Thursday, April 28, 2016

Goodbye April: A Stream of Consciousness

April is a hard month, and I'm glad it's almost over.

To be honest, April, May, and June are all hard months.

My migraines are back with a vengeance in addition to my usual chronic muscle pain, and it's difficult to cope with life when in severe pain head to toe around the clock. Not to mention the sleep deprivation, which I believe is slowly consuming me. I'm just so tired.

Although currently in physical and mental turmoil, I still believe I'm doing the best I can.

Sometimes, I think a big hug would be helpful.

Then again, I'm in too much pain for that.

I've made a to-list for the next several weeks, which includes renovating some of my blogs and getting rid of others. I'll let you know what I've done after I've done it. I don't expect this blog to change much, if at all.

I actually have quite a few blogs. Some have been neglected, like my food blog. Maybe I'll bring it up to date and share the link. I'll think about it. I also have a lot of updating to do on the art blog, as well as the Etsy store. I may put a few things on eBay as well.

Camp NaNoWriMo is pretty much over. I exceeded 10K and added it to my previous totals. I write a lot of nonsense and notes in addition to the actual manuscript, but once I'm done, I do expect the finished product to be novella-sized. I've got to get more sleep so I can focus on this.

I have several art projects planned as well. But first, I am spring cleaning the apartment. My closets are beginning to look like closets again, so that's kind of exciting. I must really be getting old to feel good about the condition of my closets.

I still haven't had a Coca-Cola since Mardi Gras. I want one every day, especially with these migraines, but I have resisted so far. I do drink a lot of tea.

Renal clinic is coming up. I may have a driving buddy. Hopefully that'll work out. I haven't hung out with her in many years. The trip to and from Jackson will give us plenty of time to catch up. It's Cinco de Mayo, so hopefully I will feel like stopping somewhere along the way for some quick festivities.

I've got to figure out my diet. It's a bit rocky, and my weight is at a standstill. As long as I don't gain, I won't freak out. I do have 15 lbs or so to lose, however, and that sounds so easy, but it seems to be one of my biggest challenges. Being on a high protein, fat diet is the culprit, as well as my inability to properly exercise with Muscular Dystrophy, but I am still holding onto hope for a solution.

I've resigned from American Christianity until further notice. Sorry for not elaborating a while back when I said I was going to. It hasn't been easy to write about. Still theist, but I will not associate with jerks who are dead set on mistreating those who aren't like them. I have family and friends suffering because of this, and my own story is long and painful. I will tell it eventually.

I finally installed curtains in my apartment after a year and a half.

Midori the Gypsymobile is suffering a bit. I hope she hangs in there for years to come, but she's definitely slowing down. God bless my big 'ol Buick.

I've reached 1100 questions on Ask. I have a feeling I've blocked one or two of my askers, so things are pretty quiet these days. At any rate, if you want to ask questions, feel free. I still check it fairly regularly. The only things I don't talk about are sex and specific relationships such as an ex, relative, or friend. Getting that personal crosses the line.

Every time I say I'm going to take a break from Facebook, I end up not doing it because I'm a loser with no willpower. Sometimes, I post even more than I did before I said it. I should probably stop saying it now, you think? I really am going to take a break, though. Maybe.

If my health hadn't plummeted, I would be obtaining my first of two Masters this month. College nearly killed me (literally), but I miss it and I miss planning my future. I was proud of the goals I had laid out.

I wish I were well so badly. I don't understand people who say they embrace their disease or are somehow thankful for it. Screw that. Systemic disease has robbed my life. I live far too alone, in far too much pain, with far too many limitations to sugar-coat this. It's hell, and I don't think I should be judged or criticized for feeling that way. I've never been a ray of sunny sunshine wrapped in rainbows and butterflies, and I don't expect to morph into one in this lifetime. At least I'm real.

And I'm still very grateful for what I do have, in spite of it all.

Tuesday, April 26, 2016

Four Words

Don't listen to them
You are not possessed
These people are delusional
Your illness is legitimate
You need real answers
Church is a scam
They are manipulating you
This isn't your fault
You deserve much better

Thursday, April 21, 2016

"Dearly Beloved"

"...we are gathered here today to get through this thing called life."

Stunned. I got nothing.

Wednesday, April 20, 2016

Thursday, April 14, 2016

On Grief and Judgment

I almost forgot that I talked about Mom last year. I really don't have anything to add to it, other than to talk about grief. A club nobody wants to be a member of, grief is a deep and multifaceted process. I've seen on social media (a cesspool, I realize, but I digress) on several occasions the rituals and remembrances of people's loved ones being criticized, including my own losses. Someone I grew up with, who sent condolences after hearing about my mother's death, later made a snide remark in response to the above-linked post that nobody wanted to read my emotional crap. Why she felt it necessary to seek likes and comments at my expense all of a sudden is beyond me. She had been out partying that night and decided to check her news feed at some point. I told her I wouldn't forget what she said, suggested she stay offline while she's intoxicated, and we haven't spoken since. In response to me posting photos on another account of my family's gravesite, someone snarked "What kind of person takes pictures of their dead relatives' graves?" That would be me, and by the way, what kind of person sits in front of a computer screen and judges others' grief?

