Monday, December 31, 2012

2012, Good Riddance. 2013, I'm coming after you.

I can't believe New Years Eve is finally here. Whereas many years seem to fly by, this one has dragged relentlessly. In fact, the last two years have felt like ten. Hard to believe, but I have been blogging for over ten years now, and I have made and assessed a list of goals (resolutions, if you wish to call them that) every NYE. Facing one of the most difficult and emotional Decembers of my life, I considered bypassing the tradition. I debated on it for days, and decided that the only way I can move forward into a new year is to, for lack of a better phrase, "keep calm and carry on".

So here I am to assess my 2012 goals. I know it will be somewhat painful, but worth reviewing so that I can effectively create new goals for 2013. And away we go...


Assessment - 2012 Goals:

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

- Wrapped up MGCCC on the President's List, but was forced to drop out right after I applied to university, due to having to file for Social Security.


2. Publish my first eBook.

- It isn't finished but it IS in progress and will be released in 2013. More info on this can be found on my charity blog.


3. Return to teaching and working, God willing.

- Nope. Devastated.


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

- Hahaha...no. Not even close.


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

- HAHAHAHAHA. Ok seriously, I am working on this and I have made great progress, but it is taking time. It has been a rough year on the homefront, needless to say.


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

- I was sporadically successful, but I still have unfinished projects in progress. They WILL be completed.


And now, my 2013 Goals:

1. Scoff all you want at me for following the crowd, but I need to lose weight. I have gained too much, and while I don't qualify as "obese" yet, the 15lbs I have gained is adversely affecting my health. I must find a way to put a stop to the gaining and take off the extra pounds in spite of not being able to exercise.

2. Overhaul my computer, including but not limited to better organization of all files and folders. This is already in progress, but it's going to be quite a task.

3. Sort through all belongings and get rid of anything not needed or used regularly. I have too much trouble letting go of worthless little things. No, I do not belong on the TV show "Hoarders"...LOL...but I do need to improve upon this.

4. Exhaust all possibilities with the government concerning SSI, college, etc. If they refuse to allow me to finish my degrees, regroup and seek counsel in figuring out a new plan for survival.

5. Utilize the textbooks, DVDs, and other tutorials I have obtained over the past year.

6. Complete, or at least put a massive dent in, all unfinished art and writing projects.


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

7. No-Brainer of the century - don't croak! Ha! I have to get this condition under control somehow.

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

9. Read more, write more, and learn more. Will elaborate on this later.

10. Be a good friend/relative, and strive to improve myself every day. I need to spend less time on people who don't give a damn about me, and more time on people who do.


I will hold myself accountable, and blog about some of these goals throughout the year. My list isn't terribly exciting...it rarely is. I have to choose my battles carefully. None of them are easy, but they are practical, possible, and worth the effort.

I'm trying my best to press on and make the coming year better than the last. To all of my readers out there, have a safe, productive, healthy, and happy 2013.

Let's do this.

Sunday, December 23, 2012

Acceptance and Giving Up

I am trying to cope with life as best as I can, but I think sometimes I have to realize that I'm human and I'm not as strong as I want to be. I have days when I put on a smile and make lemonade with the lemons I've been given, and I have days when I'm sick and tired of the freaking lemonade, and I grieve for the life that I have lost to this disease. It's hard to have hope when the future looks so dim. Owned by the government and relying on other people to provide my basic necessities is not living. It is merely existing...nothing more.

I had plans like anybody else. College was killing me but I was killing it in return, and I had no intention of quitting. I couldn't wait to get my Masters so I could teach and counsel, even if it was only possible via internet while propped up on pillows. I would have been satisfied with that (I think), and I would have been one kick-ass online instructor. I also planned to provide therapeutic art in my community free of charge in my spare time. I had a solid goal toward the only things I've ever strove for...independence, and making a difference. I wanted a tiny house in a town that I don't hate, and once stable and established, I wanted to apply for foster parenting. I have said since I was a little child myself that I would be one of "those moms" whether I had my own children or husband or not, and I meant it. But that's gone now. All of it...everything I've ever wanted has been ripped out of my hands, as if I'm not worthy of achieving it. I'm not okay with that. I am unfathomably angry.

I don't know anyone who has ever wanted to be more independent. While I don't take the abilities I have for granted, it's impossible to ignore the fact that this is an unfair world that operates on survival of the fittest, and I am not one of those people. So what happens to me? Exist day in and day out until I die in poverty? Forced to live being watched or controlled by other people, who may or may not resent me, for the rest of my life?

Unacceptable. That's what this is. It doesn't matter how much lemonade I make, how positive I think or speak, or how much I pray for my sins to be forgiven in hopes of being good enough to get somewhere in life...that doesn't change reality. I talked to someone tonight who insisted that everything bad that happens to us is a demon. If you're sick, you have a demon. If you're born with abnormalities by the world's standards, you have a demon, and somebody did something wrong to make it happen. You're cursed.

