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

Saturday, December 31, 2011

HAPPY NEW YEARS EVE! My 2011 Review and 2012 Goals...

Mercy, y'all. What a year it has been. Anyone who has been crazy kind enough to follow my blog in 2011 knows just how much my life transformed overnight nearly nine months ago. It has been a nightmare...the worst one I've ever known...but by the grace of God, I have survived it thus far.

I've gotten to the point where I no longer fully recover from my frequent paralytic attacks, and the MDA has given me no hope of doing so. It is impossible to accept this as my "new normal", so I continue to do what I can to learn about this disease and try to control and improve the symptoms. I am in my mid-30's. I can't give up, and I refuse to live in a prison of fear. There are days when I have no quality of life, but on the days I can function, I'm going to live with all that is in me.

Hard to believe it's the end of the year. In some ways, this year has dragged by (for the obvious reasons). In other ways, it's crazy to see that 2012 is upon us, ready or not. Every year, I give myself goals...resolutions, I suppose. And every New Years Eve, I review them and then make a new list. I'm a very serious "list" person, if you didn't know. Yep, I'm one of those.

That being said, it's time to review my 2011 goals! Drum roll, please...

1. Figure out what to do about my college degree, and make it happen.

I continued college and did very well considering my extreme decline in health. I am so happy I hung in there and didn't give up. I've completed 17 classes at MGCCC, 4 classes elsewhere, and have an overall 3.9 GPA.
I also decided on a new major, since I can no longer physically handle an Art degree. In 2012, I will move on to an online university where I will pursue Psychology and History. I'm more excited about this than I thought I would be...I really can't wait to dive into the curriculum!

2. Road trip out of state to visit family and meet my new niece due to arrive in March!

MISSION ACCOMPLISHED!!!


THERE IS NO ONE ON THIS EARTH MORE WONDERFUL AND PERFECT THAN BABY JO! I WISH SHE DIDN'T LIVE IN ANOTHER STATE. I MISS HER EVERY DAY! YES I AM YELLING!

3. Increase and become more organized in my teaching business.

This sadly came to a halt thanks to debilitating, life-threatening episodes of Periodic Paralysis. My life hasn't been the same since, but I hope and pray to return to some form of teaching in 2012.

4. Decrease my debt, whatever it takes.

Needless to say, this has been impossible as I have been ungainfully unemployed since April. I am surviving on the charity of family and friends, and I am eternally grateful for the help I have received. This has been a long road and there is no end in sight, but I am doing the best I can.

5. Put a dent in one of my manuscripts...article, short story, fiction, non-fiction...who cares! Just work on something!!!

I worked on a couple of new blogs (yet to be launched) and began work on my first eBook - IF I HAD A MILLION BUCKS. I still have a cornucopia of manuscripts on the back burner, and I hope to be able to put a dent in at least one of them once I am finished with my current project.

6. Remain honest and aware, pray, and strive to improve myself each and every day.

Well, this goes without saying. It has been one of the worst years of my life. However, as long as I am breathing, I will strive to remain true to myself and others.


And now, my goals for 2012...wish me luck!

1. Wrap up my time at MGCCC and successfully (FINALLY, PLEASE) move on to university.

2. Publish my first eBook.

3. Return to teaching and working, God willing.

4. Complete all art, craft, and charity projects currently pending or in progress.

5. Become more organized in my home and daily life.

6. If I start something...no matter what it is...finish it!

And as always, I have four goals that I call "Mainstays", because they are the same every year:

7. Reach/maintain my ideal weight and keep my health under control as much as possible. Easier said than done, but I will do my best.

8. Stay involved in one or more charities/ministries. It gives me a reason to live.

9. Read more, write more, and learn more. This is thankfully inevitable, as I am in college!

10. Be a good friend/relative, and strive to improve myself every day.


May 2012 be a better, healthier, happier year for us all.



Thursday, December 8, 2011

Lost.


I found this little one in the yard, unable to move.

His eyes were scratched out and his legs were limp.

I walked up very close to him (but was careful not to let him touch me) and he tried to move but couldn't.

He started shaking, so I stood there and talked to him softly until he stopped.

He then leaned over and started playing with his tail, and my heart broke because I knew there wasn't a thing I could do to help him.

