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Category Archives: nightmares

Where am I

Well, mostly house-bound due to the migraines and related symptoms and episodes. I go to see my therapist and to doctor’s appointments (too many), but otherwise I go nowhere right now. I missed all the winter holidays with my family (who are almost next door) because noise and light and visual stimulation would just make the migraines worse. I also did not go to mother’s day at Hub’s mom’s house, but for more reasons than the migraine shit.

I completely changed my diet for 5 months, eating no grains, no sugar, no dairy, no gluten (well, I’ve been that way), no nightshades. I’ve lost 45 pounds (that I could afford to lose, but I lost it over 3 months which is too fast) and my food anxiety is still here. I eat the same basic foods over and over again, and I don’t eat any snacks or drink anything other than water. At the moment, I continue on this very restricted diet because I’m afraid to add anything back in because it might trigger an episode of vertigo or nystagmus.

I thought I was doing better (see my last post) but then I had multiple episodes of vertigo and nystagmus again, even when I didn’t change a thing I was doing or eating. Horribly depressed, we squeezed onto the specialist’s schedule again and made the trip to see him. One of the things he had given me initially was a prescription for klonopin and zofran. He told me to take both for the drive to his office about 40 minutes away in the city. I did, and had a very disassociated conversation with myself while we were driving and waiting for the doctor. Needless to say, if I have to use the klonopin again (it’s a vestibular suppressant), I will only take half a pill.

The specialist told me I had done all I could with diet, so he wanted to put me on a preventative medication. Unfortunately, there’s no targeted migraine medication (yet), so everything is off-label for other issues. After talking about my sleep issues, he offered me a tricyclic anti-depressant at very low doses. I have medication anxiety due to my incredible sensitivity to medications of all kinds. The first two weeks I had to wait until Hub was upstairs with me and he had to literally hand me the pills. After that (and talking to my therapist a lot in therapy), I tried to just consider the pills with indifference rather than with fear or hope. I take them okay now, but…they have side effects of course (including incredibly vivid horror nightmares that I’ve woken Hub up in the middle of the night because I’m screaming in my sleep). Even at low doses, I am sensitive. And in fact, I had started making the rounds of testing and other doctors because my hands and feet started feeling incredibly cold and both fingers, toes, and feet started turning blue-purple. Talk about anxiety! I tried to reduce my dosage of the medication, but my migraine symptoms started coming back the very next morning. So after five days of that I went back up to the higher dose I’d been on for 3 weeks and I went for ultrasounds of my legs and the arteries in my legs (two different tests). I also saw a rheumatologist and then a vascular surgeon because one of the ultrasounds came back showing that I might have an issue with an artery in my ankle or something? In the end (and this is from Monday of this week) both the rheumatologist and the vascular surgeon said this is Raynauds due to the medication. It’s been suggested I wean off the meds and try something else, although Raynauds is generally not dangerous just inconvenient and annoying. At the moment, though, the meds are helping me to some extent so I need to decide which is better, stay on with side effects or go off and feel like absolute shit while trying another med that may or may not work.

So for the moment, I’m holding on the current medication at the current dosage (MAV specialist wanted me at a slightly higher dose than I am now) until after I see the cardiologist tomorrow because the meds I’m taking could have (or be having) heart implications for me. Another reason I might need to consider switching to a different preventative.

I’m tired all the time, more from anxiety and stress than anything else. Hub is still taking care of so much, and I worry about him. We have someone coming in once a month to do a heavy cleaning of the house, but Hub tries to keep up with everything in between. I barely see my family, I don’t go to any gatherings because the noise and visual stimulation is too much. I don’t see or talk to any of the few friends that I have. I don’t crochet, I don’t read, I don’t use the computer. This is the first time I’ve been on the laptop since my last post in January. I mostly use my iPad and phone, and even then not that much and it does bother my eyes and head.

