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, December 31, 2014

Grace, Illness, What Lies Behind, and What Lies Ahead


I'm bringing in the new year quite ill, but thankful to be in a warm room surrounded by blankets and pillows made by family and friends. This has been a tough year, and I have to believe that the next will be better. Even if I'm not feeling it at the moment (I'm not), I know happier days lie ahead.

I've been talking to God all day. He's heard everything from "thank you, I know how lucky I am" to "I can't believe this is my life, thanks for nothing". The grace of God is that he loves me no less in my waves of grief and self-loathing than he does when I'm delightful (which isn't often). I'm glad to also have people in my life who accept me in the bad times and believe in me even when I don't believe in myself. You would be surprised how many have walked away - people who by definition of who they were should have never given up on me. I'm crushed, but I don't accept defeat, and when someday I do fall down for the last time, you know it won't be without a fight. I'm a stubborn woman, and nobody, not even those who abandon me, will ever be able to say I didn't try.

2014 brought many changes, and 2015 will bring even more. I have been blogging for over a dozen years now, and I have always written a long entry dedicated to reviewing my goals for the year and making new goals for the year ahead. I haven't given it a single thought today. As of right now, I just don't care. Right now, my only wish for myself is to survive 2015 with my sanity intact. Right now, I simply want to see tomorrow. Right now, that's enough.

Know that I love and appreciate all who have stuck with me. I am thankful to have such thoughtful people in my life. You are truly a treasure, and I hope 2015 gives you everything you hope for and more.


Friday, December 26, 2014

Christmas, Courage, & A New Year

I want to thank my family and friends for the cards, gifts, thoughts, prayers, and simply your presence (which is much more important than your presents) this Christmas. I apologize for my inadequacy where returning the favor is concerned. This is not my favorite holiday nor my favorite time of year - everybody who knows me well knows this - but I always hope to make the best of it or at least get through it in one piece. It is usually a relief when it's over, because that means the new year is coming up and my silly brain usually registers New Year's Day as a clean slate and a new start. I'm not sure how I will be feeling about it this time. 2014 has been a year of grief and many changes, but one thing is certain - I will try.

I'm a chronic trier to the point of my own detriment at times with no intention of giving up even when my mind and body and circumstances and people insist that I do so. I would like to believe I have purpose in the world in spite of my brokenness...perhaps even because of it. So even though I never wanted to be a fighter, I put on my mask and I fight. Anyone you talk to who is faced with serious illness and/or deep loss will tell you that they carry on not because they are doing well or because they are feeling better or because they want to, but because they have to. Because it's the only reasonable option. Because they know the alternative. Because even in the darkest of times, it is the right thing to do.

I've read that courage is not the absence of fear - it is choosing to rise to the challenge in the midst of that fear. So I pray for courage as I end this year and begin a new one. I am a realist and I know this stubborn illness, the frustration, the difficult pain, the grief, and the seemingly impossible circumstances will still be there. But I also know I'm equally impossible, difficult, and stubborn, therefore I will strive to face it all with my heart, mind, and stupid sense of humor intact.

Because I have to.

May 2014 end as well as possible, and 2015 be better.

Monday, December 15, 2014

Sometimes, I manage to kick Muscular Dystrophy's butt.

But sometimes, it kicks mine.





I'm not worried about the brown dish since I bought it, but I would like to replace my late MawMaw's 1980s turquoise clear-bottomed nesting bowl if anyone happens to run across vintage Pyrex online. Email ugottafriend4life@gmail.com with "MawMaw's bowl" in the subject line.

Thanks...  :(


Edit Note 12/23: Someone has graciously replaced the bowl. It's the exact same one, which makes me very happy. I have such thoughtful friends...thanks so much.


Tuesday, November 25, 2014

One Thing

If I could only have one purpose on this Earth, one life goal, one daily motto, one publication, one website banner, one profile picture, or one piece of advice to anyone, everywhere, it is this.


What I do with the dash between my date of birth and date of death will never be enough, but the question I know I will ask in my last breath is "did I make a difference". I hope and pray the answer will be a humble affirmative. I'd even settle for a "probably" if it would mean my existence isn't in vain.

