Monday, October 20, 2014

Local Clinic Update 10/20/14

I woke up feeling pretty horrible. Trouble breathing, felt like something was sitting on my chest, and the usual HKPP weakness, but a little worse. I ended up dozing for as long as possible, then forced myself to get up and get rolling to my local doc office. Lots of blood taken, and over a two hour wait, but as usual it was worth it. My doc is great. My strange condition is interesting to him and he seems to enjoy talking to me, to the point that he picks on me like we're friends and we have a laugh. Today in reference to low Vitamin D, he joked that I need to be thrown out into the parking lot with no clothes on to soak up the sun. That produced a belly laugh in me that I've yet to completely shake two hours later. Sometimes, a friendly and upbeat bedside manner can make a huge difference, even in the face of a no-win medical case. Everywhere I turned, I used to deal with skeptics treating me like a lowly idiot who couldn't possibly know what she's talking about. Now I finally feel like I have a collaborative team - listening, learning, and striving to keep me going. Thank God.

I had a lot of labs, and should have the results tomorrow or Wednesday. We're checking vitamins, magnesium, and doing the usual basic metabolic panel. My stat potassium was 4.4, which was an improvement from renal clinic in Jackson. I had taken 200mg Inspra prior to the appointment, so I believe I have that to thank for it. The potassium level goal is still somewhere in the low fives, as that is where I functioned best years ago. Hoping I'll get there again someday, and somehow keep it there.

I spoke with him about the possibility of sleep apnea. He said there is a new clinic in a nearby city, and he believes they take Medicaid. Touchdown! I'm being referred.

I've been having significant issues with my bladder since beginning diuretic therapy, and my doctor sympathizes because he has the same issue (he gave me all the TMI, bless him). He has been trying to get this under control for me since the day I met him. I have samples of a drug called Vesicare to try. So far, anti-spasmatics have resulted in paralysis, but maybe I'll get lucky with this one. I'll give a report in a few days.

I'll return to the clinic next Monday and the following Monday for potassium labs. Otherwise, I guess my next appointment will be with a sleep specialist in a few months.

I'm Way Ahead of You, Fortune Cookie

New Location For My Periodic Paralysis Article

A random stranger uploaded my Yahoo article on a PDF site a while back, which turns out to be a good thing since Yahoo shut down Voices and erased all freelance work. I've been wanting to find a new place to submit it for publishing, but this will do for now.

Those who have shared my article over the last 2.5 years, please feel free to replace the bad Yahoo URL with this one. It has been corrected in my sidebar as well. Thanks so much.

The Battle Against Periodic Paralysis

Sunday, October 19, 2014

A blog rant, humanity, and the state of medical care

I wanted to share this blog post from a lady who had an unfortunate and very familiar experience with emergency care. Language alert for the easily offended.

I've been there. I've been in an emergency situation at the mercy of people around me, only to be mocked, mistreated, and misunderstood. It happened for years. I have been told of so many nightmares of people going through this kind of shame in medical care, and while it's nice to know I'm not alone in my battles, it's sad and unacceptable that this is still so common. I'm glad Ilana is telling her story. More patients need to put the truth out there, no matter how ugly that truth may be. Sometimes, shouting is the only way to be heard.

Doctors and Nurses: if you want to do the world a tremendous injustice, go ahead and assume every young person who rolls through your door is a drug seeker. Go ahead and assume they're being overdramatic and that their symptoms are exaggerated. Go ahead and assume that just because you haven't heard of it, or have never treated it, it must not be valid. Go ahead and do harm, if you dare. Just remember this: your paranoid and uninformed assumptions don't make you smarter or more superior. They only make you a closed-minded jackass.

I struggle greatly with the state of the world. I've learned that where there is good, there is bound to be bad. It is inevitable in all of us, as humanity is deeply flawed. The way I see it, if people want to screw up their own existence, that's their business. But when someone else's well-being is at hand, humility and willingness to accept education, ideas, and possibilities go a very long way. It can save lives and livelihoods. I believe it has saved mine.

My heart goes out to every patient who has lived through these scary and frustrating moments. It took a life-threatening decline in my condition for people to finally listen to me and take me seriously, and I can't help but wonder what my life would be like had I received the care I sought unsuccessfully for 20+ years. At any rate, I am very thankful that I have now found a team of physicians who are in my corner and are doing what they can to help. I wouldn't trade them for anything. I only wish to God I had found them sooner.