Meanwhile, I need to find a new neurologist because the MAV specialist said if I’m going to change medications he doesn’t want to deal with it. Which was disappointing and frustrating. He said if his first line of medications doesn’t work with a patient, he then suggests they have their primary doctor manage other medication trials…but I don’t want migraines managed by a primary. And plus, I have to find a new primary because during this round of *shit* hitting the fan (blue fingers, blue toes, was it a blood clot or peripheral artery disease or…) she ordered two tests but MIS-ordered one of them. So I had to go to two different testing locations when I could have gone to one, and I had to pay for two tests when it should have been done in one. AND THEN when one of the tests came back she sent me a note in my portal saying everything looked fine, only I pointed out that the radiologist’s note said one of the results noted “diffuse disease.” And she wrote back, “Oh, I must have been looking at the wrong test results, thanks for pointing that out” and then she sent me referrals for the rheumy and vascular doctor. WTF. How do I trust anything she’s done or said over the 12 years I’ve been going to her? She isn’t reading the reports or paying attention to the results or whose test is whose? W.T.F. So yeah now I gotta find a new primary and start all over again with my complicated medical history. Sigh.

I hope the meds continue to make me feel less awful and that I can keep taking them. Meanwhile, I muddle along. Maybe next week I’ll be able to crochet more, or do more with the dogs, or read a few pages in a book. Or maybe I’ll feel better for a day or two. I seriously don’t even know what to hope for at this point.

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Jet plane, night 3, day 4

Yesterday’s blather.

My brother (#2 with the cray-cray ex) called me last evening to see how I was doing. I was kind of surprised but pleased, because I didn’t expect it from him. My father has been checking on me by phone, too.

I did okay last night, though I stayed up late again. I didn’t have any snake nightmares that I remember, but I was so damn exhausted when I turned off the lights and TV that I probably didn’t have the energy to dream. I was up on time to feed the dogs this morning and take them out. No sign of the snake, but I didn’t hang around looking for it either!

After that, I went back to bed, hoping that I could waste some hours by sleeping. I dozed on and off for a couple of hours, but Butthead decided I needed to get my ass out of bed (bark bark bark bark bark bark), so I gave up. Today was the slowest and least active day of the four. I didn’t cook anything or bake anything or clean anything. I ate soup for lunch and leftover takeout food for dinner. And I had gelato as a snack this afternoon because I wanted it.

The snake repellent showed up via Amazon one day delivery. I immediately took it out and sprinkled the smelly crap all over the garden and bushes up against the house. I think the smell kind of freaked out Butthead, but that doesn’t take much. I have no clue if it’ll work, but I guess it makes me feel slightly better to try doing something.

I went to visit my father (which I’ve done every day over these past four days) and spent a little time chatting with him. I talked to Hub a few times, but he’s been busy site-seeing and hanging out with his father and sister. Soon he’ll be on the plane heading home…and I couldn’t be happier. I hope the flight is swift and easy and he can rest as he wings his way home.

Took the dogs out at 10pm and saw no snakes. That was good news. Of course, I let them pee and hurried them back into the house. When Hub is home, he allows Le Moo to lounge on the patio for a while at 10ish, but I wasn’t letting her get away with that. Especially with the potential for snake-lurking.

I’ve got half a book to read, so once it’s done I’ll turn out the lights and try to sleep for a couple of hours. I have my alarm set to get up in the morning and to call my father to wake him. He’ll drive to the airport with me to pick up Hub, since I don’t like to drive the interstate to get to the airport. I mean, I could do it, but I don’t like to and my father likes to help when he can.

I’ll feed the mutts before we head out in the morning, so once Hub gets home he’ll be able to crash and try to get some rest and hopefully ward off too much jet lag. I can’t wait for this night to be over.

Thanks for sticking with me, ya’ll. I really blogged this week so I can remind myself that I was able to do this if I ever have to look back. But honestly, it did help to know you all were rooting for me, too!

Onward with night 4. It leads to a homecoming.

 

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Jet plane, night 2, day 3

Recap of night 1, day 2.

I stayed up reading last night until about 1 am, then fell asleep. Then I was up at 5:45 am and that was it, I was up for the day. I tried to fall back asleep, but couldn’t. I finally got out of bed at 7:30 and fed the dogs, then took them out. Then I went back to bed but was too restless to even doze. I had to be out of the house by 9:30 for my massage, so I just gave up and got dressed at 8:30.