I may not have much or be much, but may God help me, in spite of myself, to give it my all.

Sunday, November 23, 2014

Local Sleep Consultation

I finally finally (did I mention FINALLY) met with a pulmonary sleep physician a few days ago. He was great. We discussed my history and my condition (he knew it had to do with potassium, but didn't realize the primary form involved a myopathy or that the MDA was involved). He said he'll read up on it, and I offered to give him more information when I see him again.

A bit of back history on me: I had two sleep studies at age 20. I was found to have restless legs and borderline sleep apnea. It wasn't enough to officially diagnose me with sleep apnea, but they said I was holding my breath for no reason and asked me why. It annoyed me because it's not like I do it on purpose or something...hello. At any rate, they were sleep psychiatrists and wanted to talk psychiatry and give me klonopin, both of which I declined. The hospital eventually shut down, and my records were lost (probably in Hurricane Katrina).

I would have been willing to see a sleep psychiatrist again, but I'm happy that he ended up being a sleep pulmonologist instead. With my breathing issues and muscle disease, that is the right place to be in my opinion.

The doctor was very confident that my condition has worsened since age 20, and diagnosed me with obstructive sleep apnea. He wants to confirm it via sleep studies, of course, which is what I was expecting. Their schedule is incredibly backed up, so I'll return for study one on January 30th. The second will take place a week later.

He said he has no doubt I am not breathing well at night, considering that I choke and occasionally snore. He also diagnosed me with sleep deprivation (glad that's finally documented) and said he hopes he'll be able to help me with that via oxygen. The studies will tell him what kind I need. I already have a CPAP machine at home in the closet that was donated to me, I just couldn't get it calibrated without the studies, so here I am. He is hoping that the CPAP will be the right thing for me so I don't run into any trouble with getting other equipment (financially speaking).

Overall, it was a solid consultation. He was very nice, eager to answer any questions, and seemed positive and helpful. We'll see what happens come January. I'll keep you posted.

Monday, November 17, 2014

I'm a busy bee!

...or is that a butterfly?


A friend and I had a craft booth at a local church fundraiser. It was a blast. She painted faces, and I sold a few goodies:


My sketch journals were a conversation starter. Loved meeting a few Whovians on the Mississippi Coast! I also made my chocolates, as I often do during the holidays. They turned out pretty darn wonderful.







Yummmmmmmmmmmmm!

I was on my walker and could have never done any of this without assistance from friends. We didn't make a ton of money, but we sure laughed a lot, as we usually do. I went straight home afterwards and crashed. I've pretty much been down with muscle weakness ever since. I'll hopefully see some improvement in spite of the extreme weather fluctuations we're getting at the moment:

It was 73 at 2:00 this morning. It will be 27 tonight.
Small fluctuations are noticeable. Large ones are detrimental.
May God have mercy on all of us with systemic disease.


Last week, a friend and former Bob Ross student invited me to The Melting Pot for dinner. Folks, it was one of the most incredible dinners I have ever experienced:





Everything was amazing. I loved every minute.


The weekend prior, I carpooled with my family to Louisiana. You'll never guess why. In fact, I cannot believe I haven't blogged about this yet. I've been living in a fog since Mom died and I've forgotten to share so much here. At any rate, here is the good news:

My little Zoey Boo Boo is going to be a BIG SISTER!
WOOOOOOHOOOOOOOOOOO!!!!!

We are so excited to have another princess in the family! And what a special honor that they're naming her after me. It makes me cry if I think about it too much. I can't wait to meet her!!!

The baby shower was nice, and I was glad to see my nieces.

I'm thankful that I could go to Louisiana to spend time with everyone, and I hope and pray I am able to return when the new baby arrives in less than two months! Squeeeeee!

I haven't forgotten about National Novel Writing Month. In fact, I have been a writing fool and I'm on track to reach 50K at the end of the month. I've met with nearly 20 other writers around the gulf coast over the last 2.5 weeks, which has been great. I hope we can keep in touch after NaNoWriMo ends.

As I said earlier, my body is pretty fed up with me being so active, so I'm down for the count at the moment. I had to bring out the emergency potassium and magnesium in an attempt to get my condition under some sort of control. It's been a rocky couple of days, but I'm doing my best.