As you can see in the photo above, there were some smiles. There were also some tears, and some really hard, horrible times. When I announced her death two years ago, an acquaintance simply said "whatever", as if I was giving her too much credit by being devastated. The woman gave birth to me. Sometimes I wish she hadn't. Sometimes I still get angry and ask God why things happened the way they did. I ask why my parents had children when they so frequently rejected us. Some questions are already answered. Others may never be, and while I do my best to move forward, I will probably never stop asking.

Let me get to the point: grief involves not only a tangible loss, but also a loss of possibilities. People mourn the death of a loved one, because they loved them. They can also rightfully mourn for what could have been, should have been, and will never be. Hope is everything, and to helplessly watch it fade away forever is life-changing. There is no reconciliation. There is only emptiness. To deny someone's personal journey with profound loss, you must either lack empathy or live an incredibly charmed life. Not understanding something doesn't give you a license to be ugly about it. Respect is a basic human right.

Here's the thing: this road is mine and mine alone. Nobody else belongs there. There may be others who are impacted, but their grief process is individual to them and mine is individual to me. Nobody gets to tell anyone else how they should be reacting or feeling or coping with death. All opinions are invalid. In a nutshell: know your place.

I am here because she gave me life. I will always miss my mama.

Friday, April 8, 2016

Fulfilling Relationships (via Good News Network) and thoughts on boundaries

"Be open to new people and situations but trust your instincts. You never know where a new relationship might be found whether it’s a new business connection, a potential romance or a new friendship. When you open yourself up to new opportunities you give the right people the chance to meet you, but trust your instincts and verify that new people entering your life actually share your values."

"Set your own boundaries and don’t be apologetic. For your own health and sanity, it’s okay to say no or tell someone they’ve pushed you too far or asked for too much. If you know it is time to cut the cord—be bold, direct and firm. Unless you want them to hang around and play the victim, don’t fall into the trap."

This is a decent article on bringing the right people into your life and dealing with the wrong ones. I read a lot of articles like this. I think it's important to understand the psyche of relationships of all types, especially friendships in my case, to remain aware of what I and others are setting on the table.

A lot of people previously in my life had no concept of boundaries, and considered themselves attacked when I set them. They were so used to their self-made superiority and manipulative ways, they tried to make me look like the antagonist for standing up for myself. Some of them still do. They want so desperately to be the victim in the game they were playing, but little do they want to admit that it was never a two-player game. They were all by themselves in their heads, and they ran out of quarters before they even asked if I wanted to play along (answer for future reference: I don't). Oops, game over. You lose.

I'm thankful for what I've learned over the years. As hard and horrible as some of those lessons have been, I'm glad I'm finally starting to put my health, safety, and sanity first. I'm not sorry for that; I'm only sorry I didn't do so much sooner.

I have such wonderful friends, including several new friends that I've recently made, that I wouldn't trade for the world. They've taught me more than they realize, and I am better for knowing them. Without a doubt, more changes are ahead in my world...hopefully all of them good.

(Vagueblogging is therapeutic sometimes, don't you think?)


Monday, April 4, 2016

More birthday shenanigans, and what's going on this month

I received a coupon for a birthday haircut.
So I got a birthday haircut.
It takes an absurd amount of conditioner and smoothing oil
to not look like a frizzy, crazy, poofy-haired hag.
I've never liked short hair on me, but people tell me this isn't short.
Beauty is not my genre, friends.
I'm guess I'm low-maintenance.
I just want to sleep, OK?

My stepfather took me out to lunch for my
birthday (we finally managed to meet up after Easter).
I had my first rib-eye steak ever. Yes...EVER.

Then we went to Hobby Lobby.
He had never been there before. Yes...NEVER.
He was overwhelmed, and I was too weak to go around much of the store
but he insisted on buying me some art supplies.
I chose watercolor, because it's something I want to pursue.
He has always been my biggest fan where Art is concerned
and I appreciate his support more than I can express.

Oh, and the world map was only $5.65. I've always wanted one. :)

I had dinner with friends also, and they threw me a party.
The food was great. I was given a nice card and this lovely gift.
I have such thoughtful friends. They used to be in my Bob Ross
workshops (it's been five years since my last class...hard to believe).
I'm glad we're pals. My students are still the best, and I miss them.

I can't believe I haven't mentioned this on the blog at all.
My brain is so fried from sleep deprivation.
I participated in #TwitterArtExhibit!
I sent a colored pencil postcard to Trygve Lie Gallery
in New York City. It's on the wall with hundreds of other
cards for sale with 100% of the purchase benefitting a
great non-profit called Foster Pride.
It was a cool thing to be a part of!

These video blogs are so pathetic, y'all. Haha.
21 minutes of pointlessness. Enjoy if you dare.

Edit Note 7:45pm: The appointments mentioned the above vlog were canceled. I mentioned the reasons why on Twitter, if you want TMI. Next doc appointment will be renal clinic in May.

Friday, April 1, 2016

Back to Camp

Yep, I'm doing it again. NaNoWriMo in November was pretty miserable, and I said I was going to take a long break and not do NaNo again for a while, but here I am. Not a surprise, if you know me. It turns out four months was enough of a rest. I'm set up and ready to crank out 10K words. The great thing about Camp NaNoWriMo, as opposed to Official NaNoWriMo, is that you set your own word count goal. Official NaNo is 50K, but Camp can be anything you want. There is a lot less pressure during Camp. Truthfully, there's little pressure with either one, but Official NaNo feels more like a competition (even though it's technically not). At any rate, I prefer the nature of Camp NaNoWriMo.