But isn't a holier-than-thou individual proclaiming that you're cursed, a curse in itself? I'm not a Bible-thumper, but I am firm in my beliefs. I know where I'm going when I die, and why I'm going there. I'm a believer, but I can't bring myself to believe that any person has the right to say someone else is possessed by the devil because they're sick - to say that a kid with Epilepsy needs a demon cast out, or a stroke victim must have done something to offend God, or a Muscular Dystrophy patient just doesn't have enough faith to be "normal". The very notion seems, in its own way, sick. And I don't accept it.

I've also talked with people who think I shouldn't be allowed to be independent. They think I should have to live my life under someone else's thumb, even if that means an unhappy home or a facility of some kind. Never mind that I'm only in my mid 30's, intelligent, and could survive on my own if I had the resources to do so. Tough luck. I'm crippled, so I should have to accept being imprisoned for the rest of my useless life, controlled by the fears and convenience of others.

I don't accept it. I don't accept any of it, and I never will.


To those who say this is the existence I should accept...to those who choose to ignore the facts as well as the possibilities...to those who disregard my full potential because I have a physical disability...to those who claim that I'm cursed...to those who think I'm not good enough, strong enough, or worth it...to those who believe I'm done for and have spinelessly written me off...to those who have given up on me, and expect me to do the same...I suggest you get the hell out of my way.


I don't give up.
 

Saturday, December 15, 2012

God save us. You're the only one who can.

I haven't turned on the TV or radio, and I'm not clicking on any articles. But I know what has happened. It's all over everybody's statuses, tweets, and in the headlines, but for the sake of my health I am keeping myself away from images and horrific details. Stress and grief are dangerous HKPP triggers, due to adrenaline release, so I have no choice but to stay calm even though what I really want to do is cry hard and beat the hell out of something.

I can't believe I exist on a planet where some innocent children are born and raised in love while others are traumatized and brutally murdered. It is beyond my feeble mind to grasp that this is life as we know it. This is not a reality that I can accept. This is not a world I want to live in.

What I would give for humanity to be more transparent, so we could see when someone has evil intentions, and rid the world of them before they destroy the lives of others. If only we could know, so we could protect our precious loved ones from unspeakable acts such as these.

Lord, be near.

Tuesday, December 11, 2012

Why


I am utterly devastated to learn that my sweet friend Alexander has passed away.

He had Periodic Paralysis, and we had many conversations via Facebook private message concerning our condition. He picked on me about my blog rants, and translated my blog and Yahoo article for his friends and family in Ukraine. I even gave him some input on his little girl's English homework one day, and I was honored to do so. Most of the time we would just check in and ask about how each other's week was going, health-wise. We understood each other perfectly, in spite of our slight language barrier.

Like most of us with Periodic Paralysis, he had been through the wringer where medical care was concerned, being mistreated over the years and not taken seriously. Even with a family history of close relatives dying prematurely, he had so much trouble finding a doctor who would listen and treat him properly. He told me that doctors kept telling him it was all in his head, because they had no knowledge of the condition.

Story of my life. I related to Alexander so well...his story and mine were almost parallel.

Many of us in the online support groups did our best to encourage him through the battle. I've been told that he died in the hospital after an episode that affected his breathing. It sounds similar to the episode I had in June, when I had to wait in the ER to be seen, and debate with the hospital staff for days to be treated correctly.

My heart is crushed for him and his family. Alexander was only 31 years old, married with two young children. I will never understand. Why him? He was a devoted husband and father who had so much to live for. He started a mission to educate people in his region about this disease, even finding others with Periodic Paralysis and trying to help them seek treatment in the midst of his own challenges.

I simply cannot wrap my brain around this loss. Why him? Why not me?

It makes no sense whatsoever. It is unfair.  It makes me angry.

I will never understand. I will never stop asking why.

Thursday, December 6, 2012

Choosing Battles


Credit: CorgiAddict.com
This is pretty much how things are going lately.


My body doesn't seem to know which way is up anymore. Even my uncle, whom I share a house with but never speaks of my condition, finally chimed in and said "You're not functioning."

No kidding. Thanks for letting me know.

I manage to get a little bit done most days, but it usually involves something small. As most with systemic disease know all too well, I have to choose my battles. I can wash my hair, or I can load the dishwasher. I can prepare a semi-homemade meal, or I can struggle through a load of laundry. I don't take these things for granted whatsoever. Not a one. I find myself taking note of every little finished task on my to-do list and calling it a win. I can't help but be sad at times, though, that I consider taking a shower and putting on clothes an accomplishment. Who does that? Apparently, I do. Perhaps I'm not the only one.

I'd be lying like a dog (pun absolutely intended) if I said my treatment was going terribly well. It's not. My body is frustrated and it's making that known every minute of every day. I'm in horrendous pain from head to toe with no relief. I seem to be entering a state of acidosis thanks to acetazolamide, which I still have not successfully titrated to the amount that the doc wants me on. I pray to God for mercy that I don't start passing stones again, and I can't get in any position and be comfortable enough to rest. I literally do not sleep until my body crashes, whenever that may be. It's usually sometime in the morning or afternoon for three or four hours, and I'm usually in the middle of something. I can be in mid-sentence typing on my laptop in bed, and suddenly I wake up later with my hand still in position on the keyboard, partially paralyzed. I wonder sometimes how long I can continue existing like this. I'm trying so hard to function, but I am exhausted in every possible way.