Thanks for hanging in there with me, readers. I hope everybody is doing great.

Saturday, November 1, 2014

HKPP Medications Update

Just letting medical-related readers know that I've updated my HKPP blog with a new list of medications and supplements, as well as a humorous post with TMI, a rant about emergency care, and other ramblings. If you have HKPP or are following my medical posts, feel free to subscribe over there. (You're welcome to stay here, too. I didn't mean it like that.)


I appreciate all of my readers, both new and long-suffering. I've had over 100,000 hits now, and some of you have been with me for 5 + years. Sometimes I wonder if you genuinely care about me or if you simply enjoy being a fly on the wall of someone else's train wreck life (ha), but either way it's pretty amazing that you're still here.

Thanks for riding the roller coaster with me.

National Novel Writing Month 2014 Is Upon Us


IT IS TIME.

I AM NOT PREPARED.

JUMPING OFF THE DIVING BOARD HEAD FIRST.

IF ONLY I KNEW HOW TO SWIM.

CAN YOU TELL I'M FREAKING OUT?

BECAUSE I AM.

Okay, I'll stop with the shouting. :)
50,000 words. Let's do this.
Ready...set...goooooooo!

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.

http://letsfeelbetter.com/urgent-clinic-doctor-fail-i-dont-even-care-if-you-google-it/

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.

Saturday, August 16, 2014

Wednesday, June 25, 2014

Unexpected Hospital Stay

I went to the ER on Friday. You know if I do that, it must be bad because I hate ERs with a passion. I was hospitalized until Tuesday evening. It went much better than usual with the exception of a few medication errors that resulted in an HKPP decline. They handled it as well as they knew how, and I'm doing fine other than the usual pain that they have no solution for.

I met with a social worker while there. She signed me up for grief counseling, and they said they would try to help me find public housing.

I have a couple of doc appointments coming up - July 1 with the counselor and July 3 with a Gastro specialist. Guess we'll see what happens.

Thursday, June 12, 2014

Sweet Retreat


"Sweet Retreat"
15" x 15" Colored Pencil

I purchased all of the candy from Cracker Barrel. Part of the bag made it into the still life, so I decided it would be a tribute to the restaurant. That was four years ago. Serious illness and crappy motor skills kept me from it for a long time. I started having significant breathing issues recently, and I told myself I would finish this thing if it was the last thing I did. So it's done. It was my first (and currently only) color pencil project. I've received some nice feedback from friends, family, and even a couple of gallery owners, which was very encouraging. I hope that I can beat this disease somehow so I can fully return to my art. I still have so much to learn, and so much to do.

Sunday, May 11, 2014

Mother's Day


A blessed day to all Moms of living children, children in heaven, fostered/mentored children, those trying to have children, those who cannot have children, and those who have lost their mothers by death or other circumstances.

You are in my thoughts today.

Saturday, May 3, 2014

I sincerely hope your April was better.















In Summary:
This has been one of the worst months, and years, of my life.
I appreciate everyone's thoughts and prayers at this time.

My dear friends the McLain family honored my mom at their annual American Cancer Society Relay For Life. Thank you.

My stepfather wrote a love letter and put it in the newspaper.
Pray for him. He's lost without her.
(My memoriam will be published in a couple weeks.)

Easter Sunday started off with my car breaking down on the interstate. Someone picked me up and brought me home. I tried to make lunch. The pot caught on fire, burning me, and falling to the floor which also caught on fire. 911 called. Thank God it was out quickly. One of my biggest nightmares was for my MawMaw's house to burn. I'm sad, but more than anything, I am so grateful that it wasn't worse. A floor and a stove can be replaced. Lives and body parts can't. My eyes are a little fuzzy, but fine. My hands are healing like a champ. I am so lucky it wasn't worse. So lucky, so blessed, so thankful.

The painting was done impromptu after Mom's phone call. It's called A Thousand Tears, after a poem I wrote when I was a kid:

"Though I have cried a thousand tears,
I know they are not in vain
For my Savior and Lord is returning soon
To take away this pain."