All I could do was accept that this was a wild animal who got in a fight with another wild animal, and lost. :(

Wednesday, November 23, 2011

My favorite person in the world came to see me today! Happy Thanksgiving to meeeeeee!





Tis my one and only niece...Baby Jo!!! :) She has the most fearless and sweetest personality. I'm grateful that I was having a fairly functional day so I could get out of bed and play with her for a few minutes. I don't get to see her often since she lives in Louisiana, so this day is special.

I hope all of my U.S. readers have a wonderful and blessed Thanksgiving. To my non-locals, smile and enjoy the rest of your week. :)

Friday, September 16, 2011

Catching Up, Part Deux: Periodic Paralysis, Kidneys, & My Latest Doc Appointments

I am so far behind...I know. I'm going to give the summary here and spare you the long, rambling details.

I received no answers from the docs I saw in Mobile. They left me completely hanging...I still haven't received the return phone calls that I'm owed or the new appointment that I was promised and it has been two months. Lying here, my life wasting away, being completely ignored. Why yes, I am bitter. Thank you for noticing.

Anyway, I've had a couple of consults and tests with the MDA (that's Muscular Dystrophy Association, if you're new around here) and Nephrology clinics since then. The MDA physician, Dr. V, agreed that I have Familial HypoKPP. Unfortunately, he does not have any suggestions for me other than follow the diet and continue to take potassium. That's what I've been doing and it's no longer working, but he said that's all I can do. He doesn't want to do genetic testing since I am uninsured. I'm hoping to someday find a lab that is willing to follow [Periodic Paralysis International's genetic specialist] Dr. Lehman-Horn's protocol in sending blood to Germany for testing, but getting any lab that I've ever dealt with around here to get their OWN stuff correct is a task in itself. Dr. V said his hospital's lab is doomed to fail in getting it right and was not willing to order them to do it. At any rate, he said that I have chronic muscular dystrophy and my current situation may or may not be permanent. He advised that I pursue SS disability and Medicaid.

I also saw Nephrology. Dr. F is really something. He seemed truly upset by my condition, and was enthusiastic to help. He ordered several tests to check for metabolic and autoimmune diseases and to determine if my kidneys are wasting potassium. This week, I turned in two days worth of samples and I'm waiting on the results of that now. He reluctantly prescribed a drug, amiloride, but he is concerned what it will do to me and stressed that the results could be good or could be very bad. He really didn't want to do it because it is so risky, but I told him that I couldn't live like this and was willing to try anything. He gave me strict instructions on what to do while taking it and I have to report back to him via fax in a week with my potassium level.

I am hoping and praying this is my answer...I am in a bad place in life. I am very, very ill. I cannot take care of myself and I have no income. I honestly don't know what in the world is going to happen to me, but I'm doing my best to hang on to hope with all that I have.

This is the super short version of the past 3.5 months. You're welcome. :-)

And thank you for your thoughts and prayers.


Monday, July 4, 2011

Last week's Neph appointment

It was very thorough and, I believe, a huge step in the right direction. I'll consider a blog post to talk about everything that was discussed.

Until then...have a safe and happy Independence Day!

Friday, May 27, 2011

Appointments and frustration

The MDA clinic was very kind. We discussed my past records and Periodic Paralysis. They are planning tests, but referred me to University of Mississippi Nephrology also. That's July 21st...over seven weeks away. I've made an appointment with my local GP to address my last two serious attacks and the symptoms that I'm dealing with as a result. That appointment is Wednesday.

I'm weary.

Thursday, May 19, 2011

Thursday Periodic Paralysis Update

My body is making a slow attempt to recover from this past weekend's episode, just as it was making the attempt after last month's episode. My life revolves around potassium. I take a dose, then count the minutes until I can take another one. I am moving better than I was, but still in bed most of the time and on a walker otherwise. My severe weakness is generalized (overall body) as the last two episodes of paralysis were.

As if I needed anything else to complete my week, I have a kidney stone en route in my lower left side. At least it's moving this time. I haven't brought out the pain meds yet, and don't plan to unless it becomes utterly intolerable.

Speaking of meds, the current ones: Effer-K 25 MEQ x 4, Mag Ox 400 x 2, Claritin once a day, Avapro 150 once a day. As always, the Valium and Demerol are PRN for kidney stones, migraines, and pulled muscles/cartilage. I almost never take them. The meds will expire before I take them all.

