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

Sunday, July 15, 2018

My Digestive System is a Supervillain, and Other Rants

Today, I went to Mobile to stock up on non-perishable soups, drop off my recyclables, and attend my local board game group who I seem to only manage to see every few months.

Instead, I ended up camped out in the grocery store restroom doubled over with my stomach, and had to go home. No groceries, no recycling, and no time with the gaming group. I am done with this @#$%$#! disease, you guys. I'm dropping all gastro meds, at least temporarily. I am sick and tired of my day being ruined by my digestive system. I cannot exist like this. I'm lowering my calories again in hopes of decreasing my misery. It'll probably be Autumn now when I see my friends, and one of them will have already moved to the other side of the world. There's nothing I can do about any of this. I'm just angry and sad and needed to vent, that's all.

The quiet neighbor that I shared a wall with moved out. Her apartment is being renovated in a monstrously loud fashion, but it's not really bothering me that much. I'm only hoping the new neighbors will be decent and respectful. This place is like a box of chocolates - "you never know what you're gonna get" - yes, I just made a Forrest Gump joke about the real Bayou La Batre. This is my town. I can do that. :-P

Speaking of neighbors, George the resident rooster is already gone. I was afraid to ask what happened to him (this is a South Asian community, after all) but I finally did and was told that he decided to try to fight a resident in the building behind me, which resulted in a complaint. He ended up being given away. I can't say I'm surprised. He was a territorial little dude. As often as I went out to talk to him, I'm lucky he didn't attack me, lol. Farewell, George.

I live in one of the stormiest counties in the nation, so it's not a huge shocker that lightning zapped my CPAP machine a while back. Shocker...lightning...get it? I slay me. Anyway, I've decided not to replace it (as if I could afford to anyway). I wasn't sleeping any better, it was irritating my face and ears, and I almost always took it off in my sleep. It's time to call it a fail, and move on.

My phone is now being held together with duct tape, but other than its general lag and the fact that it doesn't allow a lot of apps (obsolete model), it seems to be working ok. If I happen to disappear from the internet, don't be alarmed. It only means the phone finally bit the dust. I'm hotspotting to do all of this ranting and raving, you know, and it's an unlimited family plan that I'm thankfully not responsible for. I am merely a grateful recipient of many.

If you do call, please let it ring long enough for the voice mail to come on. I don't know why people don't leave voice mails anymore. I tested it and voice mail does come on after 5 or 6 rings. Be patient, and leave a message if you want me to return your call. Texting is fine too, of course. I will hopefully be able to resolve the phone issue within the next year.

The car wouldn't start yesterday. Thankfully, my brother came to the rescue and jumped off my battery, which I am guessing will need to be replaced soon since it died for no reason. The car was also very low on radiator fluid, which I was thankfully able to resolve immediately. It looks like I'm going to have to keep a close eye on it like I did the Buick. It has a few problems, and I don't have a dime in which to deal with them. I'm extremely thankful to have a vehicle, at any rate.

I have doc appointments next week, but I'm having to reschedule them because I don't have any money or fuel to go. It'll be August or September before I can even think about it, or anything else. If anybody needs me, I'll be sitting here in my apartment drinking soup, reading books, and watching documentaries. I have $7.34 in the bank. In a week, it'll be pennies as usual.

I only share these details because, above all else that my readers have expressed, they've appreciated my transparency over the years. I am not a citizen of the GoFundMe universe, and don't want to be. It's not my nature. I am very matter-of-fact about my journey with systemic disease, however, and it is that realness that I feel sets me apart from the fluffy inspiration blogs out there. I'm fluffy in a fat and cuddly way, but not fluffy in a "if I could choose to be normal I'd say no thanks because my life rocks and I wouldn't change a thing" way. I read that very line in a medical blog, y'all, and I have no problem saying that she is lying through her big, pretty teeth. No one of sound mind wants their life to be bound by a debilitating disease. Sorry, not sorry.

In a nutshell, life is quite a mess. I've always survived with little money, and I've been worse off than this, but poverty will never not be stressful. The only silver lining is that no innocent soul is having to endure this with me. I know me, and I don't believe I could cope with putting a kid through such circumstances. I would have embraced the experience to the best of my ability had bearing children been God's plan, and I'll always live with at least some level of grief, but the brutally realistic side of me has to feel a sense of relief that it wasn't meant to be.

