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.

 

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.

 

Be a river rock

During my most recent session with T, we were talking about the election (I’m writing this on November 6) and how I was handling the whole thing. I’m guessing this was how she was starting out all of her sessions with her clients. I told her that I was horrified that so many people voted for the incumbent, with the clear understanding of how he has behaved over the last four years. She tried to give me more information in the hopes that I would expand my understanding, but it didn’t work.

Anyway, the conversation moved on to what could I do about how I was feeling. I said I wasn’t deathly depressed or in a pit of anxiety…I was just sad and angry. I felt I was moderating my reactions in a pretty healthy way, but that my overall feeling was… well, fuck.

As expected, she laughed. And then she asked me what I could do to prepare to move beyond fuck, and into something that I could control. There is no controlling the elections, or the results, or whatever the aftermath was going to be, but I could decide how I was going to handle myself. I said that I felt very small and insignificant in the face of everything happening–and that could happen–in the post election world. T told me that she had a really amazing teen client who said that she felt like a grain of sand, so tiny and insignificant that she wasn’t sure anything she was doing was making a difference. But T told her you are just one of a million grains of sand on the beach. Look around and see the beach that has been created by each individual grain of sand that has come together.

I said I could see what she was saying. But my example was the river rocks in the stream on my father’s property. Hub and I walked that stream recently, so I was familiar with the idea of the river rocks coming together in the stream. Just one rock can affect the water’s movement in the stream, a slew of them together can change the path and pattern of the water. So T asked me what I wanted to do to change the path and pattern of my water.

I said my feeling was to continue working in my community to support people and pets who need help. Hub and I have been helping to stock the local animal control’s “pet pantry”, where anyone who needs help can come in and get food and supplies for their pets. The pantry is mobile, and they setup somewhere and pass out food and supplies without any questions. The animal control keeps up an amazon list so that when they need to restock their pantry, they can put a call out to their FaceBook followers to help restock the larder.

We are also working to help our local crisis center/shelter. Last month we bought about 30 blankets for the shelter in anticipation of demand as the weather gets colder. Just today I emailed my contact and asked what “immediate” needs they had, then Hub and I ran out and bought the food items they were asking for. We dropped three big boxes off this morning. Next month we’ll buy and give them gift cards for the holidays for their shelter clients, since they won’t take toys and clothes this year due to COVID.

I participate in several Facebook groups–senior dog groups, migraine groups–and I try to offer my experiences when people have questions. I have been given great suggestions and learned so much from the groups and I want to make sure I give back in return.

Throughout the year, Hub and I also give to other charities, both for kids and for animals, as those are the ones closest to our hearts. Also if friends or family members are working with a charity and need support, we try to give there as well.

Then there are the hats I crochet every year, going to the infusion center where my mother was treated. Last year it was about 160 hats, this year I’m hoping for 200 (I’m at 176 right now). Last year I also crocheted scarves for the local crisis center, which I have also done this year.

Some of these things seem small to me, but even the small rocks can create change in the waters.

 

Farm fun

Yeah, I know, don’t be weird about it. (Trigger warning, omg so much food talk and pictures…)

A few weeks ago, when Hub took off a week for our anniversary, one of the things we wanted to do was go to a local farm to buy fresh “groceries”. It was about 30 minutes from our house and we went smack in the middle of the day so there would be fewer people there. Also, it was cold and sort of raining, so we had hopes there wouldn’t be a lot of people.

I didn’t take pictures, but I should have. We were too excited (nerd alert!) to be checking out what fresh fruits and vegetables they would have. Okay, Hub was excited about fresh bread (from a local baker) and I was hyped to get fresh dairy items (from a local dairy farm). Bad news, the dairy refrigerators were empty. We were there on a Tuesday, and learned that their dairy is re-stocked on Thursdays and were usually sold out over the weekend. Booo! Even their bread selection wasn’t great. On the upside, we bought some nice fresh fruits and veggies–including some beautiful lettuces–and we bought my father a jar of beet balls. Pickled beet balls.

That’s a giant picture of beet balls.

We also bought a jar of local honey for me. Cuz I love me some local honey. It was a fun trip, even though we had some disappointment.

