If you saw my Birthday Grub blog, I don't blame you if you were slightly (or very) horrified. That was a lot of food, but that's not the norm.
I have a difficult time eating like a regular person, at least not without big consequences. MD, CKD, GERD, and Gastroparesis do not make my relationship with food easy. I dare say it's an unconquerable battle. There's the fact that I have to avoid carbs, yet eat them to prevent Hypoglycemia. There's the sodium that I have to limit greatly without becoming Hyponatremic on three diuretics. There's the issue of wanting to eat more vegetables, but they contribute to kidney stones (of which I've had at least 40 in my lifetime, including surgery). I also have Dysguesia, which makes vegetables taste terrible to begin with, but that's another story. There are also the nightshade vegetables, which contain much needed Potassium, but by golly they also contain an ingredient that inhibits neuromuscular transmission. Epic fail. Fruit contains fructose, which triggers HKPP just as badly as glucose does, and artificial sweeteners are even worse than that - they've nearly put me in the hospital with serious paralysis. Thanks for that no-win situation, universe. Caffeine both helps and hurts, depending on what organ we're talking about. My Magnesium fluctuates just as badly as Potassium does, resulting in a wide variety of ugly symptoms that qualify as TMI (I could write a thousand words on Magnesium alone). My Phosphorus and Vitamin D are chronically low, with no resolution via diet nor supplementation - I've confirmed that nothing works, and nobody knows why. My Muscular Dystrophy diet is high protein and fat, and I've gained nearly 30 pounds as a result. I'm now borderline obese, and doctors are bringing it up. Some days, I'm too sick to eat anything substantial, so I drink protein drinks. My kidney disease and heart disease calls for - guess what - low protein and fat! That's the exact opposite of my MD diet - lucky me! I was referred to a Dietician concerning low electrolytes, who gave me quite possibly the worst advice a Dietician could ever give anybody - eat more chocolate and processed meats, and drink Coke. That was a WTF moment if I've ever had one, and a fast track to HKPP. My doctors keep telling me to eat things that I cannot safely eat, and take drugs that I cannot safely take, because they are dumbfounded by the situation and can't keep up with all of my triggers and side effects (not a real complaint, because I don't know anybody who could remember this much insanity unless they were living the life themselves). Not knowing or understanding isn't the issue, by the way. It's pretending to know and understand, or being condescending and criticizing in spite of the lack of knowledge, that is the problem. Doctors across the globe need to learn to say "I don't know, but I'll listen and try to help." I digress.
Let me get back on track. Food! It must be so nice to be able to eat and drink whatever you want without acute, life-altering side effects. If there is a heaven (I continue to believe there is, personally), let's just say I'll enjoy feasting. Because what I'm dealing with on Earth is a whole lot of BS.
It could always be worse. And I'm thankful it isn't. I'm human. I get frustrated, especially when every single day is difficult, and there is no reprieve. I don't want my daily life to be consumed by what I put into my body, nor the atmosphere that I surround myself with, but I have no choice but to obsess over it if I intend to survive and have any quality of life. I'll elaborate on the atmosphere part in another blog (same bat time...same bat channel).
At least I haven't lost my stupid sense of humor.
I'll leave you with pictures of many of the foods I eat on a regular basis. Protein galore. Hopefully this will be some kind of redemption from the gluttonous birthday bash I subjected you all to a few months ago. Enjoy.
Yellow Split Pea Soup with
extra crispy bacon
Turkey Vegetable Soup
I make so much soup.
Lots of Taco Tuesday happening,
albeit, without nightshade veggies.
Occasionally, I honor my grandmother.
It's a comfort food. I miss her.
The most incredible veggie frittata ever.
(Prior to nightshade elimination.)
Veggie Beef Soup
I'm making this again in a few days.
(Also prior to eliminating nightshades.
I don't buy flour tortillas anymore either.
P.S. - This is subject to change. LOL)
The beginnings of hummus.
Citric Acid is essential if you have kidney stones.
Kale and Collards
So bitter, but I'm trying.
A simple Hawaiian pulled pork roast
This fed six people, with leftovers.
New obsession: Turkey Tenderloin
As seen here.
No caption necessary.
I just discovered avocado smoothies
next door at the donut shop of all places.
It was great. Super high protein.
If you don't have access to this
Alabama goat cheese, I am so sorry.
It'll knock your socks off. Swoon.
Mediterranean Lentil Soup
I make this regularly.
I still have symptoms, even though I constantly analyze whether or not I should eat something. The thing is, I never know when even some "good" meals are going to affect me. It could be a matter of a pinch too much salt, or the carb load was too high that day, or eating slightly too much in one sitting, or not eating enough, or it may contain tryptophan, or I've had too much fiber - the list of possibilities goes on and on. As usual, I can only do the best I can.
One thing is for sure: being a foodie with systemic disease is like being in an intimate relationship - it's complicated.
Please cease and desist this terrible advice to HKPP patients. :) I would personally have to eat 26 bananas a day, and not only would my body not absorb or magically utilize the potassium properly, I would die from the carb load. We don't care that bananas have a little bit of potassium in them. You don't understand Primary Periodic Paralysis.