I hate pills. I swear to God I hate them so much. I'd do anything to avoid taking medication. I'd do anything to have a body that worked properly. I'd do anything to have quality of life.

Sometimes, all of the effort seems to be in vain.

I pray for a method to this madness.

Friday, May 6, 2011

College, Summer, & Beyond

The Spring semester has finally come to a close. It seemed long, but it always has. I'll spare you the drama and simply say that although I had to withdraw from two science classes, I was able to keep my two psychology classes and I aced them with a 100 and a 97, keeping my GPA in tact.

I'm still down for the count...going on a month now...so I'm out of school until further notice.

I emailed my Graphics instructor and told her that I would not be able to join her program (it's all day campus classes) unless I fully recover. If and when I do, it will be 2013 at the earliest now unless I can manage a full time schedule at MGCCC in 2012. That is unlikely but certainly not impossible if I can get my body under control as it was in 2005. I'm trying to remain hopeful that I will somehow still complete my planned degrees within the next few years.

As of right now, I just dropped my summer semester...it's coming up soon and I can already see that it's not going to happen. I'll graduate later than I wanted to, but I hope I'll be able to return at least part time in the fall. I pray this summer will be a time of recovery. It has to be.

I miss my art. I miss my art classes. I miss teaching and I miss my students.

MDA appointment is coming up, and I still don't have a confirmed ride to Jackson. Prayers appreciated that I make it up there, and that the doc will properly treat me.

Talk to you soon.

Wednesday, May 4, 2011

Now in my possession


25MEQ (977mg) fast-acting effervescent potassium...the happy medium between the standard potassium pills (which are slow) and a potassium IV (which requires hospitalization).

I've been in bed almost a month, and struggling for years. I'm sick of having little to no quality of life. I'm not settling for anything but improvement.

Game on!

Thursday, April 21, 2011

Periodic Paralysis Update

I've been wanting to write, but words have not come easy. It has been almost two weeks since my serious crash, and I have not recovered. I have seen little improvements here and there, and I'm grateful. My heart rate fluctuates a bit but is pretty much stable. I can get out of bed and walk to the bathroom that attaches to my room...it's only a few steps from my bed, but it's a start. I've also been using MawMaw's walker to go to the kitchen (alllllll the way on the other side of the house) at least twice a day now. I've slowly been maneuvering around the kitchen hanging onto stuff, and even sat in a chair and loaded the dishwasher the other day. Took forever and resulted in a rough night, but I did it. Still more dishes in the sink to be washed as soon as I can use my muscles well enough to do so. At the moment, it seems that every little thing is a trigger that causes me to decline again. Standing, lifting anything (including arms and legs), sitting too long (sometimes I just fall over on my bed...who cares what position I end up in, as long as I can sleep to escape for a while), weather, eating, not eating, taking a shower, not sleeping, sleeping, changing clothes...seems like everything is against me and the simplest of functions have become grueling if not impossible. I may not be able to do much of anything, but I'm a far cry from two weeks ago when I could move nothing but my head and neck, had a cath, and was butt naked in front of nurses and God knows who else in an ER hospital bed. Believe me, I'm not taking the fact that I can sit up in bed unassisted, go to the bathroom, and use my fingers to type for granted at all. Praise the Lord.

But this is definitely a very slow progression. I improve slightly for short periods of time, then decline again. I can feel a difference, but it's as if more than doubling my potassium intake is still not enough. My body is just not winning this fight, but I'll never give up.

After what...a year(?) of trying to get the MDA's attention, I finally have it now. I have an appointment at the MDA clinic in Jackson in 3.5 weeks. Much sooner than I expected, and I'm thankful for that. I talked with the coordinator for several minutes about my situation, and she was encouraging. I hope what she says about the doctor is true. I've heard nightmare stories about HKPP patients being untreated and mistreated even by their regional MDA docs. Unacceptable. I brought it up and the lady assured me that this doc will know how to treat Hypokalemic Periodic Paralysis, and is better than the average neurologist. I just pray that this is the case, because my condition has become too serious to be misunderstood or not taken seriously. I will die. I need help. I can't live in bed or in a wheelchair unable to care for myself. I have Facebook support groups who have been incredibly helpful. I have relatives putting a roof over my head and buying my groceries...I am so grateful...but they are tired and I am tired and I can't live like this. I have to be able to walk, drive, work, support myself. What other option is there for a single woman? Being independent is my life goal, and has been since I first became ill all of those years ago. So far, it has not happened...but it has to somehow.

