Friday, December 2, 2016

Sick :(

I have an upper respiratory/sinus infection...boohiss to the max! Not good news, as I am not supposed to take antibiotics.

Antibiotics inhibit neuromuscular transmission, which translates into severe/potentially life-threatening muscular dystrophy symptoms in my world. I've been there and done that many times, and it's rough. I'm not looking forward to the next couple of weeks ahead. I can't let the infection spread or get worse, obviously, so the only reasonable choice is to take the antibiotics.

The good news is that I'm not running a fever yet. My body temp makes a big difference in my ability to function, so fingers crossed that I can keep it under control.

I'll be back with some real posts soon. My couch is calling.

Monday, November 28, 2016

Spoiler-Free Review of Gilmore Girls: Year In The Life

I allowed myself 24 hours to process Gilmore Girls, and I've concluded that it was a hot mess in spite of decent acting.

The editing was pretty bad in some places. The first two episodes were better than the last two. I guess they thought the racial, sexual, geographical, and personality stereotypes were cute. Maybe you think they're cute. That's fine, I guess. I didn't laugh. We'll agree to disagree. I enjoyed that they brought so much of the original cast back. Great nostalgia, and some of the humor was reflective of the original show, which I felt was important. There was more language than usual, thanks to Netflix. The girls' banter was perfect, and I loved some of the characters just as much this time as I did watching them the first time. I am ok with how it ended, but it was highly predictable. I was expecting it.

I like the show; I just didn't like some of the scenes, which ranged from weak and tiring to straight-up weird. I said "what in the actual hell" more than once.

6/10, but I will watch a sequel if they make it. The actors/characters deserve a stronger plot and better editing.

Friday, November 25, 2016

Thanksgiving, with pups



I gave Jazzy some ham and rubbed her belly.
She says I am now officially the cool Aunt. 

Hope everyone had a nice Thanksgiving.
In spite of my debilitating health
and my equally terrible bank account,
I have much to be thankful for.

Tuesday, November 22, 2016

NaNoWriMo and Beyond

I exceeded the 50K goal last night, according to NaNoWriMo's official word count. I feel like it's a little bit off, as my Google Docs word count tells me I've written less. At any rate, I have turned so many circles in The Children of Mossy Hollow that I think it's safe to say that I'm in revisions at this point. That means the first draft is finally done.

It look a lot longer than I planned - four NaNoWriMos and a few writing camps. What makes me feel ok about dragging my heels is that I've had a lot to deal with since 2013, physically, emotionally, and otherwise. There is also the fact that my story involves a real life event in my own family history. It's about children who lose everything and are forced to start new lives away from the only home they've known. There is a lot of sentimental value in that. There were some sad moments, and those were hard to write. I also had to fill in a lot of blanks with fabrications of conversations and other happenings, and I desperately wanted to do the children justice for what they went through. It got to the point that I had dreams about the children. I have been writing stories since I was 8 years old, but I can say wholeheartedly that this has been a unique experience.

Revisions, I expect, will take as long as writing the first draft, if not longer. Then there is professional editing, formatting, book cover art, and all of the details that go into creating a novella. I don't know when I will be able to tackle those tasks, but I'll figure it out. I am not allowed to raise funds or even sell the book for profit when it's published due to SS restrictions. It will most likely be a charitable endeavor, or perhaps even free of charge. I'll keep you posted. At any rate, I look forward to sharing Annette, Odessa, Benjamin, Joseph, and Tilly with you in the future.

Thanks for cheering me on as I continue to write. NaNoWriMo ends on November 30, and I plan to add to the word count until the last day. My other writing projects still have a long way to go, and include a memoir (which will take years), a historical fantasy (The Kate Letters, 50% complete), a fiction drama about HKPP and adoption (Sisterly Love, about 20% complete), and a few short stories for both children and adults.

