And then there were THREE?!

It’s been over a year since I posted about Jujube coming to join our pack…she’s now nicknamed Tater Tot, because she’s a small potato in comparison to most Bernese Mountain Dogs. She arrived at 100lbs, and I knew she needed to lose weight to protect her joints. We actually were able to slim her down to 75lbs, but then our current vet was like, yeah she needs to put on a few pounds…and that was hella easy! She’s resting now somewhere around 85lbs and I think she’s okay at that weight. She’s still short and stocky, and I constantly remind her how tiny she is, but she’s a good girl. We actually had very little issue housetraining her as she didn’t have any accidents in the house at all. We crate trained her–as we did with Butthead–and she sleeps in her crate on and off at night in our bedroom. The crate door stays open so she has freedom to move about the bedroom all night, which she does.

This is Tater Tot. She’s four years old now and still happy and crazy and attached to Hub like nobody’s business. She has realized that I give good butt scratchies so she does come to me for affection, but mostly she is still Hub’s little baby. She, unfortunately, has some bad habits (poop eating) and she’s very chompy to take treats out of our hands, but we continue to work on these things. She’s also still a pretty nervous dog. If we drop anything on the floor or move our chairs too fast, or someone comes in the house she doesn’t know, she jumps and runs off. These days she’s more likely to come back and investigate whatever scared her, but still she’s a nervous nelly.

So now I said THREE in the title, because about four months after Tater Tot came to us, I accidentally fell in love with another dog. Integrating Tater Tot was actually pretty easy, in that she really didn’t seem to care about Butthead. Butthead really wanted to play, but Tater Tot has no idea how to play with her. So they were able to exist in the same pack without too much issue. Once or twice Butthead may have quietly corrected Tater Tot, but honestly Tater Tot is so happy and kind of dumb that she didn’t take offense. She was like “sure, whatever old lady, I’ll just go over here instead” and that was it. Since Tater Tot fit in so well, with little issue, I was halfway watching the rescue postings on my FB feed. I really didn’t PLAN on a third dog–we have never had three dogs full-time–but I saw a picture.

I saw a picture on my FB feed and read the story about our Golden Girl and I cried. I cried big tears and I sent the story to Hub and I was like “she needs us.” At the time of her listing she was 8 years old, they decided she was a great pyrenees mix because she had the rear dew claws that GP’s have. She had been with her foster for almost a year because she needed several surgeries and had to recover from them before she could be adopted out. They found her in a hoarding situation on a dairy farm with a ton of other dogs at 7 years old. She had horrendous hip dysplasia on both sides, so she had hip surgery on both hips, first one–then recovery-then the other, and recovery. She also had an emergency hysterectomy due to a bad infection–and recovery–and then they removed both mammary chains because they found tumors (that turned out to be benign)–and recovery. Four major surgeries in a year, each requiring somewhat lengthy recoveries. They also found bacteria in her system during one of the surgeries that only COWS get…that’s how terrible the dairy farm hoarding situation was. The vet had never seen anything like it.

Hub, being the sucker that he is, said “sure, go ahead and apply for her.” I told him everyone was going to want her, so it was probably a waste of time. I put in the application on a Thursday, talked to the rescue that evening, and Friday morning they said “she’s loading up on our transport and you can meet the van at about 1am to pick her up.” Seriously, no one else wanted her. We couldn’t imagine, and here we were with a pack that was still getting accustomed to each other, including us with a new routine with Tater Tot. But Golden Girl…something in her just drew me and I felt we were the right home for her. We were told she had some mobility issues from her hip surgeries–which we were well versed in from the last couple of years of Le Moo’s life–and that she was not well socialized to people. Again, another outdoor dog and another dog who wasn’t really sure about people.

We picked her up at the meeting point and Hub had to basically lift her into our van. She was so shut down she didn’t want to move or do anything. She had a blank stare and a frozen body…and she did not seem thrilled about Hub. He’s a big guy and often overwhelms smaller dogs, but Golden Girl was about 95lbs and wasn’t small, but her life had been so small…

I had never met a dog so shut down before in my life. She didn’t want to be touched, she didn’t want to be looked at. She refused treats and refused our affection and refused us. Literally, ran from us. We had to put her on a leash to get her outside in the yard so she could go to the bathroom. Again, another “outdoor” dog who had zero issues being housetrained, but she just seemed to be dead on the inside. We followed her lead and let her be except for taking her outside. We thought, sure, a couple of months and things will calm down…she’s going to love us.

She did not love us. She didn’t interact with the other dogs, she just…existed in her shell of a body. We talked to her all the time but did not touch her unless necessary. We told her again and again that she was going to love us. She did not love us. She kept to herself in another room, one that we kept dark with heavy curtains on the windows. At some point she began following me, but would not really come close. She wouldn’t go near Hub at all, but she started shadowing me inside and outside the house. I started taking more risks with her…touching her as she walked by me, or putting my hand on her when she was nearby. She still skirted away and she still refused treats and any signs of affection. Six months in, we were still in the same standoff. She had no personality, no quirks, no reactions, no emotions. Six months…it was torture for us. We only wanted to love her, but she didn’t want us to. And she didn’t want to love us.

I decided that we had given her plenty of time to realize that we respected her and her needs…and that we were going to love her even if she didn’t love us. I was ready to move forward, so I started touching her every time she was near me. Inside the house, outside the house, nighttime, daytime…touch touch touch touch. We would celebrate every time she let me touch her, or when she didn’t actually run away from me. Another month, I just kept pushing her tiny bits at a time. And I encouraged Hub to start touching her as well. She ran from us a lot, but we didn’t give up. And every accomplishment was celebrated.

And one day, outside on the deck, I announced to her that I was going to hug her. And I did. And she stood there and allowed it. She did not respond, her body was stiff, but she stayed where she was until I let her go…and she ran away from me. I didn’t care because I had hugged her and she had let me. Day by day, I would just do a little more hugging, a little more touching, a little more loving. She was taking treats from me and would occasionally allow Hub to toss a treat in her direction. And again, another day I up and announced that I was going to kiss her, and I pressed a kiss on her big gold noggin. And she let me. It’s been all uphill since then. Well, slow uphill. She’s still stand-offish, still a little resistant, but we keep pressing forward.

She loves to roll in the yard, especially when the grass is wet. She loves to rub along the fence, we have no idea why. She gives us happ face now, and lets us touch her and hug her and kiss her more. She will still skirt away from us sometimes, but it’s okay because we know that she knows she’s going to get loved no matter what. She barks at everyone who comes in the house, and oftentimes won’t stop until they leave. We’re working on that. She doesn’t let other people touch her, but that’s okay…she has her boundaries and we’re okay with that. We just celebrated her one year gotcha day with homemade doggy cake…and she loved it.

The three dogs get along fine. Golden Girl sometimes guards the water bowl, but we just correct her and she moves away. There’s some minor interaction between them, but more often than not they are lying near each other. Golden Girl and Tater Tot seem to do that more often, kind of like they are the two new kids who have kind of bonded over being new kids.

Butthead is old–around 12 or 13 years old–and has been not 100% healthy these last months. She’s lost a ton of hair and her muscles have atrophied. She has weakness in her back end that pain medication has not been able to help. Her mobility is low, and we are sort of hoping that a new medication due out in the fall might help her. Right now she’s cranked up on a ton of pain killers and getting weekly acupuncture treatments, with limited success. We’re trying to keep her quality of life good but some days it is a struggle.