I thought the massage would be good and relaxing–since I did ask for a relaxing massage and not trigger point–but I kind of felt icky and my head felt real stuffy and swollen when I was on my stomach. And my face felt swollen in the face rest thingy. Afterward I was so tired that I had trouble driving home. Then I had to feed the dogs their mid-day meal and take them out. I had hoped to rest after that, but it didn’t work out. I tried reading and watching TV, but the dogs kept wanting to go out so I kept having to get up.

On and off I IM’d with Hub as he was running errands and getting things ready for the wedding. He’s getting kind of irritated with his father at this point. They don’t really get along too well on a regular basis, and their politics are polar opposite. So Hub is feeling edgy and unhappy. He still has to get through tomorrow without going crazy, then tomorrow night late he gets on the plane to come home overnight.

Okay, so I did the dinner thing and fed the dogs and retrieved a wedding invitation from my mailbox from my cousin. I went to check in on my father to see if he got his invitation, then to remind him he needed to try on his suit, in case he needed to buy a new one. Then I came home, I took the dogs out, did their after dinner snacky, took them out again, then sat down to read and play some games on my iPad. I was able to stretch out the evening so I only had to take the dogs out again at 10pm before bedtime. So at 10pm I take them downstairs and outside. One goes one way, the other goes the other way, so I stand just off the deck on our small paver patio to wait for them. Then I see Le Moo sniffing at something on the patio about 3 feet away from me…and I step closer to take another look. It’s cicada time here, so I was thinking it was a live cicada and she was going to try to eat it–experience speaking here–and I was prepared to admonish her. And then I realized it wasn’t a cicada.

It was a goddamn fucking snake.

On my patio, right off my deck, right outside my back door. Last Friday I beat a smaller snake to death out in the yard after I nearly walked on it while picking up dog poop. Fortunately, I spotted it while still about six inches away and I hotfooted it back to the house and grabbed the hard metal rake that had been sitting on the deck. I found the snake in the yard again–out toward the back closer to the fence and the “woods” back there–and I beat that fucker to death. It took me like five minutes because the damn thing wouldn’t die…I think because there are ruts in the grass out there so I wasn’t getting good contact with it. When I was sure it was dead I used the rake to pick it up and I threw it out over the fence into the brush. I hurt my arms, my back, and the back of my legs trying to kill it.

Okay, so back to tonight. The damn snake is on the patio, brazen as you please, bigger than the one from Friday–at least 2 feet long–head up, glaring at Le Moo. Le Moo starts backing away and I order her to go up onto the deck. But Butthead is out on the other side of the snake in the yard, peeing, and she finishes and comes running back and she always runs on the patio. And of course she has to run right past the snake, which she does, but then she does a double-take and goes back… and I’m screaming at her to get away from the damn snake and she’s sniffing right at it because she’s STOOPID. So I finally order her away and both dogs into the house, and I rush into the garage to get a shovel…but by the time I get back outside the fucker is GONE. So now it’s either in the bushes right up against the house and next to the patio, or it’s in the grass somewhere.

So now I gotta go back out there tomorrow, wondering where it is. Is it lurking in the bushes? In the grass? Is it gonna jump out and BITE ME or the dogs? I don’t like killing things. Friday was the first time I’d ever killed a snake…or probably anything other than ants and spiders. Before that, Hub had killed two of them since we’ve lived in this house. We’ve never had snake problems before we moved here. I’m not happy about killing anything. But…

I hate snakes.

I have nightmares about snakes attacking me and biting me and all kindsa shit. I’m NOT good with snakes in my yard. Yes, I know they keep rodents away. Yes, I understand that the snakes in my yard are not likely to be venomous. Yes, I even understand they are not likely to actually bite unless threatened… but guys, it’s a goddamn snake and I am afraid of snakes. I’d rather let the owls and the hawks take care of the rodents and let the snakes go somewhere else. ANYWHERE ELSE. AWAY FROM HERE.