It has taken me a few days to get to this post because of all that has happened this week, but here's a short update:
Indy 500 (my rolling walker) and I have visited a large local med equipment company a couple of times. They may be really nice folks, but they are the absolute worst salespeople I've ever met. Every time I have gone there for walker or wheelchair discussions, they have said things so ridiculous and aggravating, I've wanted to scream. Just a few examples:
"It doesn't matter what kind of seat is on the walker, you're not supposed to be sitting on it anyway."
"That one only holds up to 200 pounds." (Side note: I'm not 200 lbs)
"The whole chair is 129 pounds. It's not THAT heavy."
"You don't need a wheelchair right now. You don't want to become dependent on it."
"You look like you're doing fine."
These people have tested my patience to its maximum level.
At any rate, they informed me that a power chair lift cannot legally be installed on a Buick because it sits too low to the ground. They said some people have been brave/crazy enough to rig a lawn mower trailer on the back of their cars for this purpose, but that is not an option for me for several reasons. Mostly, I wouldn't do it because power chairs are a thousand bucks, and I'm not "rigging" a thing. It will be done right, or it will not be done at all. But I also live in public housing with one parking space, and a trailer would block incoming traffic. This is not a possibility.
A truck or SUV with a proper hitch is the only way to legally do this, so that is what I'm facing. An approved vehicle first (unknown cost), then a chair and lift (which amounts to about $1950, not counting tax, accessories, or lift installation).
In summary, I'll have to accept my limitations on the walker unless my circumstances (finances, living arrangements) somehow change.
Edit Note: Now pursuing this because it is easily assembled and disassembled for travel. The heaviest piece is 28 lbs, which is very important since I can barely lift anything. On days I'm able to get around, I can put this in the back seat of my car, and (according to them) quickly and easily put it together in parking lots as needed. I can also carry it with me when riding with someone else, as long as they have room to spare. I just have to figure out how to obtain it now.
I've always called July 3rd my grandmother's independence day. I can't believe she's been gone nine years now. She was one of the best people I've ever known.
My grandmother loved everybody, even all of the people who did her wrong. She took too much crap, but it was her nature. I'm almost sure she loved me more than anybody ever has in this world. She (and my other grandmother) defended me when nobody else did, and I'll never forget that.
I was her part-time caregiver for 3 1/2 years, and her slow, cruel death from Alzheimer's is still the worst thing I've ever seen. She was such a fighter and didn't want to leave us...she suffered for a decade. We were heartbroken, but relieved that she was finally free. I will always miss her terribly.
When I arrive at death's door someday, I hope she's on the other side waiting for me with buttermilk biscuits, butter beans, and sweet tea on the red and white checkered dinner table.
I read a private blog today that simultaneously made me feel better and broke my heart. Chronic illness, either physical or mental, is great at that. To know you're not alone in the struggle can give you the strength to face it and keep going, but it's also sad to know someone else, especially someone you love, is living in the same realm of suffering as you.
Life is weird and unpredictable and sometimes very hard, and we can only live it one day at a time. We could all stand to remember that it's all any of us can do, and therefore we must make a conscious effort to act (and react) accordingly.
I had a big episode last night after eating mashed potatoes. Not only is it a simple carbohydrate, it is also a nightshade vegetable. I decided to research nightshades due to the fact that people have said they can cause muscle problems, and what I learned was very disturbing.
They're cholinesterase inhibitors, which can cause everything from inflammation to dementia. Other cholinesterase inhibitors include pesticides (HUGE dangerous HKPP trigger in me...one of the worst!) and even some teas. If pesticides wipe me out (and believe me, they do with a vengeance), it makes sense that nightshades would do the same.
List of nightshades and other risky produce:
potatoes (not including sweet potatoes or yams)
eggplant (also called aubergine)
peppers (all varieties except white and black peppercorns)
Beware of spice blends, which usually contain red pepper and/or paprika.
There are a few other no-no plants out there, like Petunia and Belladonna. Feel free to Google if you want to look into it further. The lists are all over the net.
I've concluded that I need to address the following:
1. A trial of nightshade elimination, perhaps for several months to see what happens. I can give up potatoes and berries. It's the tomatoes and peppers that will prove to be a significant challenge. 2. Switch exclusively to organic produce to avoid pesticides, which can seep into the vegetable or fruit, making rinsing kind of pointless. Of course it depends on what you're talking about. For example, strawberries are on the danger list, but onions are considered safe due to their skin and protective layers. 3. I already know to avoid carbs, but I can't eliminate them altogether because my blood sugar drops (which causes serious problems in itself). I limit them already, but the mashed potatoes were an obvious mistake. Noted.
This isn't going to be easy, considering my diet is already strict, but I will make it happen if it will help. I hope I never forget how miserable I've been since last night...the pain has been unbearable, I've barely been able to move my legs or sit up due to severe weakness, and it has been difficult to breathe. Typing isn't exactly a walk in the park either, but I felt this was too important not to blog about as soon as possible. (My arms are furious, though.)