I don't think a word of that made sense. Oh well, it's a fitting paragraph for the weird day I've had.

I'll post a few blogs this month, but I am hoping to focus mostly on the novella. I'll keep you in the loop, though. I hope Spring is treating everyone well. I have yet to see improvement in my condition, but I'm trying to remain optimistic.

Friday, March 25, 2016

Birthday Week Grub

I have plenty to say these days, but I'm not going to drag on and bore you to death. So here is a quick post with a few pics about one of my favorite things - food. LOL

I caught a tremendous sale at the grocery store and ended up with more pork than I usually eat in a year. I try not to consume it often, due to its relationship with sodium and how poorly the body digests it (this applies to everybody, not just me), but I made an exception this time.

Being a Taco Tuesday fanatic, I decided to make pulled pork carnitas.

Boy, are they good. I've got four small bags in the freezer now, and I will probably make my first attempt at tamales soon.

I still have a pound of sausage and a huge roast to utilize. I'm planning chicken and sausage gumbo and Hawaiian BBQ pulled pork soon. It will be shared with friends and/or relatives.

I wasn't sure if I could stay on my feet long enough, but I managed to get out of bed Wednesday morning and make myself a nice "birthday" breakfast.
This photo does not do this meal justice at all. It was pretty, and this pic isn't pretty. The lighting in my apartment is poor, and I am not a photographer. Oh well. If you're not sure what it is: loaded omelet, sautéed onions and beef summer sausage, honey balsamic mustard, and sweet cream grits (that's polenta to you non-Southern folks) topped with oven-roasted corn. Good grief, it was great. And it was way too much food, and I had to go back to bed. LOL

(I would have had to go back to bed regardless.)

I rested for a while, then made my way to a diner that I hadn't been to in a decade, in hopes of having the meal that I always used to order there.
And I did. And it tasted exactly the way it always did. I even got lucky and landed the same waitress who was there all of those years ago. She is the sweetest, and a flawless food server, and it was nice to see her again.

As you can imagine, I practically crawled home after all of that food. I couldn't possibly eat like that on a regular basis, but it was my birthday and I was spending it alone, so I decided to treat myself.

More festivities will happen this weekend, hopefully. I'm still weaker than I should be, and extremely tired, but I've made plans to visit my stepfather and a couple of friends. I'm sure we will eat and laugh and have a good time. I'll try not to fall asleep on them.

As I said on Facebook, I'm grateful to have survived another year, and I have every intention of not only making it to the big 4-0, but celebrating in a big way. If I am able to travel, I'd like to see Florida again. Maybe I'll have a book ready to publish by then also. I'd like to cross some items off of my bucket list. In the meantime, I'm going to focus on feeling as well as possible and keeping my sanity intact.

I'll post again soon with my plans for the Spring.

Thursday, March 17, 2016

St. Pat's Day

I'm not feeling very human lately, but I am grateful to be functional for a few hours a day. I'm not participating in any St. Patrick's festivities, but I managed to dress like I was celebrating. I have a beautiful block of Kerrygold Extra Sharp Irish Cheddar in the fridge, and it will become cheese soup eventually. Not able to do it today, but I'll live. I did have more than my share of potatoes for breakfast and lunch, so I guess that counts for something.

My stepdad is taking me to dinner for my birthday, and I hope and pray I'll be better company by then. Irish blessings to all who accept such things.

Kelli (who is a quarter Irish, thank you very much)

Wednesday, March 16, 2016

Triage, Tests, Muscular Dystrophy, CKD, Lent, Blah Blah Etc.

On March 9th, I choked pretty badly on some soup. It was excruciating, and I almost had to go to the emergency room. Although painful, I was able to breathe and swallow, so I decided to wait about 13 hours and go to my local triage instead, which is thankfully run by my own physician.

My lungs looked okay, but Dr. B was concerned about my esophagus. I was in terrible pain, nearly in tears, in my back and chest. Toradol, Phenergan, and Lidocaine didn't touch it. I was given a GI cocktail that didn't make me choke, scream, or get sick, so he decided that I didn't need hospitalization. He sent me home with a script for pain meds (it has been years since I've had a pain script and I don't usually get them filled, but I did it this time), and I was ordered to report back immediately if the pain gets worse or if I start coughing up blood. So far, I haven't had any additional trouble, but I'm still hurting a lot. The pain medication hasn't done much for me other than aggravate my muscular dystrophy, so I've already discontinued it. I can't win.

I received copies of my recent blood work. Magnesium is okay. Creatinine is still high, and it seems to be staying there. Not outrageous by any means, but not normal. I'm having panels done every three months to monitor things. That's really all we can do. Sodium is unusually borderline high, and I am pretty sure I'll have to back off of the Asian food. My sodium likes to sit pretty low due to all of the diuretics I'm on, but my sudden love of Madam Woo's chicken dumplings could be contributing to the change. This may explain why I am chronically weaker than usual, but it may not. Whatever the case, the decline is something I must figure out and get a handle on quickly.

I gave up soda for lent (yes, I do call it soda. I may be from Mississippi but I refuse to call everything Coke. It's irrational. Have a nice day. Oops, by the way, I really am talking about Coca-Cola...LOL). Lent is something I've never participated in before. So far so good, but I've been cranky ever since and my migraines are back with gusto. Not good news. I know I've done the right thing, as there is absolutely no reason why I should be drinking carbonated sodas, and in spite of the terrible headaches and the terrible mood, I plan to stay off of them altogether. 