She was in so much pain, she was screaming and crying. I will never be able to erase that from my mind. Freddy said she talked to God all night long every night until she became too ill to speak anymore. It happened fast. I'm devastated, but relieved that she's not suffering now.

I thought I could get through this, but I've wept for half an hour just trying to write the last ten sentences. This is the best I can do. Talk to you soon.


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.

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 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 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 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.

Saturday, March 22, 2014

Long Overdue Health Update - 3/22/14

I'm having a hard time blogging, if that wasn't obvious. Things are extremely stressful at the moment, and I'm still trying to recover from the 2014 body infection and paralysis of doom. At any rate, I'm here with a boring update.

Three weeks of fevers, three infections, three antibiotics, loads of cough and cold meds, an ER visit, major paralysis including my digestive tract (lost around 7 pounds), a trip to the docs in Jackson, increased HKPP meds, and I am finally...FINALLY...beginning to snap out of this nightmare. I am back on a walker and even driving a little bit. I managed to attend a Doctor Who meeting today in a nearby city, before coming back home and crashing into bed with a migraine and weakness. I'm going to have to take my recovery a little easier I guess, but it's hard when I have so much to do. I have been down for literally seven weeks. I was bedbound nearly the entire time, and my aunt has come over each day to help me. She still is, because I'm still unable to do things like laundry or cook a real meal other than using the microwave or toaster oven (which is better than nothing, I realize). She has been a lifesaver, as usual.

My aunt and uncle took me back to Jackson for an appointment last week. I was in a wheelchair, and we decided that in order to bring me out of my prolonged paralytic state, the meds needed to be increased. It appears as though I need the increased meds just to be able to function for a couple hours a day. The rest of the time, I'm here in bed trying not to lose my mind. Next week, I'll go to the local clinic to check my potassium level, then it's back to Jackson in April.

My birthday is tomorrow, and I hope I'll at least be able to get up and do something. I don't know what it will be, I'll just have to play it by ear.

There is a lot more going on in my life, but I am not ready to go there yet. I'll explain when I am at liberty to do so. I appreciate the prayers, thoughts, well wishes, gifts in the mail...I have such thoughtful friends. Thank you for hanging in there with me. Hope everybody has had a much better 2014 than this. I'll eventually get back on track with things around here, I promise.

Sunday, March 9, 2014

Let It Go



This damn Disney song makes me ugly-cry like a two year old.

Frozen is much better than it appeared in the trailer. In fact, the trailer showed nothing but funny and intriguing elements while completely hiding the fact that the storyline is a boohoo fest. It rivals Mulan, which in my opinion is one of Disney's very best non-Pixar animations. In spite of a magic power being involved, the plot is believable and not overplayed like a lot of "Disney Princess" movies are. It's heavy in metaphors that people of all ages can apply to their own lives, to the point of psychological impact. The Oscars for best animated feature and best song are well deserved. Had Let It Go not won, no doubt there would have been a riot.

The story represents so much to so many people. For me personally, it has been a struggle to let go of the injustice, oppression, and criticism I've received all my life for being who I am and for some of the life decisions I've made. A lot of people don't understand me, and unfortunately we humans are notorious for knocking what we don't understand. As a result, some think I'm weak and wrong and wish I would conform to their version of "normal".

Newsflash: it is never happening. I am a Southern white Creole-Cajun, hetero-abstinent, politics-hating non-partisan humanitarian, culture-embracing, gay ally, anti-racist, non-denominational Christian woman with crippling, life-threatening systemic disease who survives on public welfare. Deal with it - every bit of it - or promptly pick up your toys and go home. This is not a game, so don't think for a second that I am a challenge to be conquered. You will lose. Miserably.

As the song says, I'm not going to be held down by someone else's ideal, and I don't care what they have to say about it anymore. Those who truly love me respect me, my feelings, and my life decisions, just as I do for them. And even if I am Queen Elsa - the "different" one with the freak genetic condition that makes me appear weak - isolated by the cold around me, I will continue to stand my ground and be content in knowing that I'm free of the control of mental hijackers.