I do what I can to distract myself. I'm working on an inspirational eBook, small craft projects when my arms and hands allow it, and spend a lot of time on Twitter and Facebook. I am grateful to those who put up with my ranting, raving, and rambling on social media. It keeps me sane.

I'm supposed to be heading to Louisiana today for a relative's wedding, but I am physically and financially unable to make the trip. I'm pretty upset about it. No matter how long I've lived with this disease, I can't get used to the fact that I don't have the same privileges as the rest of my family and friends. They can go and do what they want or need. I struggle with not being granted such normalcy.

I refuse to give up on having a life again, and I count my blessings in spite of this prison.

Thursday, November 29, 2012

If I had won the lotto

Had you won last night's huge lottery, what are the first five things you would have done with the money?

I would have compensated and/or paid back the family and friends who helped me when I needed it most

I would have gotten out of debt, forever

I would have ordered a small, custom-built Zook cabin and put it somewhere on the Florida Coast

I would have returned to college online for a kick-butt PhD

And I would have bought everybody a water buffalo. :)



That's my lead-in to encouraging everyone to consider charitable giving this holiday season, in addition to or in lieu of the newest popular thing or stocking stuffers that may very well end up collecting dust in a closet. I strongly believe that if you're going to invest in something, make it count.

Thanks for reading.

(Cross-posted to my charity blog)

Saturday, November 24, 2012

Minecraft Lego Set Charity Auction!

Hi everyone! I hope you had a Happy Thanksgiving. Welcome to the official start of the holiday season! I just put something really cool on eBay...please check it out and share with anyone who may be interested!

I recently won a limited edition Minecraft Lego Set during a gaming marathon for Child's Play Charity. I have decided to auction it with 100% of the purchase price to benefit Child's Play! This set is currently sold out at Lego.com, hard to find in stores, and is selling for $75-100 on eBay at the moment. Bid high and help give toys and games to children's hospitals this holiday season!

And here it is! http://www.ebay.com/itm/150953966153


The auction ends in a week! PLEASE SPREAD THE WORD!

Wednesday, November 21, 2012

2012 Bucket List

It's been 2.5 years since I've updated my bucket list. Now I have it on Pinterest! I didn't really change much despite the fact that I don't have the health for most of it. That doesn't make me want it any less.

Bucket lists are trendy, but I have had one for years and I take it seriously. I put much thought into what goes here.

I've opened comments for the first time in a long time! What's on your bucket list? :-)

Monday, November 19, 2012

Update...From A Big Chicken


The Big Chicken!!! Located in Marietta, GA

Why, you ask? I thought it was appropriate, because I am one. After the nightmarish side effects that nearly landed me in the ER overnight last Tuesday/Wednesday, the doc and I agreed to cut my dosage of acetazolamide in half. Except I was too big of a chicken to do that, so I cut it in quarters instead. I went from 500mg a day to 125mg a day, and now I am going to slowly work my way back up to 500 if my body adjusts to the side effects. I have a nagging headache and I'm still dizzy, but not as bad as I was the other night by any means. I am trying my best to put on my big girl panties and deal with it.

I am encouraged that my muscles have not gotten worse. I feel it's a possibility that I am finally on the right track with treatment. I do have to make sure I stay on top of my med schedule...especially the potassium...but as long as I do that, I usually have several hours a day where I can function with the assistance of crutches or a walker. I still crash every day over something...usually muscle activity, weather, or sleep/lack of sleep, but I have to give the acetazolamide time to do its thing. Hurry up and wait is the name of the game, as it so often is.

I thought this might be a good time to list all of the meds and supplements I am on. Each one will be hyperlinked with more information.

acetazolamide (DIAMOX) - titrating from 125mg to 500mg a day, if I can manage the side effects
potassium bicarb/citrate (EFFER-K) 25mEq PRN - up to 3 a day
B12 5000mcg - the Wiki article says B-12 supplements aren't necessary for those who experience low bioavailability due to potassium intake. This article is why I disagree. I think all who take high doses of potassium should seriously consider a reliable B-12 supplement.
Omega Oil 1300mg
Vitamin D 50,000 IU (weekly)

I'm so tired of pills. Words cannot express. Gotta do what I gotta do, right? Quality of life is the goal...always has been and always will be. Keeping my eye on the prize.

Wednesday, November 14, 2012

HKPP Diamox/Acetazolamide Treatment: Rough Start

I am so grateful for the Hypokalemic Periodic Paralysis support groups on Facebook and the email Listserv. They have truly been a life-saver. I spent so many years alone with this disease, being disregarded by everyone, but now I have a group of dozens around the world going through this battle with me. There are a couple of physicians who specialize in Periodic Paralysis running the Listserv, and I have received a wealth of information from them as well. We are all learning from each other every day, and I have no doubt that I'd be a dead woman if not for finding this level of support. Thanks will never be enough.

I started on acetazolamide, as I mentioned a couple days ago, and the last 36 hour span has been a bit of a nightmare. My muscles have not declined...I want to make that clear. In fact, I've had moments where I felt for a minute that they were a tiny bit less heavy than usual, which is encouraging.

