe weakness and muscle pain from the myotonic episode of doom, but I am functional enough to drive to the grocery store and buy a sandwich (which is what I did today), so that is certainly an improvement over a week ago. I will need to improve more to be able to sit up long enough to go to my doctor appointments in Jackson. Right now, the window of functional time is small. But at least it's something.

No changes, therefore no further comment, on the gastroparesis.

My medical blog has been on hiatus, but I do plan to catch up on it soon. Apologies to my readers over there who check it regularly. I do have some things to share, but you'll probably see a lot of repetition as I will talk about some of the stuff that you've already read on this blog. I originally wanted to keep the two blogs separate, but it just hasn't worked out that way because this is my "life" blog, and my life resolves around my battle with systemic disease. That's just the way it is.

One of my blog readers passed away over the weekend. We were online pals for a few years, but he said some things a while back that I considered way out of bounds, and I cut communication. He still read the blog, to my understanding. I am truly sorry for his children, and I offer sincerest condolences. He was far too young for this to have happened.

I'm tired of people dying in general. I think my brain is shutting down, in a sense, because tragedy is happening so often that desensitizing is the only way to cope. It always comes out one way or another, though. Either I weep over a TV commercial or I curse at the self-checkout or something. I'm a HSP - Highly Sensitive Person - so it will always come out even if it's a delayed or atypical reaction.

I don't feel like sitting up anymore, so I guess that's all for now.

Sunday, February 18, 2018

Improving (This post involves TMI)

I'm still in terrible pain, my head and shoulders remain heavy, and muscle spasms come and go. Otherwise, I'm doing a little better.

I drove across the street to the grocery store a couple of days ago to pick up bottled water and a few other things (I almost barfed from the pain), and I've done a little bit of walking around outside (the weather is a beautiful 70 degrees during the day right now, which helps immensely). I'm still living on ibuprofen and the occasional stronger pain med (a PRN prescription that I've had for years and almost never use). I'm eating pretty regularly, but my digestive system is still being a jerk and I'm having to medicate heavily in that department to force things to move in the correct direction. That's not doing my HKPP any favors, but HKPP is most likely the reason it's happening to begin with, and potassium isn't correcting it. I've upped my Magnesium Citrate dosage in hopes of finding some kind of balance. Believe me when I say nobody wants to be on Mag Citrate, but it's a daily supplement for me and has been for a long time. My acid reflux disease, which I've had more than 20 years, is also at its worst thanks to Gastroparesis. I awoke from a dream at 4 this morning where I was at the grocery store mulling over which antacid to buy, so even my subconscious is tired of this crap. LOL

I'm so cranky and exhausted from this misery, but trying to move forward and get better.

Thursday, February 15, 2018

An Update

I'm mostly upright, but weak and in a lot of pain.

I've taken a shower, washed dishes, put something in the crock pot, and even gone outside for a walk a few times. It was so miserable, I thought I might pass out from the pain. My upper body is twice as heavy as it used to be. I feel very "top heavy", as if I'm trying to balance a giant bowling ball on my neck and shoulders. Unfortunately, the giant bowling ball is just my big 'ol head. I'm still nauseated, but trying to eat regularly and take my medications.

I've got a long way to go before I can consider myself back to my (quite frankly pathetic) version of normal, but I look forward to getting there. Because there is better than here.

I rescheduled renal clinic from early March to early April. Hopefully, I'll be up to traveling by then.

I've been passing the time by watching Pokemon TV and the Olympics live feed online. I'm obsessed with both. I'll return to my reading marathons after the Olympics. I have a lot of books to talk about soon; I've torn through quite a few since the last book post I wrote.

Facebook still makes me want to scream. Twitter is a realm of insanity as always. I occasionally remember that I have an Instagram and post something. I forgot about Tumblr and Words With Friends (until now, actually). I joined Reddit; still on the fence about it.

This goes without saying, but I'm really freaking tired of mass shootings, and I'm really freaking tired of lawmakers offering thoughts and prayers, accepting big donations, defending weapons of war, and doing absolutely nothing tangible about the crises of our nation.

I am in far too much pain to sit here anymore. Talk to y'all soon.

Sunday, February 11, 2018

Things are bad at the moment.

I'm not going to go into major medical detail right now, but I have had a pretty bad episode, and I have been bedridden for several days. The pain was a 10 on the pain scale for a little while, as heard by my screaming and probably scaring the neighbors (hopefully they didn't hear me, but that's unlikely). I had my thumb on the button to call for an ambulance for a few hours, but I didn't go through with it.

I am, however, having to sedate myself to escape the extreme muscle pain I'm in. Most of my episodes are paralytic in nature, but sometimes my body surprises me with an episode of myotonia. This is what happened, which nearly resulted in passing out because of the location of the muscle; a vertical muscle running down the back of my head, neck, and shoulder blade. I haven't been able to turn my head since late night Friday. As of this morning, I can turn it about an inch. I have been successful in shuffling across the hall to the bathroom, and to pour water to take pills. Swallowing pills has been a battle...I'm amazed how challenging that is when you can't move your head at all. At any rate, I eventually get them down. Otherwise, I'm in a crumpled pile of agony on my bed, alternating between lying on an ice pack and a heating pad.

