#my health
Feeling Sick
Chronic nausea is something I have suffered from for about 11 years.
When I stopped being able to breathe, about 6 years ago, I was living in an apartment with two roommates. Over time my ability to…. well breathe was compromised so often that I ended up in the emergency room. Thinking I had developed some sort of lung issue or asthma of some sort I went in thinking I would find out and be cured- only to discover that the truth was I was having such intense panic at all times that my body had gone sort of into shock and wasn’t allowing me to breathe without other (usual) physical or emotional symptoms. The other thing they guessed was some sort of chronic heartburn causing me to be nauseous all the time, yet exacerbated by the stress of the panic.
After a while I got the breathing under control, a symptom that still comes in week or month long waves when my stress and anxiety levels reach their peak, but the nausea and heartburn is something that has always truly escaped me. When I started feeling this way I never thought it would go on for so long, yet looking back, obviously it has.
Being ill is never easy. It took me so long to understand how my body was reacting to my moods, emotions, and especially what I ate.
I do believe for myself everything is such a delicate balance- I walk a tightrope of medication, therapy, and diet to try to keep myself from falling off, but I fall often, and often hard.
Today I feel so incredibly sick. The nausea and bodily discomfort is so horribly intense that I will without a doubt have to sit propped up against a wall of pillows to sleep. I’ll have to make sure I stay far away from trigger foods for quite some time, and really put more work into reminding myself that I don’t like to feel this way.
Tomorrow I go back to work, to work on my art, my apprenticeship, and my career.
One like = one “good luck” for my work week
3rd shot in the arm today!! Whoohoo! Who’d have thunk I’d be psyched to get a shot. TBH, I have been nervous because - even tho my test results showed I made some antibodies - I am on one of the meds listed as preventing ppl from making a high amount of antibodies. Like my Drs just haven’t been sure if I’ve really been protected. Hopefully now I am. #GetVaccinated to help protect me even more! (Seriously, I don’t wanna get Covid. Pls help protect me. This has been my Ted Talk).
It was 10 years ago today that I looked down at the pills laid out in front of me and made a life-altering decision. I had been trying for months to scale back, ween myself, anything I could to get off of the pills. I talked to someone in my family who had gone through something similar for advice. But no matter what I did, I just seemed to keep digging myself into a bigger hole. I couldn’t call my doctor out of fear of being blacklisted for any future medications that I might, and most definitely would, need as my degenerative disease got worse. But I needed to do something. I *had* to do something. I was staring down a very black hole.
On this day 10 years ago a little voice inside of me spoke up and told me that the next choice I made was going to be between my future and my end. My life and my death. And so I chose.
I chose Life.
Today is my 10 years sober.
I did not fit into the MRI. I will not fit in other MRIs in my general area by about 15 CM. Fun! So, because my doctor does not have the imaging, he is going on the CT scan from October 4th. He says he is not convinced enough that it’s cancer to start me on medications that will make me sick. Additionally, if my cancer has spread and that is what is showing up in the liver, then the health effects won’t be too bad in the next couple of months. So he wants me to have another CT scan in January 2022.
However, if it is cancer, if my ovarian cancer has spread to my liver, then it is incurable. It is treatable, but not curable. It will be stage 4a ovarian cancer.
Say it with me: recovery takes time and I am worth that time.
Honey, I’m hoooome! Got home yesterday actually. Doing pretty good, worst part is finding the perfect position, perfect angle, pillows arranged perfectly…and then never being able to find that sweet spot again after a bathroom break. Plus, my other joints are protesting this much time in bed. But I’m way more alert than I expected to be. And I feel so loved. Not by your outpouring, tho that was nice…but because the cats have been all over me since the second I got home. Hiccup, who never stays more than an hour for a snuggle, slept the whole night through with me, 10 straight hours. Pippin has been right next to me all this morning, everytime I open my eyes he is just staring at me. And Ripley & Kirk, who generally only spend time together if they’re fighting, are currently laying just 6 inches away from each other so that they can both have me. Diggle has frantic happy tail everytime he sees me and remembers that I’m back…sadly we took the ottoman away from the end of the bed so he can’t get up, safer for me that way. He doesn’t understand why he’s been banned from the bed. I have moments of frustration thinking about the slow road ahead of me with recovery. I mean, this sucks. But compared to the left hip surgery a few years ago, my pain & mobility this soon after surgery is hella impressive. Home PT starts on Monday, just to make sure my other joints don’t lock up (worse than they already are) while I’m recovering. And that’s about it from here.