The plan is to move forward in December and 2017 with art projects. I have several that are awaiting completion, and I am constantly being inspired to learn new things. I am exhausted, but I am not about to let my supplies collect dust, so I intend to immerse myself in studies. Kandinsky is on the list, among others.

If you're in the U.S., have a safe and happy Thanksgiving.
If you're not in the U.S., have a lovely rest of the week.

My body tells me it's time for my second nap. TTFN

The Oxford Comma Perfectly Explained


Friday, November 11, 2016

NaNoWriMo and voice dictation (in its hilarious unedited glory)

Hello testing 123 this is a test I am testing voice dictation from my Mac book Pro and it is really screwing up my computer I am not happy with it at home backspace no dammit I said at all.

As you can see come, it is not completely accurate. In fact, sometimes it messes up so badly that I can't help butt crack up laughing at the errors. Ha ha ha see you what I mean?

National novel writing month has been quite and experience and and experience so far with dictation. I am writing a lot more words and it is getting many of them correct but sometimes it is a disaster and I have to backspace and start over by typing the correct Word or phrase. But most of the time I know what it's trying to say and I can simply move forward and continue speaking my normal novel not normal.

Oh boy do I have my work cut out for me in revisions.

I will blog for real later on hi just wanted to show you how funny this has been since I imagine some of my readers could use a laugh right now. God knows I could.

Talk to you soon.

Sunday, October 30, 2016

Sidebar Changes, NaNoWriMo, and other ramblings

This is probably the most boring blog on the planet these days, but here I am anyhow. I'm just writing to say hi, and that I removed several widgets from my sidebar that were either no longer relevant or no longer working. If you see any issues with the sidebar or any part of the blog, feel free to email me about it. For the record, I'm using Chrome, and it looks ok from where I'm sitting.

As you can see, NaNoWriMo has reset, and is less than 2 days away. I'm bound and determined to finish the first draft of The Children of Mossy Hollow, as well as work on The Kate Letters and a personal memoir. Between the three of them, I'll have no problem reaching the finish line. I just have to focus and get it done. I'm weak and exhausted, but otherwise I have no excuse. I've been working on The Children of Mossy Hollow since 2013. I WILL FINISH THAT DANG NOVELLA, YOU HEAR? That's me, talking to me. It will be done.

I haven't decided what I'll do about blogging next month. If I get a wild hair and want to write something that is relevant to my life (like renal clinic on the 14th), you're sure to hear from me. But I'm going to do my best to focus on NaNoWriMo. Never fear, my faithful readers, I plan to unload plenty of posts in December, especially since I need to play catch-up. It'll be real, it'll be fun, but it's probably not gonna be real fun. I'm too old and tired for that. I digress.

(My sense of humor is hanging by a thread these days. Bear with me.)

It's time to drink some potassium and lean on the sink to wash a few dishes. I'm struggling lately, but it's that time of year when the weather fluctuates so much, my body doesn't know what to do with itself. It's being a jerk right now, but I am hoping for better days ahead.

Talk to you soon.

Friday, October 21, 2016

Carpe Diem Journal: Today I Will... (10/21/16)


I managed to get every bit of this done today, in spite of my exhaustion.

I am so ready to go to bed, though, so I will talk to you later.

Tuesday, October 18, 2016

I know I need to blog, but...

...it's hard to know where to begin. I'll spit out what I can think of at the moment, but I'm probably going to forget some things. I'll be back soon, at any rate.

My anxiety has been off the scale lately, but seems to have calmed down a little, so I'm grateful for that.

I've had to delegate my laundry to someone else. It's worth the money, even though I don't have much to give. Going to the laundromat was quite literally killing me. There are a lot of things my body can't handle in this condition, and it will never not be immensely frustrating, aggravating, stressful and every other synonym for those words out there. Mentally I'm (mostly) normal, and I just wish I could take care of myself. I'll never accept that it's not possible, and I've decided that non-acceptance is ok. It's just the way things are.

I finally visited a beautiful art gallery on Dauphin Island, and met some really nice people. I don't know if I'll ever submit any art for their approval to display, but I look forward to going back again regardless.

