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I look normal

Yeah, I look normal. Fat, but normal. Short, but normal. Brown-haired, brown-eyed, but normal. Rosacea-faced, but normal.

I’m not “normal”. I have invisible illnesses. I have issues that most people wouldn’t understand. I have to do things and live in ways that most people can’t understand.

I loathe being judged for how I manage my life. It’s rude, it’s insensitive, it’s unkind. If you don’t know what someone is going through, consider giving them the benefit of the doubt. Consider that someone outside your tiny world is living their life the way they have to for their own reasons.

Once again, our air conditioning is not working right. We have an upstairs system and a downstairs system. It almost seems like our upstairs system is FINALLY working properly after years of instability due to refrigerant leaks that no one could find the source of. But now, our downstairs system is acting up. It’s been tripping our circuit breaker randomly. Seems to be at the end of long, hot days, so we assumed it was being overworked. Then it started happening more often recently. This morning, it was tripped when I went downstairs first thing this morning. So I went to the electrical panel and reset the breaker, assuming it must have tripped last night because of the humid weather. Before I could leave the room where the panel is, I heard the circuit breaker trip again, almost immediately. I went back to reset it, but again it tripped right away.

We’ve already had an electrician out to check the breaker, which is fine. Last week, we had an a/c guy out to check the system because of the repeated tripping of the breaker. He found nothing, but suggested that based on the symptoms, it was likely our compressor was going bad. It’s not even six years old. But he wasn’t confident that was the problem, so he left with the suggestion that we consider a maintenance contract, but because we’d already established a potential problem, the contract wouldn’t cover that. So WTF was the reason to get the contract? Now, today, the breaker wouldn’t stay on, it kept tripping, which meant a call to another a/c company to see what THEY had to say. Which also meant in today’s hot and humid weather, we had no a/c on our main floor.

I have incredible heat intolerance, and my body does not regulate heat/cooling very well. That means if I go outside and it’s hot and humid, when I come inside it takes me hours to cool off, even when our house is well-climatized. In addition to the heat intolerance and regulation issues, I also now have hot flashes to deal with. If you have hot flashes, you know that for some reason your body does not dissipate that heat very well. It’s like you are being boiled like a lobster without any relief. I wear sleeveless shirts every day, all year round. I overheat so easily, it’s ridiculous. And once I overheat, it can linger. I keep ice packs in the freezer to help me when I get desperate for relief. Also, parts of me get cold from being in the cold (fingers, toes, arms), while the rest of me is hot. WTF.

The a/c guy who came today did all his tests, got the system running, but couldn’t find the actual problem. Could be X or Y or Z. Potentially Z could be the compressor, which turns out to be almost $1300 to replace, not including parts as those are under warranty. The a/c guy, as he was taking my money for the visit, asked what we normally keeping the house temperature at. I told him 65 degrees (although upstairs it’s lower) and he looked like he wanted to pass out or throw up. He told me that’s probably why the compressor is giving out so soon. He told me, “you’re killing your compressor. you really need to have the house set at 70 degrees. a normal setting would be 72 degrees.”

When the house goes up ONE degree, I can tell. When it’s 2 degrees over what I’m accustomed to, I get hot. I know when the a/c has tripped the circuit almost right away. This person, who has no idea about my life, my pain, my heat intolerance…he has no right to judge how I keep my house. Of the things that I have to live with, this one I at least have some ways to help myself. I keep my house like a refrigerator because I have to. I don’t have a choice. I didn’t choose to be this way. I didn’t ask to have these issues. I am living the way I am because I have no other way to live.

I can’t even tell you how difficult it is to be this way and have to be somewhere other than home. Heat can trigger a hot flash, which exacerbates the problem. Even at my dad’s house–where he keeps his a/c at 72 degrees–I am incredibly uncomfortable. In restaurants, I am always hot, which really ruins what could be a good meal and a relaxing evening. Go to someone else’s house? The doctor’s office? A store? A movie? A concert? The library? The hair salon? Even in a cotton tank top, I overheat. It SUCKS.

I’m still feeling crappy. Almost all my joints hurt. All my muscles feel weak. I’m really tired. Next week, I have an appointment to see a neurologist because my primary has no clue what to say to me. She went through the suggestion of virus, sinus infection, allergies. She told me to move around more, to drink more, to rest more. I have trouble getting up on my feet, standing on my feet, walking, sleeping, sitting, bending, moving…I’m going to have to explain all that to the neurologist who knows nothing about me. I’m hoping for compassion and understanding and open-mindedness. I expect none of it based on previous experience with doctors.

