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.

 

Monday Musings

I know this isn’t something we can do these days–at least in the normal ways–but let’s think back about previous adventures to concerts with friends.

I can count the number of concerts I’ve seen live on one hand. Literally. I wasn’t very big into music, but I had some favorite groups that I listened to. I can’t remember specifically whether I saw the Beach Boys first, or Chicago. Yeah, I’m of that age…and even as a kid I liked older bands. I saw both the Beach Boys and Chicago at a local outdoor venue. The place has both covered seating and lawn seating. For one of the concerts I know I sat on the lawn, because those were the cheap seats. The other concert I had tickets under the cover, but my view was obstructed. That was how I afforded those tickets. I loved both of those concerts, and I have a vague recollection they were probably in the same year. I have no memory of who I attended those concerts with…they were years before I met Hub, so I know it wasn’t him.

The third concert I attended was at a big sports venue with tens of thousands of attendees. I won those tickets on the radio…remember when they used to tell you that you had to be caller number X to win tickets? Yah, I did that and actually won once. I had to go down to the radio station to actually pick up the tickets, and I had to have my ID to pick up the tickets. What I didn’t know was that the tickets were up in the nosebleeds. The concert was for Billy Joel, the place was absolutely filled, and our seats were literally at the top row of the stadium. We sat on the top of the backs of the seats and leaned our backs against the walls of the stadium. No joke, Billy Joel looked like an ant we were so far away. I was dating Hub when I won those tickets, but he had to work the night of the concert so I went with a good friend. We had a great time even though we couldn’t see much of anything. Unfortunately, that friend is no longer in my life because of some incidents that occurred.

The fourth concert was a band I knew almost nothing about at the time. It was a band that my husband loved and they were playing at another venue that was a combination of covered stage and seats with lawn seating. The band we went to see was QueensRyche, and Hub was part of their fan club so we were able to purchase passes to a meet and greet before the concert. As it turned out, we went to dinner with the band, as well as some other fans, some radio station people, and people that I think were part of the band’s staff. We ate at an Indian restaurant, a first for both Hub and me at the time, and part of the conversation at the table was which foods to order and how Indian food was always the safest food to order while on tour, especially overseas. We had a pretty amazing time at dinner–the band members were very nice and pretty gracious about eating with a bunch of fans/strangers. Honestly, although I did enjoy the concert because Hub had me listening to the album almost constantly in the weeks leading up to the concert. I had learned a lot of the songs and the tour was the MindCrime tour which was a very storied type of album. I remember much more about the dinner than the concert, though.

The fifth and last concert I can recall was also with Hub, another artist he introduced me to. He’s an audiophile, and absolutely loves music. Yet another art whose albums were more stories than individual songs, and whose style was more fun and folksy than pop or rock. The artist’s name was Jonathan Coulton, and we saw him in a small venue more like a bar than anything else. We were extremely luck to grab a table literally at the edge of the stage. We were almost in the singer’s face, which was kind of crazy and a lot of fun. He was really into interacting with the audience, so we really enjoyed that concert.

Even the concert I attended with my ex-friend is a fond memory. I was friends with her for many years prior to our split, and we were pretty close. The two concerts where I don’t remember who I went with, I remember enjoying the concerts themselves, and singing at the top of my lungs along with everyone else. The two concerts I attended with Hub are part of our shared history, and I’m so grateful to have those memories.

What concerts did you go to? Was there one or two that really stuck out in your mind?

 

Friday Fotos

When my new laptop arrived, I started looking to see what needed to be backed up and what could be left behind on the old laptop. We’re keeping the old laptop, it’s just going into rotation and used less often. And Hub might be borrowing it for some of his stuff, so it will be around for me to go back to if I need it.

Meanwhile, I’ve found a lot of photographs I’ve taken over the last 6-7 years? And I’m gonna share them, dammit. So it’s Friday Fotos… I might include some information on the photo or why I picked it, or I might just share the photo.

 

Oh baby baby!

Don’t panic, I didn’t have a baby over the last three years! If you recall, I’m completely scooped out…and childless by choice.

On the other hand, Brother #3 (B3) and his significant other (B3SO) had a baby last year. It was a surprise pregnancy (B3 was 49 when this, his first child, was born), and quite an upheaval for them and of course for extended family. My father, on the cusp of his eighties, upon hearing of the pregnancy immediately said there would be no baby sitting services at his house. Amusingly enough, I said the same thing! I’m not a baby person, I did not baby sit when I was younger, and I had no interest in babies or baby dolls while growing up. And, not shockingly to me, I did not change my mind as an adult. However, Hub and I have been (and obviously are) aunt and uncle to several on both sides of our family.