If you have HKPP and you have eliminated nightshades, I'd love to hear from you about your experience. email@example.com
I'm off to drag myself to the kitchen for more potassium. Thank God my apartment is small and I have a rolling walker. I have been having an incredibly difficult time lately, and this setback has been no help. I missed a family reunion today and I've missed many other events over the last few months thanks to a decline in my condition. A power chair is on my wish list for Santa this year. It's time.
I've been in a dark place. I was there well before the Orlando shooting occurred, and even before the rapist scumbag and his disgusting low-life parents in California inundated my social media, but those events certainly haven't brought any hope in the despair. My sadness over everything that has been happening lately in the world and in my own life is deep, and I am exhausted.
I'm making an effort to keep breathing and do my best to climb out of this valley. I have been through some bad stuff - perpetually unlucky, according to friends who've been around a while - but I know I'm also fortunate in many ways. I tend to be overly aware (I suppose some would call that self-conscious) of my feelings and the fact that I need to pull myself together and get a handle on things. Sometimes, I succeed. Sometimes, I don't. This is one of the don'ts.
I've got nothing. I can't think of a thing to say or do or plan to do or even hope to do. I strive to always have goals so I have something to move toward, something to look forward to. I'm drawing a blank. I feel mortally wounded. Defeated.
I haven't given up. I reach into my cloudy head every day in hopes of grasping something worth holding onto. When migraines and sleep deprivation allow, I read fervently and listen to music. I eat when my body can handle it. Those moments vary. Occasionally, I overkill and eat too much. In fact, I need to lay off of candy once and for all - there's a mini goal if I've ever heard one.
I'll figure out it. At least I think I will. I often don't believe that. I've never felt like I belong in this world. I remain steadfast in that, but as I always say, I'm here and I'm doing the best I can. Sometimes my best sucks, but it beats the hell out of being six feet under, doesn't it? I guess that's all I can ask for.
I was trying to remember if the doctor told me I would receive a letter with my test results regardless, or only if the test was abnormal. So I called the nurse for a quick confirmation. I asked the person who answered, and she said the nurse would have to call me back. The nurse called back and I happened to be checking out at the store, so I missed the call. She left a rather annoyed-sounding voice mail for me to call her back if I wanted. No thanks...I'll pass.
So I assume the test was normal. I waited two weeks, and I know the results only take a week. I'm relieved that the surgery I had in 2010 is working so far. I just wish I wasn't in pain all the time.
As long as things don't go south, I won't have to return for tests for 3+ years.
I cannot believe in less than 30 days, we'll be half way through 2016. The Gulf Coast has heated up immensely now that Summer is around the corner. Whew, it's already pretty hot, y'all. Hurricane season is upon us as well, and it is a time of nervous anticipation for those of us who don't live in safe zones. Tension certainly has been higher than usual here at the apartment complex, with neighbors in my building and surrounding buildings fighting. The cops were finally called yesterday, but they only sat and watched for a while, then left. Naturally, the bickering and threats resumed today and is ongoing. Ah, the joys of public housing [/sarcasm]. I'm unarmed and just want to be left alone, so I stay away from almost everyone most of the time.
My little sister will be the big 3-0 on the 12th. My polar opposite, that girl. She's upgraded from World Dominator to Jo's Mama. Jo holds the title of World Dominator now, without a doubt. That child is a phenomenon.
Of course, all of my nieces are the greatest. I'm unashamedly biased.
On the 18th, my baby bro Max will be gone for 20 years. It is unfathomable to me that it has been that long. If you're new here, he was 8 months old and died of SIDS. I was 18 when it happened. It crushed my dad, stepmother, and entire family beyond repair...we've never been the same. Max was such a sweet little angel, and we miss him. Crazy that he would have been 21 this October.
And now my youngest living brother, at age 22, is about to become a father for the first time, and it will be a boy - my first nephew. I'm still trying to wrap my brain around the fact that this man was once the spunky toddler asking me through his pacifier to paint his fingernails, ha! Middle age has snuck up on me like a ninja in the night, I'm here to tell you.
We have a family reunion this month. I'm hoping I'll feel like cooking up a storm. I rarely get to cook for anyone, so it's an opportunity I don't want to pass up if I can help it. Of course, I'd like to see a few folks, too. I'll also be donating a painting to the door prize, as requested. We'll see how that goes.
My divorce anniversary is the 22nd. I still consider it one of the best days of my life. I'm grateful to live in a country where legal, permanent separation is granted in spite of the hyper-religious nature of many in our legislation.
I hope someday to live in a world where people don't allow themselves to fall under ownership in hopes of achieving their idea of love. Thankfully, I learned from it, and I haven't let it happen again. I'm more free today, even in my current circumstances, than I've ever been with someone else. It saddens me to see some of the people I care about making the mistakes I made, but sometimes all we can do is stand aside, let people walk their own roads, and hope for the best. If you're in a relationship, I root for you with a sincere heart. May your love be healthy and happy.
I went to the lady doc to check a couple of things. She didn't feel anything particularly alarming and told me that I can wait until I turn 40 to begin mammograms, so that was a relief. I'm still waiting on pap results, which is sent via U.S. Mail within two weeks.