I attended a birthday party for a friend, where we had amazing food and played a board game (Pandemic, if you're wondering). I'm becoming a gamer again.

My baby brother Max would have been 21 years old on the 17th. He is greatly missed by all who knew him. He was a sweet baby, and I think the family still feels very robbed by the fact that we lost him to SIDS.


His name can be found on the SIDS.org memorial page (I don't know who put it there, but it's been there for many years).

I'm prepping for NaNoWriMo, and I intend to complete the first draft of The Children of Mossy Hollow. I've told so many people that I'm doing this, I simply must follow through. Accountability will push me to the finish line, surely. I also have several other stories in queue to work on during NaNo in hopes to make it to the expected word count, which is always 50K.

I shut down my Instagram (for now) due to the terrible algorithm. I also closed PayPal, as it was acting weird and I wasn't comfortable with it anymore. I'll pay my bills in other ways. Etsy is also closed indefinitely, and I will eventually remove the button from my website. If anyone has an inquiry about my art and crafts, they're still welcome to email me for a discussion. I am not accepting commissions, however, and I haven't for a long time.

I'm being moved to a smaller apartment, as per HUD. They haven't given me a moving date or exact location yet, but it's supposed to be within this same complex. Fingers crossed that it won't be inundated with cigarette smoke like my current apartment was. It made me very ill, and required intervention by my family, and I can't cope with the thought of going through all of that again.

Current chalkboards:


Enough said.

Saturday, October 8, 2016

Quick MDA clinic update - Oct 2016

My chronic pain was acknowledged, my proximal muscles are continuing to atrophy, and there is nothing they can do to help since pain medications and exercise make me worse instead of better. Orders are to continue seeing my other doctors, take all of my medication, be mindful with my diet, avoid triggers when possible, rest rest rest, and return for documentation in one year.

Renal clinic is November 14th.

More blogging soon.

Thursday, September 29, 2016

September Catch-Up

I'm trying my best to not get too far behind on the blog, like I did last year, so I'm going to make this recap quick and painless, list style:

*The knot on my head occurred when my chalkboard fell off the wall and landed on my forehead. It's not a terribly large board, but it hit me so hard, my glasses flew off of my face across the floor. Ow. Rough day.

*Labyrinth was amazing. Great movie. Love for Bowie forever.

*I also saw The Neverending Story. I've seen it a million times, but it was cool to watch it on the big screen and see a behind-the-scenes show about it. Of course the tears flowed when Artex died, as always.

* I also saw a short film called Monsters Anonymous, which was a special screening at a theater in Waveland, Mississippi. It was directed by Jeremy London, and the humor was similar to that of Mallrats, in which he starred. He and his family live in South Mississippi, where he runs an acting studio. The actors did a good job, and the makeup was phenomenal. A portion of the ticket price benefitted Warriors for Willow. Consider giving that sweet girl a follow on Facebook.

*I have Muscular Dystrophy clinic in Jackson next week. It's been a while, and I'm not sure what to talk to them about, but I need to make sure my disability continues to be well-documented (I hope to God they're doing that). After my horrendous experience at the MDA clinic in New Orleans, I will just be grateful to be taken seriously, even if they tell me there's nothing else they can do. One concern I've had is not having enough money for a hotel room, and the motels have scary reviews. It finally hit me that there is a site called Airbnb, so I joined it and found what looks to be a diamond in the rough - a private mother in law suite in a gorgeous neighborhood on the edge of Ridgeland. I'll give my review when I get home.

*Taco Trucks On Every Corner was one of the funniest hashtags on Twitter ever. Absolutely made my day. The memes are probably lost in an abyss of political tweets at this point, but trust me...it was hilarious.  #TacoTrucksOnEveryCorner

*This campaign is agony, and I will be so glad when it's over.

I said I wasn't going to let this get as long as the last post, so I'll call it done. See you in October! P.S. - So happy it's Autumn!!!