I ordered snake repellent from Amazon, to be delivered sometime tomorrow. It’s not likely to help, I’m aware, but I’m desperate to try anything to keep these things away from the house. I mean hey, live your life out there in the woods Snakey-snakey…just not here in my yard or on my patio or in the goddamn bushes next to my house.

So yeah, day 3 is done. I am managing but I’m damn tired. And I’m not looking forward to the snake nightmares tonight, or the anxiety of watching out for snakes tomorrow in real life. Ugh,

Tomorrow’s notes.

 

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Here I am

I have wanted to write new posts, but there are things that have happened and I didn’t know where to start. So I started nothing. And then more things happened and I just wanted to blurt them all out in one post, but then I thought that’s no good way to share the different types of information.

None of that has changed, but I’m writing anyway.

Mid-October, Butthead started limping again. 10 weeks after her surgery. We started her on some pain killers and hoped that she just pulled something or overdid it. I didn’t not feel good about it because it was like she was fine, then she tried to play with Le Moo, and a few hours later she was limping. But we tried to be positive about it

The next morning, I woke up and I was spotting. Spotting post-menopause and post cancer diagnosis is bad. I was entirely freaked out. It wasn’t a lot, but it was terrifying to me. I contacted my oncologist’s office and they fit me in for that afternoon with the office PA. Hub raced home from work and we made the hour trip to the doctor’s office, all the while trying not to fall right over into a panic attack. When we finally got in to see the PA, she did a (painful!) exam and decided that there was a stitch migrating out that was causing a tiny bit of blood. She saw no lesions and no other issues, so she said she would consult with my doctor, but if no one called to follow-up, I should rest easy that it was just the stitch migrating from the second surgery. Not unusual, she told me. If it continued or got worse I should call them again. By the next morning it was done and I’ve been fine since then. But shit that was scary.

Butthead continued to limp, despite NEW painkillers. And by the following week, there was a terrible CLONKING noise coming from her knee when she was walking. Not all the time, but a lot. And that’s not right. So I called our vet (my uncle) about 10 minutes after I first heard the noise and he suggested that I come in to the office for an xray. So again, Hub rushed home and we packed Butthead up and raced down to HIS office, which is 90 minutes away. He sedated her and did an xray and physical manipulations (we actually HEARD the clunk upon manipulation in the exam room prior to sedation) but he found nothing out of the ordinary. He suggested that the knee was moving more than he would like, possibly because of severe atrophy from her quad muscle. Again, I was distressed, because this seemed to happen overnight, but we went home with instructions to continue pain meds and work on building up the quad muscle, which upon tightening should keep the knee in place. However, after a week of pain meds and exercises, and the vet talking to his colleagues, we decided that Butthead needed a second surgery. So off we went for a third Thursday in a row, over 90 minutes in traffic, to the vet’s office for surgery. He found that Butthead’s meniscus (a fatty pad in between the upper leg bone and lower leg bone where the knee joint is) was smashed on one side. So he had to remove that, and in addition he put in a nylon string attaching top and bottom bone, hoping to keep the knee more stabilized while we worked on muscle building.

We brought Butthead home and have been in post-surgery recovery mode with her. She’s still limping, but much like after the first surgery. Prior to this surgery, she wasn’t using the leg at all, now she is using is more each day, especially outside the house. Hopefully this will work and we can go back to exercises in a week in order to build up her quad muscles. UNfortunately, some of those exercises include walking (slowly) up stairs, and walking (slowly) up steep hills. Both of those things are hard on MY knees, so Hub gets the brunt of that work.

Which brings me to me. I’m feeling rotten. I’m not sleeping and I’m in a lot of pain all over my body. I’ve developed plantar fasciitis in one foot, which causes me to be in pain every time I stand up from sitting or laying down. Once I walk it off, I’m mostly okay in that fashion, but when I sit down again and then have to get up, it starts all over again. Plus, the rest of my body just hurts. Fall seems to be a bad time for me, pain-wise, and I have no idea why. I’m walking like an old lady again, and yet trying to just keep going because my Mom needs me. And my dogs need me. And my husband needs me. And my brothers and Dad need me. So I push on when I have to, and try not to limp too obviously so no one knows how bad it is. Except Hub, who sees me without the mask.