People who look at me don’t see my pain. They don’t know from looking at me that I have a shoulder impingement so I can’t lift my arm, or pick things up, or weed my garden. That random movements of my arm sends shooting sciatica-type pain down my arm. Sometimes petting the dogs hurts. I can’t put my clasp bra on normally anymore. Pull-over bras are almost as difficult to get over my head. Pulling shirts over my head hurts. Opening doors with that arm hurts. Reaching for soap with that arm hurts. They don’t know from looking at me how much harder it is getting every day for me to wash my hair. I can’t shave my armpits because I can’t lift the bad arm and I can’t reach the other pit with the bad arm. They don’t know that standing on my feet hurts my ankles and my knees, or that bending over hurts my shoulders and my neck. They don’t know that sometimes (but not every time) turning my head can instigate imbalance. They don’t know that when I stand up (or sit down even) it feels like the muscles in my legs might not support me, and/or that I feel like I’ve run a hundred miles (but really I can’t even walk a mile). They don’t know that I can’t pick things up because my arms feel weak, and I often worry I’ll drop whatever I’m attempting to pick up. They don’t know that I worry that I can’t take care of myself during the day, let alone take care of my dogs, because of these things they can’t see.

I look normal, but realistically I am anything but. You can’t see it, but it’s true. It’s anything but easy, but this is the only life I have. I already know that I have to spend more, do more, prepare more, worry more because of how I am…you poking at me for having to do those things is cruel. You judging me for how I have to live my life is shitty. Don’t do it.

(obv this isn’t aimed at my readers, so take no offense, I just needed to rant)

 

 

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Viral return (not)

Friday of Father’s day weekend, I was back in bed shortly after lunch. It was reminiscent of that time period starting in February and lasting through to May, when I was then diagnosed with a sinus infection. At the time I was diagnosed with the sinus infection, I began to wonder if the “down” period I’d been having–which was being blamed on a virus by my doctor, and grief by my therapist (and me)–was actually the result of the sinus infection. Shortly after the anti-biotics started kicking in, the fatigue started going away. I was not splayed out on the couch all the hours I was “awake”, and I wasn’t falling asleep in my food. So I came to the conclusion that it was the sinus infection knocking me out, and I went about my life.

But the 16th, it hit me just after lunch and I ended up going back to bed shortly after eating some soup. I had plans to go out with my brother and his new girlfriend (our first meeting with her) Saturday night, but the way I’d been feeling on Friday, I wasn’t sure I could make it. I spent most of Saturday in bed again, feeling exhausted but not sleeping. It was so frustrating. I was nauseated almost all the time, felt off-balance, weak, and just plain worn-out. I hauled myself out of bed to go out to dinner with Hub and my brother and his girlfriend, but basically felt like crap all evening. Sunday was Father’s day and we were supposed to go over to my father’s for a cookout. I stayed in bed most of the day with the hope that I would have enough energy to make it through the evening at Dad’s. I didn’t do much of anything once we were there, I ate very little (which was how I’d been eating since I started feeling shitty, because the nausea is so bad that everything looks and smells gross…), and we stayed only long enough to eat, chat a bit, and that was it.

Monday morning I made an appointment to see the doctor again, but instead of staying in bed, I tried to go back to my normal routine. All the times I’d been in bed, I wasn’t sleeping…I was just lying there thinking of how tired I was. It felt stupid, so I decided to just stay awake in my recliner and try to act as normal as possible. As the day went by, I decided that I needed to get back to my cardiologist. The extreme fatigue and nausea and weakness was enough to spur me to make an appointment with him, even though I doubted it was a heart issue. I didn’t want to wonder, and it’d been a year since I’d last seen him. I decided that there was no reason for me NOT to go see the cardio, so I made the appointment.

As it turned out, I had both appointments on the same day, one in the morning and one in the afternoon. I saw the cardio first, and even though there was a scheduling snaffu, they saw me anyway. The doctor did his regular exam, talked to me for a bit, reviewed my tests from my primary earlier in the year, and did an EKG. He said he saw nothing to suggest there was a heart issue, that my test and exam were both normal. But, he said, since I’d had the stress test last year, he suggested I go ahead and get an echo-cardiogram to round out the cardiac testing. So they set me up with an appointment for this week (tomorrow) at their other office, which had an opening sooner than the local office.

