Category Archives: Ehlers-Danlos syndrome
Life keeps happening to me, damn it. I keep telling it to give me a breather, but no, it just keeps on happening. Like it doesn’t care what I want or what I think. Probably because it doesn’t but that doesn’t keep us all, at one time or another, from looking up at the heavens and begging for a break.
As you know, if you have ever read my stuff anyway, I lost a kidney last year, after having a botched surgery the year before. That crap was on top of the “normal” issues I deal with thanks to my lovely life co-star EDS. Life was even more interesting than usual around here (with “here” being inside my head).
Then family stuff happened that ate up months of my life. Yes, it completely took over. IN a good way, sure, but still. Our daughter and her family moved from the east coast back here, to home. It began with hours of time on video chat talking out the logistics and me running about checking out rental houses. Then with her flying out with the kids for a visit while she went to a couple of job interviews (who insisted on them being in person and not via video chat).
What was supposed to be a week-long visit then turned into a “living with” when a day after an interview, they called and offered her the job, with the caveat that she starts in a week. I suddenly became the full-time babysitter to two grandkids. One of which, at 8 months old, had never spent an hour away from mom. Or took a bottle. Or napped without being held. Yeah.
The search for a rental house suddenly went from casual to urgent and the rental market was poor because of the tornado that hit last May.
The decision was made that they live with us until such time as they were able to find an adequate rental home, which meant enrolling the eldest grandchild in the school down the street- with me as after school care- and me being full-time daycare for the little one.
The little one who was not having it with the whole “no mommy” and “no nursing” thing. Bottles were thrown through the air with wild abandon and not a little righteous anger. By the baby, not me. Naptime turned into crying jags that could have been filmed for future horror movie usage. By the baby, not by me. Though by the time mommy came home from work, I was emotionally spent. Which didn’t stop dinner from needing to be made, or laundry needing done.
Luckily, I have the patience of a saint, or so my husband tells me, frequently. He used to tell me I had too much patience when our kids were growing up, that I should haul off and give their butts a good whipping with some of the shenanigans they got up to. I don’t really believe in hitting and that’s all I have to say about that. If I did, he’d have had his butt whipped on a regular basis. Which isn’t what he meant, but he should be careful what he asks for.
All the while the son-in-law is back on the coast, finishing up his job and not packing the house up for the move. They made the decision to hire a company to do not just the moving, but the packing as well. I could write an entire paper on how that turned out…but it isn’t my story.
We found a house for them to rent, a really nice one, it was a bit over their target budget but very worth it. They got moved and we sort of got back to life, though the grandson was still in the school by our house so he was more or less living with us so that he could finish out the school year there instead of moving again.
I should probably insert here that when they arrived at the first of February my grandson was sick. He’d gone to the doctor and been told his 5 weeks-long coughing was just bronchitis and would clear up on its own. If it didn’t, take him to another doctor. Well, it didn’t and taking a three airplanes trip halfway across the country probably didn’t help. He did end up back at the pediatrician, who said it was a sinus infection.
Within a week of their arrival, his mother and sister came down sick, both ran a very high temp for about twenty-four hours, then it disappeared. Both had a nasty cough that lingered for weeks. A week later, I came down with the same thing, very high fever for twenty-four hours or so, but then I was very, very sick for two weeks before it settled into weeks and weeks of coughing. My lovely barely existing immune system was trying its best.
The Hubs was irritated that I refused to go to the doctor while I was sick, but he always thinks I should dash off to the doctor for everything. Which I don’t really understand because they rarely help and then he just gets mad about it, but hey, at least he cares.
I did, in the end, give up to his pestering and used the brand new feature our Insurance company decided to provide- a Teledoctor. I did all the necessary bullshit- and trust me when you are as “medically complicated” as I am, filling out those online history forms is a two-day endeavor that requires copious amounts of hot tea and consultation of three-ring binders. Let’s just say that the Teledoc appointment was about as useful as seeing a proctologist for toenail fungus.
The doctor was more concerned about the fact that I am on pain management medication and have been in a pain management program for a decade, than he was with what is wrong with me right now. He didn’t know what EDS was and, in one of the WORST plays a doctor can ever make, lied and said he did. We can TELL when they lie about it, it’s pretty easy. Not to mention I could hear his fingers on the keyboard as he GOOGLED it….
In the end, he asked me what I thought was wrong with me. I replied, not without a slight bit of sarcasm and snark, “A sinus infection?”
And off I went, with a prescription for an antibiotic and a DEMAND that I see a doctor, in person, within 24 hours to further treat my “Sinus Infection”.
Which totally defeated the purpose of the Teledoc….which was so I didn’t HAVE TO GO OUT OF MY HOME. The really, really sad part of it was that he didn’t want me to go see a doctor IN PERSON because he was concerned about my illness….NO….it was because he was concerned about me being on Pain Management medication….
The Teledoc program sent me an email survey requesting feedback. They got feedback, shitloads of it. What IS IT with doctors being so wrapped up in me being on Pain Management medication when I am in a CERTIFIED Pain Management Program? A few days later they replied with an apology….seriously…and said they were going to provide additional training for their doctors. Good, I hope…
Then, of course, the whole COVID thing started up and I was like, oh shit…here we go.
And go we did. Schools were canceled so I became the homeschool teacher and caregiver for my grandson for a couple of weeks until his mom’s job sent her to work from home. He has since moved home and is doing his homeschooling, or tele-schooling, whatever they are calling it, from there.
The Hubs is still having to work because UPS is an “essential” job. Sadly, we live in a “Red” state so no one is doing what they should be doing. No, these numbnuts greet him at the door, send their kids out to mob his truck, approach his truck when he’s sitting there trying to eat lunch, not wearing masks, not wearing gloves, bragging about having Easter get-togethers. It’s like they all want to die or something. Like a passive-aggressive deathwish.
Needless to say, his anxiety is resting on its laurels on the top of Mount Everest enjoying the view as it sips some expensive whiskey. He is terrified one of them is going to give it to him and he’s in the “target” category- being in the 60+ group. He is also terrified he will bring it home to me. Me, his immunocompromised wife who died during surgery last August. Meanwhile, I’m over here not so sure we didn’t already have it, with that round of crap that came here with them back at the first of February. That I am still not fully over, by the way, still fatigued and coughing periodically.
We both are having weird dreams when we do manage to sleep and anxiety-fueled adrenaline dumps several times a night. If you’ve never had an adrenaline dump, be glad. You wake up with a jolt, heart pounding, breathing like you ran a mile, drenched in sweat. It’s like having a chemical cardiac stress test. Between the two of us, we’ve had to change the sheets at 3 am because they are so soaked with sweat it’s like climbing into a rain-soaked sleeping bag. Just yuck. You may be exhausted but the idea of crawling into those cold soaking wet sheets is just too much.
I read a piece in National Geographic about the dreams people are having because of COVID, which made me feel better. Told the Hubs about it and I think it made him feel better also. It seems that the weird as shit dreams are normal for the PTSD inducing life with COVID we are living at the moment. Go figure.
Well, there it is, where I have been for the last several months. I’m hoping that I can settle back into a normal pattern now. Back to work on the book series, I was in the final editing process of book 2 when all the craziness started at the end of December.
Though, to be honest, I’m thinking that this whole writing thing is too much. I’m not sure I can do it anymore. I’m also not one to leave a project unfinished. I guess we shall see who wins? Inner demons of doubt or dogged persistence?