Tea is a different story. It's entirely possible that a glass of tea will be pried out of my cold, dead hands someday. I'm not proud, but I'm also not sorry. :P

Next appointment involves womanly stuff - something I'm pretty terrible at. I'll try to do the world a favor and not blog about it.

Saturday, March 12, 2016

Just Tired.


Every day.

It's almost Spring, and my strength should improve at least a little.

Bring it on.

Tuesday, March 8, 2016

Miss Cranky Pants went to another convention

This past weekend, I received a pass to the 39th annual CoastCon in Biloxi, Mississippi. It's nearly identical to Biloxi's Geekonomicon, but has apparently been around decades longer. If CoastCon were one of a litter of kittens, it would be the runt. No offense. Runts are cute aren't they? Tiny con is tiny.


I was dealing with tremendous pain, sleep deprivation, and muscle weakness. My norm, yes, but worse than usual. I struggled greatly to get through this experience. I couldn't wear jeans or a standard bra due to my pain level (the heart monitor electrodes burned my skin in a couple of places), so I was basically in my pajamas. Not a big deal at an event like this, although I did try not to look like I just crawled out of bed. I'm not sure the effort was successful. I was hell on wheels.

I helped with the Whovian table as usual. They're great, and I always appreciate that they put up with me. Metro and the Krewe were also there, and I made sure to say hi. We were in a separate, smaller area from them for whatever reason. The folks on either side of the Who table were lovely, but I hated hated hated the location. Hated it. Occasional visitors aside, being surrounded by blank walls and poor lighting was depressing in already difficult circumstances.

Staff didn't quite have their act together. Volunteers are awesome people, but it's helpful when delegates have a system that's utilized and works consistently.

Some exhibitors' passes were $0.00, while others were charged $25.00. Neither price, for the record, is the amount we were told to expect. While it's nice that some didn't have to pay, it was pretty aggravating that other exhibit volunteers were charged, especially a higher price than we were told.

"Parking is free when you're in the right place at the right time otherwise you'll be forced to pay $5.00 a day may the odds be ever in your favor but this is not our fault so we'll continue to advertise that parking is free" is not an acceptable way to conduct business. Either it's free or it's not. Collaborate, decide, and make it happen consistently for every attendee. This makes me crazy. Crazy, I tell you.

Four decades, folks. I already know I'm not the first person to bring these issues up over the years, yet nothing has changed.

They could stand to pay attention to other cons in the region, some of which run quite smoothly. Time Fest in NOLA is a fine-oiled machine. If there are problems, I know nothing of them. And that's how it should be. The folks behind it know how to delegate and communicate with their volunteers. Everybody knows their place and does their job properly, at least as far as I'm aware. And it's less than five years old.

That's all I have to say about that.

In spite of what looks like a scathing review above, I didn't feel or act angry, only mildly frustrated under the surface. I wasn't the only one. I encountered a lot of people who were tired and had a case of the blahs in general. I made a joke at one point about the possibility of carbon monoxide poisoning. Do we need oxygen? Are the lights frying our brains? What in the world is wrong with us? We had some laughs, and I'm always grateful to see friends, so I'll try to forget the weird moments and think about the good.

A few pictures, then. :-)

This young lady's TARDIS costume was exquisite.
I had to ask her for a photo.

My adorable peeps.


Much love for @toadsagecosplay.
One of the best cosplayers on the coast.

Sweet K-9. His handler is pretty sweet too.

My usual TARDIS selfie. Sorry, it must be done.

I'm in no way willing to come to terms with this, but I'm getting to the point where I'm too sick and weak to handle these events, or the public or even daily life in general. I always get so mad when people are rude enough to suggest that I should give up or that I should stay home because I'm disabled, but in this moment I feel like I'm being forced to tell myself to do just that. It's disheartening.

Sleep deprivation, CKD, and HKPP are a disastrous combination. The fact that I'm mobile at all is a miracle. I don't take it for granted. But I'm going to have to seek further help. I'll discuss sleep and cognition with my docs, and I'm planning to get estimates for a power chair setup. I don't know how I will obtain one, but I know I need one and I have for a long time. I've talked to MDA about it in the past. Their resources are limited and their chairs are reserved mostly for ALS patients, understandably. Anyway, we'll talk again in May.

I've rambled on enough. Time for bed. My birthday is in two weeks. Hard to believe I've made it this far.

Tuesday, March 1, 2016

Super Tuesday

This morning.

This evening.

If you are on my Facebook or Twitter, you already know how I feel about the Super Tuesday results. I didn't hold back.

But in spite of the fact that I didn't get what I wanted, I am glad I voted. Last time I voted, my regret was so deep that I swore I would never vote again. I hated myself. This campaign has been ugly and ridiculous...what a circus...but it's something Americans must take seriously. I'm non-partisan, but I still found it important and necessary to vote for the candidate that I share the most views with in spite of the fact that I don't agree with every single idea (within reason). As usual, voters were forced to choose between a Republican and Democrat ballot today, and I know I made the right decision this time. I felt instant redemption and relief.

I just wish the results had gone in my favor, obviously.

