A Quality-of-Life Update

I guess it’s been awhile since I’ve written a real post. Since it’s Endometriosis Awareness Month, I’ve been trying to reblog my better endo-related posts to raise awareness at a time when it’s most important. You can check out my new endo-specific page here, with information, expanding resources, and links to my blog posts. It’s pretty and has that new-page smell! πŸ˜ŠπŸŽ—

I guess, when it comes down to it, I’ve been using this month to hide. From myself, from the world. Some good things and some not-so-good things have happened, which you would know if you read any of my weekly Monday “Share Your World” posts. (But the vast majority of people who read those are people who don’t actually know me, so what do the finer details of my life matter to them?)

I’m on this merry-go-round that happens to be a roller coaster at the same time. And I really want to get off it so I can puke (no, really, I am actually uncomfortably nauseous right now, but it’s become a constant part of my life, too, so whatever.) Or at least purge…something.

A week ago I caught some sort of bug that I think may have either been a mild case of the flu (mild because I got my flu vaccine/shot/jab πŸ’‰ this year, of course) or some other virus. Since I hadn’t been out of the house in a week (and it was to the hospital for two appointments on opposite sides of campus, so I passed a LOT of potentially sick people), I blame David. Even though he showed no signs of illness, he has the world’s most powerful immune system; in the 12 1/2 years we’ve known each other, he’s never once gotten sick. So he probably brought it home somehow, since the flu is currently rampaging through the area. Even though it was only mild, I felt like trash. Take my normal trashiness and add vomiting (once) and a low-grade fever (maxed out at 99.5 *F, or 37.5 *C for the rest of you) and I felt positively horrendous. 🌑 πŸ€’You may laugh about the temperature, but my normal body temp is about a degree below normal, so when it gets up to normal, I feel it. I was worried when the thermometer read 98.6*F. Sure enough, it kept climbing. At least it only lasted three days.

IMG_1946
Aurora knows when mommy needs a kitty.

This past week was decent. I had a huge accomplishment on Wednesday. I drove myselfΒ to my doctor’s appointment with my PCP, Dr. P! First time I’ve driven in three months, and it was 98% highway. The only way I was able to do this is because I rested for three days beforehand. Plus, I woke up feeling well (which neverΒ happens) and since the appointment was at a family health center and not the hospital, it was much easier since I didn’t need to deal with the wheelchair. I also brought along my hydration pack (several bottles of Gatorade, a bottle of water, and a stick of Nuun tablets). We had a back-up plan in place; a family friend was going to take me once he finished class, but I told him I was ok. (He doubled checked with David and his own wife just to be sure…he can’t help it, it’s the nurse in him, bless him.) I’m grateful to have people like that in my life. πŸ™‚ The appointment went well; I really didn’t have anything to say (stupid brain fog, I forgot to tell her about the brain fog!) But I’ll see her again in June, since we’re having appointments every three months to make sure we have all my issues figured out, since she’s my quarterback.

Yesterday I finally crashed and today I crashed worse. So two good days in a row were awesome! Thursday was David’s birthday! πŸŽ‰ I like to tease him about being old now, but he throws it right back at me because I’m five months older than him! Our age right now is completely useless. I still get carded when the UPS driver delivers wine. 🍷 πŸ™„πŸ˜

But really, at its most routine and basic level…life remains unchanged. Each day is still a delicate balance between salt intake and hydration that it takes literally all day to get right. I nearly blacked out while getting the mail today. Luckily I crashed through my front door just as I was about to hit the porch; I had justΒ enough control left to get inside and suck wind in the foyer for a bit, surrounded by concerned felines.

As to how my life has been going, I think these two graphics from the Dysautonomia Advocacy Foundation sum it up well.

This is real, folks. This is what my life is like. A common measure of quality of life in congestive heart failure patients is their ability to walk to and from their mailbox (assuming it’s at the end of the driveway.) I can manage on good days, but today was a clear example that not all days are good. Many are bad, like today. The more bad days I have, the more my mind starts to wander in the direction that this is permanent. I see my cardiologist, Dr. J in two weeks to discuss adding Florinef, which I’ve heard mixed opinions about. It seems in the best circumstances, it works for awhile, and then suddenly stops working. In the worst circumstances, it can’t be tolerated or has to be stopped because of hypokalemia (low potassium), which I’m already prone to. And then…who knows? There really aren’t that many drug options because none have been approved to treat POTS.

I should shut up. I don’t know what this rambling piece of poo is. My apologies. I should go back to reading instead…that’s my escape now. I just read three books in one week…

πŸ’›ribbonrx

10 thoughts on “A Quality-of-Life Update”

    1. Haha, thanks! Yes, that’s Ruby the Endo Roo. She accompanied me to two of my three endo surgeries (both in Atlanta) and the second time, last July, they let her come back to the OR with me and they fixed her up while I was asleep. They even put steri-strips on her! πŸ˜‚ Yeah, I feel like I should get an award for getting to that appointment and back, since it’s about a 50-mile round trip.

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  1. Thanks for the update, Ribs. Is it OK if I call you “Ribs”? πŸ™‚ your endometriosis campaign has been educational. I haven’t read all of them but I need to. And I need to be better about reading your Share Your World pieces. I like the personalized graphics on your blog. Do you use PhotoShop? You are dealing with a lot right now and just think how amazing your testimony will be. Glory to God. You guys are turbo young – 31 if I recall? Happy birthday, David!

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    1. Haha, yes, you can call me Ribs! πŸ˜‚ I’m glad you’ve found some value in my endo posts. One week to go!
      I actually use an app called Canva for my graphics. It took me a bit to learn how to use (and I still don’t know too many specifics), but I watched a tutorial on YouTube that helped.
      Right now I’m really trying to seek the Lord. When He revealed to me that I would lose my job, I was shocked, especially when it came to pass a week later. But He’s been silent since. I’m of course still learning from the Word, but nothing like the revelation He gave me last month.
      Yes, we’re still relative babies, only 31! I’ll be 32 in October. 😊 David says thank you for the birthday wishes!

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      1. LOL, glad you like your new nickname! πŸ™‚ Yes, I’ve learned a lot so far about endometriosis that I didn’t know before. Good to know about Canva. I think I’ve heard of that one before. I need to be better about seeking the Lord. I do like listening to gospel songs so worship is my connection to Him. How did He reveal the job loss to you? In a vision? In a thought? I remember I was underemployed for the first year we were trying. I was working a low-wage job and I remember not really enjoying life back then. Also, my undiagnosed hypothyroidism was really bad. I was fatigued all the time. There were other times, earlier in my 20s, where the jobs didn’t work out and it really affected my confidence. Just know that this is all temporary. You are a very intelligent individual. You will not have a problem finding a job when it’s time. He knows best. Maybe He wants you to be at home healing and seeking Him rather than working. David is such a nice biblical name!

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      2. Well, it’s a pretty long story, but at its most basic level, the Lord used verse repetition to speak to me, which is interesting because I learn by repetition. Like the SAME verses popping up from different devotionals and readings multiple times a week, which pretty much never happens. I started to keep track of the verses to try to figure out what He was telling me. It’s hard to explain how I knew from those specific verses what was going to happen…that must have been the influence of the Holy Spirit. But part one came to pass a week after the revelation was made to me. Part two I’d rather not speak about yet, but I trust the Lord that it is His will and it WILL be done. πŸ™πŸ»πŸ™Œ

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