However, the side effects from the drug have been nothing short of brutal. I felt like I had been stabbed in the head...it was one of the worst migraines I've ever had. The nausea and dizziness were equally troublesome. I pulled a muscle in my back grabbing hold of the kitchen counter to keep from falling. I almost never cry over my symptoms, but tears were shed and I nearly had to ask to go to the ER overnight.

In talking with quite a few patients about it, everyone told me the exact same thing: my body was being ransacked by this drug...that I was starting on too high of a dosage. They said I should have started on a smaller dose and slowly worked my way up to the intended dosage over a period of weeks. They suggested I call my doctor, so I spoke with his nurse this morning and told her what was happening. I received a call back from Dr. Fulop, and he agreed that I should cut the dosage in half and slowly work my way back up. I think he is a bit frustrated with me, or with the situation, but he seemed encouraged that my muscles were not doing worse in spite of the horrible side effects. I'm so grateful to Dr. Fulop for not giving up on me, and I hope he never does. He is truly one of the best doctors I've ever had.

So in summary:

Acetazolamide 250mg twice a day made me feel like I was dying, bringing me to the conclusion that 500mg a day is not a good dosage to start with. Doc agreed that I should break the pills in half and take 125mg twice a day for 2 or 3 weeks. I'm supposed to call him with an update, then we will decide whether or not to up it to 500mg again.

I'm still on all of my other medications in addition to this. I will post a separate blog entry with the entire list, and comments will be open on the HKPP blog if anyone has a question.

I'm off to start the new dosage. Wish me luck...

Tuesday, November 13, 2012

Starting Acetazolamide



My bedside emergency station:
a couple of types of potassium, coconut water, almonds, pistachios, and lots of water

I'm beginning Diamox for the first time. It's very risky, as those with HKPP are aware, with only 46-50% of patients reporting improvement. Half the patients I've spoken to personally have said they are doing much better on it. The other half said they saw a decline in the form of Hypokalemic episodes or acidosis with kidney stones. God knows I don't need any of the above (I believe 40 stones is enough in one lifetime, thank you), so here's hoping and praying that I turn out to be one of the lucky ones.

I'll keep you posted here and on the HKPP blog.

Friday, November 9, 2012

Friday Funnies: Misheard Lyrics


I am notorious for this! I was cracking up in the car just the other day, in fact, over singing to the radio and getting a line hilariously wrong. Reminds me of all the funny misheard lyrics sites out there. Enjoy.

Wednesday, November 7, 2012

November Consult in Jackson

I went to see my Nephrologist/Internal Medicine specialist yesterday at University of Mississippi Medical Center in Jackson. Dr. Fulop is a gem, I consider myself very lucky to have him in my corner.

He admits to being baffled by my condition, but we had a laugh about it and it made me grateful that he hasn't given up on me in spite of not seeing the improvement we had hoped for. It's funny how I always go in there wanting to crawl into a corner and cry, but I leave feeling better even though things haven't improved. He told me he believes in his heart that I will be well again, and I appreciate that. I've been very down about my condition, to say the least, and it helps to know that one of my doctors has faith in my recovery. Can I keep him?

Dr. Fulop is a bit scared of the idea, as am I, but I will be starting a trial of Diamox in addition to all the other meds I'm on. This drug works for some patients, but makes things worse for others. Worse is dangerous, but of course I won't know which category I fall into unless I try it. He told me to promise that my family will supervise me and get me to the ER asap if I feel any kind of attack coming on (not that the ER will do anything for me). So, this is a risky move.

People with HKPP have no choice but to be Guinea pigs, because the treatment and symptoms vary so much. As far as I'm concerned, I have nothing to lose. I don't want to live like this, so if there is any chance of a treatment working in my favor, I'm going to give it a shot in spite of the risks.

Wish me luck, and I'll keep you posted.

Monday, November 5, 2012

Guess Who I Met Saturday?

Remember THIS POST from a few months ago?


BAM!!!!!!!!!

I had the privilege of supporting Martie Duncan and several of the Food Network Star finalists, including the sweet and fabulous Emily Ellyn, at a cook-off in Gulf Shores this past weekend. Still waiting on the rest of the pics from my uncle, but I'll share the details of this epicness soon!

The Painted Bra Art Project Results


I am so happy to report that my TARDIS bra was SOLD! Much appreciation to the person who purchased it! Thank you for supporting the Liz Hurley Breast Cancer Fund.

I look forward to next year's project!

EDIT NOTE: I just received an email that my other bra, "To Infinity and Beyond", has also been purchased! Woohoo!!! Thank you sooooo much!

Wednesday, October 31, 2012

6 Reasons To Cherish Your Alone Time


I love this article I read on Positively Positive. So much of it applies to my life, I can't help but share. Being single has been on my mind a lot lately. I will blog about it soon.