As for wrong - I'm not. Not anymore. Thank God, the past is in the past and I'm never going back. Beyond a shadow of a doubt I've finally done right by myself, and I will never regret it. I'm sure I will continue to be misunderstood, judged, and criticized, but I strive to let go of the fear and pain that accompanies these things. I am not a prisoner. I will be me whether people like it or not.

Here I stand, and here I stay. Let the storm rage on.

Thursday, March 6, 2014

Okay, I'm Here...Sort Of.

I haven't felt like blogging. I'm still stuck in bed with hurting ears and partial paralysis, and I'm just SO over it. There are no words for how sick I am of this BS. I need to be up and around, I have things to do. Especially now, as I received heartbreaking family news the other day. The clock is ticking on life as I know it, and there is much to be done. I will have to explain later...I am not at liberty to do so at this time.

My aunts have been saints throughout my illness. One of them brings me something to eat every day, and picks up snacks and medications when I need it. Life has come to a complete halt, needless to say, and I would not make it without their help. I'm thankful they care.

My nieces have both had birthdays. I am missing their parties, which sucks. I'll send them gifts when I finally get out of bed. I hope and pray it'll be soon.

My birthday is around the corner, and I would appreciate feeling human by then. Fingers crossed that I'm out of this bed in the next week or so.

Tuesday, March 4, 2014

Sunday, February 23, 2014

Quick Update

Things have been bad here, and I still have a long way to go, but I'm finally starting to see a light in this tunnel of hell.

Really appreciate my aunts and my uncle bringing me food and meds while I'm stuck in bed. I've lost 6 lbs from being so ill, but I'm thankfully keeping a little bit of food down now. Still bedbound, partially paralyzed, and have the other symptoms going on, but hopefully it will all pass soon. I've been sick in bed 50% of 2014 so far, and that statistic sucks.

Thanks to those who sent messages and checked on me.

Better days ahead...I'm sure of it.

Sunday, February 9, 2014

Sick...again.


Now in bed with either the flu or a respiratory infection.
Fever, chills, coughing, the whole miserable nine yards.
Winter can kiss my aching butt.

Saturday, February 1, 2014

Many Thanks To My Readers

I was talking with a friend today about the history of my website. I've been "ugottafriend" for many years. I started out on Yahoo Geocities, and eventually Yahoo Webhosting. In spite of the upgrade and the fact that I had a few pretty cool pages back then (the biggest one being a baby name listing), I only achieved about 8500 hits over a period of 5 years. Then the entire site crashed, and I had to start all over. I decided to do so a few years later, in 2008, via Google Blogger. I set up a few generic pages, and I eventually registered the domain ugottafriend.com.

Fast-forward another five years, and the number of hits on my site is more than 10 times what it once was. I reached 100,000 this week. For someone who has no giveaways, paid reviews, or other endorsements, no kids or pets to dote over, absolutely no advertisements or salesmanship, a complete lack of organization, little HTML knowledge and basic templates, I find it pretty remarkable that people from all over the world even bother to give me a minute or two of their time. I'm just another face in the crowd, but this outlet gives me the voice that I've been searching for all my life, and I am humbled that anyone cares enough to hear it.

I'm not worthy, but I am grateful. Thanks.

Tuesday, January 28, 2014

Wacky Weather Update


Snow & Rain, Clouds, Sun, Sun, Rain, Thunderstorms

Welcome to the Gulf Coast!


Sunday, January 26, 2014

Wacky Weather


Sun, Rain, Snow & Rain, Sun, Sun, Rain

Do the Hokey Pokey and you turn yourself around...



Edit Note 12:00PM

Less than 5 hours later,
they changed Wednesday from sun to snow.

I can hear the weather forecaster now:

"The sun will be shining on Wednesday.
Actually, let me double-check that."
*consults Magic 8 Ball* "No wait...SNOW!"

Friday, January 24, 2014

Nothing important, just a couple of pics.

I ordered some geek specs from Zenni. I am a freak who has a large head but a child-sized bridge. This was the only pair they had that fit the criteria. Not too shabby, I guess.


My potassium script now comes in a bottle as big as my head.
It could be worse.

Wednesday, January 15, 2014

I'm here. I guess I'm going to talk television and silly crushes and health and nieces today.