Hub actually kept his job all through COVID–we were extremely lucky. This past December he got a promotion and a raise…and then unceremoniously and shockingly got laid off from his job. He was out of work for about four months and we were lucky to be able to make it through, despite him only being given a month of severance (plus two weeks of leave he had saved up). He has since started a new job that he doesn’t love, but it’s definitely paying the bills. He has to go into the office once a week, which isn’t horrible but it’s basically a three hour round trip in traffic. For now, it will do.

I’m still struggling on and off with migraine attacks. At present I’m in the midst of an attack and it sucks. I’ve been continuing to try new medications and new medical devices with some minor success. Unfortunately, once I get into a migraine attack, I seem stuck there until it lifts on its own…and that’s a royal pain in the ass.

I’m not sure how long I’m going to blog again, but today I felt the need to. Hope everyone here is still doing well.

 

Fauci Ouchie #2

I’m writing this blog a few days before shot #2 of Pfizer’s COVID vaccine. By the time this posts, I should not only be done with the actual ouchie (the shot doesn’t actually hurt, but the term for it is too cute to not use), but I should also be done with any side effects or reactions.

Hub got his 2nd Moderna shot yesterday at lunchtime. A few hours later he had a small headache that he staved off with Advil. As the rest of the day wore on, he started getting body aches, which he also was able to manage with Advil. Before bed he took an Advil for the aches, and then again this morning for the same. His arm hurts a lot, but that also happened the first time for him. I hope the aches go away soon…I know people say the side effects don’t actually last too long, so we’ll see.

At the moment, I’m holed up in our “media room” which has no media but is an actual “room”. (ha ha). We expected to make it a full-on media room when we built the house…it has yet to come to pass. It’s mostly a room where the dogs sleep and we have a couple of recliners and old couches. We bought the recliners in expectation of the media room, but they just sit in here empty except when Hub has a work meeting and doesn’t feel like going upstairs to his office. So I’m in here, sitting in a recliner I HATE (it’s fake leather and is electric) hiding from our cleaning people. We stopped using them at the height of the pandemic and went about six months without them. It was fine, I’ve been feeling better and so keeping the house relatively clean wasn’t too bad. But man, we missed their deep clean of our bathrooms and our kitchen…and all the dog drool on the tile floors. When we felt comfortable enough, we started back on a regular schedule (they come every three weeks to do their excellent cleaning, and we keep the house in between) because it’s something we can afford to pay someone else to deal with. I don’t have to hurt myself cleaning the bathrooms or kitchen when they need scrubbing, Hub doesn’t have yet another chore on his list, and we are contributing to a small business and to keeping their employees paid. I know it sounds like a weird thing to think of, but we are able to afford to pay them (they are actually VERY reasonable with their rates) and we are putting money back into our community. I’m grateful to be able to do so.

However, since the pandemic, they have new restrictions in place to keep their staff healthy and to keep us healthy. We are not allowed to be in the same space as them, and they wear booties and gloves and facemasks to clean. Since this room is the easiest to close off and easy to keep clean, this is where I hide while they are working. We have changed out this room for another so we didn’t have to pay them any less and we still get our full clean. Generally we don’t have them clean the whole house because there are some rooms that really get no use. Instead of cleaning this room they have been alternating cleaning two of the upstairs bathrooms. We have a hall bath that Hub uses occasionally when he’s in his office (it’s next door), and we also have a bathroom in the guest bedroom–which rarely gets used. However we have used it to bathe the dogs on occasion. Why am I telling you all this? NO CLUE.

Back to my post…so this morning as we’re preparing for the cleaning people to come (picking up stuff sitting around so they don’t have to move our junk around), I asked Hub if he thought one day soon we wouldn’t have to hide while they are cleaning (he goes in the basement with the dogs). I said in 2 weeks he and I would be fully vaccinated, but the owner of the cleaning company has not told us if her staff is fully vaccinated. Don’t you think that would be a big announcement for her to make? She has not said anything yet, so I’m assuming they are not quite all fully vaccinated. I mean, I’m fine to hang out in here while they are cleaning, but at some point I’m hoping to feel more normal and be able to move about the house while they are here.

I had lots of nerves before the first shot. I expect I will also have lots of nerves before the second, because this is the one with after-effects. The first one I was worried about a reaction to the shot…this one I am worrying about how bad the side effects will be. Lots of people in my migraine support group had bad migraine attacks and some had vertigo attacks. I am prone to both, so feeling distressed that I might have to deal with either or both. Of course lots of people in the support group also had light, few, or no side effects at all. I keep telling myself that I will manage whatever it is, and hopefully it will be short-lived, but…ugh. I just want it to be over with so I don’t have to keep thinking about it.

SOON! Hope you are on your way to be vaccinated as well.

 

Flubba-skip-dubba

About two years ago, my neurologist added propranolol (a beta blocker for lowering blood pressure) to my cocktail for my migraine attacks. It was also added because the original medication I was on (nortriptyline) was causing my heart rate to go up a bit at rest. The propranolol has brought down my heart rate, regulated my blood pressure (which wasn’t terribly high, but was on the top end of normal), and helped my migraine attacks…and it does give me some feeling of calm for my anxiety, since it lowers my heart rate. I used to be in the 80s at rest, I’m now in the low 60s at rest.

An incidental result of being on the propranolol? My PVCs (premature ventricular contractions) all but disappeared. For almost the full two years, I would maybe get a PVC here or there, in times of stress or anxiety. Prior to the propranolol, they would be kind of regular…I had forgotten what it felt like to have them happen multiple times in a day. Multiple times in an hour. Multiple times within a few minutes. It’s irritating, anxiety-inducing, and it makes me lose my breath and cough so my throat is always irritated.

Saturday Hub and I went to do some trail hiking so we could go back to the rapids we visited over our anniversary. It was overcast, barely 60 degrees, and very comfortable. We did our hike, we hung out, walked a bit to some areas we hadn’t seen before, then made our way back to our car. Then we ran some errands and went home. I knew I was a bit dehydrated, but otherwise I actually felt fine. Even my legs were okay, which was surprising considering the hills we were taking on the trail. Sunday I also felt okay, although now I could feel the muscles in my calves kind of complaining. We ran a few more errands in the morning, but then we were hanging out and resting most of the day.

Later in the evening, after dinner, I was crocheting a blanket I’m making for a family member. I was in bed with the blanket spread out (it’s huge, y’all), concentrating on a piece of the pattern, and …flubba-pause-dubba.

Hunh.

Back to the pattern, counting to make sure I’m doing the right stitch in the right order. More PVCs come on, like every 30 seconds or so. I’m irritated at the interruption, but not yet anxious about it. It’s just a couple…only been a few minutes. It’ll probably go away.

Nope. There they are again. Multiple times in a minute, but not technically one right after another. Feels like my heart is skipping every other beat or so. Ugh. Not anxious yet, but starting to wonder why this popped up out of the blue. It’s been so long, why is it happening now? Am I dehydrated from the hike the previous day? They continue and I get nervous. It’s Sunday night, there’s no one to call, and really no reason as I KNOW that my PVCs are benign. I lived with them for many many years, but I had become accustomed to NOT having them. I’d forgotten what it really felt like to live with them. I start wondering if I can get my propranolol increased to make them go away again.

I warn my husband what’s happening, then tell him I’m going to take a klonopin so that I can try to sleep. I’m hoping it knocks me out enough to not feel the PVCs. Fortunately, it actually works.

