Remember Your Doctors

Another chapter in my horror story has finally ended. After three years of probation, the Department of Education informed me that my college grants have been officially erased under total and permanent disability, and that they are no longer monitoring me as of a month ago. What this means is that I am incapable of completing my education or securing gainful employment due to being declared disabled as documented by my physician. In my last year of college, I was so bad off I couldn't sit up long enough to eat a full meal or shave my legs, much less make it through my online classes, and campus classes had almost literally killed me a few months prior. Social Security acknowledged my permanent disability shortly after that, back in 2012, but the DoE's TPD department also needed proof from a doctor. The Muscular Dystrophy clinic ignored my letter, but thankfully, my former Nephrologist Dr. Fulop came to the rescue.

Dr. Fulop is no longer my doctor (I was told he moved back to Hungary), but this is the second or third time that he has saved my ass. When I arrived in his office in a partially paralytic state years ago, it was pretty clear that I needed help, but he didn't know that relatives were already discussing what kind of nursing home to put me in. And until I wrote him in 2015, he probably didn't know I was at risk of losing a percentage of SS Disability income to the Dept of Ed either, which would have surely ruined me completely, as things are financially very difficult as it is. We had problems in the beginning, but eventually put our anxieties aside and communicated effectively. I have no doubt I'm still here today because he listened and cared about my perils. I wish I could talk to him and at least thank him for saving me from a terrible fate. I hope he knows that he is my friend, and I'm really grateful to him for turning my life around. It's a very emotional thing to recall, even now.

My current Nephrologist is super sweet, and he seems to know more about me than I know about him, so I don't know what's been said or documented. At any rate, I consider myself lucky to have him, and I hope to God he stays. I can say without hesitation that for those with chronic illnesses, it is absolutely crushing to lose a good doctor. Sometimes, they are among only a few consistent and compassionate listeners in our lives.

I still have some dark moments. Author F. Scott Fitzgerald wrote "The loneliest moment in someone's life is when they are watching their whole world fall apart, and all they can do is stare blankly." I live these words day in and day out. I had plans for my life like everybody else. I was going to rise above the trauma and pain, reach my educational, career, and non-profit goals, achieve the independence I so fiercely longed for, and be somebody. Instead, I wonder why on Earth I was even born. I'm tired. Sometimes, I just want this to be over. But then I remember how Dr. B is always happy to see me, picks on me like a dad, and tries to make sure I have all of my prescriptions. I'd be dead as a door nail without him. I remember Dr. C who wants to know more about my weirdness so he can spread the word and maybe patients in the future won't suffer as much. He asks that I not lose hope because somehow he knows that I have. I hardly know how to respond to his kindness. I want to have coffee with him or something, and I never want to have coffee with anybody. Drs. Witt and Hillman continue to see me at Muscular Dystrophy clinic once a year even though they know there isn't a thing they can do for me. Primary Periodic Paralysis being acknowledged as a form of Muscular Dystrophy was a life-saving turning point as they agreed to re-diagnose me with Periodic Paralysis and refer me to the renal clinic across the hall, where I met Dr. F. It took going through years of hell to get to this point, but I have hit the freaking jackpot of physicians.

So I remember them, and the respect they've shown me, and I think maybe the world isn't quite as terrible as it seems, and I take a deep breath, and I pray, and I continue to seek a life worth living.

Internal Medicine Aug 2018

I saw Dr. B at my local clinic for a follow-up. We discussed gastroparesis, diet, insomnia, sleep deprivation, tinnitus, chronic pain, potassium, and hormones.

My insomnia and sleep deprivation reached a dangerous level once again. I was disoriented, and it was no longer completely safe for me to go anywhere alone. I have felt on the verge of collapse. Tinnitus has also been a big issue. I told him this, and we went over my options. Unfortunately, with Periodic Paralysis, the risk is very high with any sleep aid, anxiety medication, antidepressant, or muscle relaxer. Most of these medications have already been attempted over the last 28 years (yes, even in childhood I was asking for help because of this) and made me too weak and sick to function. Dr. B suggested trying the lowest possible dose of Ativan, beginning with a fraction of a pill, to see if it does anything. In my desperation, I agreed.

I'm breaking a 0.5mg dose in half and taking it at night. I am extremely tired, I'm having more muscle weakness than usual, and the tinnitus is still at full screaming volume. That's the bad news. The good news is that I'm finally getting a few hours of real sleep, and my anxiety has lessened a little. That alone is enough to make me want to keep taking it. At some point, I may have to get off of it. The muscle weakness is a problem, but for now, it's manageable enough.