The same week, we decided to check out a local farmer’s market about 20 minutes away. It was a Sunday, it was cold, I bundled up and we went prepared with our reusable bags. Although there were less vendors than we expected, we were kind of overwhelmed with the fresh fruits and veggie options. At the very first vendor, we loaded up with squashes (yellow, zucchini, spaghetti), lettuces, spinach, tomatoes, broccoli, and cauliflower. The next vender had more than 15 different types of apples (!) and multiple varieties of pears. Clearly they knew what they were doing because each apple and pear had a little sign with how they tasted/what their characteristics were. Hub picked out random apples to try, while I bought some small bosc pears (my fave), and some ginormous Shenandoah pears. I’d never heard of them before, but the description said “sweet and spicy” so I was sold. I found out later they are a variety of Bartlett pears, but they taste like a cross between a pear and a granny smith apple (it’s lumpier and bumpier than a regular Bartlett). Needless to say, I enjoyed the hell out of those (and also made Hub take me the next weekend again to get MORE). We ran across a vendor selling fresh chicken eggs and fresh duck eggs, so we bought one container of both. I’ve never had fresh chicken eggs before, and I’d never even seen duck eggs in real life before. We bought a few treats for our pups (there was a canine food/treat bakery there), and Hub bought himself a fresh, hot waffle smothered in nutella and bacon. He said it was yummers, as he was smashing it into his waffle-hole.

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We had no plans for the chicken or duck eggs. When we got home, I decided to make homemade mayonnaise with the chicken eggs to see if it tasted any better than homemade mayo that I make with store-bought eggs. Sad spoiler, I don’t think it tasted any different. We also had no expectations for the duck eggs, we just couldn’t pass up the opportunity. I pinged an experienced baker friend and asked her what to do with the duck eggs; she suggested custard or a pudding (because of the extra richness of duck eggs), although she confessed she’d never used them before. So pudding we did (the following weekend).

Technically, Hub fried one of the six duck eggs (over hard) to see if it tasted any differently than a chicken egg. He said the differences were subtle. Meanwhile, we made a last minute run to the first farm the following Thursday, where we ogled all the delicious options in the stocked dairy refrigerators (so much fresh cheese, but I couldn’t east most of it because it would not be migraine friendly). We ended up buying a bunch of small containers of heavy cream, a couple of whole milk containers (for me and for my father), and two pounds of fresh butter (plus half a pound for Dad). Hub bought fresh cheese bread, we found more tomatoes for my father, and we headed home. Upon arriving home, yours truly pulled out some crackers (they were easily available) and slathered them in butter just so I could try the butter. OMG that butter. The farm closes for the season soon (closed by the time this posts) and I’m considering making a final run to buy more butter. Like ten pounds. OMG so good. I roasted spaghetti squash with the butter for dinner. I also roasted my other squashes (Hub doesn’t eat those) with the butter for myself for the week and YUM. I have also continued to snack on crackers with butter…obviously the crackers are just butter delivery systems. I mean eating butter straight out of the container would be weird. Delicious, but weird.

On Sunday following the dairy acquisition, we made a MAPLE PUDDING WITH THE FRESH HEAVY CREAM AND REMAINING DUCK EGGS THAT WAS SO AMAZING THAT I ALMOST COULDN’T STAND NOT EATING ALL OF IT AT ONCE. Ahem. We had doubled the recipe, it was a lot of pudding and I would have been delightfully ill if I had eaten all the pudding. We also made fresh whipped cream with some of the heavy cream leftover from the pudding recipe. I’ve never had maple pudding before, nor the duck eggs. I believe the duck eggs and the fresh heavy cream (and butter) made an amazingly smooth, creamy, riiiiich pudding. We used real dark amber maple syrup, which didn’t hurt one bit. Please, drool over it…

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Also, I didn’t mention that during our anniversary week, Hub and I made gluten free funnel cake. I’ve been asking about doing this for years and we just never got around to it. It was well worth getting around to…

So much yum. And incredibly easy once you get the concept.

Not pictured, the ricotta donuts rolled in cinnamon and sugar that we decided to make since we were already heating up oil for frying. They, too, were yummalicous.

