I'm also an avid sword/knife collector, animal lover, fantasy lover,
I'm married to the love of my life <3
I suffer from multiple health conditions, which are too numerous to list, but I work, try to workout and eat healthy, even though it's a struggle to get out of bed some days.
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For the Horde!
Best explanation of what it takes to be a spoonie ever!
Physically today is a bad pain day. The high humidity and random showers is making my body hurt so much. I also didn’t sleep well. I’ll start from the beginning though.
I’m getting divorced. It will happen officially next May 6. To say the least I’m a bit devastated but am slowly starting to move on with my life. I’m hoping to move out of the house by September if it doesn’t sell. The market is really quiet right now so it can’t really be helped. I just can’t stay in the house any longer than I have to. I need to be closer to work and out of the place. I’m not going to waste my time ruminating on what went wrong etc etc any longer. I don’t deserve to run myself into the ground over what I did/didn’t do anymore. It’s bad enough that I’m going to suck it up and see someone professional to talk to about a lot of things that are bothering me lately.
So after that bomb was dropped, I had a great June. (NOT). I got gallbladder attacks again. 8 years and no answers. Well, I KNEW the answer and how to get the result I wanted, but it took freaking 8 years to get it. I had been insisting on a HIDA scan, which measures how well your gallbladder is functioning. (I’m a nurse btw, and had done a lot of research on this stuff over the 8 years of these attacks). My attacks had been getting longer, more painful, and more frequent over the last 2 years. I had been to the ER about 12 times over the last 2 years. Each time I would get the same thing. It took going to a different hospital to even get good pain control. Like morphine and an anti-spasmodic. Then I was like, I’m not leaving this place until I get pain control. And every test came back negative for stones and sludge. So it could only mean that the functionality of my gallbladder wasn’t the best. Anyways. Fast forward to June. I took a very bad, very different attack in the first 20 minutes of my night shift. I had never had that much pain before. I left work immediately and went to the ER by myself. I got admitted and sat there, pain increasing by the minute. I finally had to go up and tell them that my pain was getting worse. I could barely walk at that point, and I was crying. I got into the assessment unit about 10 minutes after that, around 8pm. It took until about 1am to get assessed by the Dr, and get an IV for some pain meds. I realize that they’re busy and have people who have trauma and what not, but holy crap. I was admitted to a bed and was writhing in pain until then, and trying not to disturb my roommate. I was there until Friday at noon. They discharged me, even though my pain was still very high. The Gastro Dr said they would put a requisition through to get the HIDA scan done.
For those of you wondering, a HIDA scan is a radioactive scan that they do to measure how well/bad your gallbladder is working/not working. It’s a very long test and the radioactiveness was why my Dr didn’t want to order it. (I basically told her I was like Chernobyl from radiation exposure over my lifetime that this one extra test probably wouldn’t hurt).
So off home I went. By 7pm that night I had to call 911 to take me back to the hospital. I was sweating from the pain, my blood pressure was high, and I could barely walk. Bless those EHS guys/gal. They were so good to me. Once in the hospital an older EHS guy got my IV in first go (I’m a super hard poke, crappy hand veins and really only two on my arm that are a go…right in the crook of my elbow *cries*), and gave me morphine IV push. It took the pain away for about 10 minutes. I finally got a bed and again didn’t get anything else for the pain until 2am. I tried to tell the Dr who assessed me that this was a very DIFFERENT attack this time. I usually got a dull ache, then increasing pain etc. This time I had sharp, stabby pain right off, out of nowhere. I had barely eaten anything that day because of pain and nausea, which was severe. Again, the ultrasound and x-rays showed NOTHING. Surprise! So I got discharged again but this time with pain meds!
The GI Dr that friday had told me that if I hadn’t heard anything from them about the scan by the following thurs to give them a call. So this is a week. I hadn’t been able to keep any food down, not even the SlimFast I bought for something nutritious. Ginger ale and water was all I could do. By that Weds I hadn’t heard anything and was still having pain so I called them. The GI team had no clue what I was talking about, so they patched me through to 3 other places. All of them had no clue what I was talking about, there was no record of anything. GI said they had a req to see them but it could take 4-6 MONTHS to see them! I was like, Uh yeah, no. Imma take care of this shit NOW.