For now, it's an hour-by-hour thing. I'm trying my best. That's all I can do. I guess that's all any of us can do, right?

I appreciate the prayers and well wishes that I have received more than you know.

Wednesday, April 13, 2011

Serious Periodic Paralysis Attack

I had a serious episode of Periodic Paralysis after my workshop last Saturday night. I had heart arrhythmia and ended up in the emergency room unable to move from the shoulders down. I have partial use of my arms again and can sit up most of the day, but my legs are still paralyzed.

I will write with more details later, but wanted to let readers know what was going on.

Thank you for your prayers.


Thursday, March 17, 2011

Happy St. Patrick's Day


May your troubles be less and your blessings be more
And nothing but happiness come through your door.

~Irish Blessing

Saturday, March 5, 2011

YESTERDAY!!!

Baby Jo made her appearance yesterday morning at a perfect seven pounds! I arrived in middle Louisiana late last night and met my beautiful new niece today! She's soft and snuggly and loves to sleep. :-)



Blessed to finally be an Aunt!

Thursday, March 3, 2011

TODAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Three weeks early, my niece is on the way emergency style!!! Prayers appreciated for my sister Katie and baby Jo to be A-OK!

I am too sick to drive so I'm not gonna make it in time for her birth :( but I hope to make the 5+ hour trip in the morning. I would appreciate your prayers also.

Thanks!
AUNT KELLI :) :) :)

Thursday, January 20, 2011

And the academic insanity begins...

Biology and fast track Psychology/Human Growth & Development. Ten hours. WHAT WAS I THINKING.......

Just logging in and looking at the courses, I am completely overwhelmed and hardly know where to begin. My BloggerDash will surely suffer this semester...just a heads up and my time will most likely be limited here. I am almost certain that my 4.0 is toast, or maybe I'll surprise myself and figure this stuff out a little better than I think I will.

But at this point and time, I'm praying just to pass these classes. If I end up with B's or C's, I'll take it and run.

Being sick and in bed most of the time is not helping. I'm weak and exhausted and just wish I could function as normal. I'm having many more bad days than good days, and that is not how I wanted to start 2011. This year must be better than last. It has to be somehow.

I'll write more later. Just really tired right now. Gonna take meds, a hot shower, and then dive into a Psychology marathon.

Monday, January 17, 2011

This week...

Semester #6 of college begins in less than 15 minutes. It's going to be a doozy...Biology, Psychology, and Human Growth & Development. Hoping to keep my GPA in tact but I will honestly be satisfied with a B in Biology as I got B's and C's in junior high and high school. Science, math, and foreign language are my worst subjects. I can have straight A's in everything else (and do, almost), but those subjects get me every time. Oh well...I'll do my best as always, and hopefully hang in there. Thankful that my classes are online...there's no better way for someone like me to complete academics, that's for sure. After this semester, I'll be diving into the maths...Lord help me...and hopefully painting if I have the funds.

Besides school, I have a class to teach on Saturday in Pascagoula, and I am honored to be a featured artist at the grand opening of a new gallery in Long Beach, Mississippi, also on Saturday. I will be leaving my class and going straight there, arriving fashionably late by at least an hour. I have several pieces of art that will be on display, as well as introducing my new specialty soaps!


I've been making soap like a fiend and loving it. I hope folks like them! I'll be working on more types of soap, including goat's milk, all natural lye, and sugar scrub soon! Can't wait! I have to say that my favorites so far are the peppermint and the facial bar. I'm using the facial bar on my hands right now and it has really helped heal my cracked, burning hands from this horrendously cold weather we've been getting on the coast.

I'll take photos at the gallery event if allowed.

Talk to you soon.

Saturday, January 8, 2011

We don't have control over who loves us...

...but we do have control over choosing to love ourselves.

Know that you have value, and you were put on this planet for a season and a reason.

Seek. Hope. Believe.

You never know the impact you will make by simply embracing yourself and those around you while you have the chance.

Those words are for someone tonight.

Perhaps you.

Perhaps, only me.

Good night.