I don't really know what else to say.

Thursday, July 12, 2018

Ride For Rare Diseases (Periodic Paralysis Advocacy)

Cyclist Gabriel Low is riding his bike across the country to bring awareness of Primary Periodic Paralysis! He can be followed on Facebook and Instagram. There are quite a few news stories about him on those pages, if interested.

I know this condition affects him and his family, and I'm glad to see that he is thriving in spite of it. People like Gabriel are making a difference for those who are battling rare and under-diagnosed diseases such as Primary Periodic Paralysis. I really appreciate his advocacy!

(Cross-posted to the medical blog)

Friday, July 6, 2018

I'm back home, with a stream of consciousness

This frozen coffee tasted just like my MawMaw's (I sure miss her). How cute is my niece enjoying her ice cream? Lord, that kid is cute. She's the perfect age to carry on a real conversation. She's literal about everything, right down to correcting people when they say she's a "big girl". "I'm not a big girl," she insists, "I'm just a little girl. And I'm the baby." We discussed her current favorite TV show, Muppet Babies, and she said "I like all of the Muppet Babies. Actually, I like all of the boys." I said "Oh, you like all of the boys, huh?" She reanalyzed and said "Well, Gonzo is kind of rude. Hmm, yeah. Gonzo is just a little bit rude." Ha! I love her. She seems to be an extrovert, which makes her pretty entertaining.

I was sick with my stomach often, and rested on the couch a lot. Mr. Kitty, aka Figaro (they finally named the cat!), was perfectly happy with the fact that he had a snuggle buddy. He kept me company while the kids were playing and otherwise going about their daily routine.

I'm pretty sure he doesn't know he's a cat. He puts his arms around you to hug you, likes being held like a baby (which is what is happening here), and loves to cuddle. He's honestly the best cat in the world. I only see him a couple of times a year, but when he realized I was back to visit, he launched into my arms. Bless him. Figaro is an old man now so I'm not taking a minute for granted. He's a sweetheart.

Zoey and Sadie (and their parents, of course) took me to the Martin Luther King library to see my baby sister, who works there now. I signed up for a library card, so now I have access to not only the ebooks/audiobooks at my own county library in Alabama, but all of the ones at my family's library system in Louisiana also. Score! I'll talk about books again soon. I've almost reached my reading goal for the year.

Speaking of libraries (!!!) I made it to Slidell to visit the TARDIS Little Free Library that I supported on Kickstarter a couple of years ago. I donated a few bucks and a whoooole lot of books. I was happy to see the beautiful finished product in person, finally. Nice work, TARDIS of Slidell!

Of course, I could not leave Old Town Slidell without a chocolate malt from the Soda Shop! I had not had a malt in many many years. Despite omitting the cherry (I hate cherries), it was perfection!

I am back home now and will spend Friday resting my muscles. Saturday, I'll visit my nephew (who is thankfully local) for his second birthday. The remainder of the month is clear, so there will be plenty of naps, World Cup Soccer, Doctor Who marathons, minimalism (still sorting and giving away stuff!), and maybe a little more blogging. We'll see.

By the way, the medical blog is back up and running. It still needs work, but it'll do for now. Thanks for your patience and understanding while I brought it up to date.

Talk to you soon.

Monday, July 2, 2018

Families Belong Together

(the references on the small signs, if interested)

On June 30, while on a road trip to visit family, I stopped in Covington, Louisiana to attend a Families Belong Together rally, an event that was held all over the U.S. I made a giant sign and sat on my walker seat at the St. Tammany Justice Center, where approximately 200 people gathered. Live protests are rarely something I've done for various reasons, but I'm glad I was able to exercise my constitutional right to do so on Saturday. It did my heart a lot of good, but I know this doesn't resolve the situation by any means.

Children should not be locked in cages, separated from their parents, and lost by our heartless and incompetent government for any reason whatsoever. It is sickening and unacceptable. It is what the Nazis did during WWII, and I will not sit silently while I watch my democracy die in darkness. Racism, cultural oppression, child neglect, and cruel opposition of basic human rights are not patriotism. This is fascism, and I refuse to call it anything less.

I'm spending the week with my little brother and his family. I will resume health and other updates soon. Thanks always for being here.

Monday, June 25, 2018

Internal Medicine Clinic June 2018 (TMI warning)

I saw Dr. B on the 19th. The office failed to put me on the schedule in spite of giving me an appointment card, so I had to show that to be seen. I won't even get started on their issues. I'm grateful for whatever help I can get.