The relevance of bringing this up on my blog is that Mom had a fast and aggressive form of cancer, and I have already had to have polyps removed myself (in 2010, those of you who were reading back then probably remember my uterus rants). She had both cancer and Periodic Paralysis, and was gone less than 6 months after her first abnormal test.
Thoughts appreciated that I'll handle the results, whatever they may be. I'm in a notable amount of pain (more than usual), but I guess it could be complications of systemic disease.
I'd like to think I'm a fairly patient person, but I hate waiting for medical test results. :-/
Yes, the title is a play on words. I'm recovering from another episode of Periodic Paralysis, complete with myotonia in one leg and the rest of me mildly paralyzed. The pain when myotonia strikes is a 10 on the pain scale every time, resulting in yelling and nausea/vomiting and nearly passing out. Then I can't put my leg on the ground for hours or sometimes days because it's so drawn up. Occasionally, I am unable to keep food or drink in me for a day or three...that's where I am at the moment. Somewhat mobile again, but not functioning.
My body completely revolts when the bad episodes happen, and life is just terrible all-around. I face this alone, and my feelings fluctuate between being thankful nobody is here to have to deal with this and anger and despair over my loved ones' complete lack of understanding. I realize there isn't a thing anybody can do for me, but a thread of "give a damn" would be kind. At the very least, I would feel like it matters whether I'm dead or alive. I'm not feeling it. I haven't for 30 years. The name of my memoir is "Invisible" for a good reason.
I read a lot of articles about love. It's an interesting subject to me, but I don't expect I will ever put the things I've read or learned into action with the exception of friendships, which are more important than I can express and I guard them with my life. I manage to be a dreamer and a realist at the same time. I lie in bed and imagine a different me, but the reality is that this is the me I'm stuck with and I'm glad that there is no man (or child) feeling trapped, anxious, and/or resentful. I refuse to coexist that way...I cannot do it. I am an empath and I would feel more sorry for my significant other than for myself, to the point of detriment. I know me. I love people just like anybody else. Dare I say, I am more passionate than some people, without a doubt. My love is intense.
And because of that love, I would never drag an innocent soul into my personal hell.
I'm sure I stepped on some toes with the last post, but it needed to be said.
If you knew my story - everything I've seen and heard and done and been put through as a result of religious fundamentalism - my anger and disgust would make a lot of sense. For over 30 years, I was a doormat to a wide variety of obsessive-compulsive control freaks. I've held in my feelings to the point of implosion.
That point arrived when my mother died, and has been continuously fueled by the constant stream of religious abuse I see in the news and all around me.
I am still theistic, and this is not about God. It's about selfish people using God's name to serve their desires and justify their sicknesses.
If I live long enough to write a memoir someday, I'll tell my story.
And you will either be self-righteously offended, or you will understand.
I used to greatly admire FM radio's "Delilah", but I finally acknowledge she is among the ranks of the Duggars. She admitted live on air to being the cheater/abuser/control freak in her marriages, including physical violence, but because God forgave her, it's ok now and she somehow has the authority to give marriage advice on the radio that amounts to, and I quote: "You need to stop trying to fix your marriage. Let go and let God. Stop trying to reconcile and give it to God. Let him do the work. If it's meant to be, he will fix it." On the same night, she also talked to a woman who called in and said she was repeatedly violent in domestic disputes, and Delilah actually sympathized with her over the loss of those relationships. I was already aggravated at her for degrading a disabled man when she accused him of mooching off of the system, but this was definitely the straw. I yelled "Shut-up, Delilah" and turned off the radio.
Conditioning people to believe that a supernatural force, whether good or bad, controls your life decisions and circumstances is the biggest, lamest, laziest copout for personal responsibility ever created by humanity. This mindset justifies abuse, neglect, and immorality by saying "Everybody makes mistakes. I'll just blame it on somebody else and expect the situation to presto-chango by shaming and manipulating the victim into forgiving and forgetting." As if they could, or should do such a thing to appease their offender.
It's complete bullshit, and I will never support someone with this mindset again if I am aware of it. People like this are the reason why there is so much suffering under the umbrella of religion, and even worse, why there is little hope of it ever going away. Why change when Space Daddy says you're A-OK?
Thank you, Pandora Radio, for my new 24-hour 80s station.
These labs were taken only 7 days apart.
Labs are from the same company in 2 different clinics in 2 different states.
Renal Clinic 5/5: Creatinine was normal, WBC was high, sodium was low, potassium was 3.9, phosphorus was low.
Internal Medicine 5/12: Creatinine was high (indicating kidney failure), WBC was normal, sodium was normal, potassium was 4.2, phosphorus was even lower in spite of starting on a supplement.
The potassium doesn't surprise me at all. I purposely took 40 mEq potassium chloride right before my lab draw to see what it was doing. 4.2 is normal, but I function best in the 5s. Unfortunately, I haven't seen the 5 range in years thanks to the progression of my condition.
I upped the sodium a little in my diet, and it worked. It's very easy to go too high or too low where sodium is concerned, so it's a constant roller coaster.
White blood count is back to normal. Most likely, they were slightly elevated (barely, not a big deal) due to a mild UTI that has since resolved. (I'm still sick with my sinuses, but my white blood cells apparently don't care). This is something I keep an eye on for the sole reason that a doctor almost diagnosed me with Leukemia when I was 20. I still remember how scared he was that it was Cancer, and how relieved he was to tell me it wasn't.