I went in to see my primary that afternoon. We talked about how I was feeling, then she did HER exam. She asked if I was getting the same *smell* as when the sinus infection was diagnosed last time and I said no. I don’t think I am, though sometimes I get the phantom idea of the smell… But since it’s not consistent like it was last time, I think I’m imagining it as the memory of what it was. Without any other options, my primary suggested it might be allergies. Her thought was to try allergy medications to see if it made me feel better, and then to consider seeing an allergist. Last time when she didn’t know what was going on, it was as virus. This time, allergies.

So I said THANKS, gathered myself and left the offices. I did make an appointment with an allergist recommended by my cousin, who is a pediatric allergist and whose husband is allergic to everything and loves his allergist. Sadly, they can’t see me until mid-August. So I have to decide what to do between now and then.

Although I am still tired, it’s not as all-consuming as it was that Fri-Sat-Sun, and I’m using a homeopathic nasal spray (with capsacin and eucalyptis) to try to keep my nasal passages open and draining. So if there is a potential for a sinus infection brewing, I’m at least keeping the sinuses draining instead of stagnant. It’s an interesting spray, with not as much burn as I’d expected. It does seem to keep my sinuses open, so that’s good.

Prior to all of this, I also saw my orthopedic doctor about my left shoulder. I can’t raise my arm above shoulder height, and moving it in certain directions is incredibly painful. He took an xray, did a physical, and pronounced me with an impingement. I gotta get in to see the physical therapist to start working on it. He said if PT doesn’t work, it’ll be a steroid shot. Ech. I haven’t made an appointment yet because I’ve been run-down with everything else.

July is going to be mobbed. I have my 2 year cancer check, which will include a CT scan after my visit with the gyn onc. I also have a trigger point appointment, I need to get my hair “fixed” for my cousin’s wedding, and…well, I’m going to see a psychic-medium about my Mom. And then my cousin’s wedding. Plus we need to find a dog-sitter for when we’re at the wedding. I’m not sure when I’m going to fit in PT. Ugh. Of course this arm-thing has been going on for several months, so it’s not like I don’t know how to deal with it…

Did I mention the wedding at the end of the month is a FORMAL wedding? At a local Four Seasons fancy-shmancy hotel. I had to find a formal gown (A GOWN), I had to find shoes (I hate shoes), and just tonight we went out so I could get the dress altered because it’s too long and I hate the sleeves. But I liked the rest of the dress and it was on sale so I bought it and just told the seamstress to hack off the sleeves.

AND I’ve been helping my father clean some stuff out of his house for donation. Which means I was also cleaning some stuff out of MY house for donation. Hub and I stopped tonight and dropped off a ton of sheets and blankets (and 2 twenty pound boxes of dog treats) at our local animal control/shelter.

I need a nap.

 

 

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What am I going to do

I’m still feeling lousy. There are days when I barely have the energy to do anything, including feed myself. I force myself to get up, do things, take care of the dogs and myself. In between, I rest. I get outside with the dogs for a 10-20 minute stroll every day around the yard as the weather allows so I am at least moving somewhat. I’ve read a couple of books and I’m trying to do some crocheting in small doses.

But I feel lousy. My imbalance, the nausea, heartburn, fatigue, pain…it’s all still here. Sleeplessness, heat intolerance…I’m hot and cold all the time. Sometimes I feel sweaty when there’s no sweat. Sometimes my hands and feet are sweaty and clammy. Today I have tingling in my fingers and face. And always the pain in various parts of my body. Both shoulders are bad, and for one of them I can’t lift my arm up above shoulder height. I’m eating small amounts of food and feeling full, then feeling hungry again later. Rinse and repeat when I eat again…small amounts of food and feeling full, then hungry again.

Our health insurance doesn’t kick in again until May 1st. Even so, the last time(s) I saw my doctor, she found nothing troubling. It could still be grief. I’m sad a lot, but I’m also exhausted a lot. Sometimes I’m not sure if I’m sad or tired. This stuff has all been going on since the beginning of February. It doesn’t seem as if it’s going away…it’s coming up on three months. I can’t imagine it’s just going to disappear anytime soon.

As if I didn’t have enough to think about, the biggest issue looming is that Hub is flying to California soon for his sister’s wedding. He’s going to be gone for five days. And I’m going to be alone, having to take care of myself and the dogs 24/7 for those days. I’m going to be in this big stupid house all by myself, day and night, for five days. I’m going to have to be up early to feed the dogs, and then I’m going to have to be up and alert late to make sure they get out at night before bed. And then I’m going to be alone overnight in the darkness. I haven’t been alone like this since before I first got sick over 17 years ago. The last time Hub traveled–maybe eight years ago–I stayed with my parents with the dog we had at that time so they could help me.