You would think all I do is eat. Jeezum wheezum. Truthfully, I have been on a very restrictive diet for my migraines and I’ve been afraid to eat anything new. Over these months of COVID times, since I’ve been able to identify some triggers that really screwed me up, I’ve been adding some items back into my diet. And since I’ve been able to get my weight under pretty good control, I wanted to splurge over our anniversary stay-cation. The funnel cake, the ricotta donuts, the maple puuuuudding…those have been my gifts to myself. To enjoy food when I want to enjoy it. And so I enjoyed, and I took the opportunity to learn to relax a little bit. I’m grateful to have had the opportunity to enjoy food again. A lot of time I eat to fuel and to watch my weight (migraine medication has helped me so much that I’m willing to take the extra effort to watch my weight while taking the meds…almost all of the options have weight gain as a side effect), so I’m learning that there is a time to enjoy foods as well.

ETA: Meanwhile, tonight I roasted more yellow squash and zucchini tonight (spaghetti squash again this past Sunday) from the farmer’s market Sunday morning. And tonight we roasted sweet potatoes from the market, and something called Honeynut squash. It’s related to butternut squash but is smaller and sweeter, and all around more flavorful. Pictures? Why yes…

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I’ve already instructed Hub that we are going back to the farmer’s market this weekend. He was agreeable. I don’t think we’re going to make the farm (with the delish dairy) tomorrow, and then they are closed for the season. Question of the day? Where will I find my fresh butttttter???

 

Empty drawers

Bad lighting, sorry!

I am still learning about my new, smaller body. It’s at once mine and not mine, as I am attempting to move it, wash it, dress it, understand it… When I first lost the weight, I bought a few new things to wear that better fit my body. The reason I did that was because I had been wanting to replace some old pairs of (comfortable) jeans. And when I mean old, I mean…oh jeez, probably more than 15 years old. They fit okay, I took good care of them so they were in good shape, and I liked the colors (one was purple, another was black, the third was a standard blue). Before and after my weight loss, my biggest issue with jeans was that my hips were a good bit larger than my waist, so jeans never fit right. If they fit at the hips, they were too big in the waist. I didn’t wear belts, I wasn’t paying to have a $20 pair of jeans altered, I just dealt with it. The jeans I had were sized/shaped in a way that the gap at my waist wasn’t horrendous, and I mostly covered it with long tunic shirts anyway. For the rest of my wardrobe, I bought knit pants that had elastic waistbands, they were forgiving and stretchy knit that I could wear even if my size changed. I bought leggings and lounge pants for around the house (since I hadn’t worked out of the house in years). I bought tee shirts in tunic lengths to cover my hips and butt. I dressed for comfort, wasn’t looking to show my body but rather was looking for clothes that covered me. The three pairs of jeans I had were the most “fitted” items I owned, and I didn’t even wear them that much because they were not meant for warm climates, so they were winter-only items. And I didn’t bother to wear them at home. Winter sometimes came and went without me going out of the house, so the jeans did not see consistent wear.

I had a slew of clothes from stores like Roaman’s and Woman Within (who are now the same company), because they were the stores that carried my sizes. I bought the same clothes over and over again, when they were on sale so I wasn’t spending a lot of money. Sure the clothes wore out, but I literally bought pants on sale for $10 in every color I could bear wearing. Sometimes I bought multiple pairs in black, blue, and gray. If I was daring, I bought purple pants. Then I had the $10 tunic shirts from the same store, during the same sale. For years I lived (at home) in leggings. Over the last five or six years, I’ve been wearing men’s lounge pants from Target that I buy on sale. They last forever, they’re comfortable, and they have GREAT POCKETS. As I was losing some weight, I went down in sizes, but continued to buy the same lounge pants. And I was collecting tank tops (thanks to my heat intolerance) from whatever store had longer length sizes. Again, cheap and easy care, because I don’t work and I didn’t have to worry about anything more than (sloppy) casual clothes.

As I was buying smaller sizes in clothing, I started taking the larger sizes out of my closet. I hang most of my clothes, so my dresser drawers have either held duplicates of clothing, or things I wasn’t ready to get rid of. I’ve gone up and down in weight for my entire life, but I’ve never lost so much weight as I have in the last four years. I assumed, like every other period in my life, I would just put the weight back on. So far, that did happen because of my migraine medication, but I was able to catch it after 15 pounds. With great concentration and attention, I have lost all of that weight again, and I’m very near to my final goal (another 2 pounds!). I am planning to stay at this weight because it is where I am physically comfortable.