(cross-posted to my HKPP blog)

Thursday, October 16, 2014

A Few Page Updates

Just a few mentions from the sidebar:

National Novel Writing Month is coming up fast! I've joined and will be a NaNo Rebel again this year, as I will be continuing last year's projects. I'm about half finished with The Children of Mossy Hollow (formerly called The Lost Children), and I intend to finish the first draft during NaNoWriMo. Feel free to be my buddy over there!

I'm still on, although sporadically. I've answered a little over 300 400 questions, so you can get to know me pretty well just by following along. Feel free to ask me anything (it's anonymous), but be aware that I block trolls and ignore questions of a sexual nature (I'm sure that's not a surprise).

I've finally started updating my Etsy Shop again! Much more coming soon, including some of my drawings and paintings. All sales support my fight against systemic disease. Stay tuned!

Introverts Are Awesome

Loved this article on the misconceptions about introverts.
I couldn't have written it better.
Whether you're an introvert or extrovert
or somewhere in between,
I urge you to give it a read.

There's a great community called Introverts Are Awesome.
You'll find me and thousands of other introverts there.

Wednesday, October 8, 2014

This week, a medical recap. I know, it's been a while.

So sorry for my delay in updating blogs. My laptop (lovingly/frustratingly named "Bessie Mac") had to be wiped out and resurrected. I'm just now getting it up and running again as of tonight.

I've been in Jackson this week doing the clinic thing. I figured I would go ahead and share here what I posted on Facebook. I'll be back soon to catch up on things. Thanks!


Huge financial dispute that made me so frustrated this morning, my blood pressure was up for the first time in a long time. I don't know what's going to become of it, but I am trying not to worry about it right now.

Met a new doc at MDA. Very nice. He documented my updates: Mom's death, my hospital stay in June (more on my blog later), and my loss of strength and proximal muscle tone. My arms were very weak, but leg reflexes were slightly more responsive than usual. He reminded me to eat low-carb, recommended vitamin B2 for my migraine, told me to surround myself with all things happy and try to stay distracted from my circumstances. He's one of several docs who have said this over the last 6 months. I hope that explains a little about my behavior on social media and life in general. I'm a realist, but escapism is important when you're trapped in a broken body and stuck with a life and future you cannot control.

Was over an hour late to renal clinic, but thankfully Dr. F waited for me. He noted my potassium level, weight gain, breathing and sleeping problems, chronic pain, and Mom's death. He wants me to find a sleep specialist anywhere in Alabama who will take me. He believes I have sleep apnea. We reviewed test results and we're both still pretty baffled by the general wackiness of my kidneys. We had a chat about the latest meds and symptoms, and the fact that I am needing to move back to Mississippi. He made a note that I'm looking for government housing in the area, and said he will always do whatever he can to accommodate my schedule because he knows how far I'm having to travel. This situation is a nightmare, but I always leave feeling a lot better emotionally after talking to him. He has so much patience with my moodiness and awkwardness, bless him. Best doctor ever. His nurse is a lot like I am. We talked about Doctor Who, Sherlock, and Comic Con. Geeks unite! :-)

New meds added to the pile: spironolactone 25mg titration, vitamin B2.
Orders: potassium test in a few weeks (to be done in Bayou La Batre).
Appointments: Back to back clinics April 14th - and may God bless them in advance as that is the 1st anniversary of Mom's death. Might be a hell of a day.

My docs at UMMC have sustained my life, and I need to continue to see them for as long as possible. I could have never done this without a two-night stay in a nearby hotel. Very grateful to the Bradley family for making this happen.

Tuesday, October 7, 2014

Painted Bra Art Project Auction

So sorry. I am horribly late in posting the auction information. I've updated it on the original post here.

It needs bids. Every dollar goes to help breast cancer patients.

Wednesday, September 24, 2014

The New Doctor Who

I have to be honest. I was concerned that I would be disappointed with the new season of Doctor Who. With another actor replacing Matt Smith, I didn't know what to expect. I read a lot of articles that said Peter Capaldi was much darker, and had a turbulent relationship with his lovely young companion, Clara Oswald (who is played by Jenna Coleman, of whom I am a fan). So I was a little worried that my adoration for this show would fizzle.