Thursday, February 25, 2016

Internal Medicine 2/23/16

Internal medicine was this past Tuesday. I had the usual blood work, including Vitamin D, Magnesium, and the basic metabolic panel. I'll go down there and look at results tomorrow. Dr. B doesn't deal with my kidneys and HKPP, but tries to manage anything else that comes along, including some of the symptoms associated with these conditions. This includes my ridiculous digestive system and my heart, which loves to race and palpitate over nothing. It gets especially fussy when I try to do anything productive, like laundry or dishes or walking to the mailbox. And if I'm startled in any way, forget it. I have to lie down.

Conclusion: My heart is a jerk. I'm back on a monitor for a little while, to take a look at things. Gone are the days of the Holter. This monitor hangs out on my torso and communicates wirelessly with an app on a cell device.

The electrodes are standard, and they still suck. My skin hates electrodes, so I'll be bringing out the Vaseline or Neosporin or whatever to deal with that. Not a real complaint. It could be worse.

We also discussed several of my medications. I'm no longer on esomeprazole (NEXIUM) due to its utter failure. Not only did it not work, it greatly aggravated my Gastroparesis and caused significant magnesium absorption issues (as PPIs are known to do), which brought my digestion to a halt as well as triggered new bouts of myotonia (think charlie horses that are prolonged and so severe that they require medical attention...yeah). So this just hasn't been going well.

Once I stopped the med, my acid reflux returned with a vengeance, worse than ever, and I began choking again. This has been in the news quite a bit lately, and to my dismay, I am one of the statistics of which they speak. So it's out, as are the two drugs I took prior to this one, omeprazole (PRILOSEC) and pantoprazole (PROTONIX). I'm now eating calcium carbonate tablets and propping up on four pillows until something else can be figured out.

In spite of stopping the PPI, my digestive system has still not recovered, although it is finally seeing a little bit of improvement now that I've increased my magnesium supplementation. I hope the increase will be temporary, since it's making my stomach and back ache like there's no tomorrow. It's always something.

As for other meds, I'm still fighting with my insurance about covering them. It amazes me how an insurance establishment thinks they have the right to say that I don't need a they would have a CLUE. Sometimes I want to say, "Ok, I'll stop taking these pills and go back to work, and YOU can have systemic disease. Deal?" Stop trying to kill me, you dummies.

That's the nice version of what I've really been saying. You're welcome.

I'm nowhere close to getting housing in Mississippi where my renal and muscular dystrophy physicians are, so I am really grateful to Dr. B here at my local clinic in Alabama for being so helpful. He has a medication assistance program that works with my insurance, and this has allowed me to obtain many of the medications that have saved and continue to sustain my life (as well as sort of wreck it, but that's the way the ball bounces when your body attacks itself). This is a no-win situation, and everybody involved knows that, but I'd say most of us are doing all we can do to keep me around. I don't take it for granted.

Next appointments: OBGYN in April, MDA and Renal Clinics in May.

Cross-posted to the HKPP blog as usual.

Monday, February 22, 2016

Systemic Disease, Social Media, and a Serenity Prayer

Sorry it's been a little while. I've been pretty distracted lately, in some ways good, other ways not so good. Winter is very hard on me where my condition is concerned, and already being weak from my bad episode in December hasn't helped matters. I'm in a great deal of pain, but I'm doing my best to carry on as usual. For me, that means dozing off and on in between general maintenance of myself and my home. Cooking, cleaning, the usual boringness, but it's more difficult than usual (and the usual is that it's difficult to begin muscle weakness is significant, if you're new here). I did have a few outings with friends and family this month, some of which you've already read about, but I'll share more soon.

I'm hurting, but I count my blessings, because I know how much worse off I could be. I've been there, and I don't ever want to be there again. I'm making it through life, in time. Some days, the dishes don't get washed and I have to try again tomorrow. Some days, I stay in my pajamas because I simply don't have the energy to shower and change clothes. Don't worry, if you've hung out with me, I assure you I've showered. You're welcome. I've gotten no writing or art done this month, but I've done some research and made lists of things to write and paint and finish and do when I'm able. Whenever that will be.

Most of my work has been on my social media life. I cut down some of my social networks, even deleting a couple of them. I blocked loads of people. Some, I'm sure were fake accounts. Others had been abandoned and there was no reason to let them linger. A few were blocked for reasons, none of which I will get into here. I'm glad I did it, and that's all you need to know.

This meme is a pretty solid reflection of me these days. I'm very tired in general, mind you, but especially tired of BS. There are things I am forced to live with that I cannot change. Dealing with those things is hard enough, so the last thing I need is fabricated drama. I'm not supposed to be under any stress. I've had to choose to make my health and well-being priority #1, and my lifestyle - both the decisions I've made and elements that are beyond my control - are a reflection of that. I'm reminded of the "Serenity Prayer". I don't have a clue where it originated, but I've seen it all my life: 

I guess you can say I'm learning what I can change, and finding the courage to make those changes. It will be a work in progress till the day I die, I imagine. I've yet to accept the things I cannot change, and I am not confident that I ever will, but I do wish for the strength to handle those things appropriately, at the very least.

Speaking of God and prayer, I've been in quite a valley over the last few years. I haven't been able to find the right words to say, and I'm not sure I have the right words now, but my next blog will be about my spiritual journey - where it has been and where it's headed. I've changed a great deal since I started this blog, and that is something I would like to finally address. Talk to you then.