Greetings, people of Earth. I'm still sick in bed. Just weak, mostly. Finally getting around on the rolling walker, but not terribly well so I see the outside of my bedroom once or twice a day at best. I've been doing a lot of online movie and TV watching...not something I do often, but it's passing the time. It's been a fantastic distraction, actually. One that has been much-needed, as if that wasn't obvious by how 2014 has gone thus far.


At any rate, I'm a bit behind so let me start with Doctor Who. Matt Smith's finale was outstanding, as I knew it would be. I was discouraged by how many people disliked the episode, and I could not disagree more with their complaints. It was amazing, and Matt will be missed terribly. He will always be my first Doctor, and has a special place in my Whovian heart in spite of being head over heels over the magnificent tenth Doctor, David Tennant. Eleven was equally amazing in his own way, and many of his episodes are the best Sci-Fi television I've ever seen. If you have never watched (it's not for everybody, but I say give it a try), and I was only allowed to suggest one episode, it would be "Vincent and the Doctor" hands down.

Watch it with a box of Kleenex.


Now allow me to switch gears to another BBC masterpiece:

SHERLOCK!

Holy Epic Win, Batman, I cannot express how mind-blowing this series is. Where do I even begin? This was my introduction to both Martin Freeman and Ben Cumberbatch, and I could not be more impressed. If you know or care anything at all about The Adventures of Sherlock Holmes or even if you don't, do yourself a favor and watch a few episodes. They are long...an hour and a half...but this show is so very worth the time. Every actor does a stellar job in their roles. Sherlock is a whirlwind of brilliance, confusion, emotion, and just plain awesomeness. If you have any interest in Mystery or Literary Fiction, it is a must-see. The most recent episode, Season 3 Episode 3 ("His Last Vow") is quite possibly the most phenomenal 90 minutes of television I have ever seen in 35+ years on this planet. No joke. It is absolute perfection.
I mean it. These two are glorious.

I recommend starting from the beginning with S1 E1. There are only 3 episodes per season, so you can catch up quickly. Feel free to tweet me to discuss the show, if you like.

I'm going to just go ahead and say it - John Watson is my dreamboat. Ha! People who know me know I'm usually hooked on non-fiction. I don't go silly over many fictional characters, or men in general for that matter, but this one...oh yes, most definitely. I've tried to make the best of my bedbound state of health and have inundated myself with all things Martin Freeman. He has talent for sure, easily one of my favorite actors now. I'm considering sending a letter of appreciation across the pond. I've never done that before, but I just might for him.

Yes, he's my laptop wallpaper. No, I'm not ashamed.

If you haven't been living under a rock, you know he's also Bilbo Baggins, aka The Hobbit. I watched the first movie last week, but have yet to see the second. It's still in theaters, and I'm, well, stuck in bed unable to function. It would have been nice to see Martin's beautiful face on the big screen (oops, did I say that out loud?), but I'll have to wait until it's available to rent...which is okay.

I'll stop gushing now. :) Just felt like sharing.

In health news, it was confirmed that pneumonia is not the cause of my screwed up lung. So, that means it's something else, which isn't good news. Since the paralytic episodes became severe a few years ago, I've been having trouble breathing and swallowing, sleeping, and at times staying fully conscious. I made the mistake of mentioning this to my mother, and now she's not speaking to me again. She withdraws when she doesn't want to face something, so as I always have, I am dealing with this situation solo. When I am up and around again, hopefully soon, I'll be pursuing a Specialist in Pulmonology. I am truly exhausted. I've decided if I make it to 40, I'm going to have the biggest freaking birthday party in history. Everybody's invited.

In much happier news, Josephine and Zoey are growing like weeds. Jo is talking up a storm now, and she is absolutely hilarious. Zoey Boo Boo finally figured out how to crawl forwards...ha...and she is the sweetest, happiest baby. I fear that I won't see them grow up and that they will never really know me. I wish so much that they didn't live two states away. I figure they'll probably think of me as the "weird" aunt, if anything. I suppose I could live with that, though. After all, they would be right. :)

I hope 2014 is being kind to you all. Be well, my friends.