I requested a hormone panel, and the results were normal. I'm not in menopause, or even pre-menopause. I had to have surgery in 2010 to remove small tumors and nuke my psychotic uterus, and I haven't had a noticeable cycle since, but Dr. B explained that I'm still ovulating and experiencing hormone fluctuations. That explains a few things, as Estrogen is a pretty severe HKPP trigger.

My weight is steady now, and although I'm still having plenty of problems with gastroparesis and intestinal motility, the situation has definitely improved. I haven't been back in the ER and I'm tolerating a little more food again. I'm still trying to figure out what I can eat and what I can't. I can say without a doubt that fiber is out. It is my number one enemy. I occasionally try vegetables to see if I can digest them without a problem, but most of them are a no-go. I don't do well with beef, pork, or chicken. I am currently mostly pescetarian, and it's not a perfect diet, but it's going ok. I am still eating a lot of tomatoes, brothy soups, and soft foods that contain little to no fiber. I've been baking fish, boiling shrimp, and making ceviche. Noodles digest well, but they don't do my HKPP any favors, that's for sure. I still eat them sometimes, and handle the side effects as best as I can. I am supposed to meet a new gastroenterologist next week. I'm on the fence about going, but I probably will.

I'm saving up to drive to Jackson if and when my renal doctor wants to do that HKPP interview he talked about. I appreciate people who want to know about the condition and bring awareness. I spent so many years being disregarded that I am still very defensive about having this condition. I tuned into the live stream of day one of the Periodic Paralysis International Conference today and was instantly upset on behalf of those who stated that they weren't being taken seriously and were suffering from lack of treatment. I don't think I'll ever stop being angry that this happened to me and continues to happen to others. It's disgraceful. It's unacceptable.

I don't take my doctors for granted. I hope to God they know that.

I'm so damn tired, but I'm getting by, and life is maybe 10% more tolerable with the new medication. Right now, I'll take whatever I can get. I will keep you posted.


(Cross-posted to the medical blog.)

California Wildfire Disaster - How To Help

https://www.pbs.org/newshour/nation/how-to-help-the-victims-of-the-california-wildfires

The above information is the best I could find in regards to a list of organizations who are assisting people in this horrendous tragedy. If you want to help, please visit the link above and take your pick.

I can't think of a single thing to add. This is just so sad.

1200 Questions

I reopened my Ask account a little over a month ago, and just answered my 1200th question. The answers are not dated that I can tell, so just know that this happened over a period of five or so years.

It has been mostly fun. A little repetitious at times. Occasionally annoying. But the internet trolls seem to have moved on to bigger and better things these days. I've received some intriguing questions lately, some of which took some heavy duty pondering to address. I love those kind of questions.

Feel free to ask me anything. Just keep it appropriate for general audiences, please.

Medical update coming soon. If you're on my Twitter, Facebook, or even Instagram, you're already more informed than Blogger. But I'll get to it sometime over the next few days.

Stay cool, my dudes.

Another Round of Books, and Completing My Goal

Fiction

20,000 Leagues Under The Sea (heavily abridged) audio book
20,000 Leagues Under The Sea original manuscript (translated from French) by Jules Verne
Around The World In Eighty Days by Jules Verne
Journey to the Center of the Earth by Jules Verne

I enjoyed reading Jules Verne, and felt that his writing style made his outrageous ideas believable and endearing. I will count him as one of my favorite classic authors from now on. Who doesn't love Passepartout? What a great character. This is the best in early Science-Fiction.

Fantastic Beasts and Where To Find Them by J.K. Rowling

This was the Hogwarts textbook, not the screenplay. Therefore, it was pretty much only an encyclopedia of creatures (Thunderbird, Ozark Howler, Jersey Devil, Niffler, Hungarian Horntail, Peruvian Vipertooth, and many more), where they're from, and what they look like, with a few brief stories. The book is narrated by Hufflepuff Magizoologist Newt Scamander, whose life predates Harry Potter by more than half a century.

I did watch the movie, and wasn't as excited as I wanted to be. I found it on the boring side. I will say that I am interested in what happens between Jacob and Queenie, but that's about it. I don't intend to see the sequel in a theater, but I might watch it at a later date online.


Non-Fiction

The Courage to Create by Rollo May

This is a series of essays about creating, and he touches on everything from sculpture to sex. It was nothing particularly mind-blowing, but interesting enough to listen to twice. I will eventually look for the eBook version so I can read it at my own pace.

