Just letting everyone know what is happening. I'm typing this from my phone but I'm not terribly good at blogging from it. I hope to be back very soon. I have been so busy, but will be able to take a bit of a breather after my show on the 2nd. I promise I'll share some pics from the event.
Three days ago, I was doing silly voice impressions at my one year old niece. My sister in law laughed, and I told her I should have been Robin Williams' kid. Little did I know, this warm, funny, talented man would end his life only hours later.
When I was young and stupid, I called people who committed suicide "selfish". Instead of kind words, I turned their very real medical condition into a violation of my feelings. How very pathetic - and selfish - I was for that. I'm so sorry to those I unknowingly disrespected when I didn't "get" it.
I eventually began to experience close encounters with suicide: a friend's husband, another friend's ex-boyfriend, and an uncle, to name a few. I am the type of person who wants understanding. I demand reasonable explanations, not speculation, blaming, or hyper-religious BS. So I sought education, and it made me realize how very wrong I was about this thing called suicide. It is a fatal symptom of a psychological and often physiological condition that the victim wouldn't wish on anyone. We've all had an ailment that required medical attention, haven't we? They didn't choose their illness anymore than we have chosen ours. This is not make-believe. People can't just "be positive" or do charity work or simply think of those they love in order to "snap out of it". They're not making up their problems, nor can they wish them away. We will never fully know the pain someone else lives with, but for the love of God, can we look past ourselves long enough to have a thread of respect for the patient? Only a scumbag would insult someone who is sick and desperate for relief. Don't be that person. Don't be the person I was when I was young and dumb.
Mental illness is just that - an illness. Sometimes, and in the case of Robin Williams, people who are sick seek help. He was in the hospital not even three weeks ago. He wasn't a coward, he wasn't in denial, and he wasn't prideful. He asked for help. But sometimes, just like a physical illness, the treatment doesn't work. That is reality.
May God have mercy on our ignorance.
I pray you rest in peace, dear Robin. The world is a sadder place without you.
I released my first short story, "Four", on Writing.com and received a five-star rating. That was nice. Some people are too weirded out by it to give me a review, understandably, but I am so happy that I wrote the story. The feedback I've received has been incredible, and even a small impact is an impact nonetheless. That's good enough for me. Totally worth it.
I'm still in Camp NaNoWriMo, and it's going okay. I have made a good bit of progress on my novella, The Children of Mossy Hollow, and I have every intention of completing the manuscript by the end of NaNoWriMo in November. I met with a couple of local writers today and we have agreed to meet several times a year for the purpose of progress and motivation.
I've gotten quite a bit done around the house. It's still not sold, but I'm packing up what I can and getting things sorted. I'm selling things that I'm not using and using the money to get some of my artwork framed.
That leads me to the big news. I am being given an art show.
I asked the library if I could put a few paintings on display. They visited my newly renovated webpage, and told me it will be an exhibition complete with local press, advertising, and a reception with refreshments, etc. I told the manager that I wasn't wanting all of that, but it's their policy. So here I am, having my own solo art show. I am both excited and terrified.
As long as a hurricane doesn't blow through, here's the scoop:
Tuesday, September 2nd
5:00PM to 7:00PM
Ina Thompson Library
Moss Point, Mississippi
I've been running around like a headless chicken trying to get work framed and presentable. Much of my art was boxed up in the storage room, but now it's sitting out all over the house.
I'm also working on new pieces for the show.
I am planning to display something in the neighborhood of 16 pieces, but it may end up being more or less. I am actually going to have about 23 on standby, but I am almost sure all of them won't fit on the walls. We'll see what happens. There is absolutely no way I could do this on my own, so thank goodness, my wonderful stepdad is going to help carry and hang the stuff. The man is a saint, God bless him. I hate that Mom isn't here to see this. My art was really the one big thing I did that made her proud. So this is for her too, in a way.
It has been years since I've been in a spotlight, and I don't care for it much. I am looking forward to the show, though. It would be awesome to see some of you there. I'll keep you posted, friends.
I have been busy since being discharged from the hospital.
I drove to Bay St. Louis, MS, stayed overnight, applied for public housing, had to go home to get more paperwork, drove back to BSL the next day, had breakfast at an amazing place called Grammy's Donuts & More - best biscuits and gravy I've EVER had - and drove home. Notable restaurant names I saw: Mother Cluckers, and Slap Ya Momma BBQ. Ha!