I’ve had so many clothes sitting in my dresser drawers that are…four sizes too big. I was (and am) afraid to get rid of them, because what if I gain the weight and need clothes again? What if I fail again? What if…what if…what if… Last weekend, I got a bug up my butt and went through several drawers in one of my dressers and threw all the bigger clothes into bags for donation. I felt…okay. I knew I still had more drawers of clothing, so I let it go for the time being. Last night I ordered clothes from Woman Within again, because I wanted new leggings that fit and I was familiar with their options. And they were cheap. I stopped myself from buying their tunic tee shirts, because I don’t wear that kind of shirt anymore. And I didn’t buy any of their knit pants, but I have several pairs in only a size or two up and they fit for when I need them.

Tonight I went to my other dresser and started stuffing more clothes into trash bags. Pants that were four sizes too big, shirts that were too big and I would probably never wear again. I had clothes that I’d bought my mother in the last months of her life because she had lymphedema in her legs and needed stretchy knit pants. When she died, I took the pants from her house because I wanted to clean them, and they just ended up in my drawers. I had history with every pair of pants and shirt that I ripped out of the drawers and stuffed into the bags. I had lived my life in these clothes, covering my body without much thought. Covering my body with clothes that covered, not that fit.

After I lost the weight the first time (before the medication issue), I bought jeans. I struggle to find jeans again because my body shape is still such that my hips are 10″ bigger than my waist. I bought and returned clothes (from online) over and over again, giving up time and again. I finally found two pairs of jeans that were manageable, and I bought them. Then I hung them in my closet and didn’t wear them for months. When the winter season came after I bought the jeans, I had nowhere to go, and I was often sick from my migraine disease. I finally started wearing them to therapy because that was the only time I left the house. The winter is coming, I’m hoping to wear them again. I mostly like how they fit my body, and I’m learning to be okay with showing my shape.

I bought a pair of knee high boots that actually fit my legs, for the first time in my life. I’ve never been able to squeeze my calves into a pair of boots…all my snow boots were short because I had big calves. I’ve never worn those boots. I tried them on again tonight, they still fit, but I have no occasion to wear them. But I have them, and they are wearable.

I buy tank tops both that are fitted and relaxed. I wear them all, and I show the shape of my body. I show the shape of my stomach and I show my big upper arms. For better or for worse, parts of my body will never change (without surgery) because my skin was stretched out due to my weight. My upper arms are that way, and despite how flabby and floppy they are, I wear the tank tops and I don’t care. I don’t care who looks at me and sees flabby arms, I see progress in my physicality.

Last week I crocheted a top out of some yarn I’d been hoarding for myself. I shaped the top to fit me because I am comfortable showing my upper body. When I finished the top, I decided to crochet a skirt to go with it, in the same yarn. I figured like all the rest of my store-bought skirts and dresses, I would crochet a long skirt. I usually wear straight skirts, but they are always ankle length. Because I’ve never crocheted a skirt before, I was trying it on constantly to make sure it fit my waist and hips before going straight down to my ankles. As I tried it on where the hem was just above my knees, I stood and looked at myself in the only full length mirror in my house, which is in our guest room. I’m short, and I know logically that long skirts make me look shorter, but I do not like my legs. I have always had very heavy legs, and I really had no shape to them from hips down. So I always covered them with long pants, long skirts, long dresses. I’ve never owned shorts. One year I went crazy for our anniversary trip to the beach (in winter) and I bought capri pants. I wore them at the beach (so we could slosh through the waves) and never again. I literally found them this weekend and just stuffed them into the donation bags. But back to my crocheted skirt…I looked at the short skirt and I looked at my legs. And I looked at my body. And I realized I didn’t know who I was looking at. Again, I’m not–nor will I ever be–small, but I did lose weight and it is visible. And I saw shape to my legs, and I saw that the shorter length skirt looked good. Better than I could have expected. It was…weird. I ended up adding some length to the skirt (I would have been afraid to sit), but only just below my knees. I have no clue where I’m going to wear this outfit, but I made it and it’s pretty neat.

