Don’t stop talking.

On an ice pack on the couch.

Some days, I feel like no one will ever understand my pain. It is so difficult to put into words the feeling of your entire body burning, as if you’re being torn apart limb by limb, every muscle screaming head to toe in desperation. I just want it to end most days. That’s the ugly truth. The internet, as terrible as it is sometimes, is a lifeline to people who exist this way. I’m thankful for the advocates out there who still find enough words to speak out when the rest of us are too tired to do so. I’m not entirely alone in this misery, even though it seems that way when I’m feeling my worst.

Your voice matters more than you can imagine, so please keep talking about it. Being heard and treated with empathy and kindness is the only hope some of us have left.

March update, and a little bit of February too.

Books read:

Complementary Approaches To Pain by NIH and NCCIH (quick summaries of alternative techniques such as acupuncture...not terribly useful in my opinion)

Women In Sports by Rachel Ignotofsky (good)

Women In Science by Rachel Ignotofsky (highly recommend)

The Gingerbread Girl by Stephen King (bad, lazy, not King quality, possibly ghost-written or either written on a day he was really bored)

Love Poems by Pablo Neruda (nice enough, a bit sexual at times, very Song of Solomon)

Books in Progress:

Stillllll working on Anam Cara. It's spiritually heavy, and it's going to take a while to get through. It's pretty, I will say that.

I started Learn French with Paul Noble. I seem to understand it well while I'm listening to it and speaking along, but I don't believe I would understand more than a few words if I visited France, or even the hometown of my 8x Great Grandfather in Quebec (that would be Montreal, yes, he was a founder and trustee). My brain is mush, but I'll continue studying to see if I can improve.

I have Beauty For Ashes by Joyce Myers in my possession, but I haven't made it through a chapter yet. I do intend to read it. If I can find it in eBook or audio form, I'm more likely to do this sooner (vision-impaired). For now, my local coffee shop let me borrow the hard copy.

Someone very kindly sent me three audiobooks on Amazon as a gift today. I will be reading all three as soon as possible, and will elaborate when I do.

Art Stuff:

Credit:
https://twitter.com/twitrartexhibit/status/1105397743634313217

The folks at Twitter Art Exhibit received my postcard (top middle) in Scotland! I was excited to see it among the others. The reception is in May, and I'll give more info when I know it.

I have other projects I want to work on, but I have been too weak and tired to do so. I'll update my art blog with work whenever I'm able to crank it out.

I'm done with the Bob Ross company. I haven't been able to teach since my disability, but I don't like seeing how they're handling business these days. It appears that instructors are being thrown under the bus, so to speak, and a lot of them are quite unhappy with the changes. Rightfully so. Instructors have invested thousands of dollars and an incredible amount of time into doing what they do, and they make the company a lot of money. Good luck to them all. I'm sad to be disabled, but I'm glad I'm not a part of this new drama. No thanks.

I still get questions and comments and get asked for favors sometimes. I no longer teach art, and I do not do commissions. I want people to stop asking or expecting this of me. I feel the need to throw that out there, because I'm not kidding. Find somebody else, preferably someone with consistent motor skills and the ability to follow a schedule. Seriously. I'm done.

Food:

I'm super frustrated with my multiple diets and their associated conditions. I will talk about it all in a separate post.

Misc:

I went to therapy and Internal Medicine. I'll have to make my visit with Dr. B a separate post. It was more eventful than expected. Coming up: the eye doctor who I have not seen in three years (he's great), and nephrology (he's great too).

My birthday is in 10 days, and I have zero plans. I do hope to raise $100 for Leukemia and Lymphoma Society, though. Feel free to check out my Facebook on how to help, if you're on there. You don't have to be my friend. It's public. :)

I'll ramble on about social media at a later date. I'm weary.

Systemic disease is a beast. It's not even 7 P.M. but I'm curled up in bed. That's become my normal again. Hopefully better days are ahead. Good night.

This has gotten old fast (a Gastroparesis update).

This has gotten old fast. #gastroparesis #emergencyroom #systemicdisease 

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 what I did in a photo-heavy post soon. For now, I must rest.

Renal/Endocrinology Clinic 4/9/2018

I'll try to keep this a lot shorter than what I wrote on Facebook.

But first, look at my absolutely adorable smiling Sylveon!