I had the usual blood work, and my potassium level was where it often is - 4.0. As has been the case for years, I remain in a weakened state in spite of normal potassium levels.

We mostly discussed my gastroparesis. I thankfully haven't been in the ER again since May, but still dealing with nausea as well as a lot of pain everywhere including my torso, lower abdomen, backside, bladder, and everything in between if you know what I mean. It all never stops hurting. My body is super irritated. He did check me for bladder infection, and it was negative.

I am also in tachycardia, and experiencing lightheadedness, shortness of breath, and a decline in equilibrium. I had one of these episodes upon entering my room, and they stopped what they were doing to recheck my blood pressure and heart rate. BP was perfect, as it usually is (Irbesartan is the real MVP), and heart rate was 124. Where my digestion is concerned, since ditching the high protein/fat diet, the majority of the paralysis appears to be in my colon at this point. I've learned that this is frequently referred to as Intestinal Motility Disorder. It is probably related to my Muscular Dystrophy, however, I question the possibility of Dysautonomia and POTS and it is something I hope to talk to someone about at some point. My heart rate goes up for no good reason. All I have to do is turn over in bed or get up out of a chair and my HR jumps. I've worn heart monitors several times that confirmed this, but I've never been diagnosed with POTS for some reason. POTS can cause Dysautonomia, and Dysautonomia can cause Gastroparesis. I know Periodic Paralysis patients who have Dysautonomia, so that's notable as well. Dr. B said he wanted to refer me to the local university hospital's gastroenterology department to discuss it further. I'm waiting on that referral now. He decided to give me samples of another medication, Trulance, to try to force my lower digestive tract to do its thing. And boy, is it. Far, far too much. I'm losing weight again in spite of eating, and as I've already mentioned, I'm in constant pain (I already deal with constant pain in my muscles, but this is a different kind of pain).

So now what? Dr. B said if the new medication is a problem, just switch back to the previous one, Linzess. That one, as I wrote in May, is also harsh on my digestive tract, but it's the lesser of the two evils, I think. I'll start back on that one tomorrow. Other than that, I have to take this one day at a time and wait for the referral.

Dr. B wants to see me again in a few weeks to check on me. His office frustrates me to no end with their frequent careless mistakes, but I could not ask for a better doctor. Imagine James Earl Jones with a funny, honest bedside manner. I've thanked him countless times for all the help he's been to me in spite of how difficult I am, and he always says he enjoys knowing me. Dr. B is dad goals, as the kids say these days. I think if more physicians treated their patients like friends, the overall morale of medical care in this country would change. Something to think about.

Wednesday, June 20, 2018

Immigration and Refugee Support

I'm going to share a page from Charity Navigator that offers a list of non-profit organizations who are focused on immigrants and refugees.


Anyone who follows me on Twitter knows how I feel about these issues, and they know how I feel about what's currently happening to children and families on the border. I'm not going to elaborate here, as you are plenty informed if you are choosing to pay attention. I am supposed to avoid stress for health reasons, but that has been an impossible dream, especially since this country was taken over by racist, sexist, fascist supervillains. If you support them, you're one of them, and the only hope lies in your eventual eradication. If what's happening to innocent children at this moment doesn't matter to you, your soul is dead. Nothing I say here will change the heart of a monster. 

My opinion is that you either believe in equal human rights, or you're a terrible human. And frankly, I'm tired of being surrounded by terrible humans. I will remain aware, and do what is within my control to stop them.

Tuesday, June 12, 2018

My Feelings Since Turning 40, and Other Confessions

My friend across the pond gifted me with another fun coffee mug. It's beautiful, and it gave me a good laugh. We met through our journals back when we were both married, and she's now the proud mom of eight (!!!!!!!!) lovely children. She has been a dear friend to me all of these years in spite of the distance between us (darn geography)! We both still participate in writing adventures, including NaNoWriMo. I think writers are unique in that any experience or conversation we encounter has the potential to turn into a fiction plot or dialogue if we think about it long and hard enough, so the mug is hilariously appropriate (or inappropriate, if you choose to see it that way). :-)

That said, don't panic! As open as I seem to be with my life, there are things that I still do not share, at least not publicly:

I may bring them up occasionally, but I don't usually talk about loved ones in detail. I do share a few photos every once in a while. Sometimes, I go back and remove them months later just because I don't want them floating in cyberspace forever or getting downloaded by weirdos (yes, I have an app that lets me see when photos here have been downloaded). Anyway, things have been fine on the blog lately where that is concerned, so no worries.