I’ll say it again…if you wanna do something for me, Go Get Vaccinated. I found out 24hrs in that my roommate wasn’t vaccinated. I wore my mask most of the time, but there was one point where I forgot to put it back on after lunch and dosed off for four hours, only to wake to a convo with the nurse trying to talk my roomie into getting her vaccine because no rehab facility was willing to take her otherwise. I was shook up when I heard that. Why in the hell would they put a severely immune compromised person in a room with an unvaccinated person?! Idfk, but I’ll feel better both with my pain level and with my fear that Imma wake up coughing, once I hit that 2 week mark, ya know?
I suppose you’re all wondering how my surgery went? Welp, it didn’t. The tl;dr is that they needed a special part that didn’t arrive in time and they’ve rescheduled me for September 22.
So like, basically they needed a special part for me because I’m a complicated case - it’s a replacement of a 1997 replacement and I have a femur rod in from breaking my femur years back and my original replacement was locked in there with cement, so it’s a complicated situation - & they had to order the special part, but like because of the holiday weekend, it didn’t arrive in time. But they thought it would, so I did the whole no food & drink thing, no pain pills, anxious mess, little sleep, showed up in my pajamas, waited curled up on 2 little chairs that were pushed together because I hurt too much to sit up, in a very cold waiting room, that’s like literally in a hallway, like their pre op waiting room is just a bunch of chairs in the main hallway, three hours before they called me back, where I then changed into a gown, started answering all their questions, had to use a Hoyer lift to get onto the bed because for some reason Ortho Surgery doesn’t have stretchers that drop low enough for wheelchair transfers even though they have all *Ortho* patients, which then the Hoyer lift caught my bad leg and the nurse had to twist it loose and it hurt so much and then another nurse came a minute later, and not having seen what had just happened, also grabbed my leg and started wrenching me around while the first nurse was like, “no, don’t do that!” but too late, and then the dr came and was like, “bad news” but the last time he said those words to me minutes before I was to be wheeled back to surgery it was to cancel so I was like, “WHAT WHY” and then I was like, “ok just go away then, I can’t even right now, I’m so hungry, tired, in pain,” and the nurse ran a off and came back with a big ol plastic bag filled with crackers, chips, pudding, applesauce, sodas like I had just robbed a vending machine. And I came home and ate and slept and cried and slept some more. And drank water, oh god so much delicious water. It’s the worst part about being NPO is the no water part. I’ve been rescheduled for September 22.
So I get to spend 2 more weeks in severe pain. And that’s like, Chronic Pain Sufferer’s *severe pain*, not just any ol pansy level of pain either, cuz my tolerance is high and I’m still over here whining like a pussy. I know they had me come in and everything because they thought it would arrive in the mail that day, but like, if they knew they had to order a special part, on a holiday weekend, like I don’t care how bad off my hip is that they felt they had to rush my surgery, they shoulda never tried to fit me in when they knew they had to special order a part on a holiday weekend. I can’t believe I have to go through all that pre op shit and the psychological prep in my head like all over again. If this is how the U of M - one of the top hospitals in the whole country, that people come from all over, from like other countries even, to have surgeries there - if this is how completely non-professional they act, what the fuck are other hospitals like?
Just agreed to do research surveys since just sitting here waitin, but 1st 1 about opioids I take & now sweatin wondering if I shoulda put that shit on file, which is ridic bc already in my med file but this is more accessible to outside sources idk.