Saturday, February 13, 2016

Ocean Springs and Family Matters

My biological father has been gone for 11 years now. He died on February 11th, unexpectedly, and his death at such a young age (54) changed the family forever. My young half-siblings were still kids when he died, and each one of their lives took completely different directions as a result. They are all doing quite well now, thankfully, and I know he would be very proud. I can only imagine what he would say about Jo, Zoey, and Sadie, and speaking of them, I have news! Now that my youngest brother has made the announcement online, I can share that he is going to become a father in July. This took the family by surprise, but we love babies and I look forward to meeting my new niece or nephew later this year!

Freddy, my stepfather, accidentally called me Lynn today during lunch. He talked about how much he misses her. We discussed his upcoming retirement and his final wishes (which I hope won't be utilized for years to come), and talked about the house. My older brother has Dad's house. I told him I think I should have control over what happens to Mom's. It was hers before they met and it was Grandmother's before that. I lived there nearly 16 years. So if he doesn't sell the house himself, hopefully he will agree to list me as the executor when that horrible day comes (it better not be for a long, long time...please).

Anyway, we spent the morning in Ocean Springs, Mississippi at the farmer's market. It was a beautiful day, and the crowd was larger than expected, but it was nice. I'm not kidding when I say I wanted to buy everything there. Excellent faire, probably the best selection I've ever seen at a tiny local outdoor market like that, and no retail pyramid crap. I hate when people are trying to sell Pampered Chef and Rainbow and such at a farmer's market. Go have your parties and stop taking up limited space where farmers and laborers are fighting to make a living. Gosh I'm getting cranky in my old age, aren't I? Sorry if I offended someone. You'll live. ;)

The loot:

Huge garlic flatbread from Serious Bread Bakery, Gautier Gold Honey (in a bear!), Grumpy Man pepper jelly and salsa, and Sugar Fix pralines! Oh, and I forgot the pic, but I bought a parsley plant. Wish me luck in keeping it alive.

Freddy and I went to Mosaic Tapas Bar for lunch. Funny enough, what we ordered was nothing close to tapas. He had a half-pound burger that looked like what every perfect photo of a burger should look like. I ordered a Cuban sandwich, which ended up being twice the size I imagined. We were stuffed, took home a ton of leftovers, and I thanked them by dumping my sweet tea across the entire table, ha! OK, it was an accident. I do that more often than I'd like to admit.

I'm home and ready to crash into bed from exhaustion, but I'm very thankful that I had a good day. I'm glad Freddy did too. Things have been really tough for him, and he deserves to live the rest of his life in absolutely serenity after all he's been through over the years. We may not be blood-related, but he raised me from age 11 and calls me his daughter. I consider myself very lucky that he's my dad.

Side Note: I'm not compensated for a dang thing I mention on this blog. Freddy and I bought it all fair and square, and you should too. Support your local biz! :-)

Friday, February 12, 2016

Video blog

I was going to blog, but I have a migraine, so I am going to have to put it off for a little while. In the meantime, if you follow my health updates (and all the TMI), feel free to stroll over to Fighting HKPP for a vlog.

Talk to you soon, friends.

Sunday, January 31, 2016

Etsy Relaunch

My Etsy shop has reopened with limited stock.

Check it out here! :)

Thursday, January 28, 2016

January Medical Update

I saw my new eye doctor on the 26th. He was outstanding, and I intend to keep him forever. My eyes haven't worsened, thankfully. I'm still bat-blind without lenses of course, but I see pretty well with them (about 20/50). My eye muscles are weak, which could be contributing to not seeing 20/20, or I could have permanent damage from the scratched corneas I obtained about 14 years ago. There's really no way to know for sure, I guess. I have a script for Restasis for chronic dry eye, but I have to wait to find out if it's safe to use (steroids are a dangerous no-no with HKPP, but eye drops may not be an issue...we'll see). I picked out new purple glasses, and I will begin a contact lens trial after my current migraine resolves.

Next up is Internal Medicine clinic, which is in February. I'll have bloodwork to look at my BMP and kidney function again, but I don't anticipate any other drama (famous last words, knowing me). I pushed MDA and Renal clinics to May 3rd through 5th, but as it stands right now, I am neither physically nor financially able to go to Jackson. If this changes by May, I'll go. If not, I'll have to cancel until I see improvement in these areas. I don't have a choice.

Winter is very hard on me, and I look forward to warmer, less painful, more functional days. In spite of how difficult 2016 has been so far, I'm counting my blessings.

(cross posted on Fighting HKPP as usual)

Sunday, January 24, 2016

The rest of the month: a to-do list

LJ and G+ out (done)
Tumblr in (done)
Twitter lists renovated (done and private account deleted)
Stay off of Facebook till at least Monday (done)
Hide or delete some blogs (done)
Update others (done)
Move one to Tumblr (in progress - this will take several days)
Pin at least 10 photos a day on Pinterest (ongoing)
Decide what to do with My Fitness Pal (decided to stay)
Reopen Etsy shop (done)
Sort and scan important paperwork (moved to February because reasons)
Finish cleaning house for upcoming inspection (done)
Go to the doctor (done)

If I manage to accomplish all of that, I will reward myself with admission to the Chocolate Festival in February (a whopping 4 bucks).