Creatinine...I don't even give a damn anymore. If it's going to fluctuate like that every few days, forget it. It's not even worth documenting anymore.
Phosphorus - I went to GNC and bought a supplement, and my levels went DOWN? How's that for some stupid BS. My body is an idiot.
Ok, breathe. Let's take an intermission from this rant fest to give a round of applause to my Magnesium level, which is holding on for dear life in excellent normal range. Good job, Mag.
I had a post-traumatic stress event a few days ago. I won't go into detail publicly, but I'm just mentioning that it happened. This is not quite the same thing as a panic attack, I've learned, as PTSD episodes are the result of something that has happened in the past, as opposed to a panic attack which is defined as having no known cause. It took me by complete surprise, and I'm beyond disappointed that it occurred, but all I can do is continue to be real about my life and do the best I can. I am unable to be medicated due to the serious HKPP symptoms anti-anxiety meds cause, so I'm up a creek where treatment is concerned. I applied for counseling in 2014, back when I had a social worker, but I never received a response to my application. I figure if they're that busy or careless, it's not worth it. Maybe I'll look for other options.
I think we're all a little broken inside. Some, a lot more than others.
I'm not able to sit up and type very well, but I'll do my best here:
I had renal clinic on the 5th. My electrolytes are still lower than they need to be, in spite of heavy supplementation, so things remain concerning on that front. Believe me, they could be a lot worse, but they also need to be a lot better if I'm going to function at my best (which is well below average to begin with). The problem with ion channelopathies is that lab numbers aren't an accurate reflection of how I should be feeling. My potassium can be 3.5 and I'm fully paralyzed, whereas a normal person with potassium level of 3.5 is ok. That really complicates things, and it's hard to explain to a doctor that life isn't that great when my potassium level is 3.8 or my magnesium is 1.5 or my sodium is 134 or my phosphorus is 2.4. The numbers sound acceptable for the average person, but I'm in agony, unable to drive or perform basic household tasks, and barely able to use my limbs. There is nothing standard about this disease.
My renal doctor and I discussed the failure of Keveyis. We are both disappointed that it didn't work out, but I was quick to let her know that A)I'm not the only one who reacted badly to it and B)There are people who are doing much better on the drug. It really boils down to the individual's body and its ability to tolerate sulfonamide diuretics. We already know I barely tolerate Diamox, so with Keveyis being more potent, the risk for me was high. Still worth trying, obviously, as treating this disease involves a lot of trial and error. That's simply the nature of this rare and unpredictable condition.
My kidney function is otherwise stable, and she is "thrilled". She said it's incredible how well I'm managing all of this. I told her I didn't feel like I was handling it (or anything else) well at all, but she disagreed. She said anyone else wouldn't be able to take all of this in, proactively fight with so much knowledge, or know what to do to cope with such a serious disease. Dr. M is a very optimistic person, and I appreciate that.
I also appreciate a friend driving me to and from Jackson. I was ill and would not have been able to make it on my own, so I'm super grateful for the help.
I had internal medicine on the 12th. We discussed my Vitamin D, and I'm waiting for labs to come back to see if I am finally within normal range. Vitamin D toxicity is possible with the average person, and can be detrimental. That doesn't appear to be something I'll ever have to worry about, since 100,000 IU a week still didn't bring me up to par. I'm on 150,000 IU a week now, and have been for a few months. I'll update when I have the results, but Dr. B said this is something I will probably be fighting with for the rest of my life.
In addition to needing follow-up labs (will update on those Monday), I arrived absolutely miserable with upper respiratory mess and urinary tract pain. I even saw blood at one point, which was alarming. I had a mild UTI at renal clinic the week prior, but as of yesterday, it had cleared up. We're pretty sure my UT issues are kidney stones. I told him I've passed over 40 (I stopped counting at 40) and he sympathized. He checked out my vitals, breathing, coughing, and we agreed to keep me away from antibiotics unless I get worse. Antibiotics inhibit neuromuscular transmission, and in my case, always result in life-altering weakness and paralytic episodes. The last time I was on antibiotics, my stomach paralyzed and I couldn't keep anything down. I ended up in the ER twice, and needed daily assistance from relatives for almost two months. Needless to say, we're avoiding the blasted antibiotics if at all possible. He's hoping prescription strength sinus and allergy meds will get the junk out of my head and throat.
Unfortunately, these meds are kicking my butt also. Insert sad trombone here. I can't take OTC sinus and allergy meds without HKPP symptoms, so you can imagine how well prescription strength is going. But the reality is, if I don't get rid of this mess, I'll end up on both these meds AND antibiotics, which would be potentially catastrophic. Yay systemic disease! Thanks for making my life impossible, jerkface.
So I'm laid up in bed, at least for a few days. I'm really hoping this won't linger for weeks this time, so wish me luck.
I finally uploaded my article, The Battle Against Periodic Paralysis, directly to my HKPP blog. This solves the issue of my article frequently disappearing from various freelance and pdf sites. The Battle Against Periodic Paralysis
It is also updated in my sidebar. Feel free to share.