Boy, was I wrong. Holy epic win, Batman, it is OUTSTANDING.

So much, in fact, I actually like Season 8 more than Season 7. Both actors are great individually, but Peter and Jenna are absolute perfection as a team. They are now in my top three favorite Doctors/Companions of the entire canon, and that's really saying something.

So gorgeous.

We're headed toward episode six in the season, and every character has been strong and memorable so far. That's not always the case, but I honestly like every character at the moment. I am hoping the last half of the season will maintain its momentum and keep us on the edge of our seats. There is a rumor of Jenna leaving the series in a huge way at Christmas, which will rip my Whovian heart out, but I can't wait to see what happens.

Don't leave me, Clara. Don't do it girl.

I'm a member of several local Doctor Who groups on the gulf coast, and I've had a blast analyzing each episode and throwing theories out there to the fandom. I even made the trip to Gautier and watched the premiere at a gaming shop that was showing it on their big screen TV. The best part about that night was my first photo in a BBC officially licensed TARDIS!

I was in full-blown geek mode. I'd say forgive me for the bad pic, but I'm not sorry.

Indy 500, my rolling walker, was a couple of steps outside camera range. Glad I didn't break my neck getting in and out of the police box. That would have been a heck of a way to go.

Two days later, Indy and I drove to Gulfport and went to the theater to watch it again with other Whovians. It was a sold out event!

Doctor Who is a wonderful, positive force in the entertainment world. I'm glad I get to share a planet with it. 

Tuesday, September 23, 2014

Sweet Retreat Art Exhibition Pics

(Photos were taken prior to the opening.)

Bio and FAQ

Oils and Acrylics

Charcoal, Ink, Acrylics, and Colored Pencil

Lovely sandwiches, cookies, and punch were offered to the guests. Sorry I didn't a pic of it, but it was all on that table on the far right.

A surprising favorite was my Graphic Autobiography. This was a Typography project from college.

About 40 people signed the guestbook, which is a perfectly fine number for someone who is unknown and having their first showing. It was wonderful to see family, friends, and former students come together. I was on my walker, but I handled it pretty well. The exhibit is up through the end of the month, so I look forward to reading my guestbook to see who else stopped by for a visit.

I'm grateful to Ina Thompson Moss Point Library for hosting my art, and for all of the support.

Thursday, September 18, 2014

I'm here, sort of!

I swear I'll catch up on my blogs. The last month has been a whirlwind. Plenty to talk about, and I will soon. There may even be pictures.

The art reception was nice. Small crowds are the best kind of crowds. It was great to see old faces and new. Certainly a memorable experience, and I appreciate the library for hosting my work through the remainder of the month.

The Mac (whose name is now Bessie) is still down for the count. I'm using a hand-me-down Acer tablet, of which I am extremely grateful. I have such thoughtful friends who come to my rescue often, bless them. It's a relief to not be disconnected from the world, in fact, I can do quite a lot on this thing. It's just taking some getting used to. Bessie Mac is headed to a service center next month, hopefully.

Hard to believe Autumn is nearly here. My muscles are already showing tremendous opposition to the weather changes. MDA and Renal clinics are coming up in 3 weeks.

I promise I'll be back asap.

Wednesday, August 27, 2014

My computer is down...

Just letting everyone know what is happening. I'm typing this from my phone but I'm not terribly good at blogging from it. I hope to be back very soon. I have been so busy, but will be able to take a bit of a breather after my show on the 2nd. I promise I'll share some pics from the event.

Wow, this is really happening. 

Hope to see some of you there.

Saturday, August 16, 2014

Tuesday, August 12, 2014

A Sadder Place

Three days ago, I was doing silly voice impressions at my one year old niece. My sister in law laughed, and I told her I should have been Robin Williams' kid. Little did I know, this warm, funny, talented man would end his life only hours later.

When I was young and stupid, I called people who committed suicide "selfish". Instead of kind words, I turned their very real medical condition into a violation of my feelings. How very pathetic - and selfish - I was for that. I'm so sorry to those I unknowingly disrespected when I didn't "get" it.