Nothing to see here, just trying to hold myself accountable. I'm one of those crazy list people. In fact, lists are really the only reason I get anything accomplished.

Happy Sunday.

(List updated 1/31 6:28pm)

Friday, January 22, 2016

No Words

A Facebook friend unexpectedly passed away.

I've pretty much had all of 2016 I can take at the moment. I'm going to go to bed and pull the covers over my head.

Monday, January 18, 2016

Another great artist gone. Screw you, January.

A painful goodbye to one of the best singer/songwriters in American history.
RIP Glenn Frey. You were a favorite. Thank you for your incredible songs.

January Stream of Consciousness

It is supposedly 77 degrees in my apartment right now, and I'm still freezing thanks to Muscular Dystrophy.

I was supposed to update my HKPP blog weeks ago, but I still haven't because I don't want to relive that horrible episode I had in December.

I'm proud of myself for learning to cook in spite of my limitations, and I look forward to learning so much more.

I weighed myself yesterday, and I'm hoping to somehow lose 15 pounds by my birthday in late March. If not then, certainly by no later than my high school 20 year reunion.

It boggles my mind that I'm at that milestone, as I still remember when my mother was invited to HER high school 20 year reunion.

I've been under the weather all winter so far. Not a happy camper, but I'm trying not to completely lose my patience (TOO LATE! GRRRR, WINTER. RAWR).

I don't know how people with systemic disease who live north of here survive. I really don't.

I joined Trek Class (as in Star Trek) last year via Syracuse Mass Open Online, but I'm just now getting started on the course. I marathoned the original series until I absolutely couldn't stand another minute. It was awful. Thankfully, I've moved on to more recent serials. I grew up on The Next Generation, and beyond, and they are a breath of fresh air in comparison to the offensively sexist and misogynistic original. Many fantastic characters, and much nostalgia from my middle and high school years. Thank God for Patrick Stewart. I love that man.

(I admit I bought a Tribble, though, at Geekonomicon. It even squeaks. It's adorable.)

Apartment inspection is coming up already (every two to three months), so I'm slowly trying to tidy up the place. It's never a complete wreck, but I would prefer it to be as presentable as possible. I made a huge dent in the laundry (not having a W/D in my place is such a pain) and cleaned the fridge yesterday. Today, I'll put away all of the linens and dishes and start sorting through paperwork that's currently scattered about. At some point during the week, I'll sweep and mop the floors. Having HKPP means having to carefully pace myself, lest I have another episode like the one I had in December (doing the same thing...overactivity around the apartment). My situation is highly frustrating and unpredictable, but all I can do is take precaution and hope for the best.

I have several clinics coming up that I am not ready for, as I am not in good enough shape to make the road trip. I guess I'll have to reschedule them to sometime in the Spring, as I anticipate being stronger when it's warmer. Sure hope so, anyway. Come to think of it, I don't even have the funds so I would have had to reschedule regardless. I've got to figure this out...

I'm making an effort to divide my time online a little more evenly, which means taking breaks from Facebook to focus more on other sites. I have almost 4000 followers on Pinterest and I'm rarely there anymore. I need to change that. I also want to make sure I stay up to date on my blogs, and catch up on Instagram, Twitter, My Fitness Pal, and other sites. I'm still on Ask, if anyone cares. I've given myself a deadline of the 25th to reopen my Etsy shop, so the pressure is on there. (P.S. I hate deadlines.)

I finally chose a pen name for writings that I wish to remain anonymous, and I created an email address as well as a Tumblr with that name. It is absolutely nothing like my real name, and came to me out of nowhere. I'm learning how to use Tumblr, and I will eventually share the link...but not yet. I need to keep things private for now.

This turned into more than a stream of consciousness, I think, but whatever.

It's 1:35 in the morning. Time for Zs.

Saturday, January 16, 2016

Heartbreaking Week

Man, 2016, what on Earth are you doing to us? David Bowie, Brian Bedford, and my (and so many others') beloved Alan Rickman gone in the same week. The world of entertainment is crushed and countless hearts are grieving, as hearts do and should. We're designed to process the loss of those who made an impact on the world. Even if we never met the person, that fact is irrelevant (I'm talking to you, cynics...get over yourselves), and it's more than ok to cry and feel sad that they're gone. It hurts when someone's talent touches your life and that someone is taken away. The pain is real.

I guess it helps a little to know we're not feeling this way alone. We can at least take solace in that.

Sunday, January 10, 2016

Sadie turns one!

Aunt Kelli's sweet pea turned a year old on the 6th!
I was too weak to drive, but I thankfully carpooled
to Louisiana to attend her birthday party on the 9th.
I don't have permission to blog others' pics (I haven't asked),
but I took these few myself, so thought I'd share.

She's such a sweet baby, and I'm so happy she's with us.

Friday, January 8, 2016

Diet Talk

Time to get back on track after holiday eating!

My diet is supposed to be high protein low carb moderate fat, most similar to the MIND (Mediterranean-DASH) diet. I'm forced to modify it to eliminate wine (alcohol = paralysis), and I can't eat grains (of any kind) three times a day without a problem. I try to limit grains to two servings or less a day. I also have to be cautious of fructose, but I can usually get away with blueberries or strawberries if no sugar is added. Most other fruits are off limits (that does not include tomatoes or avocados, which I rebelliously count as vegetables). I eat a lot of beans and peas, occasional greens (not daily, because kidney stones), and I have not been able to give up cheese. I don't know if I ever will, to be honest, but I have reduced it. I use olive oil or grapeseed oil when I cook. My goal is usually chicken 3 days a week, seafood one day a week, beef one day a week, and a meatless day, with the 7th day being a cheat day to eat whatever I want. I limit pork to a couple of times a month now. I haven't perfected this by any means, but I've been working on it for a while.