But it’s different now. My mother is gone, and she’s the one who kept everything in line in their house. My heat intolerance is bad and Dad still keeps their house too hot for me, so I’ll feel horrible all day and not sleep at night. Butthead is difficult to keep track of, and I can’t trust my father or my brother to make sure she’s not eating things in the yard late at night or early in the morning.  The friends I have who are local have their own lives, work, families, pets, I can’t ask them to come help me. I considered hiring someone, but having a stranger in the house while I’m here alone is frightening to me. I’ve considered staying up all night and sleeping all day, but the dogs go out multiple times during the day so I’d have to be awake and dressed to do that repeatedly during daylight hours. That means no sleep at night and basically no sleep during the day. I could try to sleep at night but being alone in the house overnight is scary for me and I’m not sure I’ll sleep. Not sleeping will, of course, make everything worse.

This all makes me feel like an invalid. But I’m honestly afraid to be alone 24/7 for five days. I don’t know how I’ll deal with pain and anxiety and exhaustion without any support or reprieve from taking care of the dogs and myself. There are moments when I think I will be able to handle it, and then there are moments when I am positive I won’t be able to handle it. The truth will probably live somewhere in between, in the end. I have avoided thinking about this since February, when Hub bought his tickets, but it’s coming too soon for me to keep pushing it aside.

 

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March not better

I thought February was bad. March has been worse.

I’m feeling so shitty, I can’t even. Period. I spend much of my days fighting the nausea and the fatigue…I’m exhausted before I get going. And now…and now, my imbalance is back in a big way. I’m struggling to walk without falling over, and I’m back to touching walls and handrails and tables and whatever in order to keep myself stable. This is a huge slide backward for me, as I haven’t had this kind of imbalance in quite some time.

I went back to the doctor AGAIN because I’m still exhausted and I’m still nauseated. She told me I was acting better this time versus the last visit, but she’s still thinking I have a virus that I need to just “wait out”. She sent me for more blood work (ANA, rheumatoid arthritis, lyme, iron, b12), but everything came back normal. My b12 is a tad on the low side for my history but still in the normal range. I’ve ordered my b12 sublingual pills and will start them ASAP. Maybe it’s that, maybe it’s stress and grief, maybe it’s something else. I have no idea and apparently neither does my doctor. She said to drink more water and walk outside for 20-30 minutes a day. She says dehydration can cause nausea–and maybe it can–but my drinking habits haven’t altered much. Except now I feel like shit and so I don’t want to do anything, including drink. If I go walk outside my allergies will get worse and I’ll have more breathing trouble and more snot and more post-nasal drip and more nausea. The doctor didn’t care for that and told me to do it anyway, that being outside and walking will make me feel better and get rid of my fatigue. I’m not eating much because I’m so nauseated all the time. I rush through eating what I can before I feel like I can’t put anything else in my mouth at both lunch and dinner, then I leave my dishes in the sink and go back to the couch.

I spend most of my days on the couch, barely even bothering to look at my computer. I try to stay upright, but I’m so exhausted all the time that I end up stretched out and wishing that the day was just over. I don’t know why I wish for that because at this point tomorrow will be much of the same. I feel like I’m sliding into this despair of thinking that I’ll never feel better. That it will always be like this. I am trying to push past the exhaustion and do stuff–I did three loads of laundry on Sunday–in the hopes that if I ignore what’s going on it will go away. But by the time I do anything, I feel this crushing fatigue again and I end up on the couch. Or in bed.

Sleeping is a negatory. I try to sleep but it doesn’t work, and when I wake up in the morning I can hardly haul myself out of bed. I don’t feel rested or refreshed or like I even closed my eyes. I want to cry but I’m too fucking tired to cry.

I was supposed to go see my massage therapist on the 14th but our local snow canceled that appointment. I was also scheduled to go tomorrow morning, but I literally got an email at 9:30pm saying she’s sick and has to cancel. And for sure I’m grateful because I do NOT want to get sick and it sounds like she has the flu, but I’m so disappointed. For one thing, I was hoping some trigger point release would help with my imbalance and nausea (hoping, though not confident)…for another thing, getting onto her schedule is a bitch and even though I rushed I struggled to get back onto her calendar. It’ll be two weeks before I can get back in to see her, which might not be horrible because if she DOES have the flu I wouldn’t want to be back in her “hands” too soon. But it’s hard to miss appointment after appointment when I’m feeling so poorly. Hub tried to send me a link to a list of massage therapists in the area, but none of them do trigger point AND it’s hard to just find a new massage therapist. It’s like a mental therapist…you have a relationship built up. It’s not so easy to walk into someone’s space and get naked and let them rub you for an hour.