Monday morning, the PVCs are going as soon as I wake up. Same as the night before…multiple in a minute. I cough and get up to start my day. Within an hour I’m mildly anxious and very irritated, so I call my cardiologist’s office to make an appointment. I am hoping to talk him into increasing my propranolol. I have enjoyed living my life without the PVCs. I’m expecting to wait a week or two to get an appointment, but they can see me the next day. I ask Hub to change his work schedule so he can drive me and he readily agrees. He’s a good man.

Monday I have the PVCs all morning. I take my propranolol with lunch and…the PVCs go away. I am drinking water as much as possible, in case it’s dehydration causing the PVCs. I hate drinking a lot of water, it makes my stomach hurt, but if it makes the flubba-dubba’s go away, I’ll take the stomach discomfort. But shortly before dinner the PVCs come back. The propranolol didn’t really help and neither did the extra water. Nuts.

My appointment was first thing this morning, and in the end I didn’t even get to see the cardiologist. I really like him, but apparently he was overbooked. His Physician’s Assistant came in to see me after the nurse did my routine EKG. She explained he was still in with another patient and if she could just get started, we could move the appointment along. I agreed and we talked about what was happening. She kept calling the PVCs “palpitations”, as if they might be something OTHER than PVCs. I told her I’d had them for years, the cardiologist knew about it (and saw them on a holter monitor I’d worn for 24 hours a few years ago), and they’d gone away with my propranolol. She did her exam, then told my EKG was the same “kind of off” waves that I’d had in previous EKGs. No change, good news, did I really need to see the cardiologist? I said no, but I was hoping to figure out how to make these PVCs go away again, as they really interrupt my daily living. Of course, I hadn’t had a PVC yet that morning, but…

So she set me up with another heart monitor, but these new fangled devices are small, adhere right to your chest, and don’t have any wires. After the first 24 hours you can even shower with them. The old ones connected with multiple wires and you had to haul a big pack around with you. The monitor is on as we speak, for three days, and she ordered blood work and an echocardiogram. I did the blood work before I left the building (the labcorp we use regularly is right down the hall), scheduled my echo for the end of MAY (first opening–YEESH), and headed home with my fancy contraption.

So far today (it’s nearing dinner time IRL), not one single solitary damn PVC. I’m supposed to push a button on the machine when I get a PVC and then record it in an app. NOT ONE PVC ALL DAY. I mean, yeah, that’s good news. But the doctor’s going to think I’m a hypochondriac. sigh

You can barely see the monitor sticking up out of my shirt. It’s hardly noticeable. Although I changed shirts later in the day and you can actually see the little plastic compartment holding all the electronics, but I’m fine with it.

Here’s the old style:

So here I am, all bionic and stuff, just waiting for the PVCs. Hanging out here, not flubba-skip-dubba’ing. Hopefully I can sleep okay with it…and it doesn’t try to come off. The PA wanted to do a week and I had made a noise (cuz I was picturing the old unit), but she settled with three days. When I’m done, I just put the whole thing into a pre-paid box and ship it off to the manufacturer. They print out reports and send them back to my doctor for review.

Bing-bang-boom. Flubba-dubba.

 

Good enough

Growing up, I was the “good” child. I was a goody-two-shoes, both at home and in school. My siblings made fun of me for following all the household rules as if I were in the military. No questions asked, no back-talk given, I did what I was told. In school, other students called me “teacher’s pet” and said I was a smarty-pants. I listened to my teachers, I did my homework and turned it in on time, I followed the school’s rules. All through elementary school I was like this, both at home and in school. I never wanted to step out of line for fear of getting attention for the wrong reasons. Teachers favored me, telling me how smart I was and how good a student I was. My parents praised me for getting good grades, good reports from the teachers, and for doing what I was told. But truthfully, I was left mostly to do my own thing because I could be trusted to do the right thing.

At the age of 12–in middle school–I started a small and understated rebellion. I was bored in class and angry that the more rambunctious kids got attention. Teachers barely paid attention to me because I was one of the “good” students. There were many times that I thought my teachers didn’t bother to look at anything I turned in because they didn’t have to worry about me as a student. They assumed that I was doing things correctly and that I would deserve an “A” on my work…and that’s generally what I got. Between the boredom and the lack of attention, I was so irritated that I started skipping classes. Sometimes I would just wander around the building and other times I would go hang out in the guidance counselor’s office or the secretary’s office. I never left the building so I wasn’t technically truant, but I was out of the actual classrooms. I think there was a lot of time that my parents didn’t even realize that I was “skipping” class because I stayed on school grounds.

Then when the guidance counselor told me that I could no longer hang out in her office, I had to come up with some other idea. And I realized if I said I was sick, I would not only be dismissed from class but I would be relieved of other obligations. Being sick gave me a kind of freedom from being the good kid…from responsibilities and expectations that came along with being the “good student”. And if I said I was sick, I was able to go home in the middle of the school day. Both my parents worked full time at that point, so I either walked home, or if I had money I took a cab. At home I was free to do what I wanted until someone else came home…either one of my siblings or my parents. And since I was a “good kid” my parents didn’t question if I was actually sick…they assumed if I said I was sick then I was telling the truth.

Eventually my parents saw my quiet rebellion and things came to a halt. I was told in no uncertain terms that I was to return to my formerly good student/child life…period. I was too afraid to say no, so as I moved into high school, I left my small rebellion behind. Instead of being bored and pouting about it, I turned everything around and flew through high school. I took as few classes in the day as I could and still graduate. When I wasn’t in school I was working part time retail. I saw the brass ring hanging out there and I wanted it. My last year of high school I was only in school for three classes, then I left in time to go to my job where I was earning money for my car and for gas and insurance.

As expected by my parents, I went to college. I took classes that looked easy and I breezed through most of them. I was still working while I was in college, and I think my parents felt relief that their “good kid” was on track. Unfortunately, in college I ran into the same kind of inattention/disinterest from professors. After the first few assignments of each class–when the teachers realized that I was smart and knew what I was doing–they stopped reading my work. I know this because I started turning in shitty work and still got A’s. It was disappointing and frustrating. I was left aside for students who needed more assistance. To this day I feel I missed out on a lot of education, but at the time I didn’t do anything about it. If I’d been a better person, maybe I would have stood up and asked for more attention, but I hated being the center of attention or “rocking the boat”. So I skated through and graduated without much issue.

During my junior and senior years of college, I started working full time and going to class part time. I found a career path that had nothing to do with my schooling but had everything to do with things that interested me. Technology. I excelled at my job(s) and took pride in my work. As I moved up through the ranks of my technology job(s), I began to feel the imposter syndrome. I had grown up feeling as if I weren’t good enough, and that ingrained feeling led me right into feeling as if I were an imposter in my job…and essentially in my life. I felt I didn’t deserve any of the things that I had.

I met a young man while I was in college. Our early relationship was online, but then we began dating (irl). I didn’t date in high school or even mostly in college. I felt like I didn’t deserve to have a boyfriend. And when I got a boyfriend, I never felt good enough for him. It wasn’t that he was better than me in some way, it was my old baggage of never feeling good enough for anyone…or anything.