She guarded my car while I was at clinic. :-)

Whatever keeps the sanity intact, folks.

My labs look good. My kidney function is fantastic.

I'm having mild kidney stones again, so we briefly discussed that. I was informed by Dr. P that tomatoes contain a lot of oxalate, and that's bad news because I eat a ton of tomatoes. I honestly can't imagine giving up salsa, but I should consider limiting it. I also need to ditch tea once and for all if I expect to keep the stones at a minimum.

Both the phlebotomist and the nurse asked me to uncross my legs. Apparently, I am doing myself no favors regarding circulation and blood pressure by crossing my legs, and I do it constantly. I am going to have to somehow break the habit.

Dr. C was very, very kind. He thanked me for coming up there again to talk about my rare disease. He asked me several questions to determine if I was all right on a personal level, which I appreciated because I believe his concern was genuine.

He also asked a question I dread: Who brought you up here? Argh.

OK, I know it's risky, but I always try to drive myself. I cannot cope with burdening someone else with the task. It's a 7 hour round trip, sometimes 8, and that doesn't include the appointment, labs, lunch, or whatever. In other words, it's a long day. Since I ditched Airbnb, I'm no longer staying overnight in Jackson, so I drive straight there and straight home. It is hard. Not the driving itself, but simply sitting upright that long. It's painful, and always results in further muscle weakness that requires recovery time after returning home. I'm not putting anyone else on the roads in danger. I know my body. If I'm too weak (see: February), I reschedule. People may judge me for this decision, but I am hell-bent on being as independent as possible. I know it's just an innocent question, but answering it always unnerves me because I have more issues than Sports Illustrated.

Anyhoo...

He said he wants to bring awareness of Primary Periodic Paralysis (hooray!) and asked if I would come up there to be interviewed about HKPP in front of a team of doctors. I hesitated only because of my immense social anxiety, which I told him about, but I agreed that it was important. Sooooo he said he's going to call me soon to schedule this thing. I'm already scared, ha! But I know I need to help bring awareness of this horrendous systemic disease. I hope to God the nervous gibberish that will inevitably come out of my mouth does someone some good.

I have to say it's touching that my doctor looks beyond my boring test results. I don't take it for granted, and I wish I could teleport all of my HKPP friends to Jackson to see him. I went up there kind of sad, but left in a much better state. Empathy can make all the difference in a patient's life. I wish every doctor in the world understood that.

I'm so thankful mine does.

Not how I planned to spend my birthday week.

I spent the night under observation after a horrendous day with Gastroparesis. I had a contrast CT, blood work, and referrals back to Primary and Gastro physicians.

I'm home and pretty much camped out in the bathroom until this purging episode decides to resolve. They gave me some fluids to combat dehydration, and a shot of Bentyl to try to calm my stomach muscles, but this remains an ongoing situation for now. I'll get a three-day script for Zofran filled sometime today, which will hopefully make a difference.

Thinking forward, it looks like I was on the right track with a liquid/soft diet, but I made the mistake of trying solid food again, which caused a lot of problems. I may have to permanently halt the Muscular Dystrophy diet and switch solely to a Gastro diet to try to manage this, and just hope my HKPP doesn't get worse as a result. As I mentioned a few years ago, the usual prescribed medication, Reglan, is a major no-go due to triggering serious periodic paralysis complete with respiratory distress. So I'm sort of up a creek without a paddle, as I am with a lot of conditions that I live with.

My late MawMaw used to have a fun cup holder that said "THIS IS NOT THE LIFE I ORDERED".

I could not possibly concur more.

Gastroparesis Dieting to the Max

Things aren't going too well these days where food is concerned, so I've decided to try a liquid diet for a few days. #gastroparesis #secondary #systemicdisease #musculardystrophy

A post shared by KNB (@ugottafriend) on Mar 1, 2018 at 2:41pm PST

Things are bad at the moment.

I'm not going to go into major medical detail right now, but I have had a pretty bad episode, and I have been bedridden for several days. The pain was a 10 on the pain scale for a little while, as heard by my screaming and probably scaring the neighbors (hopefully they didn't hear me, but that's unlikely). I had my thumb on the button to call for an ambulance for a few hours, but I didn't go through with it.