I am in pain all day long, and it screws with my sleep as well. And no sleep means no restorative sleep, which means no healing of muscle pain. Which means more pain. Which means less sleep. Which all sucks very much. Let’s not even talk about the ongoing nightmares. Or the hot flashes (and hot flushes) that go on all night and through the day. Or the PVCs that are hanging around again, although they’re mostly mild at this point.

In two weeks I’m going to see a hypnotherapist to see if she can help me with the sleep and the chronic pain, and some of the health anxiety that comes along with all that. I’m mostly okay with the health anxiety (though today has been a struggle) but it does keep me from exercising, and I need to get some exercise.

Then there’s the refrigerator saga (we’ve gotten a new one but not gotten paid for the dead one, plus the new one is smaller and waaay noisy), the dishwasher saga, and new on the scene, the laptop saga. Good times.

October was a struggle and so far, November seems on par. More about that in the next post.

 

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The men-all-pause

I was really concerned about my surgical menopause, after having my ovaries removed in the second surgery. Everyone talks about hot flashes and night sweats (which are apparently hot flashes but at night) and moodiness. Among other things, of course, but those are top issues that women report. I wasn’t sure how soon I’d be feeling the effects of the surgical menopause, as anecdotal reports varied, depending on the individual. I figured mine would be slightly delayed, because of my weight–fat around your waist especially is full of estrogen, and that would likely keep me from falling into the surgical menopause immediately. But even women who are overweight often have menopause symptoms immediately after surgery, so you just never know.

I had one hot flash (so far), I think. I’m not sure if it was because I was getting a fever from an infection, but it felt like what I’ve heard a hot flash feels like. But beyond that, I haven’t had hot flashes, per se. I just…get hot. And then I get cold. And then I got hot again. Especially at night, I go through this cycle of having the ceiling fan on and an oscillating tower fan right next to the bed, and I start with my sheet and comforter on top of me. Then I get hot, so I throw off the comforter, then I throw off the sheet. Then I get cold, so I pull the sheet over me, but that’s not enough because the oscillating fan is blowing RIGHT ON ME, so I have to pull the comforter over me to get rid of the chills. But then I got hot, so I get rid of the comforter, but I’m too hot for the sheet, so I throw that off again. Then I’m cold, because FAN BLOWING ON ME, so I yank the sheet over me again, and then the comforter. And then I repeat this cycle. At some point, I know I fall asleep, though I don’t think there’s been a pattern of whether I have the sheet and/or comforter on or off me. I just know that repeatedly through the night I wake up and go through the cycle of hot cold hot cold sheet comforter sheet comforter hot cold hot cold. And no matter how many times I wake up and go through the cycle, it keeps me awake for about an hour as I cycle through the hot cold sheet comforter routine. I don’t really SWEAT like a lot of women talk about (sweating through their night clothing and/or sheets), my internal thermostat is just messed up. But really, I don’t sweat too much anymore unless it’s really humid out and I’m working my ass off at something, then it’s like face sweat and, well, boob sweat, but not all over sweat. So maybe I just don’t sweat enough to have night sweats. Either way, this hot cold cycle is annoying and unfortunately affects my sleep, but it’s manageable. Because I don’t sleep well most of the time anyway, so this is nothing new.

I thought for a while I was having dry mouth from the SM, but that went away about a week after my last round of antibiotics (from the incision infection). I am having some headaches, which could be the SM or it could be allergies. I’m pretty new to these spring and summer allergies, so I’m still trying to figure out what is an allergy symptom and what isn’t. My hair isn’t falling out, yet, and I’ve had no moodiness. None, zip, zero, nada, zilch. I thought that would be a big thing for me, because I do trend to moodiness, but nope. No crying jags, no anger, no swing from happy to sad. I’ve been pretty okay–moderate–and I keep wondering when it’s going to hit me. More than the hot flashes, even, I thought it was going to be moodiness. I warned Hub, and apologized before I even went into surgery. My fingernails, though, are bad. I’ve always had issues with my fingernails, but over the last ten years or so, they’ve been pretty good. They would grow fast, and if I kept them trimmed to a certain length, they weren’t too prone to breaking. And they grew at a pretty good pace. Now they’re breaking all over the place, and not growing back very quickly.