I see T on Friday, which is the day after the one year anniversary of my mother’s passing. Just happens to be how it worked out. Considering how things are going at the moment, it’s going to be a long, sobby appointment.

I can’t stand this constant nausea. Every time I swallow I feel sick. Every time I move I’m wobbly and off balance and that makes the nausea worse. If I didn’t have the dogs, I’d be in bed all day. I gave thought to going back to bed after lunch today because Butthead had peed and pooped after HER lunch so I knew she’d be okay for a while, but I didn’t want to give in. I’ve been in that place where I didn’t get out of bed for weeks (with my prilosec fever) and that’s a bad road to head down. It only makes me weaker and makes me feel worse.

Hub’s birthday dinner with his family is this coming weekend. I don’t know how I’m going to go…by 3pm, I’m so exhausted I can barely sit at our kitchen table for dinner, how am I going to get out and go to a restaurant and be “on” for his family? For hours… We didn’t go out on his birthday because I couldn’t get up the energy. We didn’t go donate the dolls and bears I crocheted to the police station because I didn’t have the energy to leave the house.

I don’t know what to do now. I don’t know what path to take. I don’t know how to do anything right now.

 

 

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On dogs and doctors and days (long)

It’s been a busy month. Today is the 18th, just FYI.

I got my eyes checked–for the first time in at least six years–only to find that my prescription has barely changed. In fact, the doctor wanted to roll back my prescription a smidge but I declined. I just picked up my new glasses about an hour ago and when I put them on, I felt weird. I think we ended up a tiny bit stronger, but the technician said it could also be the upgraded coating on the lenses that made me feel funky. I’ll have to ease into the new glasses, which is fine because I still have an old pair to use in the meantime. The new glasses have half-frames, so they should be lighter on my face. The second pair of “new” glasses I got are actually one of my old frames with new lenses. I would say it was cheaper to do it that way, but honestly by the time I picked the first set of new frames, I was so freaking tired of looking at frames that I just told her to put new lenses in my old frames. They were in fine condition and they were going to be my back-up pair anyway. Everyone I worked with at the optometrist kept repeating that I had single vision lenses (instead of bi-focals) and they all sounded surprised. Kind of annoying, but honestly the major reason I didn’t go back to get my eyes checked in the last six years is because at 39 years old, the optometrist told me at 40 I’d be needing bi-focals (because that’s “the age”) and I didn’t want bi-focals so I didn’t go back. And here I am, six years later, still no bi-focals. So poo on all of you. Meanwhile, I also hate getting my eyes dilated, but this optometrist had some new-fangled technology that let them take pictures of my eyes and I was able to put off dilation again.

Monday we took Le Moo for her annual “senior” check-up at the vet. We took Butthead, too, because we’d noticed her front two bottom teeth were disappearing. The vet assured me that it wasn’t likely to be the case when we talked in email, but we brought her anyway to make sure. Le Moo is healthy and has lost about 10% of her weight. She went from 94 pounds to 86 pounds, which we are doing on purpose because as she ages she seems to be more prone to limping after running or playing. She’s a big girl and we’ve always had trouble getting her to lose weight, so we gave up and she pretty much maintained a steady weight for all the years we had her. Then we saw the limping issue and we started getting really strict and we’ve noticed it paying off. We’ll keep up with it and try to keep her from injury. The vet looked at Butthead’s teeth and said they aren’t disappearing, the gum is growing up over them. Nothing to do unless it bothers her and so far she hasn’t complained. Unfortunately, the vet is 90 minutes away, so it kind of takes up several hours just going, doing the appointment, and coming home. So Hub’s MLK day off was pretty well used it by that. I’m glad Le Moo is doing well…she’s somewhere around eight years old, which is getting up there in big dog years. And ya’ll know I worry. We’re going to have to get her back to the vet to get her teeth cleaned (she’s got bad teeth, yo), so we’ll be making that trip again in the next month or so. Yay.