Welp, 24 years after they first replaced my right hip, it’s time to do it again. Saw the surgeon today & he said, “Looks like it’s time. I got an opening on Tuesday, you want it?” So I said Yes. It’s been popping & rolling worse as the summer has gone on. He said he thinks the joint is gonna fall right out once he opens me up, lol. But I’ll say, 24 years is nothing to scoff at! But, of course, no one likes having surgery. For me, the IV, the anesthesia, the glaring overhead lights in the operating room - that shits all traumatizing AF. TBH tho - as long as there’s no post-surgery nerve pain like with my left one a few years ago (please let’s not have that again) - the surgery day & the day-after will be the worst of it. After that it’ll just be rest, reruns of Bob’s Burgers, the Hogwarts Mystery video game my nephew turned me on to, and recovery exercises for a month or so. Sadly I’ll be missing my baby cousin’s wedding because of this, le sigh. Anyway, I’ll post on here when I feel up to it. With surgery on Tuesday, it may be Saturday before I remember to let you guys know how it went. I’m hoping I’ll be on the good drugs until then…though don’t get me started on how they told me to reduce my pain meds *now*, so I can raise them up again post-surgery. I was like, “But…I’m in pain *now*. That’s why I need the surgery.” Where’s the logic in this? I’m on 4 Norco a day currently. That’s the max and even that, my liver dr is not thrilled about because of the Tylenol in it. Idk what they’re plan is for pain control post-surgery, but I don’t wanna have to beg & plead for pain control that does the trick & doesn’t overload my liver. I do not want to be on Oxy a single day longer than I have to, but I also want proper pain control when I need it. Being in extreme pain is only going to hinder my recovery, after all. So cross your fingers the surgery goes well, there is no nerve damage, & they aren’t picky with my pain control. ✌
3rd shot in the arm today!! Whoohoo! Who’d have thunk I’d be psyched to get a shot. TBH, I have been nervous because - even tho my test results showed I made some antibodies - I am on one of the meds listed as preventing ppl from making a high amount of antibodies. Like my Drs just haven’t been sure if I’ve really been protected. Hopefully now I am. #GetVaccinated to help protect me even more! (Seriously, I don’t wanna get Covid. Pls help protect me. This has been my Ted Talk).
In last 21hrs, I’ve slept 15hrs. Had a chaotic, exhausting but ultimately v nice weekend but damn, apparently I needed rest. Feeling pretty good now.
5hrs of D&D Friday, 3hrs of The Niece Saturday, 5 more hrs of D&D Sunday. I think I forgot I’m disabled & severely lacking in energy. Shit. But I remembered today. Holy hell, did I ever remember today.
Today I had to take a new medication. It’s a laxative powder, so it’s not something that the majority of people have an allergic reaction to. However, I am not the majority of people. I have the strangest reactions to stuff. I’ve had two anaphylactic shock reactions to medication. I had one side effect that three different doctors told me was not a side effect of the medicine I was on, but I went and read like every word of the drug study that was done when the drug was initially being tested and yes indeed, 1% of the people had the same reaction that I did.
So yeah, tonight I had a bit of a freak out for a couple of hours over taking this new medication. I felt lightheaded and short of breath - was that an allergic reaction or was it an anxiety about having an allergic reaction? I was suddenly overwhelmed with fatigue - was that an allergic reaction or was it because I spent the day at the doctor and it was now 8 clock at night? I can’t even trust my own senses to tell me what’s going on in my body anymore. I second-guess everything because of my anxiety. It has been two hours now, so I think I’m probably good tonight, but I hate that past experiences have sent me into such a state that I can no longer tell what’s actually happening in my own body.
When I tell people that I have a severe anxiety disorder related to my health problems, they tend to say “Oh, that’s totally understandable.” But at the same time, I don’t think they really understand. How could an abled person possibly understand what living like this can do to your mental health? I’m living it and even I don’t understand.
This post is so relevant again today. Just tweeted this on Twitter & then remembered this post on Tumblr, lol.
“Just took a new med, every time I take a new med for the first time I exist on the edge of a panic attack. #spoonies #lifeofaspoonie
Allergic reactions to medication in the past include rash, hives, muscle spasms, seizures, anaphylactic shock (twice)
First anaphylactic shock I remember being at dr and him cussing over a busted oxygen tank he wanted for me as i couldn’t breathe…
… & the next thing I knew I was waking up in an ambulance.
This is a med for yeast infection, prob not allergic, but anxiety is 1000x right now.”Response: Jesus. Are you all right?
“Been over 1 1/2hrs & no allergic reaction yet. Thank you for asking! Still hyper aware tho, waiting for shoe to drop, hope it doesn’t.”
Update: Now 4hrs out. Think I’m in the clear! Still not 100% but pretty sure.
Relevant again. I am totally having a mild panic attack. Not a mild “pancake” like autocorrect tried to make it. But a pancake might make me feel better. Hate taking new meds! I’m so freaked right now! And even if I don’t have an allergic reaction, the side effects for this particular medication are dry mouth and confusion, two things I have in abundance as is. This sucks.
