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

Wednesday, March 28, 2012

Pink Heart Funds

This week has been tremendously better than the last, and I'm very thankful. I am somewhat functional. I wasn't able to do anything on my birthday...it was a very rough day physically and for a few minutes I thought I might find myself in the emergency room. So glad I managed to avoid it. I did miss a very important Algebra exam, but my wonderful teacher offered to extend the deadline. I am a lucky dog.

Saturday was productive. I got dressed sometime that afternoon and drove down the road a bit, and as I started to sweat profusely in my car (help y'all, it's only March), I decided it was time to chop the mop.

So this...

...has gone bye-bye. It is now in a bag, and will be taken to Pink Heart Funds. I hope they will be able to use it to make a wig for someone who has cancer. The great thing about Pink Heart Funds is that they take any type of hair. It can be processed, gray, permed, doesn't matter as long as it's at least 8 inches. I was surprisingly able to donate around 10 inches, and my hair is still covering my neck.

Short hair is not really my thing. My mom and stepdad absolutely hate it, ha! But what a small sacrifice...a no-brainer as far as I'm concerned.

Anyway, if you've been interested in donating your hair and other cancer charities won't accept it, I hope you'll contact Pink Heart Funds. Great people with a great mission!

Tuesday, March 20, 2012


It has been very hard lately. Physically and otherwise. I guess anyone who has been paying attention is aware of that. Being debilitated is not only difficult on the body, but the soul as well. Life is one big emotional...well...roller coaster. Ha. As always, I named the blog right.

In looking at past entries, I've noticed that in one post, I said I was handling things pretty well and I wasn't depressed. That was true. The next post, I was not coping well at all. That was also true. The fact of the matter is that there are a lot of ups and downs. Days when I think "Ok, I can do this, I'll make it somehow", and days when I absolutely, positively cannot by any stretch of the imagination...do this.

I'm sure I'm far from alone on this road. I can't imagine anyone in this condition feeling any differently, although I realize that many people with systemic disease are in better shape than I am. I was one of those people just a few years ago. I was mostly functional. Working, making plans for the future, kicking butt and taking names in the corporate world. It was difficult, yes, but I was managing. Now, I'm hanging by a thread at times, lucky if I can stand up in the kitchen long enough to prepare a meal. Sometimes, I can't do that. I had to quit campus classes at the college because I'm unable to sit up in a chair long enough, unable to complete any piece of artwork I attempt, unable to do more than prop up on pillows in bed most of the day. I had to turn my job and my students away because I'm physically incapable of being there anymore. There are days when I can't lift my limbs enough to step into the bathtub and wash my hair. Is this the end of the rope? Because it sure seems like it.

I've filed out an application for Social Security Disability because I have no other options. I have zero income, living on charity...thank God for charity. But God help me, I'm at the complete mercy of others and it is a helpless way to live. Things are rough right now. This is not what I wanted my life to be. I had dreams and goals and plans just like everybody else. Amazing plans. I wanted to do great things. Had I been given a real chance, I could have done great things.

I'm angry. Broken. I feel cheated and defeated. Dragged around, beaten down, and left to die a senseless death from a worthless existence. No other way to say it, at least not without using a lot of ugly words. I'm not like this every day, but it is where I am sometimes. It is where I am today.

But I'm still breathing. And because I'm breathing, I'll never stop hoping. I'll never stop hoping for a better tomorrow...for a life worth living. I'll never stop trying to make it happen. It's all I can do. Hope is all there is. Hope is all I have.

Yet somehow, hope is all I need. I have to believe I am here, in this Hell on Earth, for a purpose. One that is bigger than what I can see, or hear, or feel. One that someday makes this entire journey...both good and bad...worth it.

Where there is life, there is hope. So I'll keep breathing, until I can't breathe anymore.

Wednesday, March 7, 2012

LONG week. Happy birthday Baby Jo, and my hospital update...

My precious niece, Layton Josephine, celebrated her first birthday this past weekend! I can't believe she's already one!!! Jo is such a baby doll, already walking, and so smart...love her so much!

Hooray that I was able to make the trip to Louisiana to spend Jo's birthday with her! I knew I was going to be there or die trying. I so want to be in this child's life and watch her grow up. There will come a day when I can't travel at all anymore, so I am going to do what I can for as long as I can. The trip there and back wasn't without its drama, but I managed and I'm super grateful.

I made it home a little before midnight Monday (the 6 hour trip ended up taking 10 hours...ugh), took a short nap, then had to turn around leave for the hospital in Jackson. Thankfully, my aunt and uncle were with me and did all the driving. They have been life-savers, literally, and I will never be able to thank them enough for all they have done and continue to do to help me find quality of life. I would surely be dead if they hadn't intervened. I'm at a loss for words beyond that.

My appointment Tuesday with the MDA Muscular Dystrophy Clinic went well. The new doctor I saw was very nice, asked a lot of questions, and we discussed several issues. I had a new series of blood tests, including a vitamin and mineral panel. B-12, Vitamin E, Copper, Folate, and Zinc were special concerns. I was also given a new script for emergency potassium to supplement my maintenance meds, and I spoke with the MDA concerning future medical equipment.

We had an awesome dinner at Julep, and stayed overnight.

Wednesday morning, I met with a team of doctors at UMMC to discuss my breathing and sleeping issues. Both docs were outstanding...thorough, respectful, and blunt in the nicest possible way. They both believe that I have sleep apnea in addition to the breathing problems that result from Periodic Paralysis. No oxygen has been prescribed by day (yet), but they urged me to proceed with testing so I can at least obtain a CPAP machine to use at night. Unfortunately, the testing is $2300 paid in full up front, and the CPAP is an additional God-only-knows how much. There is no financial aid or indigent care for this treatment at UMMC (or any other hospital that I know of), so I am at a stand-still until I figure out a way to make this happen. Other than that, I was prescribed yet another med. It will deal with my acid production, and I start it tomorrow morning.

Lord, I am so tired of pills. That's fifteen now, if anyone's counting. And to think, just a few years ago, I was only on one pill a day. ONE. If that doesn't put my situation into perspective, nothing will.

I'll keep you posted, and I will soon launch a blog that deals strictly with my battle against this disease. I greatly appreciate everyone's thoughts and prayers on Twitter and Facebook. I promise I don't take you for granted. Thanks for caring.