So Tuesday was my six month check-up with the gyn onc surgeon. Because of Hub’s status with his company (they got bought out and are in transition), I didn’t want him to have to take a day off to accompany me to an appointment that would likely last less than 15 minutes. So I sent him on his way to work and girded myself for the hour ride to the onc’s office. Under normal circumstances, I would have been nervous but okay to make the trip on my own. I made the appointment for after rush hour and I plotted my route to go on the mostly un-used toll road to avoid further traffic. But…it rained. I knew it was predicted to be “light showers” so I told Hub I’d be fine on my own. When I got on the road it was lightly showering. Ten minutes in, before I even reached the toll road, it was pouring. And I was sweating bullets, hands clutched on the steering wheel, talking myself into being OK. I don’t like driving in the rain and I hate driving on wet roads. I have been in a full 360 degree skid behind the wheel before and it’s not fun, so I try to avoid driving in weather. In addition, the toll road is 60mph, and the highway that I was supposed to be getting on at the other end is 60mph, with lots of traffic. So when I rolled onto the toll road, I basically planted myself three or four car lengths behind a dump truck and kept speed as comfortably as I could. Halfway along the toll road, the dump truck changed lanes and sped off. WTF. But I stayed steady and with the few cars on the road flying around me, I made it along the toll road. At the other end, I decided to exit early onto a main road that cuts through the city that I knew would have lots of traffic lights and lots of cars, but also slower moving. And I splashed my way along for half an hour until I got to my destination. It was a good thing I left early, and I made it with ten minutes to spare at the doctor’s office. The doctor was “only” 45 minutes late (we’ve actually waited for 2 hours for prior appointments!), he spent less than 10 minutes with me…several of those minutes were taken up when I told him my mother had passed and we talked about that. He said everything looked good for me and without any concerning symptoms he had no reason to run any tests. In July I’ll repeat a CT scan as part of my follow-up at my two year mark.

Luckily for the trip home it had stopped raining but the roads were all wet. Even so, I made my way along the major highway back to the toll road, and then meandered along the toll road toward my exit. Unfortunately again, the exit ramp I have to take from the toll road to the highway home is a HUGE flyover, which I don’t even like to drive on DRY pavement. Instead I took the exit for the opposite direction which is a normal exit and I turned around at the first traffic light. And I headed home on more regularly traveled roads, which meant I was more comfortable even though the streets were still wet.

In March I will go for my mammogram. It’s still hard for me to go to these appointments and to know when I get home that I don’t have my mother to talk to about what happened. I thought it would get easier, but so far it hasn’t.

Tomorrow I go for a “consultation” to get my hair did. The salon I selected (different from the one I used last year…partly because the stylist never answered my queries and now because I find out this new salon has more “organic” hair dye) wants me to come in to meet the stylist and to let the stylist see my hair and confirm what I want done. If all is well, I go in early on Saturday to get all the colors. ALL THE COLORS. When I was younger I used to box dye my hair all the time, mostly variations on reds because I didn’t like my plain brown hair. At some point I became too ill physically to dye my hair so I stopped. Then I did it a few more times when I was feeling better, but it was a pain in the ass and everything got all stained (including ME) and I didn’t really love the results, so I stopped again. One year I went and got my hair all chopped off and then I had the salon dye my hair but… well, I wasn’t really keen on how it looked and it seemed like the color washed out pretty quickly and I didn’t want to waste my money.

Only last year did I decide to get something done again and I wanted it to be a little funky to make my mother smile. I got a combo of auburn and violet done, but Mom never noticed and the final look wasn’t as pronounced as I had hoped. Over the past year I haven’t bothered to do anything except let my hair grow out. But after my breast MRI and my colonoscopy and my eye exam, and now my onc follow-up, I knew I wanted to do something fun to celebrate the positive news I’ve been getting. I’ve been stalking Instagram (which I don’t use) for different pictures of what I wanted and I am vacillating between something oil-slick color looking and something more jewel-toned, but there’s definitely gonna be blues and purples and maybe some teal and pink. We’ll see what the stylist says tomorrow. If I can get a picture of before and after, I’ll come back and post them.

I’ve also gone past my birthday. My father asked me three or four times if I wanted to go out to dinner for my birthday (he called around lunchtime) but I kept saying no. I felt bad because I know he likes to go out to dinner and I am sure he felt it was what he could do for me, but I didn’t want to go out. I stood my ground and I thanked him, but said I wanted to chill at home. Hub acquiesced and didn’t do anything special for dinner, but we were together so that was fine. The weather outside was crappy and icy so I was just as happy to stay inside and just BE. My aunt–who doesn’t do so good with the whole grief support thing–called and kept me on the phone for 45 minutes talking about stuff. Two of my three brothers emailed me to wish me happy birthday, and my very old dear friend did the same. But no call from my mom, which was the hardest part. Just knowing the whole day that she wouldn’t be calling and we wouldn’t be talking. It sucked. And now it’s over for another year.