Wednesday, September 28, 2016

Internal Medicine and Social Drama

Today, I had my last Internal Medicine clinic until January. It was thankfully undramatic. This has been a long year of tests and symptoms and medication changes, but I'm feeling somewhat optimistic.

My gastric study looked ok, which is good news since the only emptying drug on the market, Reglan, triggers serious paralytic episodes. Feel free to dig through my HKPP blog for that drama. The ending diagnosis is Gastroparesis. I also have GERD, but that has been known for decades.

As for my potassium level, raising my dosage to a whopping 200 mEq max a day helped a great deal. My level rose an entire point to 4.7, which was our exact goal. Yay! Ideally, it would be best for me to be in the low 5s, but I'll take what I can get. Dr. B was super glad about that.

My phosphorus lab had to be sent off. I'll post the result here when I receive it. Dr. B said if it's normal, that puts me in a good place despite my apparent chronic kidney failure. The CKF will be monitored, but there's really nothing they can do for me. It's chronic, not acute, therefore there is no cure. It's something I've known for years. It's just concerning, understandably, to see it progress.

I declined the social worker for a few reasons. I received many calls, which I missed, and eventually called them back. The lady said that I had accepted services on such-and-such date and that she was trying to set up an appointment to come to my house. I told her that not only did I not accept services yet, I had never even spoken to her before and didn't know who she was. She said it was in her computer that we had talked on that day and I said yes. I told her again that wasn't true. We went back and forth on this error, and she eventually said "sorry" and gave me my case manager's phone number. What case? Exactly.

Anyway, she explained that the case manager's job is to come to my place to talk about their services, ask questions (from a checklist that I hate...I'll address that another day), and check on me regularly. I told her that I would save the lady's number and call her if or when I was ready to discuss. I hung up and called my insurance to make sure they didn't receive a bill for services that I didn't accept or receive. They hadn't, thankfully, but I'm glad I checked. The fact that she said we spoke on that day and that I signed up when I definitely had not done so yet was concerning. I actually still have the missed call and voicemail saved in my phone as proof.

As I said, I told her I would call when I was ready to discuss their services. Within two days, I began receiving calls from the case manager asking if it was ok to come over to my place to ask some questions. I let it go to voicemail every time, and she gave up by the 3rd or 4th call. I concluded once again that people don't listen to me, and they don't respect my boundaries. Story of my life.

I'm not ok with someone knocking on my door unannounced on a weekly basis to ask me generic questions that don't apply to someone with a terminal illness, and that's what was going to happen. I had a social worker in 2014, and that's what she did. I eventually stopped answering the door. I would have done the same this time. I am fine with going somewhere and talking to someone - social worker, therapist, doctor - but I am not ok with them coming here, and especially popping in to check on me uninvited. As an introvert with anxiety, that derails me, and I have no problem admitting that. I spent the first 36 years of my life being denied boundaries. I'm not about to give them up now.

If I extend a specific invitation to you, or if I tell you that you are welcome here, then you definitely are. I don't want any of my friends or family to think otherwise or feel too intimidated to spend time with me. I wouldn't have set up gaming and art tables in my living room if it was a problem. For your consideration: I get very little sleep, and when I do sleep, it's at odd times. Nothing makes me want to melt down more than finally falling asleep, and being awakened by a knock on the door, a ringing phone, or a loud neighbor. One of my biggest issues every day is that I'm so exhausted, I can't seem to process things in a timely manner (brain fog). I draw a blank when dealing with someone. I really don't feel cut out for living, and I need a lot more sleep. I unravel quickly because I'm too tired and I want the world to stop waking me up, judging me, giving me a hard time about petty things like grammar (for the love of god, find something better to do), comparing my problems to theirs or others' (this is not a competition), making assumptions, or trying to fix me, and just be a friend. I'm the first one to say I'm not a pro at managing this turbulent way of life, but I'm trying. I appreciate those who have been patient and kind, and I thank you sincerely for understanding, or at least attempting to.