I had renal clinic this week, and will have internal medicine next week. I've decided to wait until after that appointment before I give a medical update.
I appreciate my readers. Thanks again for riding this roller coaster with me.
People who don't understand muscular dystrophy or other disabilities have a hard time wrapping their head around the fact that some patients are capable of independent life, including driving, if provided the resources and support to do so. The uneducated public would look at this man and listen to him speak and assume he's too handicapped, perhaps even mentally impaired, but they would be absolutely wrong.
Muscular Dystrophy can greatly affect cognition (we call it brain fog), just the same as Diabetes can, but the diseases have no effect on overall IQ.
Years ago, I had an acquaintance who responded to the greeting of someone in a wheelchair very awkwardly at a public event. The acquaintance runs a non-profit organization, but said she didn't know whether to acknowledge the lady, citing that she assumed the lady was intellectually disabled because of how she looked. As a disabled person myself, I was pretty horrified by that reaction, and it turned out the lady was independent with a non-profit business of her own!
The point is don't make uninformed assumptions about people who are different from you. The best approach when meeting someone like Ira (or me) is to assume we have the capacity to be standard members of society. If the person turns out to not have that capacity, educate yourself and act accordingly, but at least you didn't treat a perfectly capable individual like they were inadequate. How insulting that would be, and it's something they would never forget.
Taro contacted me yesterday concerning changes to their sale of Keveyis (dichlorphenamide), and asked that I share with my readers. I am pasting part of the email here. As you may know, when Keveyis was first released to the market, it was listed at over $150 per pill, with patient assistance available to those who qualified. They are now stating that they plan to offer Keveyis to all patients who need it regardless of ability to pay. Please share with everyone you know who is affected by the distribution of Keveyis for Periodic Paralysis. This is good news, and we owe many thanks to Taro for making this drug available at no charge.
Taro Pharmaceuticals announced earlier today that it will change its approach to providing Keveyis (dichlorphenamide) to patients.
In the near future Taro will make Keveyis available at no cost to distributors for fulfillment. We are implementing a number of changes to make this possible, including absorbing all costs associated with manufacturing the medicine and halting of all commercial sales and promotional activity. Our press release is available at www.taro.com , please feel free to share it with your social media networks.
Taro brought Keveyis to market for the treatment of periodic paralysis because we thought it was the right thing to do, and we still do. As a voice for the periodic paralysis community, we want to reassure you that Keveyis will remain available. In the near-term, patients will continue to receive their medication through Diplomat as we evaluate best options moving forward.
While there are business-driven reasons for this decision, it remains consistent with our desire to ensure anyone with a prescription has access to the medicine regardless of insurance status or ability to pay.
You and your readers may have questions related to this new structure. I encourage anyone with questions to send them to PeriodicParalysis@taro.com. We will answer every question possible, but please understand that some questions will require more time to answer than others.
I've decided I need a cat named Eleanor Rose after Eleanor Roosevelt. Too bad I can't have pets.
I made a reference to "crocodile tears" the other day, and was informed by a friend that crocodile tears means that you're being insincere. I never knew this, and now I'm horrified because I have no idea how many people think I'm a jerk for referencing crocodile tears when I actually was crying and meant it - ha! Lord. I even Googled my own blog to see how many times I've talked about crocodile tears here, and it was a lot. Epic fail. :( I've edited or deleted some of those posts. Just know that if I've said I was crying crocodile tears, I was actually serious. Good thing my friends are around to keep me in line.
I had to cancel dinner with my stepdad, brother, and sister in law on Saturday because I was so ill. I'm having a really rough time with migraines, nausea, sleep deprivation, and muscle weakness. It's May, and I am really hoping the warm weather will improve my condition. If it will EVER stop storming, that is. Low barometric pressure certainly isn't doing me any favors.
In spite of how poorly I'm feeling, I have gotten a heck of a lot done around the apartment, including repairs, general cleaning, and rearranging. More to tackle after I recover from renal clinic. Will post pics soon, maybe.
I checked with that cute apartment complex in Bay St. Louis to see where I am on their waiting list. Still #35. My name isn't moving in the right direction (I was originally #22), so that's not good news. They have a rule that Mississippi residents, people with kids, and the elderly take priority, so needless to say, I expect to never live there. As far as other locations, I am only on one other list, which is Biloxi, and I am rock bottom. All other waiting lists I've checked on are closed in both Mississippi and Alabama. The reason for still needing to move is that my insurance doesn't cross state lines, and with my specialists being in Mississippi, that's where I should be even though it's not where I want to be AT ALL. I don't want to be in Alabama either, mind you. My heart is divided between Louisiana and Florida for multiple reasons.
In better news, I will receive a small allowance in food assistance for the next 12 months. It will cover my daily protein drink supplements and a little bit of meat, which is usually poultry. The low-carb/high protein/fat diet is still on for now, but I will continue to discuss it with my specialists and monitor my weight closely. Being on a medically-specific diet is challenging on such a tiny budget, so I'm grateful for the help. I'll elaborate on the diet more later.
