Saturday, May 28, 2016

On This Episode: HKPP, Myotonia, Depression, Love, and Living Alone

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.

Monday, May 23, 2016

If you knew my story...

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.

Either way, I won't regret it.

Thursday, May 19, 2016

Divorcing Delilah

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.


Cross-posted to Thoughts & Theories

Wednesday, May 18, 2016

Internal Medicine vs Renal Clinic Labs (alternate title: My Body Is An Idiot), & PTSD

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.

C'est la vie, mes amis.

Friday, May 13, 2016

The Good, The Bad, The Ugly...It's Time For Multiple Medical Updates


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.

Saturday, May 7, 2016

The Battle Against Periodic Paralysis Article Update (New Link)

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.

Thursday, May 5, 2016

Thoughts on Uninformed Judgment of the Handicapped



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.

Thanks for reading.

Wednesday, May 4, 2016

Tuesday, May 3, 2016

Good news for Periodic Paralysis patients on Keveyis

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.

---End

Monday, May 2, 2016

Hello May: Another Stream of Random Ramblings

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.

Dad and Polio

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.