I eventually began to experience close encounters with suicide: a friend's husband, another friend's ex-boyfriend, and an uncle, to name a few. I am the type of person who wants understanding. I demand reasonable explanations, not speculation, blaming, or hyper-religious BS. So I sought education, and it made me realize how very wrong I was about this thing called suicide. It is a fatal symptom of a psychological and often physiological condition that the victim wouldn't wish on anyone. We've all had an ailment that required medical attention, haven't we? They didn't choose their illness anymore than we have chosen ours. This is not make-believe. People can't just "be positive" or do charity work or simply think of those they love in order to "snap out of it". They're not making up their problems, nor can they wish them away. We will never fully know the pain someone else lives with, but for the love of God, can we look past ourselves long enough to have a thread of respect for the patient? Only a scumbag would insult someone who is sick and desperate for relief. Don't be that person. Don't be the person I was when I was young and dumb.

Mental illness is just that - an illness. Sometimes, and in the case of Robin Williams, people who are sick seek help. He was in the hospital not even three weeks ago. He wasn't a coward, he wasn't in denial, and he wasn't prideful. He asked for help. But sometimes, just like a physical illness, the treatment doesn't work. That is reality.

May God have mercy on our ignorance.

I pray you rest in peace, dear Robin. The world is a sadder place without you.

(Cross-posted to Thoughts & Theories)

Monday, July 28, 2014

So, so, so so busy.

Good Heavens, where do I begin?

I released my first short story, "Four", on and received a five-star rating. That was nice. Some people are too weirded out by it to give me a review, understandably, but I am so happy that I wrote the story. The feedback I've received has been incredible, and even a small impact is an impact nonetheless. That's good enough for me. Totally worth it.

I'm still in Camp NaNoWriMo, and it's going okay. I have made a good bit of progress on my novella, The Children of Mossy Hollow, and I have every intention of completing the manuscript by the end of NaNoWriMo in November. I met with a couple of local writers today and we have agreed to meet several times a year for the purpose of progress and motivation.

I've gotten quite a bit done around the house. It's still not sold, but I'm packing up what I can and getting things sorted. I'm selling things that I'm not using and using the money to get some of my artwork framed.

That leads me to the big news. I am being given an art show.

I asked the library if I could put a few paintings on display. They visited my newly renovated webpage, and told me it will be an exhibition complete with local press, advertising, and a reception with refreshments, etc. I told the manager that I wasn't wanting all of that, but it's their policy. So here I am, having my own solo art show. I am both excited and terrified.

As long as a hurricane doesn't blow through, here's the scoop:

"Sweet Retreat"
Tuesday, September 2nd
5:00PM to 7:00PM
Ina Thompson Library
Moss Point, Mississippi

I've been running around like a headless chicken trying to get work framed and presentable. Much of my art was boxed up in the storage room, but now it's sitting out all over the house.

I'm also working on new pieces for the show.

I am planning to display something in the neighborhood of 16 pieces, but it may end up being more or less. I am actually going to have about 23 on standby, but I am almost sure all of them won't fit on the walls. We'll see what happens. There is absolutely no way I could do this on my own, so thank goodness, my wonderful stepdad is going to help carry and hang the stuff. The man is a saint, God bless him. I hate that Mom isn't here to see this. My art was really the one big thing I did that made her proud. So this is for her too, in a way.

It has been years since I've been in a spotlight, and I don't care for it much. I am looking forward to the show, though. It would be awesome to see some of you there. I'll keep you posted, friends.

Sunday, July 20, 2014

Gulf Coast Art Studio

I'm slowly beginning to take commissions again
in spite of stress, migraines, weakness, etc. etc.

Let me know if there's something you're interested in
and we'll have a chat about it. Even if it's something I
can't do, I know so many artists who probably can.

I'm hoping to display some of my art at one of the
local libraries soon. I'm supposed to call Monday.

I'm overwhelmed with ideas & wish there were a thousand
hours in a day, complete with the necessary muscle power
to accomplish them. For now, they'll have to stay ideas.

But as I've proven many times before,
I don't give up easily. :-)

Thursday, July 17, 2014

"Four" by K.B. Sarge

So happy to finally introduce the world to Felix Valentine!

Hope you will read and share. Much more to come!

Thanks everyone!

Wednesday, July 16, 2014

Saturday, July 12, 2014

The last two and a half weeks

I have been busy since being discharged from the hospital.