One of my goals for the new year is to not bring another ounce of pasta or another Coca-Cola into the house. I still need to work on my candy intake. I shouldn't be eating it at all, needless to say. I'm sitting here shaming myself about it as I type, because I have no excuse. I'm a work in progress.

This diet is appropriate for most people with neuromuscular disease (again, careful with alcohol and grains, and talk to your doctor), but it's not the best diet for chronic kidney disease. Unfortunately, I have to choose between saving one or the other. I choose the muscles for obvious reasons (I'd like to be able to move, please and thanks).

Thursday, December 31, 2015

2015 Goal Review, and Looking Ahead to 2016

The end of year already...crazy. If you've been reading more than 12 months, you know the drill. It took me a while to post my goals for 2015, but I'm feeling somewhat optimistic. Let's see how I did:

2015 Goals

1. Produce artwork for charity

That last one sold for $400. It was a mind-blowing moment.

2. Put a huge dent in my manuscript(s)

I made a lot of progress on my novel, which was the goal.
I have a pretty long way to go still, but I intend to finish the 1st draft in 2016.

3. Cook one dish out of every cookbook I own

This was my biggest fail, I think. I did utilize some of the cookbooks, but I didn't make something from every one of them. There's really no excuse, as I cooked like a maniac this year. I could say that it wasn't feasible financially, but it was mostly a matter of poor planning. So boohiss on me. It's going on my 2016 list, and it will happen.

4. Attend at least two conventions

5. Renovate my website

Pretty much done, although all I did was revert back to basic Blogger templates. I'm happy with my decision for now. People have asked why I haven't moved to Wordpress yet, but I'm fairly partial to Google products. I have to say my reader base grew by leaps and bounds when I moved from Geocities (yes, Yahoo Geocities, kids!) to Livejournal (which is dead as a doornail), and now Google Blogger as of seven years now. I've had over 150,000 hits on my blogs since I installed the counter in late 2009. It was a good move, and I'm not fixing what isn't broken.

As always, thanks for being here. I appreciate my readers.

6. Read a classic novel

Not quite long enough to be considered a novel, but The Little Prince by Antoine de Saint-Exupery is a story that I had never read before, believe it or not. I had heard so much about it, and when I found the book at a thrift store, I happily grabbed it. It is very touching, and forces you to think about the world and its varying perspectives. As others have claimed, I did shed a tear at the end.

7. Goal weight: 155 lbs

Grrrr. Okay, I have to give myself some credit. I did lose some weight, which is a heck of a lot better than gaining. In fact, I lost right at 10 pounds. It's not goal weight, but a step in the right direction. This will stay on the list until I achieve it and learn to maintain it.

Lo, and behold...I'm ready this year! Drum roll please - the new list!

2016 Goals

*Cook one dish out of every cookbook I own.
*Do not bring Coca-Cola into the house! Pasta either!
*Complete all art projects currently in progress.
*Be less wasteful and more productive with my time.
*For the love of God...achieve goal weight already.

A little lagniappe for you:

Favorite book of 2015: The Little Prince by Antoine de Saint-Exupery
Favorite blog of 2015: Brain Pickings (by a MILE)
Favorite album of 2015: Beneath the Skin by Of Monsters and Men
Favorite show of 2015: Doctor Who (of course)
Favorite moment of 2015: Meeting my Sweet Pea - Sadie Nicole!

This was a weird year. Unique. A bit rocky. Definitely a roller coaster. I moved into public housing for the first time, and while I could not be happier to finally live alone (hallelujah!!!!!!), the finality of my no-win circumstances threw me into a pit of loneliness and depression that I was not expecting. I've had some pretty difficult moments, honestly. If you've followed closely, you know I also had a hard time blogging this year, although I did eventually catch up. I just couldn't seem to spit out the words I wanted to say. Not sure I can now, even, but I'm trying. I hate to report that my verbal communication hasn't been any better. Completing sentences is more challenging than usual these days, and it is very frustrating. I know HKPP and CKD are the culprits behind this, but also severe sleep deprivation. I started on pressurized oxygen this year, and it helps me to breathe, but not to sleep as hoped. I pray for a solution, lest I drop dead in my 30s from lack of rest. Sometimes, I think it's really going to happen. But here I am, still kicking. I guess there are advantages to being stubborn.

I've lost and/or said goodbye to a few friends this year, but gained some new ones. I'm so glad to know them, and I'm thankful that they accept me for who I am. They've taught me a lot already, and I hope we're friends for life. Of course, the greatest addition to my life this year is my Sadie. Sorry adults, babies win. :) And I love that child with my entire heart and soul, as I do her sister Zoey and cousin Jo. I look forward to seeing these children grow up, God willing. I think about their future sometimes, and I don't see myself there, but I have every intention of defying that vision. Systemic disease be damned, I'm so freaking tired and have little to live for, but those babies are worth the battle.

In spite of the struggle, I look forward to days ahead. 2016, let's do this.