Made an awesome homemade pizza,
and beans and peas with honey ham.
Put myself on Mobile County's public housing waiting list, which is impossibly long.
Caught up with Camp NaNoWriMo by putting a large dent in my novella, now called The Children of Mossy Hollow.
Picked up French bread at Jimmy John's in West Mobile, AL and saw a guy there who looked exactly like Vincent Van Gogh. He even had the hat. I can neither confirm nor deny if he was missing an ear. Sorry I couldn't get a photo.
Got my finished color pencil project professionally framed.
Ended up in some crazy traffic on the 4th of July. So crazy that I almost regret leaving the house, but at least I made it home safely.
Met with a social worker (more on that later) and two doctors. Had an upper GI. Still having digestive issues from that. Still waiting on results of the test.
Attended an event at Ohr-O'Keefe Museum in Biloxi, MS.
If you don't know who "The Mad Potter of Biloxi" is,
or the designer of this facility, Frank Gehry,
you've been art-deprived. Google them.
Cooked, cleaned, did some car maintenance, and ran some random errands.
Whew! I am so exhausted, but thankful to be up and around, albeit, walking with assistance. A big part of my livelihood is in being as independent as possible. Being able to drive, run errands, and take care of myself is a huge priority.
Ann Latos and I have parallel lives. She has the same form of HKPP that I do, and her mobility came crashing down as quickly as mine did a few years ago. Just as I've experienced for over 20 years now, some of her doctors, family, and friends didn't believe her illness was real.
I hope Ann never stops sharing her journey, because I know how lonely, frustrating, and despairing it is to live with this rare systemic disease. There are others out there suffering more than necessary as Ann and I have because they can't convince people to listen and care. Some patients have even died by the hands and voices of ignorant caregivers. In order to stop these senseless tragedies, all of these people, and their future generations, need us to speak out just as much or more than we need to be heard ourselves.
I don't know about Ann, but those who wish to silence me will be sorely disappointed. I will never stop talking about my life - the good, bad, and ugly. The thanks and positive feedback I have received from around the world triumphs over the false judgment, unsolicited opinions, and criticism that any skeptic has thrown at me. To those people, I simply say "Game Over". You lose. I have no doubt Ann feels the same way now that she has found the physical and emotional support she needs to continue fighting this battle.
I appreciate the MDA for sponsoring her blog. Familial Periodic Paralysis is still a widely unknown and misunderstood disease - one of the rarest forms of Muscular Dystrophy in existence. The only way to save lives and give patients a better, more independent future is if we make it known and understood, and that requires awareness. Go Ann!
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. I'm already anticipating an upper GI, and I don't know how this is going to be handled with my HKPP being as bad as it is these days. So risky. Incredibly risky.
I have been having severe abdominal pain and breathing problems for quite some time, but it has gotten a lot worse lately. I tested negative for endocrine infection, so something else is going on.
I have been having so much trouble breathing at times, I feel like I'm smothering. I've burst into tears more than once from the pain of simply trying to take a breath, and I often can't finish a sentence or phrase without losing air altogether and feeling faint.
I finally noticed that it is a lot worse after eating or drinking, and I put two and two together. I've had a hiatal hernia for over a decade, and it has most likely become obstructive.
What makes this so difficult is that I cannot safely have surgery. With my HKPP weakness being so severe, and my diaphragm/esophagus/lungs already compromised, the risk of death under anesthesia is very high. I have no idea what's about to happen to me.
Now waiting for a GI referral. I'll keep you posted.
Edit Note 6/18: Physical activity makes my breathing a lot worse, too. I almost passed out in Target today. I'm headed to the ER if this gets any worse.
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.
Even though I don't want to. What I want to do right now is give up.
A great deal is going on with my health, both physically and otherwise. None of it good. I don't feel like talking about any of it at the moment, but I will eventually. For now, I am trying to stay busy. Trying to keep breathing. Trying to convince myself to wake up each day and continue on.
It's not what I feel like doing, but I know it's what I have to do.
I am so happy that I could contribute a small amount to this wonderful campaign. I look forward to seeing the future of Reading Rainbow in every home, school, and library. Congratulations LeVar and team on one of the most successful Kickstarters in history.
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.
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.