I'll edit the post when I receive my phosphorus level. I have another post to share also (it will be much shorter than this one, honest), so I'll talk to you soon.

Sunday, September 25, 2016

Finally...MGMG 1 (Carpe Diem Journal)


If you remember this post,
then this one makes sense.

If you can't read my handwriting:

Major Goals

Beat The Odds...
~ I don't want to be a statistic. I don't want to fit the stereotypes. I don't want to give up.
~ I want to be the healthiest version of me. I want to prove we are not all the same. I want the world to see how much I care and how hard I'm trying. I want no further regrets.

Mini Goals

* Fight like a girl!! :-)
* Be true to myself in all things.
* Stop worrying so much about what people think. The chances are high that they're not thinking about me at all.
* Eat small, consistent, healthy meals.
* Sleep as much as possible. I function better when I've slept.
* Take all medications every day. FOREVER.
* Practice daily self-care, even the stuff I hate to do.
* Practice what I preach.


Exhaustion be damned...let's do this.

Sunday, September 18, 2016

Living, Learning, Growing

"If you want to kill yourself, kill what you don’t like. I had an old self that I killed. You can kill yourself too, but that doesn’t mean you got to stop living."


Archie’s Final Project - Dir. David Lee Miller


Great words, and exactly what I’ve been trying to do. As much as I wish it was something that would happen overnight, I've discovered that redefining one's self is a process of revelation, learning, living, grieving, and growing.

It has not been easy, but it has been worth it.




I’ve outgrown my former self in many ways. I still have a long way to go, and I hope I never stop trying to be a better version of me, for the sake of sanity and humanity.

I keep reminding myself that it’s ok to outgrow others, too. I find myself clinging to them, because they’re what I know. But they’re hardly what’s best for me.

I have to do what’s best for me. Even if that means losing the people of my past. Even if that means losing everyone, and starting over.

Monday, September 12, 2016

It's Mom's Birthday


An oddity: I was cleaning the bathroom closet, and ran across a letter she had sent me in one of the drawers. There is no reason for it to have been in the bathroom closet, obviously, so it was a funny coincidence.

Mom was challenging, and her letters were unpredictable. Sometimes, they were upbeat and encouraging. Sometimes, they were a punch in the face. This one was a combination of thanks for the prayers and charismatic sermon...a bittersweet reminder of the person she had become.



I wish she had chosen a different path to healing, but it was her battle and her choice. It just hurts that the same conditions I have fought for so long are what took her life away. When she told me she was dying, she said she regretted her decision to refuse medical care (she disregarded both HKPP and cancer), but I know she was tired and wanted her pain to end.

Everybody's got something. You never really know what is going through someone's head, and I can't claim to understand why she lived and died the way she did. I just hope she's resting in peace.

PawPaw Odin and Family (yes, THAT Odin)...

It's a long story (more on Facebook), but I've been working on my genealogy and it actually traced my maternal grandfather's side to British royalty and all the way back to Viking rulers who were worshipped like gods. It literally says I am a descendant of Odin (and his parents and grandfather), and I have the entire line documented in my family tree now - about 65 generations to the 100 CE era.


Is that bonkers or what?

Viking genealogy is sketchy, because sometimes legendary figures mingle with family history. It's really no different, though, than someone claiming they're related to Jesus or Moses or Adam and Eve or Hare Krishna or the Dalai Lama. These people exist(ed), but are(were) followed and revered as extraordinary. Whether true or not (my head is not in the clouds...pun totally intended), I won't ever find anything better in my genealogy than this, I'm pretty certain.

I'm still looking, though. I've come close to confirming my direct relation to the pilot of the Mayflower, which is pretty cool. MawMaw was a Clark. John Clark and his relatives are traced back to England in the year 1000, last I checked.

