Tuesday, October 4, 2022

Where oh where has Sara been?

I get lots of messages from people asking where I've been, how is my health, how am I doing (besides reading), how are things? And for the most part you'll get the, "Oh... you know... the same..." and I'm rather vague.  

Because honestly? I really don't know how I am doing. I have had a really chaotic year in terms of health stuff, doctor visits, lab work, and crying in my car and/or closet (depending on the day). Let us start with November 2021 though, because I feel like the latest series of events kind of kicked off around then. 

Since my AFE, I have had a series of awful medical things happen and I know I used to do a good job at updating things here, but honestly, it feels like it is coming at me fast and furious all of the time and I really don't know my ass from my elbow some days. It's not so much that I am getting diagnosed with new things, but the things that I have been diagnosed with are changing, getting worse, or kind of morphing into something else, but nobody is actually sure so we wait. What I have consistently dealt with though are things that I could narrow down to a few categories: 

  • Fatigue: Guys. When I say fatigue, I'm not talking about the, "I wish I got more/better sleep, I'm really dragging ass and could use a nap" kind of tired. I'm talking about the kind of tired where you're totally fine and functioning and all of a sudden (literally), you feel like the Energizer Bunny as his batteries die down. It truly is like everything around me turns into slow motion, things sound far away or like I'm in a tunnel/under water, and I truly feel like if I do not lay down RIGHT NOW and sleep, I am going to collapse. As it turns out, I actually will fall down and sleep. Why? Nobody knows! 
  • Vomiting: Why people choose to vomit meals daily, maybe even multiple times a day, I will never understand. I go in random stretches of feeling totally fine, I can eat like a normal person and things will be OK to being a person who walks around her house carrying a red bucket and never leaves the house without a plastic Target bag (or ten) because I will puke out of nowhere. Think about food because I'm hungry? Puke. Try to eat a meal? Puke. Have to go pee? Puke. Want to take a shower? Puke. Answer the phone? Puke. It literally phases nobody in my house anymore, mom just pukes and we plan around the what ifs. I'm not even puking food anymore, it's bile, and then whatever the thicker, almost pudding like bile that comes after regular bile? Whatever that is, it is absolutely disgusting, never in my life have I ever experienced that and once that starts, then I'm in real trouble because I'm going to pass out. In other news, if anyone is looking for a good gift idea for me, a really good kneeling pad for next to the toilet would be awesome. Currently I'm balling up towels and that's not really doing it. The only thing I know I can always keep down are Wheat Thins. I will almost always have Wheat Thins in my purse (like a whole ass box or bag from the box), on side tables, next to my bed, literally everywhere. You know how an alcoholic would hide alcohol? That is me... just with Wheat Thins. 
  • Dizziness/Double Vision/Everything is a Merry-Go-Round: Honestly, this is the most unpredictable, and easily the worst, thing that I'm dealing with. Sure, fatigue sucks but I can take a nap and usually feel functional. Vomiting is not awesome, but I've got a bucket and Wheat Thins, come at me, bro. Dizziness though? You are actually totally fucked. There are medications of course, none of which work so I don't even bother. I could be totally fine and just like that, I feel like I'm on the fastest Tilt-A-Whirl, there is two (sometimes three) of things, and I am so damn dizzy. I look like an actual drunk college girl in 5 inch heels on a cobblestone street in the dark. It has made leaving the house near impossible. If I'm going to, it's a whole routine to do before, a whole series of things to bring just in case, and having several back up plans. I haven't gone to a store alone in... well over a year. Someone has to be with me because there is a good chance I will fall or definitely need to hang onto someone. If I get dizzy, I can chug a ton of water like I've never had water before, eat a bunch of salty snacks, and wait. If that's not working, I chug a ton of water and then eat a bunch of sugary snacks, and wait. Usually one of those works. If it doesn't, I have to go home immediately and go to sleep. If I'm alone by chance? I'm locking my car doors, opening windows slightly and taking a nap and hoping for the best. I'm not even kidding. 
Now, you're asking yourself, "Sara- what the hell, don't you ask a doctor?!", to which I say oh child. Seriously. I have been to primary, endocrinology, gastroenterology, cardiology, pulmonology, rheumatology, nephrology, neurology, the ER countless times, accupuncturist, balance and movement therapy, physical therapy, opthamology, and any weirdo idea anyone has come up with? Done it. All of it. No answers. Everyone just points at each other, meanwhile I'm in the middle eating Wheat Thins and looking like I've been on meth for a week straight. 