I met with the MDA and the Neurology team about what to do next. Discussed my swallowing issues, shortness of breath, migraines and nausea, the horrible year with paralysis I've had so far, and the level of pain that makes me want to be shot in the head. Told them about the mood swings and meltdowns caused by the acetazolamide. Nothing to be done about it as anti-anxiety meds cause paralysis (already tried them). Also can't get off the acetazolamide without falling back into a nearly constant state of paralysis (tried that too). The only pain med that I am aware of that I can safely take is ibuprofen (which my renal doc forbids, but I'm taking it anyway).
The new doc who spoke with me first was very interested in my genealogy, so I want to dive into my mother's family history and see if I can pinpoint their origin in the UK and France. New doc also mentioned albuterol for the breathing and swallowing issues, and that was shot down because it is a dangerous paralytic trigger. Steroids are potentially deadly with Familial HypoKPP, as are many other medications. It would make things worse instead of better.
I remained a lot more calm than I thought I would. I struggled not to curse and cry, but I managed not to. I have never acted like that in my life before recently (not even my ex-husband heard me say a cuss word - ever) but I am a freaking disaster on these anti-paralytic meds. They cause some pretty harsh chemical changes in the body, but I unfortunately have no choice but to stay on them if I want to survive and have any quality of life.
HKPP is a no-win situation, and everybody knows that. Angie with Mississippi MDA is wonderful, and she is recruiting Alabama MDA to help me obtain pulmonary/sleep testing as well as a power chair at some point. I have to contact Shae in Birmingham to follow up in a few weeks. In one week, I'll see my local primary physician to bring him up to date, then back to Jackson for Renal Clinic in June.
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.
As I mentioned in the previous couple of blog entries (yes, the "Let It Go" post wasn't just a random rant), things have been very stressful lately. My absence in not blogging as often as usual will eventually be explained. Until then, I am just trying to keep things going (but more importantly, keep me going...preferably with my sanity intact).
In the midst of all that's going on, I decided to dive head first into a NaNoWriMo event called Camp NaNoWriMo. It's not exactly like November's National Novel Writing Month - it's a lot more lenient. At Camp, you call the shots. Set your own word count goal, and meet that goal in 30 days or less, writing in any genre you choose (including non-fiction). At Camp, you are assigned to a "cabin" with a handful of writers who have similar goals. You and your cabin mates have your own "corkboard" where you can post notes to the group. It's kind of a neat way to interact without having to dig through endless forums.
It begins April 1st. I've set a goal of 15,000 words, an average of 500 words a day, and I am going to work on the novella I began last November. The Lost Children chronicles a family tragedy and the separation that results from it. It is inspired by something that happened in my own extended family a few generations ago. I learned of the story during my genealogy research, and I was moved so deeply, I knew I had to write a manuscript based around it. I intend to spark every emotion under the sun...The Lost Children will make you laugh, cry, cheer, and become absolutely, positively enraged. Both justice and injustice will abound. I have cried through the entire story so far, and I hope my readers love Cecily, Annette, Odessa, Benjamin, Joseph, and Tilly as much as I do.
I think Camp will be a temporary escape from life - at least for an hour or so each day. I figured it might do me some good.
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. Dr. F is hoping they can eventually be decreased again, but I don't see that happening. 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.
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 most of 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-non-sexual, non-partisan humanitarian, culture-embracing, gay ally, anti-racist, non-denominational Christian woman with crippling, life-threatening systemic disease who survives on government assistance. 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'll stay. Let the storm rage on.
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.
Such a hilarious child. So animated.
My boo boo is such a big girl now.
Love them so much.
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.
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.
I'll be working on new templates for my blogs this year. If you recall, it is one of my 2014 resolutions. I decided to start with Thoughts & Theories, and I look forward to catching up on content as well...I'm pretty far behind there.
I wrote about the outrage concerning Coca-Cola's Super Bowl commercial. As always, feel free to read it at your own risk.
I have a lot going on, but I'll be back soon with a proper update.
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 am a thinker, writer, painter, dreamer, and insomniac from the Hurricane Katrina-battered Mississippi Gulf Coast. I'm 30-something and happily divorced. I'm broke, chronically ill, and old before my time. I'm currently being refined and redefined by a serious decline in my health. I am blessed despite my circumstances. I try to be everyone's friend. I am honest, and made the decision years ago to put myself and my life out there for the world to read. So far, I don't regret it.
I have systemic disease including a rare form of Muscular Dystrophy called Periodic Paralysis. Feel free to contact me if you have any questions or if you or someone you know suffers from Periodic Paralysis or other systemic disease.