So I called my family dr, made an appt for the thurs (now a full week since my new attack) and outlined the above. Bless her, she immediately called who she needed to call and I was told that I would be called for a time for the scan either that day or the following. (Friday). I had to be NPO (no food or water at all) until I got the call. That was at 11am. 3pm I get the call that my test would be the next day and that I wasn’t to eat or drink anything after midnight. (I celebrated by getting a small sandwich at Starbucks that basically consisted of cheese and tomatoes). SO I get the test done the next day at 11am. (I see a pattern lol). I got injected with the radioactive material, sat around for an hour to let it infuse me with superpowers (sadly untrue, I didn’t get any superpowers *pouts*) and then was told the test would take an hour. I got a treat though! I got to drink a fatty milkshake. It was the best freaking thing I had tasted in a week, so it was easy to drink it in the 5 minute timeline they gave me. (While lying down. It’s not easy!). My test was done, then I had to get more pictures done at the request of the radiologist. Then even more. Finally I was led to an office to await my results. The Radiologist came in and said “So the test shows that none of the radioactive material has left your gallbladder. It also didn’t fill properly as we expected, and it didn’t empty anything either. So it’s grossly non-functional (Fancy terms!). GI has been informed and they’re waiting for you at the hospital. Go to the ER and tell them you’re getting admitted for emergency surgery. Good luck to you”
Cue my jaw dropping to the floor! I thought the test would come back normal and blah blah blah. Nope. I was SUPER validated, but super angry it took 8 years to get this result. Anyways, I had a minor freakout, called my mom, told her what was going on, and texted my friends as I walked the 3 blocks to the hospital. I eventually got admitted to the ER, went to a special waiting area, and waited. The surgeon came down to talk to me and was asking me about my pain etc and told me they might do it elective instead of emergency surgery. This means I would have to wait possibly months. He was like “So how many months has this been going on?” I looked him straight in the eyes and said “It’s been 8 years.” He looked at me as if he heard me wrong, then shook his head and said “Well I guess we’ll take it out tonight then” LOL.
I was admitted to the hospital floor that night and very obviously would have to wait until the next day for my surgery (it was late when I got to the hospital floor so I understood). I had a great roommate who I chatted with, and my family rushed the 3 hours up to the city and were coming in the next day. Again, I couldn’t eat or drink anything from midnight on. My ex brought me a meal to eat, bless him. Then my family came in the next day (Saturday) and we sat around just waiting for the word. Finally the word came and I was whisked away. The surgery was a complicated one because of my heart history, so the anesthesiologist asked me a lot of questions, but she was awesome. I remember getting on the operating table, them looking for a good artery for something, breathing in something from a mask and then LIGHTS OUT.
I woke up in extreme pain. I apparently hyperventilated from the pain, and passed out. I came around eventually. After being in recovery for a bit I was eventually admitted to a nursing floor (a specialized one b/c of my heart condition) and slowly became aware of how much it hurts to have surgery. *laughs* I had open heart as a child (8 yrs old) but don’t really remember much, so this was my first adult surgery. It hurts, btw. Thankfully they hadn’t had to open me up like they were worrying about, so it was all done by laproscopic. Still, I was in a lot of pain. So my cocktail of pain meds was dilaudid and gravol. Also, getting a pain med subcutaneously hurts. A LOT. But it was worth it.
It’s been a month since then and I am all healed and slowly getting back to work. But with everything that’s been going on, the stress has triggered a fibro flare and insomnia. I refused to go on an anti-depressant that I was on before for my fibro pain, since I’ve lost 13 pounds and also the med never really helped with sleep or the pain, only helped me pack on 25 more pounds. So my Dr finally gave me a sleeping medication. I took it once and wow. I actually slept through the night! It was heaven. I haven’t taken it for a few days because I had to get them split (I did it at work, since I don’t own a pill splitter). I hope it works with the half dose. I took the full dose but it made me super dizzy so *sighs* Ah well.
But this pain is so frustrating and annoying and god I just want it to stop. :( I hate this. I’m so tired of being in constant pain that gets worse if a cold breeze hits me, or the humidity is a jerk, or it rains….augh. I sincerely hate this. I mean, if my being in this much pain had some hidden meaning to it, I’d take it. But it’s just my body going HAHAHAHA! ALL OF YOUR SYSTEMS HATE YOU. HERE’S SOME PAIN, SOME INSOMNIA, CHRONIC BACK PAIN, CHRONIC FATIGUE, A SHITTY HEART, A SHITTY GALLBLADDER, TWO AUTOIMMUNE DISORDERS, AND IBS! OH, AND HERE’S A SIDE EFFECT FROM NOT HAVING A GALLBLADDER! LET’S ADD CHRONIC DIARRHEA TO THE LIST!
Seriously body, you can stop. I GET IT.
Oh gods yes. I’m in so much pain today with this crappy, rainy, high humidity weather :(
It’s like, “Hey, empty space where my gallbladder used to be, you could at least let me digest fried chicken once. Just once. C’mon, it’s been three years since I’ve kept that shit down. Just once. That’s all I ask.”
I’d just like to eat ONE meal without running to the bathroom 5 minutes later and having everyone now think I have an eating disorder. Seriously guys, my bowels are like a VOLCANO right now, I swear to god I will kill you all.