I have rare disease, and I’m not sorry.

It’s rare disease day. I’ve talked about it for years, and while I believe I have taught some people a few things, I don’t see any evidence that it matters so I'd rather be shot than go though another rare disease day.

People lack self-awareness and empathy. All my life, they have acted like the struggle of chronic patients is a personal attack on them and their idealism. It’s prejudice, nothing more, nothing better. They’re just plain prejudiced against the sick and poor, and are ashamed they are forced to encounter someone they can’t fix or control. I don’t care how the hell they were raised or trained; it’s a moral failure that I will never accept or respect.

Pain outweighs everything else in my existence. When it finally ends and I am permanently at rest, I will be better off. I don’t care how stupid that sounds.

I don’t care. My new year resolution is to stop caring so much. If you are embarrassed that I learned how to publicly advocate for myself to stay alive, tough luck. If you think I’m “negative” for battling serious illnesses and talking about it, leave and never come back. If you’re a user or abuser who is part of the problem, die.

I have rare disease. My life is ruined by it. I’m angry about that and at all of the people who failed me. I have every right to be, and I’m not sorry.

Internal Medicine and Genetic Reports

These photos may upload badly, but let's see.

The genomics lab sent me reports on certain conditions in which I am considered high risk. I printed them out and gave them to Dr. B yesterday, along with my raw data for Periodic Paralysis (previous blog post). He accepted it all with interest, recognized the validity of the gene.iobio database, and promised to upload the reports to my chart. We also discussed a high impact variant I am showing in gene COL6A3, which is Collagen IV Alpha III Myopathy. He agreed to ask his staff to try to find a Rheumatologist who accepts Medicaid. I won't hold my breath, but I appreciate the effort. COL6A3 is a disorder where the collagen which surrounds muscle cells is broken. This would explain some of my symptoms if I can get a clinical consult to address it. Considering many people in my support groups have both Periodic Paralysis and a collagen disorder (in many cases, it is diagnosed as Ehlers-Danlos), my chances of having both are pretty high, in my opinion.

I want to make clear the reports below are not a diagnosis. They show mutations in my DNA that support a higher than average probability of having or developing the condition.

Next year, I will likely have another Echocardiogram and my first Mammogram, if insurance OKs it.

I also expressed to Dr. B how much pain I'm in all the time. He prescribed a pain medication for temporary use, and Medicaid denied it. It's unfair that someone as ill as I am, with no history of addiction, is being refused a temporary script for pain. Insurance companies insist on demonizing opioids, and I understand to some extent why they are cautious, but patients with serious and painful chronic conditions are being discriminated against to the point that they are dying by suicide. I don't plan to be one of them, but I'm also not making any promises. I shouldn't be debilitated, sometimes vomiting from the pain, and refused treatment because some rando who doesn't know me is paranoid that I'll become a law-breaking addict. It's outrageous. This country is unbelievably cruel.

That is all I have to say for now. I will return soon.

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.

A Better Person

I've been feeling like a thousand angry piranhas are chewing their way through my lower torso, but it was so beautiful outside, and I couldn't stand the thought of being confined to my apartment for another day, so I made the quick drive over to one of my favorite places: Bellingrath Gardens. I am lucky to live a mere 13 minutes away. I sat in the cafe and drank tea, watched the fountain, and pretended my insides weren't being stabbed by a dozen tiny samurais.

Photos don't even begin to do this place justice - especially my photos.

A fountain and a friend. :-)

The gift shop is nice. LOL

This is so cute.

In further rebellion, I went down the road to the park on Portersville Bay and sat for awhile.

This made me laugh. It said "Class of 2028" on the other side. Gotta love a kid's heart. I won't be birthing any myself, but I really love kids. They great.

While taking the pics, my muscles announced their impending meltdown, so I stopped immediately and made the 5 minute drive home, where effervescent potassium and my bed awaited.

Life has been turbulent for a long time, but it's not something I'll ever get used to. All I can do is propel myself through the day as I am able, or surrender as needed (because that's ok too, sometimes). After everything I've been through, learning to be kind to myself has proven to be a challenge, but I'm giving it my best effort. I can't help but wish I had understood 20 years ago what I do today; I would have avoided some trauma, without a doubt. I know I still have plenty to figure out about me, but who doesn't? After all, we are all a constant work in progress, right?

One of my 2018 goals is to tackle my stress and PTSD, not only for the sake of my mental and emotional health, but physical as well. HKPP and stress are sworn enemies, and I have to do whatever I can to kick my escape response to the curb. Not just for myself, but for those I allow into my strange, silly, broken, passionate, intense, unpredictable world. I think most people don't really know what to do with someone like me who has both fire and ice in their soul, but I will always appreciate those who try.

I'll keep trying, too. I'll never stop wanting to be a better person.

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.

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]