By Brett Blumenthal - Intent
I love to be alone. This may sound absurd, but for me, being alone is somewhat therapeutic. On one hand, you could chalk this up to the fact that I am an only child. Many only children are very comfortable being alone and are happy doing things by themselves.  Or, you might think it is because I am an introvert. (Although I have very extroverted moments, I am, indeed, an introvert at heart.) Whatever the case may be, when I don’t have enough time for myself, I feel drained, antsy, and overly stimulated. As a result, alone time becomes very important.
It doesn’t matter what I do when I am alone, as long as I get my “me time” fix. I might shop. I might write. I might go for a run. I might take a bath. I might even just veg out in front of the TV. Whatever the activity, it gives me the time I need to get away from others and to let myself recharge.
Being alone isn’t a statement about your relationships. Although I believe that relationships with others are a very important aspect to life and to our happiness, spending time alone is also extremely beneficial to our mental health and happiness.
Here Is Why:

1. Self Discovery
Spending time alone gives you the ability to discover things about yourself and to get a real understanding of who you are. We have grown to appreciate the art of getting to know others, but in reality, it is even more important to get to know ourselves, our preferences, and our likes and dislikes, without other people’s influences.
2. Higher Sense of Independence and Increased Self-Esteem
Being alone and getting comfortable with being alone gives you a higher sense of independence. Relying on yourself to make choices and decisions increases your self confidence, which then permeates other aspects of your life, including the times you are in the presence of others.
3. No Need to Compromise
Often, we compromise when we are in the presence of others. We usually work with one another to reach agreement on everything, from what we will have for dinner to what TV show to watch. Spending time alone allows you to indulge yourself with the things you want to do and the things you love, without any negotiation.
4. Rejuvenation for Your Soul
Getting away from others allows you to decompress and relax. It gives you a break from the “have tos” and allows you to focus on the “want tos.” It lets you address your own needs as opposed to everyone elses’ and gives you the opportunity to rejuvenate and push the restart button.
5. A Fresh Perspective
Time alone gives you the opportunity to clear your mind and weed through a lot of thoughts. This allows you to get to the heart of what YOU really think as opposed to being told or influenced by others and their opinions. It gives you time to reflect on what is important in your life and how you feel about everyday situations that need to be addressed.
6. Higher Appreciation for Those You Love
Giving yourself the ability to be alone allows you to have a greater appreciation for the time you spend with others. If you never have time for yourself, you’ll wish you did. It is important to find some balance in this, but once you do, you’ll enjoy your relationships even more.
If you find that spending time alone is challenging, try to start with a small dosage each day, even if it is for only five minutes. Each day, try to amp it up by a minute or so until you get to an hour. After practicing being alone, you will find it comes more naturally in time.

Friday, October 26, 2012

Friday Funnies: The Fake Doughnut

I laughed so hard at this...kids are the best!


If it's too small to read, you can find it on Facebook here.

Wednesday, October 24, 2012

The Painted Bra Art Project Auction & Juried Exhibit

I am SO excited to let you know that one of my art bras, TARDIS (A Doctor Who Tribute), was one of the bras chosen to be on display for The Painted Bra Art Project, and is being auctioned online for the Liz Hurley Breast Cancer Fund.



The auction opened this morning, and will run through November 4th. 100% of the purchase price benefits the charity, and bidding starts at $25.00.

I wish I could have attended the exhibit opening, but Huntsville is too far for me to travel in my condition. I am so very honored to be a part of this mission, however, and I look forward to doing so again next year!

Monday, October 22, 2012

Facebook Tip: How to stop comment notifications after you've commented on someone's post (pictures included)

Do ya hate when you comment on someone's post, and then receive a bunch of notifications of others' comments from that moment forward? It can get kinda annoying, right?

I finally figured out how to bring it to a halt!

Once you receive a comment notification following your comment, you can do the following:


Go to your notifications icon



Hover over the post you wish to unfollow



Click on the X



Choose Unfollow



TA DA!

You've unfollowed that post and will no longer receive notifications on it. Please tell me I'm not the only person who didn't know about this until recently. Glad I know now. My notifications are much less cluttered!


Sunday, October 21, 2012

I Won't Give Up



Can't enough of this song. My current favorite.

Friday, October 19, 2012

Wednesday, October 17, 2012

SIDS Bracelet - For Max and all SIDS babies



From the website: "SIDS, or Sudden Infant Death Syndrome is the leading cause of death among infants between ages 
1-12 months. It is defined as the sudden death of an infant under one year of age which remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene, and review of clinical history. Generally what happens is that parents go in to check on their sleeping child to find them no longer breathing, even though the child had been extremely healthy. The only thing doctors know to say is simply between one heart beat to the next, their heart just stopped. At this time there is no known cause of SIDS, and therefore it cannot be 100% prevented. However, there are many ways to help reduce the risk of SIDS. The proceeds will go towards the American SIDS Institute."


How nice of Bands For Arms to create a SIDS bracelet in memory of my baby bro. Max's birthday was today, and he would have been 17 years old.


The bracelet simply says "SIDS" and "SAVE THE BABIES". As always, the bracelet is made from a recycled military uniform. As they stated above, the proceeds will go to the American SIDS Institute.


Happy Birthday Max. Wish you were here.

Social Security: Good News & Bad News


My recent visit to the Social Security office was successful. With detailed documentation by my doctors, and my visibly obvious condition, I was declared disabled effective immediately.

That's the good news.

The bad news...very bad news...is that they are only giving me $65 a month. This is based on my living arrangements and the assistance I have been getting from relatives for food, fuel, and medication, all of which is temporary. The most I would have received is $698, but their calculations brought me down to minimal support. Forced to quit all of my jobs and drop out of college thanks to a disease that I was born with, and I get a whopping sixty-five bucks a month to live on.

