My body reacts poorly to stress. The emotional stress of the last two weeks and the physical stress of all of the traveling seems to have knocked me out. I have some sort of infection thing going on somewhere… Sinus or something. I have no idea what is going on, but I feel horrid. I also had to come off of my meds for my second round of allergy testing, so that definitely isn’t helping. Hopefully this crud will be short lived and some rest as I get back to my routine will let it clear up.
It’s interesting how, in this time of intense emotional pain, the link between brain and body can be so tangible. I’m in intense emotional pain and it’s messing with my body. I’m getting random aches and pains that shouldn’t be happening, my IBS is acting up (which is definitely something that can be emotionally triggered), and even then I know my headache medication is working I’ve suddenly gotten a bad headache going again. Ugh. Maybe my brain knows I can kind if handle physical pain and is trying to “help” by making it more “manageable” or something? I don’t know. But the link is interesting to notice.
Grama holding my hand on my wedding day ❤
There won’t be many posts I don’t think. I’m in shock a bit, so I’m just thinking in short sentences and facts.
She has had massive amounts of strokes (her brain is full of clots). Luckily, she didn’t suffer. My grandfather just has to decide when to remove life support.
Thank you for all your good energy. My family could still use the strength, but Grama is resting forever now.
(I just realized it’s April first; this is NOT a joke, this is just horrible timing for my family)
I found out last night, very late, from my sister that my grandmother was in the ER. Apparently, she had told my grandfather she felt like she was going to pass out and then she did and then she fell over and hit her head.
She’s been in the emergency room since then. They’re actually moving her to the ICU soon. She’s still unconscious, and they don’t know why. The CT scan was inconclusive, and she isn’t stable enough to do an MRI (she has too much equipment on and MRIs are too restrictive for everything). It sounds like they’re suspecting she had a stroke of some sort. The problem is the CT didn’t show one, and so they can’t treat it without knowing which kind (one kind is from excessive bleeding so you need to give blood clotting medication and one is from blood clotting and so you need to give blood thinners). Apparently, she also has a blood clot in her lung that is putting pressure on her heart; but she is already on blood thinner medication (normal prescription) so they can’t actually do anything without potentially making anything in her brain worse.
When I was trying to determine what “severe diarrhea” was defined as, medically, I couldn’t find anything. Seeing as how I have suffered from the exact opposite problem my whole life, I don’t exactly have a reference point. The Linzess says to stop taking it and contact your doctor if you have severe diarrhea. It’s to treat IBS-C. I see problems with this, in that most people that need medical intervention for constipation probably don’t really understand what qualifies. However, while I was trying to find a definition, I did find that you should seek medical help for diarrhea lasting for more than 3 days in an adult.
Today, I woke up completely exhausted, and decided to skip classes to recover my strength (my stomach didn’t hurt at 6am). Then I woke up again at 11a, and realized that my stomach hurt again and I was still exhausted. Sadly, I seem to once again have very watery diarrhea. Tuesday, when I had the watery diarrhea, was a Linzess day, and so is today. But I seemed to have adjusted to the Linzess and it wasn’t causing any problems for a week or two so I don’t know if that’s causing it or if it’s a coincidence? Ugh.
Tuesday, I had one non-watery diarrhea episode, and three watery diarrhea episodes. Yesterday, I had one non-watery diarrhea episode but could barely eat anything at all so nothing was in my system to pass through my intestines anyway. Today I have so far had one and I can tell in about two minutes I will need to rush to the restroom again for another episode of watery diarrhea. Does this count as three days? Why is medical intervention necessary after that long? I don’t have any signs of dehydration above anything that is normal for me (my lips are chapped, but they are almost always chapped; my skin isn’t dry and it is still completely elastic). I’m doing my best to drink fluids, but my belly is upset so I can’t do it too quickly or I feel like I’ll vomit. I see my GI doc on Wednesday. I just need to know if I should be calling my doc tomorrow morning or if I might be okay over the weekend. My Urgent Care centers can give IVs, so I don’t think I’ll have to end up in the ER if i get dehydrated. I’m just worried and very confused. Any advice?