I have a second closet full of more “dress” clothes, the majority of which are the same four sizes too big. Multiple times I have tried to sell some of the clothes–they are all in good condition, but many are old even though the “styles” are pretty classic looking–but I have not been successful. Where I was fine tossing the majority of my casual clothes into bags for donation, the dressier items I would like to get some of my money back. Even if it’s a small amount. I can’t imagine that the companies I donate to will be able to do much with my dress clothes and I hate to see them just recycled or thrown away. I am on the fence about this, so we’ll see how I feel as I find time to go through the stuff in that closet.

I’m both afraid and excited to get rid of the oversized clothes taking up room in my dressers…and maybe in my “dress” closet. I’m trusting myself to stay at this weight, and trust isn’t something I do very often. I fear failure so much that I don’t do things so that I won’t fail. But these days I am challenging myself to grow and learn and be a better version of me.

 

I’m slow, but I’ll get there eventually

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I’m 48 years old this year. I know people will think it odd, but I’ve been in therapy for 7 1/2 years with the same therapist. Initially I was seeing T once a week, but after a couple of years, I “graduated” to once every other week. I really thought I would then move to once a month as I worked through my many issues. But then my mother got sick and I wanted to have the support of my therapist through that time. And then I wanted the support as I made my way into the grief following my mother’s passing.

Every time I thought it would be time to pull back on the therapy, something else came up that I wanted support for. At some point, I decided to just accept that I was going to be a work in progress, and that it was okay to have help doing that work. If I didn’t feel I was making progress, I think I would look for a new therapist…but I do see progress. I see as I crack open parts of me, there are new things to address. Changes that feel uncomfortable, changes I don’t understand, fear, anger, family stress, chronic pain and illness issues. So I continue on with T every other week, unless something pops up and I need her in between regular appointments.

I had this need this past week when I received an email from B2, two months after I had last contacted him. Initially I was concerned that he was telling me to take a hike. Then I was mad, because it was TWO MONTHS since I’d last tried to talk to him. Two months with no contact, not even a like on a FaceBook post. I couldn’t read the email for several hours after it came in, and even then I was pissed. I finally read the email, and the anger shot through my body. I told Hub I wanted to throw something.

I’m still learning to use my anger, because it’s telling me something needs to change. There’s nothing wrong with being angry and everything right. Girls are taught almost from birth that they shouldn’t show anger, that it’s ugly and no one will love you if you show anger. But we have a right to our anger, and if we use it properly it can teach us so much. T introduced me to a book, Rage Becomes Her: The Power of Women’s Anger, by Soraya Chemaly. I know the title is hard to see, but it’s a worthy read. It’s also a difficult read, and truthfully I have not finished it yet. Between my migraine attacks and the information in the book, I have to go through it pretty slowly. Parts have made me really mad, and parts have made me sad. I am about 2/3 of the way through, and I’ll finish it even if it takes me a while.

Anger, when we allow ourselves to feel it, tells us something. In this particular case with B2, it was telling me that my history with B2 needed to be investigated. There’s a pattern in my life with him, and if I want to have a healthy relationship with him I need to make changes. I need to be clear with my boundaries with him, and I need to follow through. I’m working on getting my boundaries and parameters down so that I can lay it out for him and SIL. And I need to cull out information that is, not irrelevant but extraneous because he won’t absorb it or understand it.

One of the things I’m just realizing, partially because of this situation with B2, is that I spent most of my life trying to anticipate every else’s needs. I thought if I anticipated people’s needs and tried to do things or fix things before they even asked–sometimes before they even realized their own need–that they would love me. If I rushed in to support them, to cheerlead for them, to help them, to fix a problem…if I just did it before they asked, they would love me. I don’t think anyone overtly ever told me to behave this way, but it was ingrained in me by the way I was raised. This was what women were supposed to do…they should anticipate the needs of their parents, their siblings, their spouses, their children, and fix or do things for them. They should praise them when they needed it, pump them up, fix their booboos…whatever was needed, before it was needed. Being able to read the situation, read the person, and just know what needed to be done was a skill. Something a woman should cultivate and practice as often as possible.