I don't even know what to say to that. Doomed? That's a pretty accurate word. I don't have a chance in hell of making it. Once my aunt and uncle step out of the picture as caregivers, I assume based on the lack of consideration I have received since this began over 20 years ago that I will have no other relatives to turn to.

So what's next? Only God knows. All I know is that I didn't ask for this BS. Never have and never will. I have fought people tooth and nail to be believed in order to receive the medical help I needed to keep this disease at bay for as long as possible. Yet, here I am not even 35 years old at what seems to be the near-end of the rope. I have battled my own body since childhood with one goal in mind - to be completely independent. I despise with every fiber of my being a life of relying on others to meet my needs, and at the present time there is no hope in sight of that ever changing. It is unjust and unacceptable.

That is all I have to say right now.

Monday, October 15, 2012

Doctor Who: The Pond Finale, My Theory, & Other Thoughts

If you haven't seen it and don't want spoilers, you obviously don't want to read this. Fair warning, kids.

All photos and videos are property of either BBC America or one of many amazing Doctor Who Facebook pages. No infringement was intended. If a captioned photo was made by your hands, find me on Facebook or Twitter and tell me. I will be happy to credit you. Thanks!


"This is the story of Amelia Pond. And this is how it ends."


If you wish to read my pre-finale prediction on what was going to happen, you can find it here.


I would have written a follow-up before now, but I've been wallowing in Post-Pond Depression. :)


No, really. I knew I'd cry, but I didn't expect it to affect me as much as it did. I didn't just cry, I sobbed for well over 24 hours. I sobbed in my bed. I sobbed in the car. I sobbed in my bowl of soup. I...could...not...stop...weeping.


Even two weeks later, I still gush over tribute pics and vids. I'm a mess.


So to all the people I snarked at a couple years ago for having complete meltdowns over the Lost finale, this is my payback. You're welcome.

To be fair, my emotions were already running high. A friend had just passed away, and prior to that, several loved ones of close friends had passed away. Five people in three weeks, in fact. Some of my tears were a matter of bad timing...the straw, if you will. But besides that, it really did affect me deeply. The Pond farewell was beautifully devastating, and I was surprisingly right on the money with how Rory and Amy would go out. Hard to believe how accurate my prediction was, although I admit the episode "Blink" was somewhat fresh in my mind as I had seen it only a month prior (I'm new to Who and watched long marathons while stuck in bed over the summer).

I was quite off the mark about Brian, and like the rest of the Whovians out there, was sorely bitter about him not being included in the finale. Along with everyone else, I wondered what became of him. Surely, he had to be told that his son was dead. I couldn't believe we were left hanging like that.

As it turns out, Brian's scene was written but ended up on the cutting room floor. And here it is:


Just when I thought I was done boohooing, right? I thought this was beautifully done...heartbreaking. I'm actually in tears just typing about it. Congratulations, BBC. You've hooked a devoted non-fiction nerd with your fiction television program.

There have been some questions concerning why the Doctor can't go back in time to rescue the Ponds. Thanks to my recent Who marathons, I believe I can answer this.

As the Doctor himself explained in The Angels Take Manhattan, once he reads about an event in history, it becomes fixed and time lords cannot interfere with or revisit a fixed point in time. To do so would rip an unrepairable hole in the universe, and Amelia's crack in the wall was rather symbolic of that. Amy could be zapped back in time with Rory because she's human, but the Doctor cannot ever return with them because it would "tear New York apart", as confirmed by both the Doctor and River Song. If New York was torn apart, well they would all die anyway, wouldn't they? The answer is yes. They would not only die, they would die young. And take all of New York and eventually the rest of the world with it.

Let's flashback to a few previous episodes that reflect this truth (spoiler alert if you haven't seen these):

Season 1 (of the reboot), Father's Day: Rose and the Doctor screw up by going to a fixed point when Rose's father was going to be killed. Rose saving him ripped a hole in the universe, and in came the monsters to kill them all. Sadly, her father then had to save the world by making his own death happen. Repairing that fixed event in time is what repaired the hole in the universe, thus saving everyone else.

Season 4, The Fires of Pompeii: Donna and the Doctor arrive in Pompeii on the day of the eruption. He knows he cannot change anything but he tries anyway and nearly brings on the destruction of the entire world. He was then forced to cause the volcanic eruption himself to repair the fixed point in time, thus saving Earth (except Pompeii, obviously).

Tennant Special, The Waters of Mars: The Doctor knew he shouldn't have messed with the fixed point in time, but he saved Adelaide anyway. This caused the destruction of Mars, and eventually the universe. When Adelaide figured this out, she committed suicide to save the world for the sake of her Granddaughter. Her death was a fixed event in history that had to happen, and the way it went down because of the Doctor's mistake became part of his downfall (the following episode being his last...The End of Time).