What is most distressing for me at this point is the fact that I’m losing words. Or not being able to find the words I want. Hub has found himself jumping in to try to finish sentences for me when I stop to try to find the words I want. The words that might be just out of reach, or totally out of reach. I find myself pausing a lot, searching for words when I speak, searching for words when I’m writing something (an email, a blog post…doesn’t seem to matter). I feel like something is wrong with me. I mentioned it to Hub who suggested it might be the hormone shifts, and I think I read that somewhere, but I’m not 100% certain. Whatever it is, and I hope it’s SM, it’s scary and frustrating and distressing. I’ve always been someone who thinks thoroughly before I speak, but I’ve never had this much loss for words.

I have had much more muscle pain, which can also be a SM symptom. I saw the massage therapist last week and she beat the hell out of me. I was actually hurting for three or four days before it started to recede. But again, I do have myofascial pain syndrome, which is a muscle disorder, so it could be that I’m in a flare because of all the hormonal changes (and the physical stresses I’ve been under because of the surgeries and because of the care I’ve had to give to Butthead after HER surgery). It’s so hard to tell what is SM and what might be something else.

I’m having lots of dreams and nightmares…much more than before. Prior, the dreams would generally happen in the morning, after Hub got up but before I would get out of bed. Now they’re happening all night, and when I wake up and go back to sleep, I fall back into the dream/nightmare again. They’re vivid and uncomfortable dreams, and they generally leave me feel unhappy and distressed.

Oh, and the hormonal acne shit is driving me a bit batty. I thought with the lack of hormones, the monthly acne would go away. Nope, instead it has gotten worse. It’s all along my jawline, my chin, along the sides of my nose and nostrils, and around my mouth. Prior to the surgery, I would have one or two pimples per month, but now I’ll have several at a time. It’s frustrating because I don’t know what to do for it. Before I would wait it out because, well, hormones. Now, if I don’t really have hormones, when will the damn things go away? Bleh.

It’s still possible for other symptoms to crop up at any point. I have my fingers crossed that nothing gets worse and everything gets better, but I’ll do my best to cope no matter what comes.

 

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1 degree of madness

This recovery has not gone well at all.

The surgeon told my husband and mother in the hospital (while I was in post-op recovery) that the surgery went “perfectly” — it only took 30 minutes versus 90 and I lost no blood.

When I woke in recovery, I felt awful and dizzy and nauseated. They moved me to a cube where my husband and mother were waiting, but I couldn’t open my eyes and there was some kind of goo all over my face (forehead, cheeks, nose–which later I was told was from the tape from the breathing tube, but I didn’t have that issue last time). I was so dizzy that I couldn’t open my eyes. I hurt all over. I stayed in the hospital longer this time than the last time. They took me into surgery early (like 8:30am) but we didn’t leave until 5pm. That was over an hour more in recovery this time.

On the way out, the nurse handed over prescriptions. We were both horrified to see the surgeon was sending me home with injectable blood thinner. I had to inject myself in the stomach once a day subQ for fourteen days. I HATE NEEDLES and Hub is so terrified of needles that when he has to have his blood taken for testing, he has to go to a specific lab that has a gurney because he has to lay down because he has passed out in the past. Hub tried to get the injections from the hospital pharmacy so the nurse could demonstrate the first injection, but when he got there they were closing. FUCK.

So we came home and he went back out to put the prescriptions in. The prescription said to start the shot the next day, so I tried desperately to ignore the thought. First night, Hub helped me clean the area with alcohol and I gave myself a shot while he was looking in the other direction. The shit burns…for like 20 minutes afterward. It’s bad. I hate it. I have four more to go.