I am, however, having to sedate myself to escape the extreme muscle pain I'm in. Most of my episodes are paralytic in nature, but sometimes my body surprises me with an episode of myotonia. This is what happened, which nearly resulted in passing out because of the location of the muscle; a vertical muscle running down the back of my head, neck, and shoulder blade. I haven't been able to turn my head since late night Friday. As of this morning, I can turn it about an inch. I have been successful in shuffling across the hall to the bathroom, and to pour water to take pills. Swallowing pills has been a battle...I'm amazed how challenging that is when you can't move your head at all. At any rate, I eventually get them down. Otherwise, I'm in a crumpled pile of agony on my bed, alternating between lying on an ice pack and a heating pad.

This episode is in addition to the bout of gastroparesis that was already making me sick. Gastroparesis is digestive paralysis, caused by a number of conditions. In my case, I assume, it's a result of muscular dystrophy (primary periodic paralysis, if you're new here). I ate a few pretzel chips yesterday. I'm drinking protein drinks today. That's all I've been able to do. My digestive system is a huge issue, and sometimes I think it's going to kill me way before MD does.

The medications I am currently on to deal with all of the above are making my body weaker (as I have complained about in previous posts...most medications aren't very safe for MD patients), but it's either take the meds right now and hope for the best, or find someone to put a bullet in my head. That's where I'm at. I'm being as cautious as I can, and it is a well-proven fact that I am safer at home than in a hospital subjected to protocols that don't acknowledge the risks of my rare disease.

In summary, some parts of my body are contracting too much, and some aren't contracting enough. If you know anything about that, you know that means absolute disaster. Thanks for thoughts or prayers or whatever it is that you do. I don't know when I'll be back, but I'll be back.

Diet Complications

Low Oxalate http://www.upmc.com/patients-visitors/education/nutrition/Pages/low-oxalate-diet.aspx

Low Fiber https://medlineplus.gov/ency/patientinstructions/000200.htm

High Protein http://www.todaysdietitian.com/pdf/webinars/ProteinContentofFoods.pdf

Fat https://www.healthline.com/nutrition/10-super-healthy-high-fat-foods#section2

Low Carb https://ketosizeme.com/wp-content/uploads/2016/09/Printable-List-of-the-Carbs-In-Foods.pdf

Low Sodium https://healthfinder.gov/HealthTopics/Category/health-conditions-and-diseases/heart-health/low-sodium-foods-shopping-list

In studying the different diets I'm supposed to be on to control my systemic diseases, several of which are contradictory, it looks like I'm going to be limited to lean low-sodium meat, lemons, avocados, and the very few low-oxalate, low-fiber vegetables in existence. I may have to compromise concerning a few things. For example, cauliflower is low oxalate, but has fiber (fiber is wrecking my digestive tract...I'll post a medical blog later), so I will have to reduce my portion to a cup or less per day. I can't even eat spinach or fruit because they are foods high in oxalate, and fruit has the added issue of fructose. Back when I made those sports drinks with red/green powder (I even posted a recipe), I started having kidney stones again, and had to cease the red/green powder and juice immediately. It is something I've confirmed...the stones are definitely made of oxalate. That has thrown a huge wrench in my already-challenging meal plans. The one thing I've found that is approved in every diet I listed is avocados. It would be in my best interest to adopt them as my new BFF.

I don't want to eat the same few things every day, so I'll have to see how creative I can get with the list I'm compiling. Food shouldn't be this complicated, but I'm going to do the best I can.

39.25 year old head for trade

For Trade: Head. Approximately 8 pounds, possibly fatter. Eyes don't see very well, but enough to get by. Mouth attached is anatomically small, but packs a punch when necessary. Carnivorous, but not cannibalistic. Sinus cavities are a bit wonky, and ears would have benefitted from tubes in their youth, but alas. The brain inside likes to repeat nightmares and scream in piercing agony for no known reason. It also fights sleep to an unruly and miserable extent. Kind of useless. In fact, I'll rescind my trade offer and give it to you for free. Just take it from me already.

No phone calls or solicitations, please.

[/ad]

Annnnnd breathe. But not outside, because pollen is evil.

I'm here to tell you that Hay Fever sucks, but I know most folks are already aware of that. I'm still having trouble with my ears, sinuses, and a nagging cough that I can't get rid of to save my life. Yes, I know. Welcome to Spring.