My house is burning out: both Dan and I are burning out, actually. We’re both pushed pretty far towards our limits and both our burn outs are feeding into each other. It’s not a good situation really, but luckily we have each other and the little strength we each have left is stronger together. Dan is really busy with school, and work, and the stuff around the house that I can’t do, and the home improvement stuff that I can’t do, and taking care of me. I’m busy with school, and the stuff around the house that I can do, and trying to get the stuff done for making money that I want to do, and trying to figure out how not to be in so much pain, and all my doc appointments, and dealing with side effects, and getting over a head cold, and trying to figure out what I can actually do around the house, and trying to make sure I have the spoons I need for the commitments in the coming days.
The burn out is really why I haven’t been on here. I’ve just been trying to survive right now. It’s been harder than it sounds. Hopefully, things will start to equal out soon.
I was clicking around Zazzle trying to figure out some new products that I wanted to make, and was struck with a rather silly idea:
People with dysautonomia often do not have the ability to wear what they used to or necessarily want to. Many of us are forced to choose comfort over any sort of style.
This idea ultimately led to these:
Official Uniform of the Dysautonomia Warrior T Shirt by FindingTheSilverSun
Look at Dysautonomia T-Shirts online at Zazzle.com
Official Uniform of the Dysautonomia Warrior T Shirt by FindingTheSilverSun
See other Dysautonomia T-Shirts at zazzle
What do you think?!
Yesterday, especially last night, I was in a lot of pain. I was in so much pain that I couldn’t get to sleep until after 4am. Obviously, that meant there was no way I was going to try to wake up at 6am to get to my classes.
I slept until after 11am, and I am not really feeling better. My neck really hurts, which kind of makes sense after the MRI results, and my entire back hurts. The nerve pain in my right arm refuses to go away, and it will no longer pop (which would give it temporary relief at times). There is now nerve pain in my left arm that won’t go away either. My head is killing me (for two days). And, on top of everything else, my hips hurt.
I don’t really know why this is happening… but I suspect it might actually have to do with my neck. My neck and back pain and stiffness have been getting steadily worse for weeks. I’d always written the neck pain off as being from weak muscles and bad posture, so I never thought anything of it. Apparently, I should have mentioned it at some point. I’m wondering if my recent uptick in pain could be due to something in my neck getting worse? I guess I’ll find out on Tuesday (I had the wrong day, but the right date, in my head). Hopefully, the results won’t be anything bad…
“Belly” means my entire digestive tract, by the way. I just think it sounds less gross to say “belly” than it does to say “intestines.”
My belly is still causing major issues. Yesterday was a pill day and I ended up having some pretty bad issues. I was really gassy and then got pretty sick later. From how things looked, it looks as though my digestive system is suddenly moving things way too fast; which is how it feels too. Hopefully, it’ll slow back down because I don’t want to end up malnourished. That wasn’t fun and I ended up completely exhausted and unable to do stuff around the house I really wanted to do.
Today, I woke up in TONS of pain. My belly is incredibly cramped and I keep getting more severe pain that comes and goes… so I can tell the pain is related to stuff moving on through. Not fun. It hasn’t really gotten too much better throughout the course of the day. Nausea has improved, at least, but the pain is pretty bad. But with the nausea doing better, I was able to eat a regular meal (we had Panera Bread for lunch). Hopefully that will get a good deal of nutrients into my system before my next pill day tomorrow (I’m also hoping my next pill day goes much better).
I haven’t taken my probiotic because it can cause diarrhea too, and I don’t need two medications doing that. However, I’m starting to wonder if it might help with nutrient retention and speed up the “getting used to the medication” process…
While I don’t feel completely like death, I am attempting my homework. So back to catching up I go…!