I did these things with precision. My family was visiting my aunt and uncle out of town, and we were staying at their house. The neighborhood was kind of old, the sidewalks were pockmarked and bumpy, the streets were filled with potholes. I was sitting in my aunt’s living room, probably watching television, and my mother walked in the front door. I had no idea she had gone out, and no clue where she might have gone. I took one look at her and popped up off the couch to go to her. I knew right away that something was wrong, and I did a quick visual scan.

“You went for a walk and you fell. Are you hurt?” She had no visible bruises or cuts, but I saw the way she moved, I saw how she was holding her body. I helped her into the kitchen and made her sit at the table so I could get her ice for her knee and a towel to clean her hands because she had caught herself going down over a huge crack in the sidewalk.

I spent my life studying my parents and my siblings. I could see things that others didn’t see because I’d been taught to pay attention, to notice before anyone else, and to give care. My mother didn’t announce that she’d been out for a walk and had fallen, she didn’t request that I help her to the kitchen or get her ice, she didn’t ask for me to clean her gritty hands. I anticipated her need and I did it without asking her or waiting for her to ask me. It was my job to do things before they were requested.

Only now am I realizing that I was doing these things because I thought if I took care of things before they even happened, people would love me. They would see my value, they would want to be with me and be a part of my life, and they would want me to be a part of their life. I learned to be hypervigilant, to pay more attention than anyone else, to insert myself into situations where I hadn’t been invited. I made myself miserable, anxious, and I didn’t like the way I was living. And I lived that way for, oh let’s say, forty plus years. When I got the email from B2, part of it was talking about all the things going wrong in his life and how he missed sharing those things with me. I was angry, because I thought for two damn months he didn’t bother to try to contact me, but when he starts having issues then he wants me there so he can lean on me.

It’s not entirely his fault. I’ve spent my whole life teaching people how to treat me. For forty something years, they have learned that I will anticipate their needs and automatically take care of them. Sure, I didn’t learn that on my own, I was raised in a home and in a society that taught me those things. But in the end, I was choosing to live that way in the hopes that others would see my “value”.

I want to be valued and loved for who I am, not for my crystal ball skills. Not for my ability to read body language or facial expressions, not for my ability to see the small details that others might not notice. Not for my ability to bake a good cake or cookie, not for my delicious ice cream capabilities, not for an amazing pan of brownies. Me, I’m valuable as a living, breathing human.

I am considering allowing B2 and SIL back into my life, but under certain parameters and boundaries. And those do include not allowing anyone to abuse or disrespect me. My inclination is always to keep my family together, but I don’t want to be anyone’s doormat.

I’m still working on myself and this particular issue. Some of these revelations are really really new, and I need to learn how to live in a new way. I need to learn to see my own value, just as I am right now, even if I have nothing to give but myself.

 

Who I was, who I am, who I will be

I know that title seems very deep, and to some extent it is a deep and soul searching journey that I am on, but for this post’s purposes it probably won’t be a big existential reveal.

Growing up, I was fat and shy. I had a few good friends but always on the outskirts of everything happening. I spent many hours on my own, writing, playing with Barbies, making up stories and poems.

My brothers didn’t want to hang around me, so for the most part I was on my own. B3 is almost exactly 18 months older than me, B2 is 5 years older than me, B1 is 8 years older. When I could get some attention from any of my brothers, it was mostly B3 because he was more my age. We were generally in the same school, riding the same bus to school, and on the same schedule. B2 was the extrovert of the family, the “cool” kid, the person who went on all kinds of interesting adventures. He was the kid who broke the rules, who got into trouble often, and who wanted independence more than anyone else I’d ever met (at that age). I always wanted B2’s attention, but I never got it. I got a lot of B3’s attention, but like me he was an introvert and never seemed to do anything exciting.

I am realizing today that I always longed for B2’s attention. He seemed so adult to me, and did so many interesting things. He butted heads with my parents, rebelled against all authority, and had so many cool friends. From as young as I can remember, B2 rejected me. I can’t say why or explain what he was thinking, I only know how I felt and feel. When he upped at moved out of the family house to move in with an older woman, I felt abandoned. Even though we weren’t incredibly close, he was an idol that I looked up to.

