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

Renal and Internal Medicine Clinics May 2016


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

Updated Article Link

I finally uploaded my article, The Battle Against Periodic Paralysis, here to the 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.

-Kelli

Wednesday, May 4, 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.

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.

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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

Sunday, May 1, 2016

My article on Periodic Paralysis (which keeps disappearing)

I can't keep that article (in the sidebar) online to save my life, can I? Things keep happening to the links. Annoyed is the word of the day.

I've decided to put the entire article directly here on my blog. I'll get to work on that. Just letting my readers know that this will finally be resolved soon.

Thanks!