I won some beautiful art supplies on Twitter. Folks on Facebook have already seen it, but I'll do a video blog as soon as I feel up to it and post it here.
I received an email today about HKPP drug Keveyis, for those who may be interested. I'll share it tomorrow.
My biological father was the lone survivor of 11 babies in his neighborhood stricken with Poliomyelitis in 1952. He was saved via advocacy from the March of Dimes and a team of doctors, surgeons, nurses, and physical therapists who worked hard to give him quality of life. He spent his early childhood in a wheelchair and late childhood on crutches and in braces, Forrest Gump style, until he could walk on his own in his mid teens. He married soon after, divorced, married again and started having children in his 20s. He would divorce, remarry, and continue to have children into his 40s, thus my tribe of half-siblings. He also worked full time at Chevron refinery, was a Scout leader, and a volunteer baseball coach. He died young, but when you look at the big picture, he was pretty lucky to have accomplished all that he did.
Polio is almost eradicated worldwide, thanks to Jonas Salk and his vaccine, which he chose not to patent. His selflessness has saved countless lives. May we not take it for granted.
April is a hard month, and I'm glad it's almost over.
To be honest, April, May, and June are all hard months.
My migraines are back with a vengeance in addition to my usual chronic muscle pain, and it's difficult to cope with life when in severe pain head to toe around the clock. Not to mention the sleep deprivation, which I believe is slowly consuming me. I'm just so tired.
Although currently in physical and mental turmoil, I still believe I'm doing the best I can.
Sometimes, I think a big hug would be helpful.
Then again, I'm in too much pain for that.
I've made a to-list for the next several weeks, which includes renovating some of my blogs and getting rid of others. I'll let you know what I've done after I've done it. I don't expect this blog to change much, if at all.
I actually have quite a few blogs. Some have been neglected, like my food blog. Maybe I'll bring it up to date and share the link. I'll think about it. I also have a lot of updating to do on the art blog, as well as the Etsy store. I may put a few things on eBay as well.
Camp NaNoWriMo is pretty much over. I exceeded 10K and added it to my previous totals. I write a lot of nonsense and notes in addition to the actual manuscript, but once I'm done, I do expect the finished product to be novella-sized. I've got to get more sleep so I can focus on this.
I have several art projects planned as well. But first, I am spring cleaning the apartment. My closets are beginning to look like closets again, so that's kind of exciting. I must really be getting old to feel good about the condition of my closets.
I still haven't had a Coca-Cola since Mardi Gras. I want one every day, especially with these migraines, but I have resisted so far. I do drink a lot of tea.
Renal clinic is coming up. I may have a driving buddy. Hopefully that'll work out. I haven't hung out with her in many years. The trip to and from Jackson will give us plenty of time to catch up. It's Cinco de Mayo, so hopefully I will feel like stopping somewhere along the way for some quick festivities.
I've got to figure out my diet. It's a bit rocky, and my weight is at a standstill. As long as I don't gain, I won't freak out. I do have 15 lbs or so to lose, however, and that sounds so easy, but it seems to be one of my biggest challenges. Being on a high protein, fat diet is the culprit, as well as my inability to properly exercise with Muscular Dystrophy, but I am still holding onto hope for a solution.
I've resigned from American Christianity until further notice. Sorry for not elaborating a while back when I said I was going to. It hasn't been easy to write about. Still theist, but I will not associate with jerks who are dead set on mistreating those who aren't like them. I have family and friends suffering because of this, and my own story is long and painful. I will tell it eventually.
Midori the Gypsymobile is suffering a bit. I hope she hangs in there for years to come, but she's definitely slowing down. God bless my big 'ol Buick.
I've reached 1100 questions on Ask. I have a feeling I've blocked one or two of my askers, so things are pretty quiet these days. At any rate, if you want to ask questions, feel free. I still check it fairly regularly. The only things I don't talk about are sex and specific relationships such as an ex, relative, or friend. Getting that personal crosses the line.
Every time I say I'm going to take a break from Facebook, I end up not doing it because I'm a loser with no willpower. Sometimes, I post even more than I did before I said it. I should probably stop saying it now, you think? I really am going to take a break, though. Maybe.
If my health hadn't plummeted, I would be obtaining my first of two Masters this month. College nearly killed me (literally), but I miss it and I miss planning my future. I was proud of the goals I had laid out.
I wish I were well so badly. I don't understand people who say they embrace their disease or are somehow thankful for it. Screw that. Systemic disease has robbed my life. I live far too alone, in far too much pain, with far too many limitations to sugar-coat this. It's hell, and I don't think I should be judged or criticized for feeling that way. I've never been a ray of sunny sunshine wrapped in rainbows and butterflies, and I don't expect to morph into one in this lifetime. At least I'm real.
And I'm still very grateful for what I do have, in spite of it all.