So imagine if the Doctor did go back to Amy and Rory's fixed point in time to be with them. The universe tears apart and everyone is going to die. The only way to repair the tear is to repair the fixed event, which is Amy's death. Can you imagine the Doctor being forced to bring on Amy's death? He would never do it, and rightfully so. That is why the Doctor flipped out when he read her death in the book's table of contents, and why he knew it was over when he read Rory's and Amy's names on the tombstone. It was officially a fixed point in history, and it cannot be changed.

The fixed event rule is part of the Doctor Who blueprint. I suppose it always has been. I hope this helps everyone to understand why he can't just go back and sweep them away to the TARDIS. The universe and everyone's lives therein depend on it. Very sad, and very brilliant.

What an incredible show this is. I'm a fan for life.


Saturday, October 13, 2012

Crock Pot Cheeseburger Soup (With Chicken Tortilla Soup Conversion)


Crock Pot
How do I love thee
Let me count the ways


I've been having a passionate relationship with my Crock Pot since my Muscular Dystrophy kicked into high gear. It is very difficult if not impossible at times to stand in the kitchen and cook anything worthwhile, but my slow cooker has stepped up to bat on my behalf and helped a great deal.

I've been laid up in the bed for a little over 24 hours now with the migraine from hades, but I was able to crawl out of my dark bedroom long enough to pull off a great cheeseburger soup tonight. Not only that, I can use almost the same recipe for a chicken tortilla soup later on. I'll include the conversion details at the end. This is kinda like a 2 in 1 special, isn't it? Sign me up!

If you're new here, be aware that I am on a reduced sodium, low carb diet due to systemic disease. Therefore, I will mention my low sodium choices in the ingredients. If you do not want a reduced sodium soup, by all means use the full sodium varieties of my ingredients. I will say, however, that nobody would have ever known that I added no table salt to the soup...it was plenty salty enough thanks to the amount of cheese in it.

Sorry I don't have a photo - still can't find my camera!

Ingredients:

4 cups reduced sodium beef broth
1 lb organic lean ground beef
1 cup onion, red and green bell pepper medley, chopped
1 cup mild Rotel (use medium or hot if you prefer)
1 tablespoon salt free southwest seasoning from Spices, Inc (use whatever you prefer...taco seasoning, seasoning salt, whatever)
1 teaspoon minced garlic
1 small can no salt added tomato sauce
1 tablespoon reduced sodium onion soup mix
1 lb Velveeta cheese, cut into cubes
1 cup shredded cheese (I used Kraft Mexican Blend)
Cracked peppercorns to taste
2 teaspoons oil (I used extra virgin coconut oil)


Cook the ground beef, seasoning, onion, and bell pepper in the oil until brown. Add garlic and cracked pepper and stir. In the crock pot, combine all ingredients with the exception of the shredded cheese and set to high for 1-2 hours. Add shredded cheese and stir well. Cook an additional 30 minutes to 1 hour. Serve with tortilla chips, toast, or crackers.

This soup will be very thin. If you wish to thicken it, you can add a touch of flour, cornstarch, heavy cream, or cream cheese (at your own risk...I haven't done this but I know it works). You could also double the Velveeta...that would thicken it but be aware that it would also add twice the salt.

Like most cheese-based soups, it is not very pretty. It is, however, very tasty.

I can neither confirm nor deny that it can be successfully frozen or made into leftovers. Cheese = oil and broth = water so there is bound to be some significant separation. I'm a bit weird (ok a lot weird) about leftovers, so I would most likely not attempt it on this one. Feel free to give it a shot if you wish.

If you would like to convert this to a yummy chicken tortilla soup instead:

Replace ground beef with chopped chicken breast
Replace beef broth with chicken broth

Everything else is the same...voila! Can't beat that.

Hope you enjoy. If you have any questions, you can find me on Pinterest or Twitter @ugottafriend.

Friday, October 12, 2012

Wednesday, October 10, 2012

Low Sodium French Onion Soup Recipe

HELLO, SOUP SEASON!

I put so much cheese on top
it sank and took the croutons with it.


Anybody who knows me knows that I am a soup fanatic. Last year, I was dead set on making a great low sodium Chili. This year, it's French Onion Soup. I am so hooked on the French Onion Soup at Atlanta Bread Company, I could eat it every single day. I decided to give it a shot myself, on a day when I could use my muscles well enough to pull off the task. It turned out well, so I thought I would share my recipe with you.

First let me say that this is ideal for people on a low sodium diet, and also for those who do not use wine in cooking. I would use wine if it didn't spoil so quickly, but since I don't drink it (triggers HKPP episodes), I don't buy it.

That said, here we go. Sorry there are no step by step photos...I couldn't find my camera at the time (edit note: I added the photo above more recently).

Ingredients:

8-10 onions (yellow, Italian red, or both if you like)
6 cups low sodium beef broth
1/2 stick unsalted butter
Splash of balsamic vinegar
2 bay leaves
Pinch of salt (I use kosher)
Several grinds of fresh pepper
Gruyere or Swiss, shaved or grated
French bread, toasted (optional of course)


Slice onions in eighths and put in a large pot with a pinch of salt and the butter. Cover and cook very slowly, somewhere between 1 and 1.5 hours, until onions are caramelized.

Once onions are fully caramelized, deglaze with a splash of balsamic and slowly stir in broth, bay leaves, and pepper. Bring to a boil, then reduce to a medium simmer for 15-30 minutes, stirring occasionally. Add salt and pepper to taste.