I drove to Bay St. Louis, MS, stayed overnight, applied for public housing, had to go home to get more paperwork, drove back to BSL the next day, had breakfast at an amazing place called Grammy's Donuts & More - best biscuits and gravy I've EVER had - and drove home. Notable restaurant names I saw: Mother Cluckers, and Slap Ya Momma BBQ. Ha!

Made an awesome homemade pizza,
and beans and peas with honey ham.

Put myself on Mobile County's public housing waiting list, which is impossibly long.

Read Paper Towns by John Green. Loving me some John Green lately. I'm a big fan of his wife Sarah's website too.

Had a great Philadelphia roll at Jacks By The Tracks in Pascagoula, MS.

Caught up with Camp NaNoWriMo by putting a large dent in my novella, now called The Children of Mossy Hollow.

Picked up French bread at Jimmy John's in West Mobile, AL and saw a guy there who looked exactly like Vincent Van Gogh. He even had the hat. I can neither confirm nor deny if he was missing an ear. Sorry I couldn't get a photo.

Got my finished color pencil project professionally framed.

Ended up in some crazy traffic on the 4th of July. So crazy that I almost regret leaving the house, but at least I made it home safely.

Met with a social worker (more on that later) and two doctors. Had an upper GI. Still having digestive issues from that. Still waiting on results of the test.

Attended an event at Ohr-O'Keefe Museum in Biloxi, MS.
If you don't know who "The Mad Potter of Biloxi" is,
or the designer of this facility, Frank Gehry,
you've been art-deprived. Google them.

Cooked, cleaned, did some car maintenance, and ran some random errands.

Dealt with several minor episodes of Periodic Paralysis.

Uploaded a new template for Gulf Coast Art Studio (it's still under renovation - I'll keep ya posted).

Whew! I am so exhausted, but thankful to be up and around, albeit, walking with assistance. A big part of my livelihood is in being as independent as possible. Being able to drive, run errands, and take care of myself is a huge priority.

I have other updates to share. Talk to you soon.

Friday, July 11, 2014

Home internet is down

Testing from my phone.

Saturday, July 5, 2014

Ann's HKPP Blog

Ann Latos and I have parallel lives. She has the same form of HKPP that I do, and her mobility came crashing down as quickly as mine did a few years ago. Just as I've experienced for over 20 years now, some of her doctors, family, and friends didn't believe her illness was real.

I hope Ann never stops sharing her journey, because I know how lonely, frustrating, and despairing it is to live with this rare systemic disease. There are others out there suffering more than necessary as Ann and I have because they can't convince people to listen and care. Some patients have even died by the hands and voices of ignorant caregivers. In order to stop these senseless tragedies, all of these people, and their future generations, need us to speak out just as much or more than we need to be heard ourselves.

I don't know about Ann, but those who wish to silence me will be sorely disappointed. I will never stop talking about my life - the good, bad, and ugly. The thanks and positive feedback I have received from around the world triumphs over the false judgment, unsolicited opinions, and criticism that any skeptic has thrown at me. To those people, I simply say "Game Over". You lose. I have no doubt Ann feels the same way now that she has found the physical and emotional support she needs to continue fighting this battle.

I appreciate the MDA for sponsoring her blog. Familial Periodic Paralysis is still a widely unknown and misunderstood disease - one of the rarest forms of Muscular Dystrophy in existence. The only way to save lives and give patients a better, more independent future is if we make it known and understood, and that requires awareness. Go Ann!

Wednesday, July 2, 2014

We are no better than Hobby Lobby

I used to teach at Hobby Lobby, and I also used to be a Paralegal, so those who know me probably aren't surprised that I weighed in on the current drama.

We are no better than Hobby Lobby

As always, I am brutally honest on Thoughts & Theories. Read at your own risk.

Wednesday, June 25, 2014

Unexpected Hospital Stay

I went to the ER on Friday. You know if I do that, it must be bad because I hate ERs with a passion. I was hospitalized until Tuesday evening. It went much better than usual with the exception of a few medication errors that resulted in an HKPP decline. They handled it as well as they knew how, and I'm doing fine other than the usual pain that they have no solution for.

I met with a social worker while there. She signed me up for grief counseling, and they said they would try to help me find public housing.