I almost forgot that I talked about Mom last year. I really don't have anything to add to it, other than to talk about grief. A club nobody wants to be a member of, grief is a deep and multifaceted process. I've seen on social media (a cesspool, I realize, but I digress) on several occasions the rituals and remembrances of people's loved ones being criticized, including my own losses. Someone I grew up with, who sent condolences after hearing about my mother's death, later made a snide remark in response to the above-linked post that nobody wanted to read my emotional crap. Why she felt it necessary to seek likes and comments at my expense all of a sudden is beyond me. She had been out partying that night and decided to check her news feed at some point. I told her I wouldn't forget what she said, suggested she stay offline while she's intoxicated, and we haven't spoken since. In response to me posting photos on another account of my family's gravesite, someone snarked "What kind of person takes pictures of their dead relatives' graves?" That would be me, and by the way, what kind of person sits in front of a computer screen and judges others' grief?
As you can see in the photo above, there were some smiles. There were also some tears, and some really hard, horrible times. When I announced her death two years ago, an acquaintance simply said "whatever", as if I was giving her too much credit by being devastated. The woman gave birth to me. Sometimes I wish she hadn't. Sometimes I still get angry and ask God why things happened the way they did. I ask why my parents had children when they so frequently rejected us. Some questions are already answered. Others may never be, and while I do my best to move forward, I will probably never stop asking.
Let me get to the point: grief involves not only a tangible loss, but also a loss of possibilities. People mourn the death of a loved one, because they loved them. They can also rightfully mourn for what could have been, should have been, and will never be. Hope is everything, and to helplessly watch it fade away forever is life-changing. There is no reconciliation. There is only emptiness. To deny someone's personal journey with profound loss, you must either lack empathy or live an incredibly charmed life. Not understanding something doesn't give you a license to be ugly about it. Respect is a basic human right.
Here's the thing: this road is mine and mine alone. Nobody else belongs there. There may be others who are impacted, but their grief process is individual to them and mine is individual to me. Nobody gets to tell anyone else how they should be reacting or feeling or coping with death. All opinions are invalid. In a nutshell: know your place.
I am here because she gave me life. I will always miss my mama.
"Be open to new people and situations but trust your instincts. You never know where a new relationship might be found whether it’s a new business connection, a potential romance or a new friendship. When you open yourself up to new opportunities you give the right people the chance to meet you, but trust your instincts and verify that new people entering your life actually share your values."
"Set your own boundaries and don’t be apologetic. For your own health and sanity, it’s okay to say no or tell someone they’ve pushed you too far or asked for too much. If you know it is time to cut the cord—be bold, direct and firm. Unless you want them to hang around and play the victim, don’t fall into the trap."
This is a decent article on bringing the right people into your life and dealing with the wrong ones. I read a lot of articles like this. I think it's important to understand the psyche of relationships of all types, especially friendships in my case, to remain aware of what I and others are setting on the table.
A lot of people previously in my life had no concept of boundaries, and considered themselves attacked when I set them. They were so used to their self-made superiority and manipulative ways, they tried to make me look like the antagonist for standing up for myself. Some of them still do. They want so desperately to be the victim in the game they were playing, but little do they want to admit that it was never a two-player game. They were all by themselves in their heads, and they ran out of quarters before they even asked if I wanted to play along (answer for future reference: I don't). Oops, game over. You lose.
I'm thankful for what I've learned over the years. As hard and horrible as some of those lessons have been, I'm glad I'm finally starting to put my health, safety, and sanity first. I'm not sorry for that; I'm only sorry I didn't do so much sooner.
I have such wonderful friends, including several new friends that I've recently made, that I wouldn't trade for the world. They've taught me more than they realize, and I am better for knowing them. Without a doubt, more changes are ahead in my world...hopefully all of them good.
(Vagueblogging is therapeutic sometimes, don't you think?)
It takes an absurd amount of conditioner and smoothing oil
to not look like a frizzy, crazy, poofy-haired hag.
I've never liked short hair on me, but people tell me this isn't short.
Beauty is not my genre, friends.
I'm guess I'm low-maintenance.
I just want to sleep, OK?
My stepfather took me out to lunch for my
birthday (we finally managed to meet up after Easter).
I had my first rib-eye steak ever. Yes...EVER.
Then we went to Hobby Lobby.
He had never been there before. Yes...NEVER.
He was overwhelmed, and I was too weak to go around much of the store
but he insisted on buying me some art supplies.
I chose watercolor, because it's something I want to pursue.
He has always been my biggest fan where Art is concerned
and I appreciate his support more than I can express.
Oh, and the world map was only $5.65. I've always wanted one. :)
I had dinner with friends also, and they threw me a party.
The food was great. I was given a nice card and this lovely gift.
I have such thoughtful friends. They used to be in my Bob Ross
workshops (it's been five years since my last class...hard to believe).
I'm glad we're pals. My students are still the best, and I miss them.
I can't believe I haven't mentioned this on the blog at all.
My brain is so fried from sleep deprivation.
I participated in #TwitterArtExhibit!
I sent a colored pencil postcard to Trygve Lie Gallery
in New York City. It's on the wall with hundreds of other
cards for sale with 100% of the purchase benefitting a
great non-profit called Foster Pride.
It was a cool thing to be a part of!
These video blogs are so pathetic, y'all. Haha.
21 minutes of pointlessness. Enjoy if you dare.
Edit Note 7:45pm: The appointments mentioned the above vlog were canceled. I mentioned the reasons why on Twitter, if you want TMI. Next doc appointment will be renal clinic in May.