Me, Lately



I’ve Been Tired

Or How I Stupidly Managed to Book Four Doctors’ Appoinments In Three Days This Week…

There was some concern over whether I might have sleep apnea that might be aggravating my fibromyalgia. I don’t sleep well. Never really have slept well. I’m a very light sleeper so I have to play a white noise app so little noises won’t continually wake me up all night. I use one with isochronic tones that’s meant to help induce sleep. I find it does help. I sleep better with than without and friends that I’ve recommended it to have said the same. Anyway, I digress… I was to do a sleep study at home. I had to pick up the equipment at the hospital Sunday night, learn how to hook it up and use it, and fill out and sign a bunch of paper work. I got no sleep with the equipment on. I was so afraid of rolling over that I would startle awake, I had a stuffy nose and couldn’t breath (which I made note of on the form), and a neighborhood dog howled all through the night. I woke up with dark circles and matching luggage under my eyes. That was appointment number one.

I’ve had a sinus infection that won’t leave. I’ve had it for weeks. Why don’t I take antibiotics? Well, those of you with autoimmune issues understand, you can’t always take antibiotics because our bodies already produce too many antibodies. It could make us worse instead of better in the long run so I have to be very careful about what I take antibiotics for. Thankfully, my doctor understands this and communicates with me. She asks whether I feel badly enough that I might need them or do I feel that I can ride it out. I love that we work together. I’ve never had a doctor like her before. She’s phenomenal. She was doctor appointment number two.

Later the same day, I went to appointment number three. My neurologist. Because my pain and my sleep had been getting worse he threw in yet another prescription into the pile. We shall see how this works. I really like my neurologist. I’m almost certain he’s an Aspy (Asperger’s Syndrome) like my son. I’ve gotten to know him over the years and now he’s more comfortable with me so he jokes around a bit and he’s wickedly clever. I appreciate humor. He’s also always been very compassionate with me and listened when no one else would. I really appreciate when people do that.

Today was my last appointment of the week. It was one of the doctors from disability to determine whether I’m fit or not. His work was psychometrics, so a lot of memorization and repeating things. I have no clue exactly what he was looking to determine so I have no idea how I did. I honestly was too tired and ill feeling to care. He even commented that I looked unwell, so maybe that was a good thing? No freaking clue.

I never really wanted to apply for disability. I cried for hours when I finally realized I had to because I simply could not work. My body would not let me. It was a very depressing realization. I like working. I felt useful and now I feel like a burden to everyone. They tell me I’m not, but it’s how I feel. I’m so used to taking care of everyone and I can’t do it anymore. I can barely take care of myself. A few doctors’ appointments completely wrecks me. I’ll be unable to function the rest of the week. This is my life now.

Sometimes a friend or family member will tell me to think positively, that things will get better, and I’ll want to scream. Because they won’t. Lately, more often, I just outright tell them that no I won’t get better so please stop telling me to get a better attitude, my attitude has nothing to do with it. I know they mean well but none of the things I have suddenly get cured. I only have one friend who totally gets it and only because she’s a spoonie like me. I don’t know if the denial is just an inability to accept what’s happening, but a lot of the time it feels like a lack of support. So I don’t talk too much about it and I’m careful about who I talk to. For my own sanity. I’m too tired emotionally to help people through my health crisis.

Murder! Death! Kill!

Or How My Drawlloween Zen Was Shaken to Its Very Core…

Why can’t I have nice, long moments of luxurious, delicious, decadent peace? Why must people always crap on my parade? Bastards.

Despite the fact that my health has been slowly and steadily getting worse, unfortunately, I had found some peace in picking up drawing again. I did feel a bit rushed having to complete a drawing a day but I still enjoyed it enough to want to continue after Drawlloween was over. I hoped that, in lowering my stress level, it would eventually help improve my health a bit.

Then weird, unexplained things started happening with my health. I went to my doctor on a day during which I had a migraine coming on. I warned the nurse taking my blood pressure that it would be high because of that but it turned out to be very low. Scarily low, in fact. No one could explain it. I take a lot of medication that raises my blood pressure, not lowers it. And I’ve had quite a few dizzy spells and migraines lately. That’s just amongst other health issues.

Also add in dealing with two teenagers into the mix… Ugh. That would undo any sane person, really. They like to take turns aggravating me. They’re good about that. But the boy at least knows to toe the line. He backs off quickly if he sees that I’m about to explode. (Yes, I’m a yeller. I know that’s a fault of mine, but there it is. I blow up and then I get over it.) The girl, however, sees no line. She utterly obliterates the line and I’m screaming until I’m hoarse and she pouts like I’m the evil witch. This time, though…

She actually went so far that her grandmother, my mother, flipped out on her. My mom rarely ever loses her cool. She’s the epitome of “stiff upper lip”. It makes me crazy sometimes how cool and calm she stays. But, apparently, my mom not only lost her shit on my daughter but almost slapped her. That is huge. Even my daughter realized she fucked up big but she’s like me, go big or go home. She added to it.