This episode is in addition to the bout of gastroparesis that was already making me sick. Gastroparesis is digestive paralysis, caused by a number of conditions. In my case, I assume, it's a result of muscular dystrophy (primary periodic paralysis, if you're new here). I ate a few pretzel chips yesterday. I'm drinking protein drinks today. That's all I've been able to do. My digestive system is a huge issue, and sometimes I think it's going to kill me way before MD does.

The medications I am currently on to deal with all of the above are making my body weaker (as I have complained about in previous posts...most medications aren't very safe for MD patients), but it's either take the meds right now and hope for the best, or find someone to put a bullet in my head. That's where I'm at. I'm being as cautious as I can, and it is a well-proven fact that I am safer at home than in a hospital subjected to protocols that don't acknowledge the risks of my rare disease.

In summary, some parts of my body are contracting too much, and some aren't contracting enough. If you know anything about that, you know that means absolute disaster. Thanks for thoughts or prayers or whatever it is that you do. I don't know when I'll be back, but I'll be back.

Thursday, February 8, 2018

My subconscious self is far more creative than my conscious self.

I had a dream recently. If you are on my Facebook friends list, you already read this. I just wanted to post it here for future reference.

A little girl of about 3 or 4 years old would evaporate into stardust and travel in a stream of green light to other worlds, where she would observe and intervene in their perils. I don't know if she could speak, but she had supernatural abilities in these worlds. She visited what appeared to be the Aztecs in another dimension, whose civilization was saved by her, and she was rewarded by the King with royal/god status and chocolate. I remember seeing things from her height/perspective, most specifically, adults in robes and headdress, and a large, beautiful pyramid that was green with mossy life. The girl returned to her own world, where she lived as a little girl again until she was called by the stars. The last thing I remember, she was in her mother's arms and began evaporating into stardust again, her mother crying "Return! Return!" in hopes of stopping it, but she became a stream of green light and passed through a series of glass...things...I don't know what they were...and she was gone.

That's what I posted on Facebook as soon as I woke up. I decided to do some research, and my best guess on the glass things is that they were lenses.

The lenses were rectangular, however, and there was no refraction or convergence. The stream of light simply passed straight through multiple semi-transparent objects and disappeared into the sky.

This is what she looked like when she evaporated and began traveling through the lenses.

This is almost exactly what the pyramid looked like, except it was covered in green, healthy moss. I don't remember seeing stairs, but they could have been on a different side from the one the girl was looking at (again, I was viewing from her perspective).

That was one vivid, unexpected dream, and a welcomed break from the usual anxiety dreams and recurring nightmares. I'll take more of that, please.

© 2018 All Rights Reserved

Friday, February 2, 2018

Why I Invested In A FoodSaver

I received an Amazon gift card for Christmas, and used it to partially pay for a mini Instant Pot. The Pot broke upon second use, and I sent it back to Amazon for a refund. Instead of getting a replacement, I decided to buy a FoodSaver instead (the small $59.00 model).


I've been tired of throwing out freezer-burned food, especially leftovers and frozen vegetables. It pains me to waste food, and I want to reduce the occurrence. Freezer bags, plastic wrap, and storage bowls, even giving my best effort to remove the air, isn't working.

I've been hoping to find a way to use fresh out-of-season produce year-round.

I've been wanting to get away from tomatoes in aluminum cans.

I've been wanting to save money by buying in bulk, but only cooking for one makes this problematic. Vacuum-sealing will allow me to portion properly, so I'm not overeating out of guilt.

Proper portioning will help me lose weight (something I still need to do).

Because I really dislike eating the same thing over and over, being able to portion and freeze meals will give me the variety that I prefer.

Throwing out leftovers from the fridge is unacceptable. Freezing it for reheating later is the solution.

The bags are BPA-free plastic and far less waste than throwing out plastic bowls. (Let's face it, nobody wants to hand-wash those slimy bowls. They never truly get clean enough, and they smell and stain. I always throw them out.)

I will no longer have to buy multiple bowls and bags in different sizes, and be stuck using products that are often way too big for what I'm trying to freeze. I will be cutting my own custom-sized bags.

I can finally store spices and fresh herbs in the freezer to prevent early expiration. I tried this last year, and even my herbs went bad from freezer burn. It was frustrating!

FoodSaver claims that food lasts 1 to 3 years in the freezer with their system. I will be testing that!

Vacuumed bags take up less space in the freezer, allowing for more efficient freezing.

I will have the option of sealing important belongings during a hurricane, if I choose.

Owning a vacuum-sealer should resolve all of the above. Ultimately, food saved is money saved, and it will eventually pay for itself. Hypothetically, if I previously threw out $8.00 worth of food per month, it is paid for in a year, including the cost of bags, with no food waste.

What I've done so far:

Yesterday, I vacuumed-sealed a quart of root vegetables, a pint of stir-fry peppers and onions, a tiny roast, and a large beef stew prep that will go straight into the crock pot when I'm ready.

Today, I'll experiment with cooked food. I'm slow-cooking chicken for future tamales. I also plan to prep sweet potatoes for Parmesan fries and will seal them in small batches for cooking later.

It may not sound like minimalism to have another appliance on the counter, but looking at the big picture, it absolutely is. Waste and plastics are reduced; space and money are gained.

I'll keep you posted on how this goes!