I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Thursday, October 30, 2014

Throwback Thursday 10/30/14

For the record, sleep is still my favorite thing.

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. 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

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.

Thursday, October 16, 2014

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, 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.