He got married the year–hell, the DAY–that B3 graduated high school. We had to run from B3’s graduation to B2’s wedding. Seriously. The day I graduated, B2 and his first wife brought their brand new baby to the party, so once again he was the center of attention. At the time, I didn’t care because I didn’t want attention…I just wanted to graduate and eat cake. Shocking, I know. Then there was the argument, of which I know nothing (except I heard that the first wife felt my parents’ overstepped some bounds with their first kid?), and suddenly B2 was no longer speaking to the family. He disappeared from our lives, and I was abandoned by him yet again.

Many years later, after they had their second baby, whom we didn’t meet, B2 became unhappy in his marriage and was looking to get a divorce. I had sent him a couple of letters, trying to keep the connection to him but I never told anyone at the time. B2 finally got back in touch with me and asked for help getting back in with the family. He wanted my help to re-establish contact, and I did what I could to introduce the idea and smoothed the way where I could. As I said in another post, B2 lived with me for a year while he was getting his divorce, then he moved in with his new girlfriend (now SIL). He moved an hour away from me, became a family with his kids, his step-daughter, and his new GF (SIL). I had almost no contact with them except at holidays.

As a course of life, I married (my sweet Hub), and eventually we moved to a town about fifteen minutes from where B2 and his family were living. We still saw them rarely. I mean, for serious, I had never even been to their house…ever. Fifteen minutes away. Never once. Then they bought a house walking distance from where Hub and I were living. We helped them move, we saw them a bit more…and in less than a year SIL received an offer to move with her job to the midwest. So their little family picked up and moved…I was yet again abandoned by B2.

Now I know what you’re thinking. He has a life to live! He’s just my brother, he has no responsibility for me. Don’t be rude! No, but really, I’m showing a pattern that has shaped my life. Stick with me.

B2 and SIL and their kids now lived about 12 hours drive away. They were out there for about ten years, and not once did I ever see their house. Never. Not once. Ten years. This is how not close we were. And as I was realizing in therapy today, there was very little communication between them and me. Not emails, not letters, not phone calls, not texts. Maybe we’d talk in email about something, but it was pretty rare. No regular communication. Like the time he “left” our family, he was out of my life again. For about a decade. They promised when they moved that they would come back to visit, split holidays between there and here, stay a part of the family. Sadly, did not happen. They found their “family” (neighbors) out there and they forgot the biological family they left behind.

Our mother got sick during the years they were living in the midwest. B2 did not come back to see her, or to help support her. He promised, but didn’t. He and I were communicating more because I would write reports in email of her doctors’ appointments or tests…or I would inform him as to what was happening. To his credit, he didn’t question or second guess what we were doing, but he also didn’t participate or help out. He stayed 12 hours away.

Until the end. Then he and SIL swept in, acting like they were saving the day, and they were here to see my mother die. She didn’t even know they were here, she was too far gone. Something B2 will have to live with for the rest of his fucking life. S’cuze me, resentfulness slipped out.

After Mom passed, they went back to their midwest home and lived their lives. For some reason, they decided to head back east…B2 always wanted to live by the water with his boat. So they began making plans to move back, despite SIL’s loud and persistent protests. B2’s company wanted him on the east coast to pick up some work, so he moved into my Dad’s house and set up shop in my mother’s den/office. He was here for about a year as he and SIL looked for a place and town to live. I feel like he and I got close again while he was here without SIL. We pulled together and tried to help Dad through his grief. He helped around their house, he spent time with those of us living here, we got to know each other again.

Although SIL continued to put off selling their house in the midwest and complained about not wanting to move, they finally found a house that SHE wanted. It was nothing like he had said he wanted, but was completely opposite. He wanted something simple by the water, with enough room for their kids to come and visit, or my Dad to come out and go on their boat for a day. She wanted–and got–a home almost exactly like they had in the midwest, not near the water, big enough to raise the three kids they had already raised and sent on their way (2 are married already). She had always (loudly) announced that she had no clue why Hub and I bought the house we are living in because it’s pretty large. Why would we want that when we have no kids? Who wants to maintain such a large place for no reason. When they bought their traditional colonial nowhere near waterfront, I said nothing.