Marcus Off Duty by Marcus Samuelsson

Samuelsson is one of my favorite chefs. I always enjoy his stories, whether verbal or in written form.

How To Stay Sane by Philippa Perry

Decent advice, for the most part.

How To Change The World by John-Paul Flintoff

Not very helpful. It was mostly idealistic thoughts and repetitive quotes (be the change you wish to see, blah blah), but not a lot of practical ideas on how to make the world truly better as an individual.

This I Believe: Life Lessons by Dan Gediman, Mary Jo Gediman, and John Gregory

This is a series of essays by regular people (which is nice, because it's relatable) sharing stories about life and what they learned from it. This was originally a public radio broadcast.

Poetry

The Complete Works of Emily Dickinson

1775 poems, people! It took reading a few pages each day for five weeks, but I got through Dickinson's entire writing collection. Her nature, death, and eternity poetry far surpasses her life and love poetry. I may elaborate at a later date.


Abandoned for reasons

You Are A Badass by Jen Sincero

It didn't start off so bad, but then she dove into new age frequencies and law of attraction crap and I checked out immediately. I dislike that nonsense, in fact, you may Google my thoughts about the law of attraction by searching for my Amazon review of a book called The Secret. It's brutal, and I don't regret a word. I feel that Sincero was only trying to capitalize on the same concepts, and she probably succeeded because humans are desperate and gullible.

The Happiness Project by Gretchen Rubin

Wealthy woman wants her life to be even happier and more perfect than she thinks it already is. The book isn't very good, and the audio book is even worse due to her voice sounding like it's in a perpetual state of condescending sarcasm. This is the kind of thing the 1% writes from their comfortable world of privilege. My review on Goodreads was a lot nicer, but if you look at the other reviews, you'll see that others there share my disdain. In spite of it coming across as frequently patting herself on the back, it probably inspired someone, or maybe plenty of someones. Not me. I ended up skipping several non-applicable chapters (don't yell at your husband, your kids are perfect, get a job that pays well) and blank-stared at the rest (including "money can buy happiness, so go ahead and buy that thing you want"). Seriously. Get real.


Currently Reading

- Anam Cara by John O'Donohue
- The Tell-Tale Brain by V.S. Ramachandran
- The Stress Solution: Using Empathy and Cognitive Behavioral Therapy to Reduce Anxiety and Develop Resilience by Arthur P. Ciaramicoli

I will talk about those three later. Goodreads is telling me that I've completed my goal of 52 books in a year. Due to the fact that I abandoned some, I am reading a few more than I originally planned in order to achieve that number authentically.

See you soon.

Proud to be one of Annie's kids

I just received word that family friend and town legend Annie Rogers passed away at age 104. What a legacy. She was the most loving soul, and considered everyone "her kids". She's one of my first memories as a toddler going into her store, Grand Bay Drugs, with my brother and mother, sitting in the shopping cart holding onto my Anne Murray album cover for dear life because it was my security blanket. Mrs. Rogers absolutely adored Layton and me and always stopped what she was doing to give us a big hug and kiss. Here is a video of her from ten years ago. I stood at that register with her countless times talking and reminiscing. She will be greatly missed!




We know how much you loved all of us, Mrs. Annie, and we sure loved you.
Rest in peace, my lifelong friend.

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, 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 relieved that it wasn't meant to be.

I don't really know what else to say.

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)

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.

Talk to you soon.

Families Belong Together

https://simple.wikipedia.org/wiki/Fascism
http://www.dictionary.com/browse/fascism
(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.

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 he has a very high volume of patients due to being so fatherly. 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. 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.

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.

https://www.charitynavigator.org/index.cfm?bay=content.view&cpid=4665

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 lunatics. 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.

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.

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:

https://www.hispanicfederationunidos.org/

https://www.mercycorps.org/gallery/puerto-rico/rebuilding-puerto-rico-google


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

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.

http://www.feedingamerica.org/

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.

https://www.charitywater.org/

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

https://www.unidosus.org/

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.

https://www.bgca.org/

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

https://www.savethechildren.org/

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

https://www.covenanthouse.org/

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.

https://www.theglobalfund.org/en/

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

https://www.childrenshealthfund.org/

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

https://www.gavi.org/

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

https://www.charitynavigator.org/index.cfm?bay=content.view&cpid=6330

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.

XO

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.

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.

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.