My tree consists primarily of France and England, with some Celtic, Viking, German, and Choctaw in the melting pot as well. Several of my great grandparents were first settlers of prominent cities in the U.S., Canada, and Europe, and I look forward to sharing about it all in the future.

Sunday, September 11, 2016

Labyrinth




Feeling like a whole lot of hell,
but I couldn't bear to miss this
special showing of a classic film
that I have sadly never seen
(shhhh...don't tell my friends).

I know the pic is terrible, but 
do you see the lump on my head?
It has been a challenging week.
I'll post a health update tonight.


Edit: Make that tomorrow night.

Edit again: Make that next week. Sorry.

Saturday, September 10, 2016

Organized Chaos



If you only knew what this closet looked like a few hours ago, you would be proud of me. Crap in dusty cardboard boxes stacked up awkwardly on top of each other...it was shameful, really. This may qualify as organized chaos, but it actually looks like a woman lives here now. Most of the stuff is 2-10 years old, but by golly, I'm determined to use every bit of it.

I've purged and reorganized several closets and the pantry over the last 8 months. Slowly but surely, my government apartment is looking like a home.

Long way to go, but I'm getting there. I'm still struggling with the fact that this is where I'm living out the rest of my days. It's not where I intended to be, to say the least, but I'm trying to make the best of it.

Tuesday, September 6, 2016

Family Mystery Solved!



I have been trying to find my biological maternal grandparents' genealogy for the longest time, but I could not find my grandfather's records to save my life. It has been so strange to conduct worldwide searches on every ancestry site known to man, Google, and the National Archives, and find no trace of my grandfather's childhood. The only thing I had been able to locate was his name on the 1940 census. He was a 26 year old divorced lodger in Mississippi. But there were absolutely no records of him before that, so I couldn't find his parents or siblings or anything at all.

I had free access yesterday on Ancestry, so I decided to comb every census in Mississippi between 1910 and 1940 with the surname. I knew he was born in 1913 and had siblings. I searched his name, possible sibling names, possible parent names, possible misspellings of the last name, and after a few hours, I finally ran across something that caught my eye: a boy named May.

He was 6 years old on the 1920 census. He had 4 siblings (two more were born later), and they lived in central Mississippi.

The parents' names were Henry and Laura. I searched for them on Ancestry to find the name Mahlon listed under sons. Nope, that's not right, and I knew it wasn't. A quick Google search confirmed that "Mahlon" didn't exist. Somebody got it wrong.

I went back to censuses, and searched for Henry and Laura in 1930. Jackpot. I found some of the children listed, including a 16 year old son whose name had been butchered by the census taker. I remembered on the 1920 census a different name starting with "OT" had been started, scratched out, and replaced by "May". On the 1930 census, it said "Mabel". And over that name, an obvious correction to the name "Mablum".

My grandfather's name was Otto Mablum, and they called him May.

To add insult to injury, he grew up knitting pantyhose for pay.

He hated his parents. That I knew. I also knew that he made hosiery, changed his name to "Mace" in adulthood and moved out of their house young. He married, had kids, and was divorced by his mid 20s. He met and married my grandmother 5 or 6 years later.

There isn't a thing wrong with his name or the fact that he was a knitter of women's underwear, but it's important to put this into historical context. We're talking about a young Southern Baptist man in early 1900s with brothers named Harvey, Henry, Al, Joe, and James. He was May the Knitter. I was told he was mean and rough...a fighter. Well gosh, he probably had to be.

My grandfather had a rocky life, and he made his wife and children's lives equally rocky. Not only did he have psychological issues from childhood that manifested in abusive ways, he had hyper-religious OCD and was hospitalized for paranoia. Sadly, he is also suspected to have had undiagnosed Periodic Paralysis (not related to mental illness...HKPP does not affect the brain), as did his mother. Both were written off as crazy, and they never received any medical help for their episodes. In spite of that, they both lived into their 60s.

This is a sad story, but I'm glad I finally found my grandfather, great grandparents, and even my great great grandparents after searching for so long. I have their burial information, thanks to Find A Grave, and I'll hopefully be up to making a road trip to the cemetery someday.

