Don’t stop talking.

On an ice pack on the couch.

Some days, I feel like no one will ever understand my pain. It is so difficult to put into words the feeling of your entire body burning, as if you’re being torn apart limb by limb, every muscle screaming head to toe in desperation. I just want it to end most days. That’s the ugly truth. The internet, as terrible as it is sometimes, is a lifeline to people who exist this way. I’m thankful for the advocates out there who still find enough words to speak out when the rest of us are too tired to do so. I’m not entirely alone in this misery, even though it seems that way when I’m feeling my worst.

Your voice matters more than you can imagine, so please keep talking about it. Being heard and treated with empathy and kindness is the only hope some of us have left.

February So Far

Hello folks, I'm back. :-) Thanks for coming back, too.

I went on hiatus for reasons I will not state, but it was needed and I will say that February has gone a little better this year than last. If you've been here long enough, you know that last February involved the myotonic episode of doom which had me yelling in pain, throwing up, and unable to move. Bad times.

I have been feeling on the verge of these episodes once again, but so far I've been able to prevent them with Magnesium. That mineral comes with its own set of problems, but I've found it to be absolutely necessary to my function. Of course, I'm still on a tremendous amount of potassium, as well as kidney and heart drugs. I'll update the medical blog in the near future. I've been dragging my heels where that's concerned.

I remained on Facebook and Twitter most of the month, and didn't take a break from Instagram at all. IG seems easiest to deal with these days, and I'm learning how to tolerate the occasional buffoonery that I run into there (fun fact: Instagram is NOT A DATING SITE. Leave me alone! Rawr!), ha! It has been fine for the most part, and I appreciate the likes and nice comments I receive.

The biggest news is that I started counseling. What should have been an hour and a half intro consult turned into three hours. We both agreed there is a lot to address. I maintained my composure with the exception of mentioning kids in cages on the border, and dealing with ableism. Those subjects brought me to tears, but I managed to unload a lot of my life story without a problem in that short period of time. There's plenty more to talk about. While I am still having dark moments, and it was hard to bring up a lot of the things I've been through, I'm glad I decided to start this journey. My counselor seems kind, she's my age, and we agree on a lot of things politically-speaking, so she can relate to my frustration concerning that. We'll see how she handles the rest of my turbulent life, but so far, this has been a good decision. I have complete freedom in choosing if and when to return, and I plan to do that in March.

I hope if anyone is hesitating to seek counsel that you will choose to take that first step. I am on a low-income sliding scale that is reasonable even for someone with as little money as I have. Friends have been helpful too, and I appreciate them so much. It's good to know I don't have to deal with my brain alone anymore. I don't regret speaking out about how I was feeling, even if some people are judging me (who cares what they think, really)!

My photos are horrible, but I'm going to share anyway, as I do.

I tackled the storage room (this is a 2nd bedroom...I am overhoused as I've stated in the past). I can see the floor again, I swept, mopped, organized...yay.

Which wiped me out with muscle weakness. Boo.

I'm having more episodes lately for a variety of reasons.

Weather fluctuations are always a factor, if nothing else.

I discovered Murphy Oil Soap and it is my new BFF.

(You should have seen that range hood beforehand. Yuck.)

Due to Gastroparesis, I have decided to switch back to a mostly pescetarian diet. I didn't tolerate the other meats well at all, and things began going downhill again. I'm a plump woman, but nobody needs to be losing 23 pounds in 21 days like I did last year, including me. I do want to lose weight, but it will be done the right way or not at all. That's how I roll. The haters can deal with it.

(I was unfriended over this on Facebook by someone with body image issues. Sorry I'm not extreme enough for you. But actually not sorry. Peace.)

Anyway, I've stocked up on seafood, which is thankfully affordable here.

And I made my way to World Market to pick up a Clearly Canadian mineral water. Almost an hour later, I left with all of this. I usually hate shopping, but I can't resist World Market's food section. Thanks to my stepdad for covering the cost of all of this loveliness. My only lamentation was they had no Inca Kola.

Those chocolate bars are 100% slave-free, and I'm glad they had them in stock. I've followed Tony's on social media and know they're doing good. The bars are huge and will take me weeks to eat because I only consume 2-3 squares per day. It's totally worth it. I'll consider it an early birthday gift, I guess.

Pics of my occasional cooking shenanigans are on Instagram.

That's all for now, I suppose, but I'll be back by the end of the month.

Love to all.

Health Update 3/26/18

Zofran is my BFF right now. This has been a rough week, but it feels like my digestive system is trying to wake up. I hope I'm right, but I'm remaining cautious. I eventually want to incorporate baked or braised seafood and chicken in very small amounts, especially in soups, but I don't plan to start that today. I do have a future meal plan lined up for when I am ready to transition.