Being a good employee, a good wife, a good daughter, a good sister…I didn’t feel good enough. So my body resorted to what had worked for me as a pre-teen. It made me sick to release me from all those feelings of not good enough. If I was sick, I didn’t feel like I had the obligation or responsibility of trying to be good enough. Or doing things that were good enough. I had several vague illnesses that had no real source. I had labels put on me by different doctors that amounted to different “syndromes”, which really is just a collection of symptoms that couldn’t be attributed to anything specific. I had pain symptoms, fatigue, dizziness, balance issues, gastric issues. I went through a lot of doctors and a lot of tests, but I was never really given any concrete answers. Doctors attempted to help me resolve symptoms, but they were unable to give me the reason why I was sick. And I was really sick…a lot of times I couldn’t get out of bed. I was too fatigued and painful, I took a leave of absence from my job to deal with my ill health. After almost nine months, I was released from my job because I could not return in a timely fashion. I was sick in this way for close to 8 years, although at one point I was writing (and publishing) books. During this specific time I felt very involved in a community and my symptoms waned. They were still with me, but it was manageable. But for the most part my symptoms ranged in severity and specifics over the years. I was unable to hold a job during those 8 years. Most of my family and my husband understood my limitations, and rarely did they ask too much of me. If they did and I could not meet their expectations, they always made sure to tell me that it was no big deal. I wasn’t ever looking for attention when I was sick…I hated the ongoing doctor’s appointments and tests, so it wasn’t that I was seeking attention. I now think I was seeking a break from my own expectations for myself…if I wasn’t well then I didn’t have to strive for the perfection I expected of myself.

A few years later, I actually started feeling better and was able to do more in my life. My home circumstances changed, my parents were living very close by and I was spending more time with them. My husband continued to pursue his technology career and we finally felt more financially stable. Although I still felt badly that I was not bringing in any income, my husband was fine with the situation. My body began to heal, my mind felt comfortable, my spirit was buoyed. I was living in a way that was working for my body. I didn’t push myself too much, and yet when I needed my strength it was there. I felt at peace with my health even though it wasn’t perfect.

And then my mother was diagnosed with cancer. A relatively rare and aggressive cancer. My life changed…and so did my purpose. I became my mother’s cheerleader, her caretaker, her confidant, her friend. I was her secretary during doctor’s appointments–I took copious notes to review later–and I helped keep her calendar. I was with her all the time, keeping her occupied, keeping her on schedule, keeping her fed (this from the child/person who never cooked or baked because she knew in her heart her food would never be as good as her mother’s food)… I had flashes of doubt and impersonator syndrome, but it usually ended up being drowned out by the things I needed to do for my mother. My health stabilized and I found energy and strength that I didn’t know I possessed anymore. Taking care of my mom was not an obligation or responsibility…it was love. That was why my body allowed me to do that. I WAS good enough to love her that way.

After my mother’s two year battle and her passing, I grieved terribly. Other than my husband, my mother was my best friend. During the two years she lived with this terrible cancer, I spent almost every free minute with her. Losing her left me devastated…and lost. For two years I had a job, a purpose, and despite having no experience with caring for a sick person or dealing with cancer, I had been good at it. No one asked me to do the things I did or act the way I did, I just did it. I didn’t worry if what I was doing was good enough (until the end) because I was too involved in participating in my mother’s life and fight. But afterward I floundered. I looked for charities and volunteer opportunities to find a new purpose. But about a year and a half after my mother died, my body rebelled again. Thinking about it now I would not call it a rebellion, I would call it a rescue.

I had a very severe case of classic and vestibular migraine disease. There were months in the beginning where I could not leave my bed. Months where I could not walk, months when I had to go to doctor’s appointments in a wheelchair with dark glasses on even indoors. It took me close to two years to even begin to find recovery with medications, diet, supplements, vestibular therapy, and exercise. And then 2020 hit, and any of the plans I had to participate more fully in life fell away. I was given the opportunity to really focus on my mental health, on my healing, and on my transformation. My physical recovery continued–sometimes slowly and sometimes in leaps and bounds–and I focused my mental recovery on becoming who I wanted to be. And along the way, I have made some pretty surprising discoveries.

This discovery about my physical body and the illnesses that plague it, came unintended. I was going to work on a blog about a different discovery I’d had in therapy over 2020, and a whole different set of words came out. About my health, and how it has affected my life, mentally and emotionally.

My body tried to save me from the torment of feeling not good enough. Of the daily mental and emotional torture of feeling not good enough. When my career became “too much” and I began suffering with imposter syndrome and endless feelings of “not good enough”, my body introduced an illness that took over my life and my focus. I had years of “a break” from those “not good enough” feelings while I was sick because I didn’t have to feel not good enough when I was sick. Because all I had to do was exist. Obligations and responsibilities fell away during both lengthy illnesses…I allowed myself to put away concerns of “am I good enough” because surviving was good enough.

This realization was actually quite difficult for me. My first instinct was to be embarrassed that I “made myself sick” to avoid obligations and responsibilities (even if the obligations, responsibilities, and expectations were from myself). How do I tell my husband that I (or my body) made me sick so I didn’t have to deal with guilt or shame or criticism or judgement over whether or not I was good enough for…anything? Fortunately, my work in therapy came into play and I reminded myself that I did not consciously make the choice to be sick, that it was an autonomic response. And then I reminded myself that without that person–the one who was sick on and off for many years–I would not be the person I am today.

And thanks to my therapy, I am choosing to have compassion for the young girl and the young woman whose body did its best to shield and relieve her of the ongoing mental and emotional pain that would have beat her down in an ongoing fashion for all the years she was sick. I am grateful for the sacrifice that my body made for my psychological health, even if it felt like a struggle to survive during those years.

*I would like to note here that my chronic illnesses have been and are 100% real and sometimes physically disabling. I have not had a miraculous recovery since coming to understand that there might be at least partly psychological reasons for why I was and am sick. I have no idea what recovery might look and feel like, and I am not suggesting that anyone else’s chronic illnesses are not physiological.

 

The body electric…

Thursday night I started feeling unwell around bedtime. As we all know, I’m not keen on medication and I use it sparingly. But I really wasn’t feeling right so I took some Tylenol and tried to go to sleep. It’s also not unusual to have trouble sleeping, and I suffered with that until about 2am. I finally fell asleep, but through the night I woke up feeling headachy and feverish. It’s pretty rare for me to have a fever, but common for me to feel flushed and hot without any fever registering. I did my best to go back to sleep. Increasingly I was waking up every 30 minutes feeling hot and achy…muscle aches, body aches. No longer just a headache, my whole body felt icky.

When I woke up that morning, I didn’t want to move from my bed. I felt exhausted and yet I literally had just woken up. I pushed myself to get out of bed, to go to the bathroom and wash my face. I got dressed and went downstairs even though everything in me wanted to crawl back into bed. I still felt hot, flushed, achy, and as I moved around I realized I was nauseated. After about an hour of sitting upright in my recliner, I took a zofran pill which is a prescribed anti-emetic (which reduces nausea). I couldn’t concentrate on anything, I didn’t open my iPad or turn on the tv. I sat in my recliner, wrapped in my blanket, and rocked in the recliner. Hub brought me our touchless thermometer thingie and I checked my temperature on my forehead. It was normal but I felt feverish. I checked the temperature on my cheek–which felt like it was on fire–and it read 100.1. Everywhere else registered normal except my cheek. I was becoming increasingly concerned that I was starting to show symptoms of Covid-19.