Saturday night I went to give myself a second shot, but I was really cold. But my face was so hot. So I gave myself the shot, Hub gave me an ice pack for my face, and then he put a blanket over me because I was shivering uncontrollably. And then I had a full-on anxiety attack. I was lying prone on the bed, head covered with the ice pack and a towel, body covered with a blanket, feet up on a pillow, crying and shivering and it was terrible. TERRIBLE. Overnight that night, I was SO HOT. I was sure it was from the surgical menopause. I didn’t sleep, I sat up all night feeling hot and sweaty and miserable. The next day, Sunday, I was pretty miserable. I was able to do my shot that night without another anxiety attack, but I was so hot all the time. I finally started taking my temperature when I couldn’t sleep again. I have 3 thermometers… two oral and an ear one. Two of them were new because I thought my old thermometer wasn’t working right so before this surgery I ordered a new oral and decided to try the ear one. By 1am, all three were reading 101 or over. The surgeon said if I had fever over 101 to seek attention. I woke Hub and we had a long conversation about what to do…ER, walk-in clinic, wait for the morning. He HATES the ER because no matter when we’ve gone, it’s always been mobbed and we end up having to wait forever to get out of the waiting room. It’s a terrible process there…they always seem overcrowded and understaffed. Our choices were limited and I was so freaked out about the fever, that we headed out, leaving the dogs alone in the house because I didn’t want to wake my parents and scare them if we could get in and out at the walk-in clinic. So at 1am Monday morning we headed out, but the walk-in clinic was locked up and closed down, even though the hours showed them as being open.

So at 1:50am, I checked in at our local ER. My temperature on their unit was 100.8 and my pulse was high. I felt like I was burning up. The triage nurse offered me ibuprofen or tylenol but I said no because I had just seen the terrible new report on NSAIDs and heart issues (also the reason why I’ve taken NO pain killers after this surgery). So we sat in the ER while I was hot and cold, waiting for someone to call my name. They took me back for blood and urine and an IV, then sent me back to the waiting room. By about 4:30am, when the triage nurse came to take my temp again and it showed 101.3, I took the tylenol. It was another hour plus before they took us back to a cube. The nurse came in about half an hour later and took my vitals again…the fever went down somewhat and my BP was low. About twenty minutes later, the PA came in and said my bloodwork indicated an infection…probably a UTI. She did a physical, then decided to send me for a CT (with IV contrast) to make sure I had no abscesses from the surgery. Went for CT after giving more pee for a culture (which the next day came back inconclusive), then waited around for IV antibiotics. CT was negative, so they gave me the IV antibiotics and by 8:30am they sent us home with a week of oral antibiotics. Hub and I both went home and straight to bed. He slept

For two days I suffered with the fever, taking tylenol every six hours to keep it below 100 degrees. I’ve never had a UTI before, so I had no idea about the symptoms, even though the PA asked me and the surgeon’s office asked me (when I called to report in Monday afternoon). I thought I was just recovering from surgery and the pain was from that. I thought the fever I had was just hot flashes and night sweats. I just had no idea.

Did I mention also that my baby tooth and the surrounding gum has been irritated since surgery? Even though I told them about the tooth, I think he bonked it. And I don’t have the energy (or the immunity & stamina) to go to the dentist and have them rip it out. Plus, I’m on blood thinners, still, so I suspect going in to have the tooth removed right now is probably not a good idea.

I’ve been SO tired during all this. I assume it’s not just the (second) surgery, but also recovering from the infection. And also the antibiotics are making me nauseated 24/7. I get out of bed and within an hour or two, I can barely keep my eyes open. Then the rest of the day I’m struggling between trying to rest and being exhausted. I am not moving around nearly as much as I did after the first surgery, so despite the fact that I DESPISE the injectable blood thinner, at least it has helped my anxiety somewhat about the blood clots.