I have gotten so angry that my own mother is actually laughing at me. I was ranting and she…giggled. I couldn’t believe it. My son comes in after all calmed down a bit. (He was at work during the drama.) He asked, “Why is she pouting?” To which I loudly replied, “Because I will kill her if I see her today.” And he just shrugged and walked away with an “Okay” because, you know, it’s Wednesday and that’s how we do things here on Wednesdays.

Mama, I’m Coming Home!

Or the Strange Trek Back From Russia…

During our last week in Russia, we played tourist in Moscow. I still didn’t get to see the things I wanted to see but I did have more fun. The hotel we stayed in was larger but further from Red Square. It was also more solidly built. I was told that dignitaries and government officials stayed there on their visits and security was excellent. Because of the security, I would get my own room to myself!

I was too busy checking out the view from the hallway window to notice that everyone was choosing their rooms. By the time I noticed, all of them were taken except the corner room. The bastards figured it would be the smallest so no one wanted it. However, karma was on my side this time. The room was huge! Suddenly everyone wanted it and I told them all to back the hell off or I’d cut someone.

For some strange and unknown reason, D felt that he needed to explore my room rather than his and he seem into the bathroom. “There are two toilets,” he said, looking confused. I told him that there wouldn’t be two toilets, obviously one was a bidet. He wasn’t familiar with bidets- how, I don’t know- and insisted on testing mine out, despite my protests. He came out of the bathroom with an odd expression on his face. “I didn’t like that,” he said, “It shoots water up your ass!” I asked him what he had expected it to do and he shrugged.

We spent a few days checking out the city. We went to this crazy big outdoor flea market that stretched out for miles and shopped and got our portraits done. (Mine are still in the attic somewhere.) I learned quickly that Americans got ripped off and pretended to not be American. Whenever I would try to speak to Rita or someone in our native tongue, it would slowly morph into French. I don’t know why. I became pretty fluent in French that summer and Rita, who didn’t speak a word of French, understood me. She, in turn, would speak Russian to me and I would understand her even though I only knew a smattering of Russian. It confused everyone but we made it work.

Then it was time to go and it was hard to say goodbye. My family had been so warm and welcoming. The made my trip a delight. I was going to miss them a lot. There were a lot of tears. Which were cut off quickly when they seated us in the smoking section of the plane. This is back in the day when you could smoke on international flights. But I was supposed to be in nonsmoking, along with D. My father and aunt were smokers so they were fine in that haze of smoke.

I quickly found a stewardess and explained that I was allergic to cigarette smoke and needed to move. I even pulled out my inhaler for good measure. I told D, who was seated near me but not next to me, to do the same but he was too shy about speaking up and stuck it out the whole flight. I got moved to the nonsmoking section, next to an old man and a man lost in the 70s. I like old people so I was totally fine with be seated next to the older gentleman. I was actually quite happy about it. The other guy looked kind of sleazy with some weird perm in his hair, unbuttoned shirt, and large medallion on a chain around his neck. I got the window seat.

Sleazy guy spoke English and the old man didn’t. We made introductions and some small talk and then I grabbed a magazine to read. The old man started reading over my shoulder. I offered him my magazine and he shook his head. Sleazy said, “He can’t read English.” I made a noncommittal noise of some sort and turned back to my magazine….and so did the old man. He was literally reading over my shoulder. Fully leaning on me. I pulled away. He moved with me. I closed the magazine and looked at him and he smiled back at me.

That’s when I noticed Creepy Mr. Rogers in the row behind me. He was talking to two Russian teens, I gleaned from their conversation, who were going to visit family in America for a few weeks. I called him Creepy Mr. Rogers because he spoke just like Mr. Rogers. “We’re going to land in Neeeewww Yoooorrrrk. Do you know where New York is?” He had a weird pedophile mustache. That sounds awful of me, doesn’t it? What can I say other than that I was a bitchy 16 year old making these observations. He was creepy though.

So I wound up feigning sleep for most of the flight and listening to Mr. Rogers talk to the kids about Russia and America. The old man got up frequently. Only he would grab the seats in front of him as he did and pull hair as he stood. About three quarters of the way through the flight, one of the ladies finally had it. Her friend, who spoke Russian, stood up and turned to me and chided me, in Russian. I sighed and told her, “Look, lady, it’s not me. I haven’t even gotten up once. It’s this old man here pulling your friend’s hair. Nice Russian, by the way.” I must have shaken her composure, she looked startled when she said,”You speak English!” Which is when I replied, “Yeah, I am from Jersey. Duh.” She quickly sat down. The old man got up again and pulled the lady’s hair. I laughed. The lady and her friend had to negotiate with Sleazy and the old man.

I crunched myself back against the window and read my magazine, occasionally listening to the weirdos around me. I always managed to get myself into weird situations with strange people. At least the flight was almost over and I would be home. After we landed, we were prevented from leaving the plane for a bit. My mom, who was there to pick us up, had told me that Yoko Ono was on the plane and had to be let off first. I didn’t get to see her but, hey, I’m two degrees separated from John Lennon now, right?