Over the past month or so, since I’d been feeling better migraine-wise, I had been trying to get out more often. I was joining Hub on grocery trips–as well as the farmer’s market on Sundays–even though I wasn’t always going into the stores with him. On some errand trips I would wait in the car while he ran in to the stores. It was getting me out of the house a bit and giving Hub some relief from doing all the shopping alone. We were still careful, we wore our masks and using antibacterial hand wipes when we got back into the car. We didn’t stand or linger near other people in the stores, and we still shopped quickly. I knew I was putting myself at a slightly higher risk, but Hub had been doing the same for almost all of the pandemic and he’d been spared any infection. He actually has more risk factors than I do, but he’s also always recovered faster from things than I do.

Anyway, I sat in my recliner all Friday, feeling like crap, fatigued, exhausted, feverish, chills, and achy. I ate crackers and drank water but the thought of any food at all made me feel gross. When I went upstairs after Hub ate dinner, I took my temperature with an oral thermometer and found I did have a fever. It was 99.5, but for me that’s pretty high. I usually log in at 97.1, so although I wasn’t over 100, it was a pretty big increase for me. More and more I was becoming concerned that it was Covid-19. And I got a really bad feeling when Hub admitted he, too, was experiencing a rather unusual headache. He said he wasn’t feverish, but still… He took ibuprofen and said it cleared up the headache for him. We spent about an hour trying to figure out how I could get tested on a Saturday, and after a phone call with my doctor cousin we had a tentative plan. I checked my temperature again before bed and found it was 99.8. I took two Tylenol and crawled into bed. I was anxious about potentially having Covid-19, and even moreso that Hub and I might have it at the same time.

Saturday morning I had a telehealth with a new neurologist–so I could move to the new organization where my neuro nurse practitioner moved to–so Hub and I spent about an hour trying to set an appointment for Covid testing. No luck, really, as most places don’t do appointments or drive-throughs on the weekend. I had my telehealth appointment–10 minutes–having waited longer for the appointment than it actually took to have the appointment. I checked my temperature twice that morning–both normal for me–and we took care of the dogs and headed for a walk-in testing site. When we got there they said they weren’t sure if they were accepting more patients as they’d already seen and tested 100 people (it was 11am). So we waited for them to make a decision, and when the decision was YES they would be testing more people, I filled out paperwork and the tech said to come back at 2pm. So we turned around and headed home to take care of the dogs and try to eat something. We had just finished lunch at 12:30pm when Hub got a text from the clinic that they were ready for us…and the text was about 8 minutes old (Hub missed the buzz). So we rushed back out the door and back to the clinic. I checked in and was ushered into the waiting room, which had about 12-15 chairs, but was only seating four people at a time. I didn’t have to wait long and was moved into a room where I sat for another 15 minutes or so. The doctor came in–masked of course–looking overworked and underslept. He asked me a few question, said someone would be in to do both the rapid test and the more intensive PCR test. He was gone and replaced by a nurse shortly thereafter. She shoved one Q-tip up in my nose, then followed that by shoving another Q-tip up in my nose immediately after. It was fast and not painful, just weird. She said the doctor would call me in about an hour for the rapid test, and that I needed to sign up for their portal for the PCR test that would take 2-3 days to turn around.

Within an hour the tired doctor called and said my rapid test was negative. He told me to continue to quarantine until after I’d gotten the results from the PCR test. That was Saturday afternoon…today is Monday. I got the results from the more accurate PCR test that also came back negative. It’s wholly possible that I went too early for testing and the results were a false negative. It’s also possible they are correct (my symptoms have not worsened and the fever and headaches are gone, but the chills and achiness and incredible fatigue linger) and I had/have something else going on. Or I went too early for the virus to show up, also a possibility. Nothing I can do now except go forward. I’ll try to stay away from the stores again and keep my risk as low as possible. I’m not upset for myself about that, I just hate that everything always falls to Hub. He doesn’t complain but it’s a lot of constant ongoing responsibility for him.

This Covid-19 shit is the pits. Today the vaccines hit the public and I watched the frontline workers get the first shots. I hope it works for them and keeps them safe. When it trickles down to our “group” I will take it. I’ve never had a flu shot until this year as my health anxiety has kept me from trusting the universe. I took it this year, I had no issues (except long-term bruising), and I will take the Covid-19 vaccine when it’s offered. I’m grateful to have had a negative test, and grateful to be as well as I am.

I hope you are all healthy. Sending out good health vibes to you all.

 

In defense of my body

Six years ago I wrote a blog post about my body. At that time I thought I was ready to work on the relationship I had with my body. I had my list of cons and pros–all of which still stand–but I was unable to hold onto my gratitude for the physical that carries me through my life.

I have changed physically, emotionally, and mentally since that time, and yet my anger and disappointment in my body still exists as it did that day. Yesterday during my session with T, I talked about my relationship with my body, and how I want to come to an understanding of sorts. Really, I would like to find and hold onto the appreciation I should have for this body that holds my life spirit. It’s the only body I have…I choose to pursue a better relationship with it.

T asked me to look at my body as if it were a physical being on its own, a friend rather than a part of me. Would I be as abusive to a friend as I am to my body? Would I belittle and berate it? Would I be angry at how it stands, how it sits, how it moves? Would I call it names, tell it that it’s too ugly, too flabby, too big, too everything? I would never say or do these things to a friend, how is it that I allow myself to do and say these things to myself? This is not a new concept to me, that I treat myself way worse than I could ever allow myself to treat someone else. Why isn’t it getting through to me?

Every day I carry my craft bag up and down our stairs from bedroom to family room. In it are the things I use all the time, like my crochet supplies, my iPad, some books, my migraine tracking calendar and etc. It has to weigh less than five pounds. And yet there are evenings when I go upstairs that I feel so tired and so heavy, or my knees are tired and painful, that I struggle with the steps. Our steps are U shaped, so halfway up there is a landing that I stop on. I’m not under duress, I’m not sick, I really can climb the steps without issue, but during this year of 2020 I feel beyond. So the other night, I’m stopping on the landing–because maybe I stood a lot chopping and cooking for dinner–and I rest. And a thought hits me…for most of the years I’ve lived in this house and many more in our last house, my body carried fifteen times the weight of my craft bag on top of my current weight. Seventy five more pounds than I am carrying at the moment I had this thought.

My body did that on an almost daily basis. And yes, some days it was harder than others, and some days I took our residential elevator to the bedroom level. Some days my knees hurt more or less, my back hurt more or less, my feet hurt more or less, my myofascial pain flared or didn’t, my migraine pounded or spun, my head ached or didn’t, my stomach rebelled or didn’t…and still my body carried me. Still my overweight, overstretched, overused, over-abused, over-belitted, disrespected body carried me where I needed or wanted to go. My mind and spirit carried so much anger and disappointment with my body, and unrelentingly my body carried me. Yes, there were days when I wasn’t getting out of bed due to vertigo or pain or exhaustion…but my body still held me.

I have got to stop this hate, this disappointment, this abuse. Now. I choose to stop this hate and disappointment and abuse. My body clearly loves me or it wouldn’t do all these things for me…I am choosing to learn to love it in return. Every part, every roll and lump, every bit too big, too broad, too hairy, too short, too everything.

This body that carries me is my best friend. The kind of friend that will do anything and everything for you, oftentimes unasked. It’s time I do the same in return.

