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

Thursday, May 24, 2018

Noses On! It's Red Nose Day!

Today is Red Nose Day in the USA! Red Nose Day is a charity campaign started by Comic Relief, Inc in hopes of doing some good. I'm not very funny, and I don't have much money, but I can still do my part by wearing my red nose and spreading the word. That's the whole point behind ugottafriend.com, after all. In spite of my circumstances and limitations, I want to be a friend to the world in whatever way I can.

You can help! Red noses are a dollar at Walgreens and other participating locations. They are one size fits all. Trust me. If it fits my gargantuan French nose, it'll fit anybody's. :-P

Without further ado:

Red Nose Day is at http://www.rednoseday.org.

This year, they are supporting the following charities:

Feeding America is the nation's most prominent food bank distribution organization. They have a near-perfect rating on Charity Navigator.

Charity:Water is a fantastic organization based in New York who builds water wells all over the world to areas in great need. I have been following and promoting them for years.

Unidos is a human rights organization that focuses on Latino-Americans.

Boys and Girls Clubs of America give young people a safe place to go when they are not in school. They have programs all over the United States.

I think everyone has heard of Save The Children. They've been around for decades assisting children in need all over the world.

Covenant House tackles the hard issues of homelessness and human trafficking without discrimination of race, gender, religion, or sexual orientation.

The Global Fund is committed to saving people's lives around the world by providing access to treatment for three communicable diseases: Malaria, Tuberculosis, and AIDS.

The Children's Health Fund advocates for children's health care access whenever and wherever it is needed.

Gavi, The Vaccine Alliance is a global organization which collaborates with other organizations to bring life-saving vaccines to nations in peril.

You can find some of these charities rated on Charity Navigator here:

I think the good work that these organizations do speaks for itself.
Together, we can help make the world better. Let's do what we can.

Wednesday, May 23, 2018

Somebody dropped an anvil on my head, and other ramblings

I'm on the tail end (hopefully) of one of the worst headaches of my life. I have a lot of headaches, but this felt like something crash-landed on my head. My blood pressure rose, my entire upper body was screaming, and much despair was had. I'm still in a great deal of pain (level 9 if I have to use a pain scale), but currently upright, so I wanted to give some sort of an update.

This is George the resident rooster.
He's loud.
Pretty, but loud.
I thought he liked me, but he gave me the side-eye the other day
when I told him to stop eating the neighbor's flowers,
so I'm unsure. I'd like to think we're friends, but you'd have to ask him.
Did I mention he's a bit loud?

Most of my stretched canvases in the closet found a home.
May they encounter happy trees on their new journey.

This is what the diet is looking like these days.
Feel free to ignore the condiments. They're not getting used.
The noodles are Gastroparesis-approved,
but killing me in regards to Periodic Paralysis.
Therefore, I'm having to keep them at a minimum.
I'm still trying to eat solid food occasionally, with mixed results.
The best case scenario, it seems, is low-sodium, low-fiber soup.

This one is a pretty good example.
It's not the best-tasting stuff, but it's acceptable.

I can hardly express how happy I was with this dish.
Patagonian scallops, Gulf shrimp and crab, Icelandic cod,
Vidalia onion, and red and yellow peppers in a tomato broth.
It was beautiful. I will make it again someday, and add rice.

I'm still sick in bed till my misery subsides. I posted an absolutely awful video blog on Facebook (friends only) mirroring this post, but with a little more detail. Time to lie back down with my ice pack. Tomorrow, I'll try to look presentable enough to promote Red Nose Day. See you then.

Friday, May 18, 2018

Amateur Cosplay Photoshoot

Don't let my giant glowing face hurt your eyes, ha.

This is a mild example of Victorian Science-Fiction, aka Steampunk. My face and neck are metallic thanks to a cover of Jacquard Pearl-Ex Powder (Interference Gold and Super Bronze, if you care). I'm wearing a corset belt (It is extremely loose! Heaven knows I can't have anything actually pressing into my painful torso). I'm wearing Steampunk goggles on my soft bowler hat, a compass around my neck, and a long Roman numeral timepiece that opens like a locket (I love that thing). The skirt and blouse are thrift store finds from last year. The jacket is from my days as a paralegal in...drum roll please...2004! The shoes are an old pair of Dr. Scholl's, and are falling apart so badly that I have to glue them back together every time I wear them. This is what is known as closet cosplay. It's not the best costume by any means, but it works!

Sadly missing: gears attached to the side of my face. I couldn't find them in my storage room, so that's a pretty big part of the costume that I was unable to use. I also left my binoculars at home, and I did have my walking cane in the last two pics but the amateur photographer who shall not be named cropped it out. I intended for the cane to show, but I didn't complain.