Friday I will literally be in therapy while the inauguration is going on. Like I had planned it that way. The rest of the day I will be avoiding all manner of television and radio and social media. Bleh.

I am still in a pretty good amount of physical pain. The nausea is still around but it feels like less often, so that’s good. Sleep is still sucky. The imbalance is so-so. My jaw pain is still bad, though. Headaches are not quite as bad. I broke down and saw my massage therapist last week so she could work on the TMJ pain, which worked pretty well for about a day. Next week I go back to her for my regular body-work session. One day I’m going to schedule a woo-woo relaxing massage with her because she’s damn good at it (I had one shortly after my mother died as a gift to myself) and I really want it. I wish my insurance covered that shit because it is physically helpfully to me just like physical therapy was, but it’s not covered. And it’s pretty expensive for an appointment…not that I think it’s overpriced. My massage therapist is a boss and hella good at her job…and she works fucking hard to help me. I can’t even imagine how hard it is on HER body to do the work she does! I have no idea if she’s in line with other massage therapists, but I know she earns every damn dollar during our appointments.

I just realized how long this was. I’m gonna end it now. I should have broken this up into separate posts, but in my head it all felt related. Thanks for sticking with me.

 

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Cardiophobia

cardiophobia

Cardiophobia is defined as an anxiety disorder of persons characterized by repeated complaints of chest pain, heart palpitations, and other somatic sensations accompanied by fears of having a heart attack and of dying. Persons with cardiophobia focus attention on their heart when experiencing stress and arousal, perceive its function in a phobic manner, and continue to believe that they suffer from an organic heart problem despite repeated negative medical tests. In order to reduce anxiety, they seek continuous reassurance, make excessive use of medical facilities, and avoid activities believed to elicit symptoms. The relationship of cardiophobia to illness phobia, health anxiety, and panic disorder is discussed.

I had no idea. Did you even know this was a thing?? (edited to add that personally, I don’t actually make “excessive” use of medical facilities…but I do think about how often I go to the doctor and I think about how it would be to go to the doctor every time I felt health or heart anxiety)

I did a bad thing and I googled something semi-medical. I googled “I am afraid of exercise.” And lo and behold, there are people out there just like me, who are afraid of exercising because of cardiophobia. There are other reasons for fearing exercise, but I was mostly focused on the cardiophobia because that’s my issue. Cardiophobia is the main culprit of my health anxiety, although these days I do have some mild cancer recurrence fears, too. By the way, I survived my google espisode and I REALLY only looked at cardiophobia postings…I did not stray or fall down any medical google rabbit holes. Go me.

I had my appointment with my cardiologist this morning. I have mentioned this before, I believe, but I like this man because he’s non-judgemental about my weight and talks bluntly yet kindly when we meet. He listens to what I’m saying before starting in on any exam. He even listened to me when I said I was afraid to exercise because of my heart, and that I was working on it in therapy. He did an EKG which came out fine, then said we hadn’t done a stress test in many years (not since I first saw him probably in 2012 or 2011)…and he said we could do it right away if I was amenable. I said yes, of course, because no time like the present. The stress test was with an EKG and blood pressure cuff hooked up to me, but no echocardiogram like Hub had a week or two ago. The nurse said they only do echocardiograms when there’s a potential structural defect, which the doctor was not concerned about.

The stress test was hard for me. At one point, the BP cuff was so tight (I hate when it starts to tighten, stops, then starts again like it’s starting over…) that my entire right arm from cuff down to my fingers was beet red. I told the tech that the cuff was way tight and she reset it. But those stress tests make you go fast and at an incline on the treadmill and that’s hard. It was already hot in the room and I’m pretty heat intolerant. When they went from high speed and full incline to cool down, I got woozy and I told them. The nurse said that happens and it’ll go away, which is kind of did. Except for the fact that I am having a lot of imbalance issues (like being on a boat rocking up and down) these days, so it didn’t fully go away.

They unhooked me and gave me a cup of water, then the nurse left to consult with the doctor. When she came back, she said they saw no blockages and no abnormalities on the test results, so I was free to go home. Hub was waiting in the waiting room and he helped me out to the car because I still felt overheated and wobbly.

Do I feel better? I’m not entirely sure. But at the very least, when I go in to see T on Friday and we start working on my specific health and exercise anxiety, at least I can say that I was cleared by the cardiologist. Unfortunately, I’m dealing with heartburn again, which had mostly been under control up until about two weeks ago (a lot of this pain is probably the heartburn crap, which I think started out “silently” and is now just getting worse and worse. I’m going to get back onto my digestive enzyme regimen, with the exception of having to find a new digestive enzyme pill because the previous stuff I was using had to be purchased through a practitioner and the nutritionist I was seeing for it refuses to respond to any of my inquiries. I think she’s pissed that I stopped coming in for appointments.