 

What’s mine is mine, what’s yours is (not) mine

One of the things I’ve been working on recently is owning the things that are mine, and letting go of the things that are not. Specifically, I’ve been dealing with this issue with Hub recently. I don’t talk about his issues too much because he’s a private person and I believe it’s his right to keep his private stuff to himself. I’m going to try to walk a tightrope here of what I will and won’t share, because his issues and my issues often intertwine.

I have always carried the emotional load in almost all of my familial relationships. This is something I have struggled with in my marriage as well. I did this automatically, not even realizing what I was doing until very recently. I wish I could say that my family (and my husband) abused my capabilities, but truthfully I did it because it seemed to work for me. Now I know it really doesn’t work for me, as I’m finally acknowledging that my body has physically been trying to get my attention by breaking down with multiple chronic illnesses that really could never be explained. While I’m working toward my transformation, my chronic illnesses—which often left me bedridden for weeks or months at a time—are easing. I’m feeling more energy and seeing more of the person I want to become.

One (technically two) of the recent examples of how I have carried the emotional load in my relationships happened with Hub (since he’s the guy I actually live with 24/7!). My father had called to tell me he was going for a stress test as per his doctor’s recommendations. The night before his test appointment, I acknowledged to myself that he would be in the hands of an actual doctor (it’s required for stress tests), and if anything happened, he was literally upstairs from their Urgent Care unit.

The next morning, my father called me after his early morning appointment to say he was home. The stress test had been truncated, due to something they saw on his ekg. He was waiting to hear from his doctor, so I said okay, asked him to update me whenever he had more information. Hub came into the room a short while later, literally telling me that I’d been worried about my father’s appointment. My internal hackles went up, because I don’t feel it’s appropriate for Hub to tell me how I’m feeling. I said no, that I hadn’t been worried, that I knew my father had been in good hands. Hub accused me of having my cell phone under my pillow, awaiting my father’s call. I said I had not had my phone under my pillow, and I hadn’t given up any sleep over my father’s appointment. Hub said he was skeptical; I was feeling as if Hub didn’t believe me and thus I felt not heard. I was angry and not okay with the situation.

Technically speaking, Hub had probably been worried about my father (they are sort of close, and my father has been more of a father to Hub than his own father). But because I’ve historically been the one to “worry” in our relationship, Hub pushed his worries onto me so that he didn’t have to deal with it as his own.

Later the same day, I had a text from B3 about his dogs and his trip to see a behaviorist for them. Hub and I are dog lovers, and B3 has been struggling with his two dogs, especially now that he has a small (almost walking) baby in the house. I told Hub what the text said and he made a face. Again he TOLD me that I had been worried about the dogs and what was going to happen at the behaviorist’s facility. I bristled for the second time that day, under the same exact circumstances. Hub was telling me how I was feeling, and for the second time he was wrong. I told Hub I had not been worried about the behaviorist meeting…and he told me he didn’t believe me. That I had recently told him I was worried about the dogs. I tried to explain that I was taking steps to stop worrying about things that I had no control over. I said I was sad that the dogs were struggling, and that it was unfortunate they were in the situation they were in. But I was not taking my time and energy to worry over an appointment that I had no say in and no control over. I suspected, again, that Hub was pushing his worry onto me because I’m usually the one who carries the emotional load between the two of us. I said to him specifically, if you are worried about the dogs, why can’t you say that? He said he knew I was worried, attempting to distract the conversation away from him and his emotions. I refused to let him get away with that, and I asked again why he didn’t just say he was worried about the dogs. He got mad and said I was worrying and I should admit it. I told him again that I was working hard to not worry about other people’s things, that I had enough of my own to think about.

I was pissed that he was telling me how I was feeling. And I was pissed that he didn’t believe me—and in fact attacked my honesty—when I was telling him the truth. I feel unheard, untrusted, and unworthy of being believed. We stopped the conversation since it was heating up, and later in joint therapy we talked about it. I also addressed it in my individual therapy, which was when T started talking about me carrying the emotional load in most of my relationships. She said she was proud that I had seen what was happening with Hub, and that I confronted the situation as it was happening. What I still had to work on was how to address it with Hub so that neither of us felt attacked or disbelieved. We continue to work on our communication skills together.

And the issues of feeling his feelings (or not) belong to Hub, not to me. The issue I was dealing with—carrying the emotional load for others—was what I had to continue to work on.

 

Stress baking

Mom’s chocolate chocolate chip cookies.

My mother and grandmother were good cooks. They both also had their trademark baked products, which were part of my childhood and growing up years. I never really had any major interest in baking. I mean, I loved the results and I would eat whatever was baked, but the recipes and the ingredients and the rules…blah blah bah. Too much for me. And I don’t see myself as much of a domestic diva like my mom or nana. My biggest efforts were mostly in the area of ice cream, because I’ve been making homemade ice cream for many years. Only last year did I host an ice cream social where I made all the ice creams and also baked items to top the ice cream or for the ice cream to go on top of. Cookies, brownies, cake, etc.

With the change in my migraine disease, I stopped eating out and I stopped eating processed food. If there was something I wanted to eat, I learned how to make it or I went without. Every processed food product had something I needed to avoid to get my migraine attacks under control. Add in my gluten free needs, my dairy free and often egg free needs, my no nuts or legumes or beans needs…and my kosher home, I had a very small menu of options. I was eating a very small list of whole foods, no sauces no dressings…nada. Bland chicken and roast veggies. Trade out chicken for beef or fish or lamb or turkey, and you had my lunches and my dinners. I still don’t eat breakfast, and I wasn’t eating any snacks or drinking anything but water.

But I started baking items for family get togethers, where I was bringing my own food when I was able to attend. I was trying to bake nostalgic items for my brothers and my father…things my mom used to bake. I had copies of many of her recipes, and what I didn’t have on hand I could retrieve from her files at my father’s house. Not everything came out perfectly, but I was getting joy from keeping my mother alive through her baking. Then I started baking items for people’s birthdays…things they requested or things I knew they loved from mom. Seeing how happy the food made my family and hub, I began baking more often.

COVID came, and the world changed. My bubble was small–Hub and me, my father, and B1 who lives with my father. I was stressed because basically all of us were high risk, and yet we had to have a way to get groceries and other necessities. We tried ordering from the grocery stores, but either we couldn’t get a delivery slot or all of our food items were out of stock. We tried to do pickup, but the things we were needing were out of stock. Hub started making grocery trips, buying food for us and for my father and brother.

I was dealing with my stress by crocheting, but it wasn’t working as well as it had before COVID. I needed to do something that took all my concentration, and these days I can crochet with my eyes close. So when I was able, I went back to baking. I baked things and then we left the items on B3’s porch with a ding-dong-ditch (ring the bell and run) because they were not in our bubble. I would have done it for B2, but they live too far away (B3 is 10 minutes away). I was baking items and bringing to my father’s for him and B1. I was baking stuff for Hub. I wasn’t baking for me, because most of the items required ingredients I still couldn’t eat due to the migraines.

COVID dragged on, and on, and on. All the sudden everyone was talking about the COVID fifteen…the weight everyone was putting on because of being stuck at home, not getting to the gym, not going out and being active, and stress eating. I kept baking and sharing because the more stressed I got, the more I needed the distraction.

Then I had a conversation with T (my therapist) about my own food issues. I’ve been watching my portion control for months, long before COVID, because my medication made me gain weight that left me feeling uncomfortable. We discussed if I was obsessing about my food, if I was restricting with my calorie counting. She said if I was thinking there was a problem, there probably was and I should try to address it before it got too far.

