I’ll admit it. Last week did me in. Two weekends in a row, Todd ended up at urgent care for respiratory crud. Evan got round #3 of antibiotics for his persistent ear infections (shots!). And I earned my own flu and strep tests. (I forbid Ella from getting sick or any major boo-boos. She has since fallen victim to it too.) I raised the white flag and called my mother-in-law.
I really try to be tough! I really try NOT to ask. When your “normal” is “hot mess,” you’re constantly afraid of burning out the people that love you. Many of you know of Pete and Peggy Rathbun, gifts from our years in Indiana when Todd was in PA school. Like parents and grandparents to our family, they recently retired in a little town about 30 minutes away. They help. A lot.
Paralytic attacks haven’t been well-controlled lately, and I knew being sick with a virus wasn’t going to improve my condition. Plus the mountain of emails and phone calls was piling up higher than the loads of laundry and dishes. I needed live-in help to get my head above water. I needed sleep. Linda Glass swooped in and saved the day.
Because of her help, several key contacts were made:
1. Greenville County EMS and Greenville City Fire Department. Man, they were awesome. Both spent a lot of time trying to understand my condition, so they could brief first responders personally. I sent the protocols for emergency treatment and anesthesia to enter into their computer-aided dispatch (CAD) systems, so everyone will know what to do when my address pops up.
2. Periodic Paralysis Association board member. After getting wind of the last appointment with my neurologist, she kindly offered for me to call her. I did. Talking with her was invaluable. She encouraged me to keep pursuing a service dog (a never-ending string of dead ends thus far) and facilitated ending the runaround I had been getting for days concerning my medication (another long story).
3. President of the Periodic Paralysis Association, Dr. Levitt. I couldn’t hide my excitement when an NYC number popped up on the caller ID, and I thought it just MIGHT be him. An M.D. in dermatology, Dr. Levitt also suffers from periodic paralysis; he’s an expert. I couldn’t believe he called me personally to discuss the problem that the board member relayed. In short, he solved it, and gave me his cell phone number, so my internist could prescribe what was necessary until I see Dr. Lewis at the end of the month. I could write a whole post about our conversation. I just might. It was amazing.
Many thoughts running through my head as of late, but as I am already feeling very behind on updates, a few things:
- My appointment with Dr. Lewis, the neurologist who specializes in treating periodic paralysis patients, is on November 26 in the Philadelphia area. We are bringing the kids because I think that’s the only way we’ll see some of my family. I’m not trying to sound morbid, but in the words of Dr. Levitt, people do drop dead of this. Obviously, that’s not my plan. But my attitude has shifted. I know my right side isn’t as strong as my left. It’s weakening. It’s not just during attacks anymore. And if I am wheelchair-bound by 50, I don’t want to have regrets. Everybody is busy. My family isn’t unique in this. Life is for the living, and if I don’t plan stuff, it won’t happen. We’re trying to be smart and take our time getting there. I’m putting a mattress down in the van. Still, I know no matter what it’s gonna be a difficult journey. It’s not going to go according to plan, and that is totally OK. I’m confident it’ll be worth it.
- I had my first appointment at the Muscular Dystrophy Association clinic yesterday. Wow. What a great organization! I’m now connected with pulmonology (to monitor respiratory function), durable medical equipment specialists and a host of other contacts to help me maintain and hopefully improve once I’m on the right treatment. They even set me up with a wheelchair I can borrow for my trip. Some of you might be putting two and two together and realizing this means I had to see the now infamous neurologist face-to-face again. Whew. That is definitely deserving of another post. In summary: I took Pete with me, and I was armed with information (think labels and binders). In short, he said I did “awesome.” I’ll take it. (I’m pretty sure I had the doc singing Aretha’s R-E-S-P-E-C-T by the end.)
- Friends have been kind enough to offer any kind of support I need. This sweet statement often gives me temporary amnesia. Ha! So I’ll say it here: if you’re local, what I really need is time. Evan is just the happiest, sweetest baby; he’s just into everything. Meeting my kids’ needs trumps all, and I just can’t concentrate between kissing boo-boos, feeding him yogurt and watching the contents of my desk drawers be emptied or eaten. The best hours to research and make phone calls is in the daytime and that’s when appointments happen too. I have even started attaining/assembling/organizing all my medical records. So if you’ve got an hour or two to spare to play with a sweet baby and/or hang out with the best daughter on the planet, I’ll take it.
One day, I’ll get around to describing in detail what it actually feels like to experience this disease. Just know for now, one of the most difficult aspects is losing my words. When I’m going into or coming out an abortive (full-paralytic) attack, my brain has trouble recalling words and then physically it’s hard to get them out. Episodes of weakness cause this too. For a self-described “communicator” this is frustrating.
Writing these posts without a filter hasn’t been easy and yet I felt like I couldn’t go any longer without doing so. Still, I braced myself for the response (or even lack thereof). The outpouring of love and support has been food for my soul. I want to think of a unique way to say this has restored my faith in humanity, but ironically, words fail me. So “thank you” to every single person who has messaged, called, texted, emailed or otherwise contacted me to show care and concern. It means the world.
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