Anyhoo, I’m cleared by the cardiologist. I go in to see T on Friday for hypnotherapy and Neuro-Linguistic Programming. NLP’s creators claim a connection between the neurological processes (neuro-), language (linguistic) and behavioral patterns learned through experience (programming), and that these can be changed to achieve specific goals in life. Apparently NLP is something that hypnotherapists can try to use to help along with the hypnosis. I don’t know squat about it, but we’ll see how things go.

I’ve already had one hypnotherapy session, just an induction where she wanted to see if I could go into a hypnotic state. We tried again on the last session, but I was so mired in grief that I basically burst into tears mid-hypnosis and that was the end of that.

I’ll talk about hypnotherapy in another post soon.

Hub and I started and stopped acupuncture, but are planning to start it again because we both felt it was somewhat helpful for certain issues. We were supposed to start again this week, but my cardiology appointment screwed that up. Hopefully next week.

There’s today’s update.

 

 

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Liar liar brain on fire

I’ve been struggling with my health anxiety for over a week. As per usual, it’s pretty centered around my heart. I’ve made an appointment to see my cardiologist, but the online scheduler only had an appointment for NEXT Monday. I’m going to call in the morning to see if they have anything sooner, whether it’s a cancellation or what. If they can’t fit me in sooner, I might also check with my regular doctor–but getting in to see them is pretty difficult these days.

I keep trying to tell myself that if I’m still alive after this week of potential heart pain, then it’s likely just anxiety plaguing me and not a “real” issue. It’s my anxiety lying to me. My left arm hurts, my back hurts, my jaw hurts, I feel slightly off-balance, I’m nauseated. All those things could mean a heart issue…and all those things could be just my daily life. I can’t get around my lying anxiety brain to figure it out. I’m both hot and cold, sometimes feeling sweaty when there’s no sweat there. Right now my palms are warm and feel like they’re sticking to my laptop, but my feet are freezing cold and clammy.

I’ve had a pain in my lower right back today. I always have pain in my back, but this feels different. Is it real or anxiety? I hate that I can’t tell. I don’t understand how I’m supposed to know what is real and what isn’t. I don’t know when to seek emergency treatment and when not to. I don’t want to spend my life in the emergency waiting room…our local ER is terrible and our trips tend to last no less than 6-12 hours there. Most of that in the waiting room trying to get a bed to be seen (usually by a dismissive physician or physician’s assistant).

I’ve been depressed and not acting normal, not moving around much, not eating well, not drinking my water. I know this is all contributing to the fact that everything hurts me, but I can’t seem to get around it. I’m sitting poorly, also contributing to my pain. I’m not sleeping, some of which from pain, some because of the fear of having a heart attack.

I can’t even tell you how many good-bye letters I’ve written. In my previous house, I used to have them scattered around in weird places. Mostly hand-written in the dark of night when I was sure I wouldn’t make it through the night. Sometimes I write them on my computer and drop them into weird folders. Am I the only one? Does anyone else do this? I so wanted to write one the other night because it was that bad. I didn’t do it. I wanted to wake Hub and tell him good-bye, just in case. I wanted to do it before he went to sleep. I write the notes because I don’t want to frighten my wonderful husband…I can’t stand keeping him awake when he’s the one getting up early every morning to take care of the dogs and then go to work to support both of us.

I was sitting here earlier, just waiting for the time to go by. And I started wondering WHY I was hoping for the time to go by more quickly. I know I want to get up first thing and make calls to the doctor, but really, what is that going to solve? I’m not likely to get an appointment right away, so I’m still stuck in this anxiety limbo.

As I type, I’m restless. My jaw is hurting again. My back. My arm. I want to sob, but crying only makes me feel worse. I want to curl into a ball, but it hurts too much. I want to lie down and go to sleep but I’m afraid. I heard once that there are more heart attacks in the early morning hours, so I’m afraid to go to sleep because I’m afraid to have a heart attack overnight or in the early morning hours. For some reason my brain thinks that if I’m awake, I won’t have a heart attack. Or maybe I think if I’m awake, I’ll be able to get help if I start having a heart attack. Probably the latter.

This sucks so much. I hate this health anxiety. I hate that this is one of the few things that I’ve not been able to conquer. Sometimes I do so well, but other times I’m just so suffocated by it.

 

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