Pour into individual bowls, shave Gruyere on top, and serve with toasted French bread. I like to put the toasted bread in the bowl, top with cheese, and broil in the oven.

Keep in mind that this is a lower-sodium recipe, and the taste will reflect that. By all means, use full-sodium broth or add salt as you wish. I think it's great, for what it's worth, and I hope you will too.

Tuesday, October 9, 2012

The Painted Bra Art Project

I just created the geekiest bras in history.



It's a TARDIS bra!!!!! Allons-y!



A shimmery pink infinity symbol in space!


Not bad for someone with Muscular Dystrophy who had to paint from her bed, eh? I wish I could have done better, but I'm pretty happy with them overall. The bras will be sent to the folks at The Painted Bra Art Project. If my bras are chosen for auction, they will benefit breast cancer research.


This was great fun, and I look forward to participating next year!

Sunday, October 7, 2012

Sunday Night Randomness

Happy Fall, Y'all.

Feels great outside at the moment. Too bad it's going to be 85 again by Wednesday. Autumn is my favorite season but the flip-floppy temps are rough on the muscles.

I'm participating in The Painted Bra Art Project for breast cancer research. You can view my project album here, if you're on Facebook. One of the bras is finished...now working on the second one.


My family's oyster farm is being featured at a really awesome local event involving Food Network's Martie Duncan and American Idol Taylor Hicks. It's going to be fantastic. I just hope I score a ticket somehow, because at the moment I don't have one.

The roller walker has been a life-saver. There are several places I could not have gone recently without it. Counting my blessings, in the midst of this turmoil, as best as I can.

I'm still waiting to hear back from Social Security. Amazing that they can take their sweet time with paperwork, but have no problem giving the applicant unreasonable deadlines in submitting information. I guess that shouldn't surprise me.

I plan to write a follow-up on the Doctor Who finale and how my theory played out, but I'm still recovering from Post-Pond Depression.

If you don't watch Doctor Who, you have no Earthly idea what I'm referring to. And you have my pity.

I also started watching Who Do You Think You Are, which is a cool genealogy show. I was especially fascinated by Alex Kingston's episode on the UK version of the show. Loved it and love her! I've been doing my own family history research lately and have found some interesting stories. Maybe I'll share some of them soon.

I've had quite a few hits on my site the past few days. Hello to all and I hope everyone has a good week.

Wednesday, October 3, 2012

HKPP FAQ


This is not a real update. I just wanted to share the link to HKPP.org's FAQ.

http://hkpp.org/patients/hypokpp-FAQ

That site has been a life-saver, literally. I am forever grateful to PPI and PPA for the work they have done and continue to do to bring correct information about Periodic Paralysis to the general public.

I have it bookmarked on my desktop, so that when someone asks what I have, I am ready to share. Sad to say, some people are more likely to consider a random website they've never heard of than the person they're questioning. I think most of us have been there, haven't we? I know I have.

Feel free to print and share my article as well, if you feel that it may be helpful.

It's a shame that we find ourselves in defense mode so often. The information is out there now. There is really no excuse for ignorant mistreatment anymore. We're not the lazy ones...the skeptics who ignore the facts are. I intend to make that truth known until my last breath.

This snarky post has been brought to you by Kelli.


(cross-posted to my medical blog)

Friday, September 28, 2012

Friday Funnies: Text From Dog


This made me laugh SO hard!

Check out Text From Dog. Hilarious!

Sunday, September 23, 2012

Doctor Who: My Theory On The Pond Finale


This Saturday will be a tearful goodbye to the Doctor's beloved companions, Amy and Rory. What a great couple of characters the Ponds are...very powerful.

Although I have no clue how the finale is going to go down, I've come up with a few theories over the past six weeks. As of now, I've decided that I'm sticking with one of my first intuitions that I wrote down in early August. I'm going to document it here just in case I'm crazy enough to be correct.



After refreshing my memory of the weeping angels' first episode "Blink" from a few years back, as well as watching "The Power of Three" and "The Angels Take Manhattan" trailer today, my final prediction is: 

Amy and Rory will be transported into another dimension on a parallel timeline (the "crack" may or may not be involved), able to live but separated from the Doctor forever. River Song may suffer, but will survive because we know she doesn't die until she meets the 10th Doctor in the library (her life moves in the opposite direction, remember). Brian, Rory's dad, will die. This has to happen, otherwise he would be the Doctor's new companion. Poor Brian is toast...no doubt about it.

If (big IF) Amy and Rory are dead at the end of The Angels Take Manhattan, it is because they were transported to the past and died of old age. They won't die young.

So I believe that's it. Amy and Rory will go together to a new dimension, but the Doctor will lose them in the process because their new timelines cannot converge.


I might be wrong about it all, but this is what my gut is telling me. I'll find out soon enough. Too soon, as far as I'm concerned. Love me some Amelia Pond. I'm gonna boohoo like nobody's business, and if a fictional character makes a grown woman in her 30's ugly-cry, you know the production is well done.

Kudos, Karen and Arthur. You will be missed.

Edit Note 10/15/12: My Post-Pond follow-up can be found HERE.