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.