I haven't elaborated on my experience with neglect, religious abuse, or sexual battery even though I have briefly mentioned that it occurred. I have a right to talk about it if I want to, but I haven't wanted to. If I do go through with publishing a memoir someday, it won't be in my real name. I am a heavy blogger, but I am surprisingly bashful in person. My anxious introversion is strong.

Some things I would never (!) make public without permission are private conversations or relationships - yours or mine. Doing so would cross an invisible boundary of respect. Mind you, I haven't dated or otherwise been in any intimate relationships since this blog has existed, but if I ever am, you won't know it (without their direct consent, that is). Like I recently told my Facebook friends: as long as it doesn't impose on other peoples' privacy, I will consider talking about whatever they are interested in knowing, and probably a lot they couldn't care less about too. Spoiler alert: I'm not terribly interesting. I'm rather boring most of the time, and average in nearly all aspects. Feel free to be my pal anyway. :-)

I used to not share my full name or location, but I've given up on that since this is the internet and everything is on the internet. I recently decided that I might as well embrace my rich, intricate genealogy and my swampy, impoverished homestead by showing it to whoever cares.

I feel a bit changed since turning forty. It's only a number, but it is almost as if the wind has shifted, and it's pushing me in a different direction ever so slightly. It's barely noticeable, yet it's impossible to ignore. I don't know what life will bring. I do my best to take one day at a time. I'm forever analyzing my behavior, though, and over the last several months, I've noted the following:

I sleep like a starfish.

I used to curl up in a ball on the edge of the bed. Now, I wake up like this:
Oh look! EuropeanBedding.sg says I'm a good listener. LOL

Perhaps my chronic pain is to blame, but my sleeping position transformed from "fetal" to "stretched out and flailing all over the place". Sometimes my head is at the foot of the bed and my feet are at the head. Sometimes I lie sideways and my feet dangle off of the side. Sometimes I cross my legs (always a mistake) and I fight with my own arms (where are the stupid things supposed to go anyway?) It has been a strange and fascinating change. Mostly strange.

Good thing I'm single? I mean, I can only imagine the poor guy would be kung-fu'ed to death by morning.

I will give up salsa when it is pried from my cold, dead hands.

Despite how badly digestive paralysis has plagued me this year, I cannot give up salsa. I tried, y'all. I tried and I failed miserably. I don't care if I have to eat it with a spoon, serve it on a Saltine cracker, or drink it out of a teacup. Salsa is my lover. Somebody call Rick Astley.
Never gonna give you up.
Never gonna let you down.
Never gonna stop
Eating salsa.

Pants have become overrated. I've never been comfortable with my body, and I have always been awkwardly modest. Now I'm suddenly fed up with clothing. I'll sleep in my birthday suit or wash dishes without pants on. I don't even care anymore.

I don't like shopping. Give me libraries. Give me museums. Give me food trucks, family-friendly festivals, and football games. Give me thoughtful conversation at a coffee shop, a slow night at home listening to music, or a fantastic bowl of soup in a cozy restaurant.

We'll probably have a nice time.

But do not make me go shopping if you value my sanity.

Since I lost weight, I was needing to be fitted for a new bra, as my back and shoulders were in agony. I had never been professionally fitted before, and was nervous about my chest being touched because I have a tendency to panic (no matter who is touching, yes I need therapy, no I'm not ashamed). At any rate, the fitter handled my boobs and it wasn't a problem. Good news, I think.

If you have chronic pain and bras are a nightmare for you like they are for me, this is the one I recommend trying on. I think the model number is at the bottom of the label there. If you take the pic to Dillard's, I'm sure their certified fitter will know which one it is. It's sadly expensive. Best of luck, ladies.

Because of anxiety, I interrupt people. Occasionally, I even answer yes when I don't mean yes and no when I don't mean no. Sometimes, I am absolutely obnoxious because all I can think about is getting away from wherever I am. It is rarely about the other person. In fact, some people I've done this to have been very lovely, and I would give anything to fix me and start the conversation over with them. This is the number one thing I want to change about myself.