The weather is beautiful, though. I've been spending more time outside than usual, allergies be damned, because Spring and Autumn are the ideal time for my muscles, assuming no other triggers are upon me. It's challenging, because so many things trigger my HKPP episodes and muscle weakness, including histamines AND antihistamines, so there's no winning that one. But I can't spend every waking (or sleeping, for that matter) moment indoors. I guess I technically could, but I wouldn't want to. Nobody should have to live like that.

It's inevitable in the dead of summer. I always have to become a hermit, because my body simply cannot tolerate the sauna we deal with on the Gulf Coast. 100 degree heat index with 100% humidity is for athletes, not people with systemic disease. Tachycardia and dehydration come far too easily, as easily as walking to the mailbox or getting in the car. So it's difficult. But so is winter. Muscles are such temperamental things.

I'm rambling. At any rate, I'm doing my best to enjoy Spring in spite of my ailments. I have some photos to share soon of a couple of my rare outings. I'll try to get them uploaded tomorrow.

Happy Spring, Achoos and God Bless Yous to all.

Back to back clinics

On Monday, I returned to UMMC in Jackson for renal/endocrinology clinic. I am very very lucky to have doctors who listen, care, and want to learn more about this absurd disease. It is assumed that my current condition is my best case scenario, and they are relieved that things haven't gotten any worse over the last several months. We agreed that the Keveyis fiasco was a bummer. Since my HKPP is familial, they asked about my parents and whether or not I have children. I reminded them that I am the lone ranger in this thing, my parents are deceased, and I don't have kids. As always, they are interested in my story and are happy to know Facebook support groups exist. Documentation is a big concern for me since social security owns me and will occasionally review my case, but the doctors reassured me that they were keeping up with my peril in writing. They said my labs look stable, and the glass is half full in spite of my condition. I'll return in one year unless something changes.

On Wednesday, I returned to Internal Medicine at the low income clinic in my little town. Dr. B is fantastic as always, and is willing to test anything that is even mildly questionable. He knows how frustrated I am over my permanent muscle weakness and that even with my potassium level in normal range, I cannot function well enough to perform basic household tasks at times. We discussed my episodes, and how I handle them without assistance (answer: I take potassium and lie down...all I can do really is ride it out. If I am unable to take potassium, I find the nearest place to lie down and I hope for the best). He was concerned about the fact that I live alone like this, and suggested I check into obtaining a Life Alert necklace. I probably won't be able to afford it, but I'll look it up. He told me to make sure I have my cell phone within reach at all times.

He took a stat panel like renal clinic did, and the numbers matched this time. Everything looks pretty good, thanks to my overwhelming daily regimen, and it is an improvement compared to the last couple of years of labs. He sent some blood off for additional tests, and I'll receive the results on Friday. I'll write a short update at that time.

Renal clinic is across the state line, and because my insurance refuses to acknowledge that, I am forced to pay in full to be seen there. It's very difficult - nearly impossible - to afford that but I didn't find a clinic in my state that would take my case. That's how I ended up having to travel 4 hours to an out-of-state hospital. They practically brought me back from the dead, and want to continue seeing me at least once a year (I want/need to see them as well), so I am going to have to find a way to pay for it. I explained this to Dr. B and said he would do what he could to help concerning labs or whatever it is they want to monitor in me throughout the year in between my visits there. He also has a medication assistance program, and it is the only reason I have access to my vital medications (which would be around $1000 a month otherwise and my social security is far less than that per month). Low income clinics are so, so important; in fact, downright life-saving for people like me. That's why federal funding for these places must be protected. To cut off access to medical care is to literally kill people. I would be one of them, but only one of millions. God help us.

As long as nothing crazier than usual happens, and as long as my sent-off tests come back in good shape, I am done with clinics until June.

NOTHING.

The fact that there are people out there who think they have the answer to my ailments, and that I am simply choosing not to comply - as if systemic disease is curable with your magic potions and notions - but for some insane reason I would rather be seriously ill, in severe pain, and debilitated every day of my life - is maddening beyond words.

Go take several seats. You know nothing.

Internal Medicine and Social Drama

Today, I had my last Internal Medicine clinic until January. It was thankfully undramatic. This has been a long year of tests and symptoms and medication changes, but I'm feeling somewhat optimistic.

