Magic Christmas in Lights

My muscles are paying dearly for this, but I had the opportunity to finally check something off of my bucket list, and I couldn't pass it up. I've been wanting to see the Christmas lights at Bellingrath Gardens since they debuted the event a whopping 21 years ago.

Yep, tonight was my first time to go to Magic Christmas In Lights. And it was beautiful.

Rest In Peace, Princess

Credit: James Hance

This is a devastating blow to what has been a year of immense loss in the Fine Arts world. Thank you, Carrie Fisher, for your talent, your humor, your honesty, and your advocacy. You will be missed by so many.

Edit Note: It has taken me awhile to come back to this, but I just want to acknowledge the fact that her beloved mother Debbie Reynolds passed away the following day. It left me pretty speechless. I can't imagine what Billie went through, losing her mother and grandmother within 24 hours of each other. I wish her comfort and peace as she moves forward after this profound loss.

A little bit of Christmas, in Pictures

I entered the holiday door contest. :-)

(Edit Note: I won! LOL)

I made goodies...mmmm!

(I also cooked a feast, but forgot to take pics!)

I received some really nice gifts from friends and family.

This isn't everything, but many thanks to all who thought of me.

And I...nope. Just kidding. That's not my hand! Haha!

It's my brother's girlfriend's hand. They are finally getting

hitched! I'm happy that I was present for the proposal. :-)

I crashed early, and had to spend the rest of Christmas in bed.

I hated not carpooling to Pensacola, but my body was struggling.

I accomplished most of my plans, however, and I'm ok with that.

I was determined to fight depression and embrace the season.

I cooked, visited folks, bought a few gifts with the little money I had,

and, in spite of my unstable muscles, I had a successful holiday overall.

I hope you all did too, faithful readers.

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.

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.

The Oxford Comma Perfectly Explained

Credit: https://twitter.com/MomentumOx

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.

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 disease. The CKD 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.

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.

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.

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.

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.

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.