I reopened my Facebook to public only because someone said they were worried about me. My settings are still tight otherwise. I have hundreds of locked photo albums and read very few posts. Interactions occur when I either specifically check on someone or they comment on my statuses. Social media is a turbulent place, especially with all that's going on in the world at the moment. I'm doing what I have to do to keep it together. By it, I mean my head. Be well, Internet.

I finally resolved my lifelong shower curtain issue.

Some people don't like dark closets. Other people think about monsters under the bed. Some hate clowns. Others hate socks. Me? I have cringed over shower curtains since early childhood. Don't ask me why, because I don't know why, but I simply cannot stand them touching me or being close to me at all. Last week, I finally invested in a curved shower rod and reinstalled my late MawMaw's frilly curtain. It's a miracle that I didn't break my neck, but success! It is no longer close enough to harass me in the shower. Yay!

Ableism is frustrating, but unless you're being condescending or willfully obtuse, I'm going to be forgiving. I realize that many people don't understand ableism because it's not something they personally face or are being educated on. If your heart is in the right place, just know that I'm not mad at you. I'm only mad at the situation. Please understand how important that difference is.

I'm feeling a little lonely. That's not necessarily a bad thing. Painful, sure, but it's a part of the human condition. Surprise! I'm normal.

I'm not actively seeking a solution at this time. It's simply an observation. My life is complicated, and so are people. I've experienced a lot of social changes since my condition took a nosedive in 2011, and many more for valid political, moral, and religious reasons. A few have gotten married and are living new and busy lives. Some have moved away, or are planning to. A couple of friends have also died over the last year, including my one close friend in SoMo. All of the above has been challenging to process. I feel like I'm decent friend material, but my limitations don't make it easy. Managing my illnesses is more than a full-time job; it's 24/7/365. I don't get a break. Sometimes I get to go places and do things. Sometimes it's not possible. Often, I have to make choices that people don't understand because they don't live in my unpredictable body. Some people feel more comfortable making assumptions and passing judgment than effectively and respectfully communicating. Friendship is a two-way street, and a real friendship is like any other relationship. It takes work. We unfortunately live in a "fast food society" where empathy, selflessness, and genuine effort are fading.

I've always been an introvert, and I've never cared for dating. I am notoriously fair. I am the type of person that if I can't put in an adequate amount of work (not just in relationships, but anything at all), I'll opt out for their sake. I am not materialistic in the least, but my illness makes me high maintenance, and that's not my fault. Regardless, I don't know a single man who is kind and patient enough to take on my messy existence with enough effort and understanding to make it a safe and reasonable decision. As much as I'd like to operate as an abled person, the reality is that I never will. All I can do is the best I can in my less-functional state, but is that enough? I seriously doubt it. PTSD and anxiety are also factors that should not be disregarded. And I also, like everyone else, have strong opinions about important things. So yes, I have standards. Everyone should. After the life I've had, I cannot allow my health and safety to be compromised. I've been through enough. I would be honored to have coffee and conversation, but anything beyond platonic companionship would require therapy that I will never be able to afford.

So in summary, I repeat: my life is complicated, and so are people. Living with chronic illness in a world not designed for it is isolating. I do my best to be as independent as possible, and I am more than happy to live alone, but I don't always want to be alone. That's just how it's turned out.

In conclusion, I am OK. Sometimes I'm not OK, but it's OK to not be OK sometimes.

C'est la vie.

Monday, June 11, 2018

Help For Guatemala and Puerto Rico

Guatemala is currently suffering from an eruption of Volcán de Fuego. Charity Navigator suggests giving to the following organizations who are there providing emergency services:

International Relief Teams https://www.irteams.org/

Global Giving https://www.globalgiving.org/

Catholic Relief https://www.crs.org/

Children's Hunger Fund http://childrenshungerfund.org/

World Vision https://www.worldvision.org/

Save The Children is also on site. Thanks to musician Enrique Iglesias for the heads up on that.

The situation in Puerto Rico continues to be devastating and infuriating. Our government has committed an unforgivable act in insulting and turning its back on our fellow U.S. citizens. These organizations are on the ground trying to help. Please consider:

http://dayglowmusic.org/dayglow-relief/ - They are personally flying in supplies.

https://www.google.org/crisis/puertorico-relief/ - Google is currently matching donations, which are being split between the following:



If you can't give, you can always help by spreading the word. Thanks for thinking of others in their time of need.

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.