Saturday, August 27, 2016

Yes, folks, she has a brain!

I missed a block party in my hometown today. I was much too weak and in too much pain to go, even on the walker. I'm making a lot of plans these days, but most of them are on a "just in case I'm strong enough" basis. I had a great dinner and game of Clue with a friend last night, so that was cool. I was planning to visit a church tomorrow (more on that later), but I doubt I will be up to going. I can barely walk at the moment.

Since I'm stuck at home, I'll go ahead and blog the results of my follow-up with Internal Medicine. TMI warning, as always. In a nutshell:

- my brain is normal as per CT scan (yes, folks, she has a brain!)
- my digestive system is low-functioning (this is why I always look pregnant, by the way), no cancer found in my upper GI tract, but I'm scheduled for an intestinal MRI on Monday due to concerns.
- extremely high amounts of potassium brought me back into the low 4s, but I really need to be in the low 5 range to have maximum mobility (which is much weaker than average to begin with, needless to say).
- I am finally on a prescription phosphorus supplement, and will return in one month to have my levels checked.
- Magnesium, sodium, and Vitamin D are currently normal, which is a feat that I don't believe has ever happened before, at least not simultaneously.
- The doc prescribed an antibiotic to try to force my stomach to contract. I'm not supposed to be on antibiotics, but since we confirmed that Reglan puts me in the ER with serious paralysis, and surgery for a gastric pacemaker is very high risk, we agreed that this was a slightly safer option. I'll start it after the MRI, and continue it only if I don't experience unmanageable HKPP symptoms.
- I was offered a social worker to help me manage my disability. I'm still deciding whether or not I'm going to go through with this, only because their policy is to come to my place instead of me going to theirs. Knocking on my door, uninvited, to ask me questions from a checklist every week is an anxiety trigger, and I actually felt better when I told the last social worker (2014) to close my file. So, I don't know.

Thanks for the love, prayers, well wishes, etc. always.

Sunday, August 21, 2016

Keveyis article that I may or may not have shared

http://www.biopharmadive.com/news/Taro-keveyis-free-rare-disease-drug/418564/

I know I've mentioned it here before, but here's a short article about ‪Keveyis‬ being given to patients free of charge after lack of profit.

One reason for the marketing downfall is that several of us with Periodic Paralysis were unable to tolerate the drug's potassium-wasting potency, which caused us to get worse instead of better. In my case, I'm already on very high amounts of prescription potassium, but it wasn't enough to supplement the loss that occurred on the drug. Anybody with severe Periodic Paralysis will tell you that even the smallest fluctuation of potassium in the bloodstream can affect us. If prescribing physicians aren't familiar enough with voltage-gate ion channelopathies to know how they work, don't expect them to understand how the drug works and how to compensate for the potentially catastrophic side effects. Doctors hear the word "Hypokalemic" and look up dichlorphenamide and think we're bonkers because they don't understand the condition nor the the way the drug manipulates the kidneys and muscle channels to prevent depolarization. A little education can go a long way, but when it comes to our rare disease, a great deal of (continuing) education and experimentation is required. Unfortunately, most doctors aren't up for that, and patients suffer as a result.

While I figure the change from over $100 a pill to free is a write-off for Taro, it's one that is helping patients who are benefitting from the drug. There aren't many, but the ones whose lives have improved are worth it. And for that, we sincerely thank them for their contribution. It's not something to be taken for granted in a country full of capitalist asshats like Martin Shkreli.

I'm still so disappointed that Keveyis didn't work out for me. But knowing my turbulent history with Periodic Paralysis, it wasn't the least bit surprising.

Monday, August 15, 2016

Aug 11 Test Results

I picked up my test results from the clinic today.

Phosphorus is still too low, potassium needs significant improvement, and kidney function has slipped again. In better news, after heavy supplementation (over 150,000 IU a week), my Vitamin D is finally in low-normal range for the first time in my adult life.