I am very weak and exhausted, but I had a lot of fun dressing up for impromptu photos and I appreciate the free photo shoot! I am headed toward a dose of effervescent potassium, a hot shower, a bowl of soup, and my bed.

Bonsoir mes amis!

Tuesday, May 15, 2018

May so far (in pictures and videos)

I've never looked more nerdy in my entire life.
I'm so proud. :-)

I put on my Henchwoman gear and attended Free Comic Book Day for a whopping 23 minutes. I obtained 22 new comics, which will be sent to my nieces after I read them (we are all geeks in this family, even the babies). My balance was terrible to the point that I fell into the guy behind me and stepped on his foot. I apologized profusely, and all was well again. It's frustrating, though. I had a hard time getting around, so I picked up my comics and went back home to rest for several hours.

After a little while, I decided to go for another drive, and I found a fair! 

I love classic cars.

Basic white girl alert!
I got rained on, but it was so warm outside, I didn't care.
I was resting in the walker seat watching the fair rides.
I obviously don't like having to use one, but thank God for it.
I wouldn't be able to do more than half of what I do without it.
Side note: I see the scar on my lip is alive and well.
Additional side note: I need a tan. Desperately.

This dog was SO PRECIOUS.

Fun fact: riding a hot air balloon is on my bucket list.

I watched a couple of frisbee dog shows, a few fair rides that brought back memories of my elementary school days, some hot air balloons, and a super fun concert by a cosplaying 80s cover band. It was all free, and I was able to access nearly the entire location on my rolling walker.

Some of the following vids are very loud. Consider yourself warned.

They are so fun, you guys. I obnoxiously sang along with them during the whole show.

"Let's get ready to screeeeeeeam!" This brings back memories for sure. It was my favorite fair ride in elementary school. I couldn't ride anything anymore by the time I was in 7th grade due to chronic pain and HKPP.

Sorry for the vertical video. I'm bad at this. They didn't have this particular ride at the fair when I was a kid, but I enjoyed watching it and I would ride the absolute heck out of it if I could. :-)

All of these wonderful dogs are rescues. Visit them at K9Frisbee.com!

I unfortunately ended up in the emergency room again after this with a major bout of Gastroparesis. It was a pretty terrible end to an otherwise semi-functional day. I have no photos for this unless you want to see that stupid medical bracelet again. (Of course you don't.)

What I can share is that my meds were increased to the max dosage, and I am cautiously stating that I have safely achieved a stage 2 diet. It is a rocky road, still, and the medication is very harsh on my system. Very. There are days that I simply can't handle it and I have to back off of the meds. Regardless of how things are going, I am in constant pain, sometimes up to a 9 on the pain scale (I dislike the "pain scale" that is used at every medical facility I go to, but I digress). The diet is messing with my HKPP, so I am having some issues with episodes and generalized muscle weakness, but I'm dealing with it as best as I can. For now, the rapid weight loss has halted, which was the immediate goal. My next goal is to figure out some kind of balance between treatment for Gastroparesis and HKPP in order to function as well as possible. I don't know how I'll manage it, to be honest, but I'm too stubborn not to figure it out.

I wish my daily life wasn't so...harsh. I keep using that word, but it's the only one I can think of. I could use more gentleness in my life. That is for sure.

I don't want to end this post on a downer like systemic disease, so last, and definitely not least, my older brother took me to a soccer game!!!

I am so excited that Mobile has a minor league team now. The stadium is very handicapped accessible, so the walker and I got around it with no problems and I didn't even have to walk much. The designated parking places are darn near on the field they're so close, ha. I'm so glad it worked out for me to attend, and I can't wait to go again when I feel like it. Thanks to my bro for a night out.

I can't believe we're only halfway through this crazy month. As rough as things have been, I'm thankful to have had at least a few moments worth sharing on the blog.

Talk to you later, friends.

Sunday, May 13, 2018

Purpose, Realism, and the Rarest of Photographs

I don't remember the year. My best guess is 2004. If so, I had recovered from surgery earlier in the year, was working as a paralegal and saving up to petition the court to locate my ex so I could get a divorce. It's definitely Christmas, and we were having dinner with my wonderful grandmother who was suffering from Alzheimer's. I'm sure Mom's sister asked us to pose for the picture. She was always taking pictures and sending copies to everyone. It's the only photo taken with Mom in my adult life. I am happy to have something to hold onto that shows us together seemingly normal, at least, although there wasn't anything normal about life with her.

Mother's Day is never an easy day. I think of her with an equal measure of love and pain. I'll always care that she tried to be a parent for awhile, and I'll hopefully always remember any good time we had. I'll always hurt that she turned on me, and I'll always grieve because she gave up. There's nothing to be done now but attempt to process the experience, and move forward. I'm trying.