I’m also struggling from nightmares about the cancer and tomorrow’s follow-up appointment with the surgeon. I know he’ll have the pathology report, which will set me forward to the next step in this journey. At the very least, I made it through yesterday (Sunday) without a telephone call from him (which is how I heard about the cancer initially, with a phone call from him on a Sunday during lunchtime). It was harder than I thought to go through the day yesterday, as every time the phone rang, I was sure it was going to be the surgeon with bad news…

It has amazed me at how I could tell the different between 98.6 on my thermometer and 99.1. I can feel the heat start, I can feel the chills start. It’s not even a full degree difference, and yet I could tell when it was time to check my temp and take more tylenol. It’s the same with the house thermostat…there’s a major difference for me with 1 degree whether it’s the heat or the a/c. Is everyone else so sensitive? (this was the reason behind the title of the blog post, so I figured I’d better explain the non-sequitur.)

 

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Rinse and repeat

So here I am, just days away from surgery number two. I wrote about my pre-surgery nerves in this post last time. I’m feeling pretty crappy these days, some of which is because I haven’t been sleeping. I’ve been having nightmares and I’ve felt overheated at night. I’m terribly heat intolerant, so it keeps me away and/or wakes me up when I’m too warm. And of course, if I’m warm when I try to go to sleep, then I can’t fall asleep. So it’s been sucky sleeping lately. Not a great way to go into surgery, I’m sure. Also, my throat has been dry in the mornings and my nose feels stuffy. I’m hoping it’s allergies, because I can’t take the thought that it’s a cold, which might (or might not) postpone my surgery. No fever, so I feel like just a cold won’t be an issue, but my anxiety makes me worry about it. Repeatedly and often. Woo.

In my previous post, I talked about all the prep work I was doing in advance of surgery. I re-read the post and feel kind of embarrassed at how much I was doing. I made all that food and ate none of it. I got all that yarn and used none of it post-surgery. I borrowed all those books and it was over a week (or more) before I could read anything. I used almost none of the things I packed to take the hospital. Even so, some of it was worthwhile. I’ll be changing and washing sheets in advance, because I like the comfort of the laundry detergent when I get into bed. Hub will be getting me deli turkey and making me gluten free biscuits because those were the two things I ate for the first two weeks, almost exclusively (great diet, eh?), along with plain water. So no soup, no lemonade, no mushrooms and cheese…that was all a waste of time the first time.

I’ll pack my small bag for the hospital with pain medications (leftover from the first surgery, so we don’t have to pay for them a second time), my gluten free chewing gum (peppermint, to get my stomach working again), and my pillow for the ride home. I’ll have my lip balm and my cell phone and my advanced directive (again). That’s pretty much it.

I’m still going to the library tomorrow, so I don’t have to go soon after surgery, but I know now that reading will be nearly impossible the first week. Even watching television was nearly impossible, because my brain just wouldn’t focus.

And on top of things, I’ll be worrying about surgical menopause. Woo hoo. There are horror stories about this, and I’ve been trying really hard not to read them. I talked with T about them at my last session, but I’m not sure I can be reassured about this. I’m mostly worried about the insomnia…and then the possibility for increased depression and anxiety. There’s a whole host of new symptoms for SM that I’ll have to learn, and that my health anxiety will have to feed on. I’m wondering if acupuncture might help. I’ve been trying to read about it, but I know full well that acupuncture doesn’t always work for everyone.

I finally saw the massage therapist last week. It was so nice to have her work out some of my muscles. I wasn’t able to lay on my stomach, but she was able to work most everything while I was on my side. I can’t say how much it all helped long-term, but it felt really good during (with the exception of the trigger points which generally hurt like a mofo). I really hope I’ll be able to get back to her more quickly after this surgery than after the first. My muscles really took a beating after surgery.

No matter the fact that I went through this surgery (basically) once before, I’m nervous. I know now how it is going to feel to wait in pre-op…and how I felt in the post op, and how gross and out of it I felt in recovery. And on the way home. And the immediate days following. I made it through, obviously, so I get that, but it doesn’t mean it was easy and/or no big deal. In the back of my head, I’m also thinking about actually making it through the surgery. I’m afraid. I don’t know another way to be at this point.

My PVCs have mostly dropped off in the last two weeks or so. I had some last night, but they were mild and didn’t last very long. I hope that continues, because I can do without those.

 

 

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