My gastric study looked ok, which is good news since the only emptying drug on the market, Reglan, triggers serious paralytic episodes. Feel free to dig through my HKPP blog for that drama. The ending diagnosis is Gastroparesis. I also have GERD, but that has been known for decades.

As for my potassium level, raising my dosage to a whopping 200 mEq max a day helped a great deal. My level rose an entire point to 4.7, which was our exact goal. Yay! Ideally, it would be best for me to be in the low 5s, but I'll take what I can get. Dr. B was super glad about that.

My phosphorus lab had to be sent off. I'll post the result here when I receive it. Dr. B said if it's normal, that puts me in a good place despite my apparent chronic kidney disease. The CKD will be monitored, but there's really nothing they can do for me. It's chronic, not acute, therefore there is no cure. It's something I've known for years.

I declined the social worker for a few reasons. I received many calls, which I missed, and eventually called them back. The lady said that I had accepted services on such-and-such date and that she was trying to set up an appointment to come to my house. I told her that not only did I not accept services yet, I had never even spoken to her before and didn't know who she was. She said it was in her computer that we had talked on that day and I said yes. I told her again that wasn't true. We went back and forth on this error, and she eventually said "sorry" and gave me my case manager's phone number. What case? Exactly.

Anyway, she explained that the case manager's job is to come to my place to talk about their services, ask questions (from a checklist that I hate...I'll address that another day), and check on me regularly. I told her that I would save the lady's number and call her if or when I was ready to discuss. I hung up and called my insurance to make sure they didn't receive a bill for services that I didn't accept or receive. They hadn't, thankfully, but I'm glad I checked. The fact that she said we spoke on that day and that I signed up when I definitely had not done so yet was concerning. I actually still have the missed call and voicemail saved in my phone as proof.

As I said, I told her I would call when I was ready to discuss their services. Within two days, I began receiving calls from the case manager asking if it was ok to come over to my place to ask some questions. I let it go to voicemail every time, and she gave up by the 3rd or 4th call. I concluded once again that people don't listen to me, and they don't respect my boundaries. Story of my life.

I'm not ok with someone knocking on my door unannounced on a weekly basis to ask me generic questions that don't apply to someone with a terminal illness, and that's what was going to happen. I had a social worker in 2014, and that's what she did. I eventually stopped answering the door. I would have done the same this time. I am fine with going somewhere and talking to someone - social worker, therapist, doctor - but I am not ok with them coming here, and especially popping in to check on me uninvited. As an introvert with anxiety, that derails me, and I have no problem admitting that. I spent the first 36 years of my life being denied boundaries. I'm not about to give them up now.

If I extend a specific invitation to you, or if I tell you that you are welcome here, then you definitely are. I don't want any of my friends or family to think otherwise or feel too intimidated to spend time with me. I wouldn't have set up gaming and art tables in my living room if it was a problem. For your consideration: I get very little sleep, and when I do sleep, it's at odd times. Nothing makes me want to melt down more than finally falling asleep, and being awakened by a knock on the door, a ringing phone, or a loud neighbor. One of my biggest issues every day is that I'm so exhausted, I can't seem to process things in a timely manner (brain fog). I draw a blank when dealing with someone. I really don't feel cut out for living, and I need a lot more sleep. I unravel quickly because I'm too tired and I want the world to stop waking me up, judging me, giving me a hard time about petty things like grammar (for the love of god, find something better to do), comparing my problems to theirs or others' (this is not a competition), making assumptions, or trying to fix me, and just be a friend. I'm the first one to say I'm not a pro at managing this turbulent way of life, but I'm trying. I appreciate those who have been patient and kind, and I thank you sincerely for understanding, or at least attempting to.

Aug 11 Test Results

I picked up my test results from the clinic today.

Phosphorus is still too low, potassium needs significant improvement, and kidney function has slipped again. In better news, after heavy supplementation (over 150,000 IU a week), my Vitamin D is finally in low-normal range for the first time in my adult life.

I will continue all scripts, my K+ dosage has been increased again and is now 200mEq a day, and I will have to keep searching for any possible way to bring phosphorus back into normal range.

I have a CT and Barium swallow test at the crack of dawn Wednesday.