As for my own lack of motherhood, I have good days and bad days. I think anyone who follows me on social media or reads this blog on a regular basis is aware of that. Some days, I'm relieved I didn't have kids because of my inadequacies, which are many. Other days, I feel robbed and wish I could start life over again or rewind time and simply choose not to be born at all. But I would like to think I have a purpose in this world. I grew up talking about purpose as the anchor in my life; the one thing that kept me going. I can't help but question at times if my faith in believing I had a purpose was all in vain. I've discovered that trading faulty idealism for sobering realism comes at a price. I know it's the right thing to do, but that doesn't make it easy. In fact, it has been downright excruciating on many occasions. Sometimes, this all seems pretty senseless.

Thankfully, I'm aware that grief comes in waves, emotions are allowed, and depression is a liar. The best thing I can do for myself is acknowledge that there is nothing wrong with how I'm feeling about any of this. It's all a part of life's process. It's what I would tell anyone I encounter who is going through the same thing...IT IS OK. Take a deep breath, let it come, and let it go. Just don't drown.

I didn't plan this, but I'm reminded of a song by Of Monsters and Men:

Swallowed by a vicious vengeful sea
Darker days are raining over me
In the deepest depths I lost myself
I see myself through someone else

Grace is a gift that I love to give, but, as usual, I struggle to offer it to myself. Perhaps I can learn to. And concerning a purpose, maybe someone else can enlighten me. I'm open to suggestions.

I hope you're resting in peace, Mom. In spite of everything, I know your suffering was undeserved.

Thursday, May 10, 2018

You're not going to believe who I saw today

IT'S MIDORI!!!!!!!

I'm honestly in shock. I was in a random parking lot running an errand, looked over, and said "Oh my God it's my car!" The Penzey's bumper sticker is still on it and everything. It was either at the salon or the title loan shop (I was at neither of these places, for the record), but I saw no sign of the owner since I didn't go into either place. I wouldn't have bothered them about registration in person anyway. I did start to write a note to put in the vehicle, but decided against that too. So I snapped a shot of the car and it's new license plate, and went to the DMV. They were able to confirm that the car was finally registered out of my name 7 days ago. I AM SO RELIEVED.

Midori looked to be in pretty good shape. They had to have rebuilt or replaced the engine, and worked on a few other things, but it was nice to see her on the road again. What are the odds of running into the car in a county of 415,000 people? Had I not seen it, I would have never known what happened and might have carried the worry far longer than necessary.

Maybe the universe doesn't hate me after all.

Monday, May 7, 2018

This has gotten old fast (a Gastroparesis update).

I'm home and medicating with the phenergan that my local doctor prescribed. I guess I should have been taking it to begin with, but it messes with my HKPP so I avoid it unless I'm to the point of unbearable nausea. In this case, it happened too quickly to consider the meds. I was fine at 11pm, and sick by 12:45am. I vomited so much for so long, I lost my voice. As soon as I was able to balance on my legs again, I drove to the dreaded ER.

I complained about being cold so often, they pushed a bag of fluids into me and sent me out the door in 2.5 hours. I couldn't leave fast enough. No pillow, no blanket, just my shivering, purging body in a gown hooked to a sodium IV, which did my HKPP no favors. I'm convinced I'll never receive potassium at the ER again. I tell them I have a history of Hypokalemic Periodic Paralysis, but with serum potassium above 3.3, they won't even consider it. So frustrating. I'm safer at home.

So here I am. I'm doing a lot better today after sleeping most of yesterday. I drank some soup broth, ate water crackers, cleaned the kitchen, had a great mango smoothie, and now I'm back in bed uploading an audiobook (The Tell-Tale Brain, if you're curious).

I did have a decent 12 hour window of function before all of this madness occurred. I did not take it for granted. I'll share the shenanigans in a photo-heavy post soon. For now, I must rest.

Thursday, May 3, 2018

A quick Gastroparesis update

I've tried solid food (this is referred to as Stage 3) for the last several days with my increased medication, which was supposed to allow me to resume a reasonable diet. It somewhat worked for about a day and a half, then stopped working completely. I'm pretty much back to the drawing board as of this evening, in total misery trying to stay out of the ER.

I guess my goal at this point is to try to achieve a combination diet of Stage 1 and Stage 2. This involves liquids and very soft solids with no fiber whatsoever. All meat and vegetables are out until further notice, even low-fiber items like iceberg lettuce, which had me doubled over the other day.

I miss cooking (and eating, naturally), and after all of these years, I still miss Planet Fitness (I cried when I had to give up my membership in 2007 due to HKPP). I want to be able to eat healthy and exercise, but my body refuses to allow it and makes my life a living hell for trying. I'm disheartened and feeling defeated right now.

It's hard to feel hopeful, but I cannot and will not give up.