I have a couple of doc appointments coming up - July 1 with the counselor and July 3 with a Gastro specialist. I'm already anticipating an upper GI, and I don't know how this is going to be handled with my HKPP being as bad as it is these days. So risky. Incredibly risky.

Guess we'll see what happens.

Wednesday, June 18, 2014

What's Next

I have been having severe abdominal pain and breathing problems for quite some time, but it has gotten a lot worse lately. I tested negative for endocrine infection, so something else is going on.

I have been having so much trouble breathing at times, I feel like I'm smothering. I've burst into tears more than once from the pain of simply trying to take a breath, and I often can't finish a sentence or phrase without losing air altogether and feeling faint.

I finally noticed that it is a lot worse after eating or drinking, and I put two and two together. I've had a hiatal hernia for over a decade, and it has most likely become obstructive.

What makes this so difficult is that I cannot safely have surgery. With my HKPP weakness being so severe, and my diaphragm/esophagus/lungs already compromised, the risk of death under anesthesia is very high. I have no idea what's about to happen to me.

Now waiting for a GI referral. I'll keep you posted.

Edit Note 6/18: Physical activity makes my breathing a lot worse, too. I almost passed out in Target today. I'm headed to the ER if this gets any worse.

Thursday, June 12, 2014

Sweet Retreat

"Sweet Retreat"
15" x 15" Colored Pencil

I purchased all of the candy from Cracker Barrel. Part of the bag made it into the still life, so I decided it would be a tribute to the restaurant. That was four years ago. Serious illness and crappy motor skills kept me from it for a long time. I started having significant breathing issues recently, and I told myself I would finish this thing if it was the last thing I did. So it's done. It was my first (and currently only) color pencil project. I've received some nice feedback from friends, family, and even a couple of gallery owners, which was very encouraging. I hope that I can beat this disease somehow so I can fully return to my art. I still have so much to learn, and so much to do.

Friday, June 6, 2014


Even though I don't want to. What I want to do right now is give up.

A great deal is going on with my health, both physically and otherwise. None of it good. I don't feel like talking about any of it at the moment, but I will eventually. For now, I am trying to stay busy. Trying to keep breathing. Trying to convince myself to wake up each day and continue on.

It's not what I feel like doing, but I know it's what I have to do.

Thursday, May 29, 2014

Butterfly in the sky...

Reading Rainbow Kickstarter

Less than one day later...

I am so happy that I could contribute a small amount to this wonderful campaign. I look forward to seeing the future of Reading Rainbow in every home, school, and library. Congratulations LeVar and team on one of the most successful Kickstarters in history.

Sunday, May 11, 2014

Mother's Day

A blessed day to all Moms of living children, children in heaven, fostered/mentored children, those trying to have children, those who cannot have children, and those who have lost their mothers by death or other circumstances.

You are in my thoughts today.

Saturday, May 3, 2014

I sincerely hope your April was better.

In Summary:
This has been one of the worst months, and years, of my life.
I appreciate everyone's thoughts and prayers at this time.

My dear friends the McLain family honored my mom at their annual American Cancer Society Relay For Life. Thank you.

My stepfather wrote a love letter and put it in the newspaper.
Pray for him. He's lost without her.
(My memoriam will be published in a couple weeks.)

Easter Sunday started off with my car breaking down on the interstate. Someone picked me up and brought me home. I tried to make lunch. The pot caught on fire, burning me, and falling to the floor which also caught on fire. 911 called. Thank God it was out quickly. One of my biggest nightmares was for my MawMaw's house to burn. I'm sad, but more than anything, I am so grateful that it wasn't worse. A floor and a stove can be replaced. Lives and body parts can't. My eyes are a little fuzzy, but fine. My hands are healing like a champ. I am so lucky it wasn't worse. So lucky, so blessed, so thankful.

The painting was done impromptu after Mom's phone call. It's called A Thousand Tears, after a poem I wrote when I was a kid:

"Though I have cried a thousand tears,
I know they are not in vain
For my Savior and Lord is returning soon
To take away this pain."

She was in so much pain, she was screaming and crying. I will never be able to erase that from my mind. Freddy said she talked to God all night long every night until she became too ill to speak anymore. It happened fast. I'm devastated, but relieved that she's not suffering now.

I thought I could get through this, but I've wept for half an hour just trying to write the last ten sentences. This is the best I can do. Talk to you soon.