Monday, April 14, 2014

The Rest of the Story

I received a call on March 1st.

It was my mother, and she was in the hospital.

She's anti-medical, so I knew it had to be bad.

It was.

A diagnosis of terminal cancer.

That was six weeks ago.

Today, she is gone.

I didn't even get to see her or say goodbye.

I'm glad she is no longer suffering.

But I'm so sad that she suffered at all.

And I am devastated over what could have been.

My mom and I had a rocky relationship.

But we were too close-knit to give up on each other.

This happened so fast, I can't put it into words.

Shock and sorrow to the point of physical pain.

I can't believe this chapter is closed.

My parents are gone.

I can't even wrap my brain around that.

They died too damn young.

My mama was funny.

She was feisty as hell.

She was the most stubborn person I've ever met.

And she will be missed beyond belief.

Tuesday, April 8, 2014

MDA Appointment 4/08/14

I met with the MDA and the Neurology team about what to do next. Discussed my swallowing issues, shortness of breath, migraines and nausea, the horrible year with paralysis I've had so far, and the level of pain that makes me want to be shot in the head. Told them about the mood swings and meltdowns caused by the acetazolamide. Nothing to be done about it as anti-anxiety meds cause paralysis (already tried them). Also can't get off the acetazolamide without falling back into a nearly constant state of paralysis (tried that too). The only pain med that I am aware of that I can safely take is ibuprofen (which my renal doc forbids, but I'm taking it anyway).

The new doc who spoke with me first was very interested in my genealogy, so I want to dive into my mother's family history and see if I can pinpoint their origin in the UK and France. New doc also mentioned albuterol for the breathing and swallowing issues, and that was shot down because it is a dangerous paralytic trigger. Steroids are potentially deadly with Familial HypoKPP, as are many other medications. It would make things worse instead of better.

I remained a lot more calm than I thought I would. I struggled not to curse and cry, but I managed not to. I have never acted like that in my life before recently (not even my ex-husband heard me say a cuss word - ever) but I am a freaking disaster on these anti-paralytic meds. They cause some pretty harsh chemical changes in the body, but I unfortunately have no choice but to stay on them if I want to survive and have any quality of life.

HKPP is a no-win situation, and everybody knows that. Angie with Mississippi MDA is wonderful, and she is recruiting Alabama MDA to help me obtain pulmonary/sleep testing as well as a power chair at some point. I have to contact Shae in Birmingham to follow up in a few weeks. In one week, I'll see my local primary physician to bring him up to date, then back to Jackson for Renal Clinic in June.

Sunday, April 6, 2014

Happenings

Hello From Bandit.
Got Breakfast?


Meanwhile, In Lower Alabama...


Preparing For A New Chapter, Ready Or Not
I'm Much Closer To Not, For The Record

I'm finally spending a little more time out of bed. I'm still having paralysis, but some days are better than others (some hours are better than others, too). I've been very busy cleaning, sorting, and packing for quite some time. My back thinks it is absolutely dying and it doesn't allow me to do much, but I'm doing what I can when I can.

I don't have a place to live yet. I'm still fighting with Social Security to the point of meltdown, but I am hopeful that things are going to improve soon. They are trying their best to kill me off so they don't have to pay me, even though they were so quick to declare me disabled. I am not allowed to work, go to college...nothing at all thanks to Muscular Dystrophy, but they sure don't want to have to help me survive (let's not forget that I was a working, honest, tax-paying citizen prior to April 2011, thanks). But they literally don't care. It's a shame and an unnecessary stress that the disabled have to force the government to follow their own laws.

Everyone who lives here will be moving, and the property will be sold. My grandparents built this house over 50 years ago. There is a great deal of history here, and while I am beyond tired of sharing space with others (almost 40 years old here, people), I know how lucky I've been to have lived at MawMaw and PawPaw's house. I just wish they could have been here too. Being in their home has made me miss them more than ever.

So anyway, this is partly what's going on with me lately. I can't talk about the rest yet, just know that I need and appreciate any and all thoughts and prayers. I'm broke and sick with no way out, and I really don't know how on Earth I'll survive in this society with so little to speak of. I am extremely stressed and sleep-deprived, in terrible pain, still very weak, walking with assistance, and randomly flat on my back throughout the day. This has been a tough year so far, but I'm going to keep hoping that things will get much better.

Talk to you soon, and thanks again for the well wishes.