In considering my issue, I’ve come to realize that I was making items for people who had not asked for it. I thought I was being kind and loving, but I was completely ignoring the things these people were saying to me. No one came out and said, “Stop baking sweets for me!”, but neither did they put in requests for any kind of food. I was pushing food on people, and probably because I couldn’t eat it myself.

So I stopped baking, unless someone asked for something. But this also took away my stress relief. So I started contacting local organizations, like the fire department, our local shelters, the day centers, thinking I could bake and share with the community. But no one wants anything due to the COVID issues.

So I’m trying to find something else to focus on. At the moment–in case you haven’t noticed–it’s blogging.

I miss baking. I miss my extended family. I miss having some sense of normalcy. I know I’m not alone in most of these things, and I’m well aware many have it worse than I do. So I’m doing the best I can to support my family, support my community (wear a mask, don’t be a jerk you infectious little plague rat), and myself.

Hope you are all managing, as that is the best I think we can hope for these days.

 

Five years on…

In 2015, I was seeing a gynecology nurse practitioner near my home. I was not good with keeping up with my gynecological health, at least for about 15 years or so? Maybe less, because I had some issues in my twenties and I was seeing a gynecologist that I loved. Unfortunately, when I got sick in 2001, my general health became front and center for me. I made the rounds of almost every doctor specialty there was, except for the gynecologist, seeking understanding and treatment for my new chronic illnesses. When I found out what was wrong and how I could treat or live with it

I had my final appointment with my gyn oncologist last month. It was a month late due to COVID, but I ended up going to the office to get a final physical exam. And to say goodbye to my gyn onc doctor. I don’t know how to explain what this doctor did for me, and not just in a surgical way of removing my cancer.

I actually met this particular doctor probably five years (or so) before my actual cancer. I’d been seeing a gynecologist near my home, someone new to me but in the practice I’d been using for a couple of years. I met with this new gynecologist, explained the issues I’d been having (odd bleeding patterns, major cramping and pain, etc). The doctor told me I likely had big fibroids that were causing my issues, and if I wasn’t “planning to use my uterus”, I might as well get rid of it. I was in my thirties and the truth was, I was not planning to use my uterus. But to have a doctor who had barely examined me, didn’t run any bloodwork or ask for any images (I had an ultrasound on file from one of the other doctors in the practice)…she was suggesting a traditional hysterectomy. I was shocked and afraid, and I remember her saying to me, “I’m an excellent surgeon, I got this. I got this, no problem, you’ll do fine.”

I’d never had surgery before, I had only been in the hospital once overnight for a combination of mono and strep throat. I was not taking any medications at this point (I was in a very medication-phobic existence), I was terrified of surgery, and I didn’t understand why she was so willing to rip organs from my body. At a first meeting. Yikes. So after I went home to think about it–and cry hysterically–I decided to get a second opinion. I went to the internet and researched the best gynecologists in my state, and found someone who had been rated in the top ten for most of the years those lists existed. Not only was he rated as excellent, he was also skilled in robotic hysterectomies, AND he was actually one of the few gynecologists who was also teaching the robotic surgeries, and was on the hospital panel for robotic research. And he was an hour away. And taking new patients.

I made the appointment to go see him, and when Hub and I went to his office, we were extremely impressed. Not that the offices were fancy–they were very homey–but that this very tall, big man, was gentle. He had a kind face, kind words, and compassion ooozed from every part of him. He did an exam, reviewed my previous ultrasound, and then he sat down to talk to both of us. As he spoke, he gave us options, telling us it was very appropriate to “wait and see” at my age and with my imagery. If we wanted to consider surgery, he recommended robotic, but he wasn’t convinced it was necessary immediately. I felt immense relief, and I said to him, “If it changes in the next year or two, can I come back to you? Will you see me again?” He smiled and it was like a reassuring hug from a relative. He told me he would be there, and they would keep my charts and I would be treated like his regular patients. No long waiting period, no new patient appointment again. We left his office feeling like we had a plan, and I was planning to get a regular gynecologist near home for annual exams.

I did get regular annual exams and the gyn knew about my fibroids. She kept saying if I could manage the pain and unusual bleeding, they would just keep track of the size of the fibroids. But a few years later, there was a new issue, and the gyn wanted to get a biopsy of my uterine lining. This was an out-patient procedure, but I was still terrified. I took no medication, they did the biopsy, and I went home to wait. I wasn’t comfortable, but the pain was manageable. The biopsy came back as benign, but my current gyn recommended a hysterectomy, saving my ovaries so I didn’t go into an abrupt menopausal state.

I knew I wanted to go back to the other gynecologist for a second opinion. I made an appointment and went with my test results. He agreed, saying he could do a robotic surgery where I would be in and out of the hospital the same day, and that recovery would be MUCH easier than a standard abdominal hysterectomy. Knowing his expertise and experience, I trusted him and went in for surgery 10 days later (uterus and cervix were being removed, because the cervix can actually regrow fibroid). He stopped in to see me before surgery, and then he came back later in the day before I was released. Both time he was kind but confident, just as he had been in our initial meeting years prior. It wasn’t an arrogant kind of confident, it was a confidence borne of training, experience, and hands-on knowledge.

I had a few follow-up appointments set, so that my incisions (internal and external) could be watched. After my first appointment, on a Sunday at dinnertime, our phone rang. It was him–not his office or his nurse–calling to break the news that the routine biopsy of my uterine tissues had come back as cancerous. It was very early, stage 1a, and he was confident that in removing my uterus and fibroids that the surgery had successfully removed the cancer. However, the type of cancer was estrogen fed and he wanted to remove my ovaries and tubes to get rid of the hormones and anything else that could grow tissue. The compassion was clear as I spoke to him, and his confidence in my ability to undergo and recover after another surgery made me feel relieved. The worst had happened, I had cancer, but he had taken care of it, and would finish the work in the second surgery, including a pelvic wash to test for any lingering cancer cells.

I managed the second surgery six weeks after the first. I was on the schedule for follow-up appointments, and I went with questions about how I was going to be followed for potential recurrences. The doctor spent as much time as I needed answering questions. He wrote notes for me, he drw pictures, he discussed percentages of recurrences, of metastases. He talked about “connected” cancer organs (breast and colon), he said he’d be seeing me every six months for five years, with CT scans every year.

At every appointment, he was kind and patient, compassionate, knowledgeable, current on new technologies and studies and medications. When my mother passed, he spent time with me, asking about her cancer and her treatment, giving his reassurance that it sounded like everything that could have been done was done. It was silly, but I looked forward to seeing him because I felt like I was getting a periodic dose of OK. You’re okay, you’re going to be okay, things will be okay. You will recover, you will do well, you will have a life to live. The drive to see him sucked, especially once my migraines recurred, but the appointments were worth it.

This past August was my very last appointment. I made him a gift (I crocheted him a uterus and fallopian tubes) and he said it was perfect. I was really pissed because COVID robbed me of being able to hug this person that had been such a big part of my adult life. He’d been my safety net, my cheerleader, my support system. I know it sounds weird, but now that it was over, I was sad and going to miss him.

I could continue to see him as a regular gyn patient, but the truth is there are many competent doctors I could see closer to home. And by letting him go from my life, it opens him up to other people who need him the way I needed him. Although I hope to never see him again, I do regret not seeing him again. Maybe I’ll change my mind in the spring, when I need to have an annual exam, so who knows.