During the time they were looking for their new home, I was neck deep in migraine issues. I wasn’t leaving the house, somedays I wasn’t even leaving the bed. Being in a car just to go locally to my doctors or therapist left me with motion sickness for days. B2 and SIL bought a house 90 minutes away from all of us, via highways. I couldn’t help them move (though Hub was integral in assisting them), and I never saw the house. Still haven’t. But guess what? There they went, abandoning his family when they made sure to buy outside of our immediate area. Abandoning me again.

They’ve been living out there for about a year, maybe a little longer. Initially, I was talking to B2 about once a week, because his job is on the road. So when he was bored and had time, he’d call from the car and we’d catch up. It was nice to stay in contact even though he wasn’t living nearby again. It also meant I had some extra support with my father when needed, because he could make time to stop by while he was on the road, or come down over a weekend without too much trouble.

Then the spat happened. I reached out to try to bring us back together, and he walked away. Abandoned me again, like it was no big shit to him one way or the other. Two months went by without one word from him. I had decided I was okay, that I could go on with my life because I’d lived without him before. Two months…

And he emails me. Because he’s having a difficult time with things in his life. And he misses me most of all…because I’m the one who always makes time in my life to support him, to talk to him, to let him come back like I’m not worth anything more than the leftover crap he offers me…on his timeline, in his way.

I got so mad. I’m working very hard in therapy to become the person I want to be. I’m not going to go backwards and let him make me feel like nothing. And I’m going to tell him that. I’m going to tell him that I have parameters and boundaries for my life, and he wants to be a part of it then he’ll have to abide. If he can’t, then I will tell him I love him, but it’s not acceptable to me.

 

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.

 

Follow-up with trifecta ending

So last post I said I had to go out today and then drive home in the dark. I haven’t driven in the dark in many many MANY years. When I make appointments that I need to attend on my own, I generally schedule them during the daytime. This allows me to avoid traffic for the most part, and also it’s generally easier to get appointments during weekday work hours when most people are otherwise involved at THEIR work.

Somehow, this particular appointment didn’t work out that way, so I girded myself for driving home in the dark.

Unfortunately, I was not prepared for the high winds on the way to my appointment. I made it, but it was kind of sucky. When I left the house it was windy, 70 degrees and overcast. Two hours later, when I was ready to leave my appointment, it was 43 degrees, pitch black dark, windy, and pouring rain.

I hate driving in the rain.

So not only did I have to struggle with the dark, I had to struggle with pouring down rain AND dark. I drove out the neighborhood I was in, windshield wipers going full-throttle, with high-beams on because the neighborhood had no street lights. I thought I would be relieved to hit the 55mph highway because at least I knew it would be lit, but the highway was worse than the back roads. There was terrible glare from the rain, always-happening construction crap littering the side of the highway, and cars wanting to speed very very fast. I literally crawled onto the highway and then took the very first exit not even quarter of a mile later because I couldn’t handle it.

Once I got off the highway and onto back roads that I am very very familiar with, I did better. There was still a glare but I was in nicely lit neighborhoods with very few other cars around. It took me probably half an hour instead of twenty minutes to get home, but at least I was home safely.

Hub had offered to come get me and/or come follow me home, but he had friends over and I didn’t want to interrupt his plans.

The good news, I made it home safely. And I’m okay with not taking the highway home because I drive that road all the time so it’s not like I would normally avoid it. I just didn’t want to make things more difficult than they needed to be, especially in such an uncomfortable position.

After Thanksgiving, I’ll be hitting the interstate (65mph commuter route into the city) with my father for one of his doctor’s appointments. Fortunately, it’s scheduled for mid-morning, so it will be after rush hour, during daylight, and coming home will be before evening rush hour. I’ll be able to drive normally instead of in bumper-to-bumper traffic or with crazy people.

The appointment I had today was with our family rabbi, to talk about my dad’s situation. I was kind of disappointed that he didn’t have any really amazing ideas to help us with the current status of things. He suggested trying to get my father out of the house more often, but that’s kind of hard to do considering my father doesn’t want to go anywhere or do anything. I don’t know, I guess I’m really frustrated because without some kind of cooperation from my father, nothing is really going to change. And right now, cooperation from my father is not going to happen.

Maybe if I have some time to process today’s conversation, I might come up with something else. But right now I don’t feel like the rabbi had anything to say other than what we already knew (and what I already said in the last post).