It does appear that I will have to give up beef, pork, and cheese indefinitely. I've done enough research to know that all of the above are difficult to digest, and cause a lot of problems for Gastroparesis patients. I'm also going to have to break up with my boyfriend, Coca-Cola, once and for all. I'm already aware that I shouldn't be drinking it anyway, so save your sermons. I do plan to try a few soft, fat free cheeses to see if I can tolerate them, but it'll have to wait for now.

I ordered two cases of EAS Myoplex Carb Control from Walmart.com. They're Fed-Exing it to me, so I should have it all by Wednesday. Those shakes are pretty expensive, but my current liquid/soft diet has turned out to be too high in carbs (I've been monitoring this on My Fitness Pal over the last several days). EAS's Carb Control line is perfect for me, and they taste ok. If I find that I improve over the next couple of weeks on my lower carb liquid/soft diet, I'll do my best to budget in the shakes so that I never run out of them. I can't imagine them not making a difference.

In related news, my Lose It app informed me this morning that I was awarded the "Lost 10 pounds" badge. Needless to say, I don't recommend illness as a weight loss method.

In Muscular Dystrophy news, I'm still having random spasms, but nothing like the myotonic episode of doom from a few weeks ago. I do remain weak and haven't fully recovered from that, with my head, neck, and shoulders feeling heavier than they used to (and they were heavy before, thanks). I hope that with time, the heaviness will improve. I continue to push myself in ways that single people must: cleaning, grocery shopping, etc. and it is a struggle every time, but I survive and crash into my bed until I can get up again. That's all I can do.

I don't know if I'm going to make it to Jackson in a couple of weeks. Driving isn't really the issue, it's simply being able to sit up that long. Currently, I'm in bed most of the day, and I have to stay near a bathroom. But if I'm feeling better by then, I'll go.

That's all for now, I suppose. Fingers crossed that my digestive system kicks in again. And as always, I appreciate the prayers and well wishes.

I'm a Burrito

I'm too tired to live, so I've decided to be a burrito this week. I don't have much of a choice. My spoons, as they say, are few. The weather is a big factor, but life in general is just plain exhausting these days. There's plenty that I wish I could do, but it'll have to wait. I have Internal Medicine on Monday. I'll give a health update after test results and such. Back to my blankie until then.

Back to back clinics

On Monday, I returned to UMMC in Jackson for renal/endocrinology clinic. I am very very lucky to have doctors who listen, care, and want to learn more about this absurd disease. It is assumed that my current condition is my best case scenario, and they are relieved that things haven't gotten any worse over the last several months. We agreed that the Keveyis fiasco was a bummer. Since my HKPP is familial, they asked about my parents and whether or not I have children. I reminded them that I am the lone ranger in this thing, my parents are deceased, and I don't have kids. As always, they are interested in my story and are happy to know Facebook support groups exist. Documentation is a big concern for me since social security owns me and will occasionally review my case, but the doctors reassured me that they were keeping up with my peril in writing. They said my labs look stable, and the glass is half full in spite of my condition. I'll return in one year unless something changes.

On Wednesday, I returned to Internal Medicine at the low income clinic in my little town. Dr. B is fantastic as always, and is willing to test anything that is even mildly questionable. He knows how frustrated I am over my permanent muscle weakness and that even with my potassium level in normal range, I cannot function well enough to perform basic household tasks at times. We discussed my episodes, and how I handle them without assistance (answer: I take potassium and lie down...all I can do really is ride it out. If I am unable to take potassium, I find the nearest place to lie down and I hope for the best). He was concerned about the fact that I live alone like this, and suggested I check into obtaining a Life Alert necklace. I probably won't be able to afford it, but I'll look it up. He told me to make sure I have my cell phone within reach at all times.

He took a stat panel like renal clinic did, and the numbers matched this time. Everything looks pretty good, thanks to my overwhelming daily regimen, and it is an improvement compared to the last couple of years of labs. He sent some blood off for additional tests, and I'll receive the results on Friday. I'll write a short update at that time.

Renal clinic is across the state line, and because my insurance refuses to acknowledge that, I am forced to pay in full to be seen there. It's very difficult - nearly impossible - to afford that but I didn't find a clinic in my state that would take my case. That's how I ended up having to travel 4 hours to an out-of-state hospital. They practically brought me back from the dead, and want to continue seeing me at least once a year (I want/need to see them as well), so I am going to have to find a way to pay for it. I explained this to Dr. B and said he would do what he could to help concerning labs or whatever it is they want to monitor in me throughout the year in between my visits there. He also has a medication assistance program, and it is the only reason I have access to my vital medications (which would be around $1000 a month otherwise and my social security is far less than that per month). Low income clinics are so, so important; in fact, downright life-saving for people like me. That's why federal funding for these places must be protected. To cut off access to medical care is to literally kill people. I would be one of them, but only one of millions. God help us.

As long as nothing crazier than usual happens, and as long as my sent-off tests come back in good shape, I am done with clinics until June.

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.