I will continue all scripts, my K+ dosage has been increased again and is now 200mEq a day, and I will have to keep searching for any possible way to bring phosphorus back into normal range.

I have a CT and Barium swallow test at the crack of dawn Wednesday.

Thursday, August 11, 2016

Internal Medicine August 2016

I spent the afternoon at internal medicine clinic. They administered emergency potassium because it was 3.7 and I could barely lift my body. (Feel free to visit previous blog entries if that number makes you skeptical, as I've already explained why the 3s are a very bad place for me.)

I had the usual panels of blood work (Stat K+, BMP, Mag, Phos, Vit D), and based on results vs medication doses, we agreed again that my body isn't absorbing my diet or supplements well at all. No solution known.

New GI and CT scans are being scheduled, assuming insurance approves, to monitor my choking and swallowing issues and double-check my head since the migraines and auras are so severe.

I met the on-staff social worker for the first time, who is getting me back in the door with social services, as well as arranging free transportation to future doc appointments that are scheduled in my county. That'll be interesting.

The social worker and Dr. B both assured me not to worry about my impending SS Disability review. I don't know why it has worried me so much, but it has, and I'm relieved to know they have my back. My disability is dead obvious, but my anxiety loves to play worst case scenarios over and over in my head. I'm sure social services will probably offer therapy, and I'll accept. I think everybody should seek counseling at some point in their life, even if only to confirm that it's unnecessary. I dare say nearly everyone could benefit from it. At any rate, I am not considered a severe case, according to the social worker, but I certainly have enough on my plate to qualify for services. We'll see what happens.

I'll post my test results when I know them, and I'm scheduled to go back in two weeks for follow-up tests.

Tuesday, August 2, 2016

On Child Sponsorship Charities

If you sponsor a child or are considering it, you definitely want to read this article about World Vision. But I would also like you to read my story below.


I sponsored a child through Compassion International for 8 years. I received translated letters, photos, and an invitation to Brazil to meet my child (I was too sick and broke to accept their offer). When his sponsorship expired due to leaving the program to get a job, I received a phone call from Compassion informing me of that, with the option to begin sponsoring a new child or to end my relationship with them altogether. There was no pressure whatsoever. I thanked them for their honesty, and I left the program.

People may wonder if my child really wrote the letters and drew the pictures. Considering that the pictures drawn were consistently similar over such a long period of time, and the fact that told me he was waiting to turn 14 so he could go get a job at the local Audi plant (and then did so), I believe he really wrote the letters. He also sent me a thank you letter every year after Christmas, and told me exactly what he received with the money I sent. The last photo I received of him was of him posing with his new soccer ball. The letters included his original letter with an accompanying translation from his program manager.

I have known of people who have traveled many times to meet their sponsored child through Compassion International. Their stories are not a hoax. Compassion used to send me annual financial reports, and Charity Navigator (an unbiased company who reviews charities) has consistently given them good ratings.

The article I have shared is in reference to a DIFFERENT organization, World Vision. I do know that World Vision has done some great things in communities all over the world. In fact, they are always on Ground Zero when a disaster strikes, doing what they can to help the suffering. This is fantastic, and I don't discount that work. However, if you are sponsoring a specific child through World Vision or any other children's charity, and you are not having the experience I wrote about above, something is wrong. In an organization as large as this one, there are bound to be communities and managers who aren't doing their job. What happened to this man from Australia, and his sponsored child who didn't know he existed, should not have happened.

I suggest doing extensive research on charities like these before committing. And while being optimistic that they are going to do right by both you and your child is nice, I would advise keeping in close contact with the organization to ensure that they are doing what they claim they're doing for you and the child you chose. They have your money. You have a right to keep them on their toes.

Thanks for reading, and I hope this helps.



(Cross-posted to Thoughts & Theories)

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 - ugottafriend4life@gmail.com. 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.

Beeeeautiful.

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.