The worst though, was in November. I had been complaining that it was truly just getting worse and nobody really understood what I was saying. Until the day I passed out in the shower without warning, for 45 minutes, only to be woken up by Lucy holding my cell phone and asking if I want to call daddy. I had no idea what the hell happened, or how, and I was so disorientated. 

I know I hit my back, shoulder, and arm on the water spout going down, and I think I hit my head on the side of the tub, and probably bottom. I woke up to the shower being off (so I know something hit the little button thing that you push down to fill the tub) and the water hitting my forehead, so how I didn't drown, I have no idea. That's what my back looked like right after and that was an AWFUL bruise for at least a month. 
I had bruises like this in weird spots, so under my arms, one on the back of my neck, one on the side of my boob (but on the other side of my body, so that was odd), a bad one on my knee, the top of my foot, and god knows my head hurt like hell for days. Pretty much everyone was in agreement that I had a concussion for sure. Nobody can agree on why this would have happened. I didn't feel lightheaded or anything before, I truly have no memory of going down. So that was fun. 

Since then though, the dizziness and vision issues have only gotten worse. I rarely drive. If I do, please know that I have had enough water to accomodate three camels for a year and my bladder is probably going to burst. I've eaten an exact amount, I have snacks and more water, I have a bag to puke in, and I have a list of people to call should I get into trouble and can't drive. I can tell well in advance if I'm going to be able to drive myself to an appointment or not, and Matt will leave work to take me. I no longer walk outside because I get dizzy and disoriented. 

Which means that I have literally become a recluse. I'm lonely and sick. I don't go places, I don't have people come over because nobody wants to hang with someone who can't shower alone, pukes all the time, and literally only has Wheat Thins to eat. My house is a wreck, I have no energy, I'm exhausted, and I'm frustrated. I think I've narrowed it down to either endocrinology or gastroenterology at this point. I'm shit out of luck with endo because the doctor I've had since day one literally just died, which explains why I can't get a call back or reply message on the portal to save my life. Gastro FINALLY agreed to see me this Friday, so I'm just crossing fingers something good happens. 

The last straw at this point for me was yesterday. Yesterday I took Jackson to a doctor appointment. Got so damn dizzy so him and I just watched weirdos walking around the Hillside area for an hour while I chugged water and ate snacks. I got him to school and I just felt... not great. I was going to lay down but thought, I better pee first, you know? I pee, and I feel like I am actually being stabbed with pins and needles all across my lower abdomen and I have just a dull, but not comfortable, pain in my lower left side. I was at the sink and I remember thinking, "holy shit, I think I'm going to pass out, this hurts so bad", and I have a pretty high threshold for pain by now. So somehow I get to floor and decided to crawl out and into the living room to lay on the couch. 

Fast forward almost an hour later, I wake up, flat on my damn back, spread out like a starfish in my dining room (which is like half-way between the bathroom and the living room), and I have no fucking idea how I ended up like that. I decide I need to get to the couch, so I was able to stand up, I walked the maybe five feet to the couch, and I curl up in a ball and sleep for another hour. Now, nevermind I had apparently taken the dog out and he's outside and my back door is WIDE FUCKING OPEN. Hi, just come murder me. Have some Wheat Thins on the way out. 

By this point it is almost 3, so I know kids are coming home soon, so I get the dog, butt scoot my way down the basement stairs to my room, get into bed and slept for almost three hours. I was able to go back to bed around 11 at night, and I feel fine today. I'm tired but that's about it, same as every day. 


Blood pressure is all over the place. Beats per minute? I could go as low as 40 and high as 120something one time and I was literally sitting on the couch doing nothing. I feel fine either way, no different. I keep telling Matt that if this is how the rest of my life is, this is pretty damn bleak because I am in misery right now. 

1 comment:

Shooting Stars Mag said...

Ugh, I hate this so much for you. I mean, my family has some weird diagnoses and we have TONS of doctors between all of us, but I can't imagine seeing so many and things getting worse and STILL no answers as to what the hell is happening or why or what to do about it now. I really do hope that it's gastro or endo, since MAYBE they can still do something about it. Hope gastro went well, since that would have been last week, correct? Let me know if you ever need anything - and by that, I mean, I can totally ship you some Wheat Thins or something!

Lauren @ www.shootingstarsmag.net