I’ve been “released” from my cancer watch after five years of living in six month increments. I told my therapist I’m not entirely sure how to live without this safety net. There have been so may changes in the last four years, including losing my mother and my neurology nurse practitioner (another blog), and now my gyn oncologist. I told my therapist if she moves away, I’m not sure I’d recover from all the abandonment issues.

This turned out way longer than I expected. Thanks for taking the trip with me.

 

Two years, many tears, lots of fears

I think it’s been almost two years since I posted a blog? I know I posted briefly about my migraine disease, but I’ll talk a little about it here, as well as update (in short) what has been happening.

I’m coming to you from a new little laptop that my husband helped me pick out. I had a bigger, heavier laptop that I used when I was still working on our publishing company. The laptop is still good, it works fantastic and has a terrific screen, but it weighs almost 10 pounds. I spend the majority of my time on my phone, my iPad, or the iPad Pro I inherited from my husband. I’ve become accustomed to using APPS for everything, so much so that when I needed to set up this new laptop I kept asking my husband “where’s the app for this/that?” Guys, I used to be a tech person as a career before my first illness in the early 2000s. I’m so far out of it, and so ingrained in the tablets, that I was lost with the new (windows 10) laptop. But I can’t type on the iPad or iPad pro. Not even with the little keyboards you can attach, because…little and flat. So I told hub I would forgo a phone upgrade (I hate all the new phones and my old phone works fine) if I could buy a mid-size, lighter weight laptop. He’s a sucker for me, so of course he said go for it.

So far I’m enjoying the laptop, but I haven’t used it too much as it’s just a few days old. I spent most of yesterday migrating files from my old laptop to the new one, so really I’ve only had it a day. This is my first time typing anything of any length, and not hunt-and-pecking. 🙂

On to the updates. You can read some background here and here. I’m FINALLY at a place where my medication, diet, and other bits have been helping me more consistently. I’m certainly nowhere near 100%, but I’m in a better position than I’ve been over the last three years. I’ve had to give up a lot–food and activities–even prior to COVID, and add a ton of medications and supplements (and diet and exercise and more therapy and attempts at meditation), and I’m still grieving the loss of who I was and how I was able to live.

My migraine attacks can be classic, with head pain and light/sound sensitivity, nausea, and the like. But lucky me, I also have what is called vestibular migraine, where the attacks come with vertigo, nystagmus, oscillopsia, imbalance, dizziness (different from vertigo!), and more. I can even have both sets of symptoms at the same time. Yay. I’m on two different prescription preventatives (that come with their own side effects, of course), several abortives to try to stop the break through attacks before they happen, and a benzo as a rescue, mostly for the vestibular migraine symptoms (like dizziness and imbalance, vertigo and nystagmus).

Part of my new life includes a diet change. As I was doing the Whole30, the recurrence of migraine disease happened, so I went from eating Whole30 to eating what is called Heal Your Headache diet. This diet was crafted specifically for migraneurs, helping you keep away from foods that trigger migraine attacks. Of course, as with any diet, every person is an individual. And of course, as it would happen, Whole30 is basically LOADED with common migraine trigger foods. Like nuts. And of course I was eating chocolate, and prior to W30 I was eating lots of cheese and beans. Basically, all those had to go. In the early stages of HYH diet, I ate basically the same thing every day that I knew was safe. If I ate something that triggered me, I usually had a vertigo attack, or nystagmus. Both of those symptoms SUUUUCK, so I quickly became fearful of trying different foods.

Three years later, I’m still trying to get my diet and fear of foods/attacks under control. I’m eating more variety, but still limited. I’ve been having longer periods of feeling well, then relapses again for what seemed like no reason. I’ve upped my preventative medications, added in a second (propranolol, which is a blood pressure medication that supposedly works well with the tricyclic antidepressant I’m already on), gotten the two new migraine-specific abortives, and I’m on a shit-ton of supplements. I have no idea if any of the supplements are working, but I’m kind of afraid to stop them. My previous phobia about taking any kind of medications (RX or OTC) has changed dramatically. I don’t love taking new meds, but I also don’t cry and worry and require Hub to sit with me when I take them. I guess that’s a positive? I also am more likely to take a medication to stop a forthcoming attack, because taking your meds early often makes the difference in the meds working well.

Unfortunately, it seems like some of the setbacks I’ve been having were due to eating foods that weren’t necessarily common migraine triggers, but COULD BE migraine triggers. One is gelatin (technically, fish gelatin–which I thought would be safe but was wrong about) that acts like MSG in your body (MSG is a huge migraine trigger, one of the most common). I was using vegetarian marshmallows as a snack, having one or two big ones a day, or a small handful of small ones. I wasn’t tracking this originally on my food tracker, so I couldn’t go back and look to see where and when I’d eaten them and if they corresponded with the setbacks. So when I had a big setback recently, I took the new abortives multiple days in a row and stopped eating the marshmallows, and I’ve been doing okay. Prior to this setback, I think the previous one was from brown sugar, which is made with molasses, which is fermented. Ferment foods CAN BE a migraine trigger…it was either that or oats, but fermented foods are more common. I stopped both the brown sugar and oats at the same time, but I’ll try oats again soon. Prior to that, I was eating some “safe” caramel candies in the evening as a treat. I had a setback so I stopped the caramels, but it took a long time to feel better, so I wasn’t sure it was the caramels. But recently I looked at the ingredients and saw…brown sugar. So I am avoiding those for now, too. It’s like a weird and horrible puzzle that you can’t figure out. Trigger foods can set you off the same day you eat it, or not for two weeks (as you build up less and less of a tolerance), so it’s near to impossible to figure them out.

Meanwhile, the setbacks I’ve been having the last year plus have been weeks-long episodes of oscillopsia. Oscillopsia is the sensation that the surrounding environment is constantly in motion when it is, in fact, stationary. Oscillopsia is usually a symptom of conditions that affect eye movement or the eye’s ability to stabilize images, especially during movement.

That shit is no joke. I can’t see when I move my head, and walking makes your head move. For me, the environment swings left to right in a wobbly fashion, and more recently also swings up and down in a wobbly fashion. And not one of the medications I have would touch it. Only this last relapse, where I stopped eating the marshmallows right away and took the migraine abortives three days in a row, did I get some relief after a few days. Normally I can be stuck with the oscillopsia for 10-21 days, 24/7.

Also, I don’t leave the house for anything. In the last six months, I’ve gone to my oncology appointment and gotten my mammogram. Hub goes grocery shopping every week, and runs any other errands needed. He’s been working from home every day since COVID, so neither of us is in contact with others for any length of time. Considering my health, Hub’s health, and my father’s health (who is part of our “bubble”), we are staying out of circulation as much as possible. Between COVID and my migraine disease, I haven’t eaten outside my house in over 3 years. And I haven’t eaten hardly anything that isn’t whole foods, or made ourselves at home from whole foods (with the exception of marshmallows, caramels, and popcorn…which are my snacks). We cook and bake a lot now.

It’s been really difficult, and an experience I wouldn’t wish on anyone (except maybe the asshole in the white house, but I won’t digress). Most people don’t really understand because they’ve never dealt with vertigo or the other visual issues. All of it is exhausting, physically and mentally. I’m still trying hard to find things to be grateful for every day, because I know that can make a difference. I’m also still seeing my therapist (telehealth) on a regular basis, which is helpful.

Another time we’ll talk about my father, my #2 brother (B2), my #3 brother, and various other bits and bytes.