B3, within spitting distance of 50, assumed he would never be a father. I don’t think he was terribly upset about this, being that his life is fairly complicated (and his private bizniz). When he was informed of the pregnancy, he was not entirely keen on the idea. He and I talked about the situation a lot, and in the end I believe he is happy with his decision to form their own little family. The pregnancy was not an easy one for B3SO, who was really just over the line of high risk pregnancy due to age.

I was not involved with B2‘s kids for the most part, because initially when they were babies, they were all out of our lives. Then when they were growing up (and had come back into the family after the divorce) they were not living nearby. B2 has always had a concept of being “family” with his neighbors, and despite only living 20 minutes away from his parents and siblings, he spent 1000% more time with his neighbors than his biological family. And then they moved away, so my interaction with my nieces and nephew went down to 0%. Hub is not as close with his family as I am with (most of) mine, so we were not involved daily with his niece and nephews. One was living far away, the other two were just not a part of our daily lives. We are a “see you at the holidays” kind of close with his parents and local niece and nephew.

So the coming of baby (B3LO) gave me an opportunity to crochet new things. I made several blankets and a whole bunch of toys for the newbie. I am slightly superstitious, so I didn’t tell anyone (except Hub, obv) what I was doing, and I didn’t present gifts until B3LO (it’s a niece!) had arrived. There was a lot of concern because B3SO actually had very early labor and her water broke pretty early. She was in the hospital on bed rest and being constantly monitored for about six weeks, and even then B3LO was still premature. I can’t remember specifically, but I think she was in the NICU for about 2-3 weeks. I’m grateful both mother and daughter survived, and with only minor issues that have been well managed.

B3SO is a manatee nut. The blocks and ice cream cone are rattles.

B3LO just recently passed her first birthday, her general health being good and her general outlook being happy. She had some feeding issues initially, and despite coming from two very …”fluffy” families, she does not eat well and does not gain weight well. She’s still small for her age, and probably will be on the smaller side for her whole life. Poor dear. And now, apparently, her teeth are coming in and the whole household is miserable. Bless their hearts.

I went with B3 and B3SO to a few doctor’s appointments early on (because of the feeding/spitting up issues and her slow weight gain) as secretary. I took notes, asked questions, and wrote up summaries of each of the appointments–exactly as I did for my mother. But then COVID came around not too long after B3LO’s birth, so we haven’t seen very much of her. We saw them outside and social distanced for father’s day with my dad, and then for B3’s birthday. Otherwise, B3 shares photos and videos via email, and I keep up with them in text or on the phone. No matter how many times I squint, I do not see B3 in B3LO. Of course, I don’t remember B3 as a baby or toddler because he’s only 18 months older than I am. And as child #3 (and me #4 even worse), there are few pictures of him (me) as a baby. I think my mother was too busy taking care of all of us to take pictures, and my father was either traveling or uninterested. But that’s another blog altogther.

As we have all added it up, and you probably as well, B3 will be 67 when B3LO graduates high school. He’s not a very easy-going person, so I suspect there will be lots of frustration and impatience as he lives with a new human. He never really spent any time with babies, so he had no experiences to look back on to understand what having a baby was going to be like. It’s interesting to me to see how he deals with B3LO, and I will say it’s not like I would expect from a new father. He’s not overly freaked out when stuff happens (unless it’s her health), and he’s not doting or spoiling her. He’s keeping their buying in check, borrowing or trading clothes as she grows so they don’t have a lot of waste. I’m not saying she’s deprived, but B3 seems to be pretty matter-of-fact and pragmatic about the THINGS that a baby needs. They are happy to get gently used items, and happy to pass those along when B3LO doesn”t need them anymore.

I have often considered over the last almost two years as to how my mother would have reacted to the news of B3 becoming a father. At her age before she was diagnosed, she had little patience and was not in any way baby crazy. I kind of suspect she would have been shocked, but in her own way she would have supported B3 in any way she could. Except babysitting. I don’t think she would have done it poorly, I think she just didn’t have the patience for it anymore.

Whelp, that’s about it for B3LO for now. When she is potty trained, then I’ll consider baby sitting. Hmm, probably not, but I guess it could happen!

But for damn sure I’ll be baking that kid a ton of cookies and cakes. Eventually she’s got to CHONK up like the rest of her families, right? (Oh, the baking thing? That’s another blog…) I offered to bake a smash cake for her first birthday, but B3 turned me down. He said he doesn’t like her to get all dirty like that because he hates having to clean her up.

Yes, I did just type that. And yes, he literally said it. 😀

 

Monday musings

I’ve never done this before on my blog, but I’m going to try to post these Monday musings…well, every Monday. I’m using a book I have with gratitude prompts to help me pick a topic. I think we are all having a difficult time looking for positive things in the current climate. Even the act of trying to find something that you are grateful for changes your physical chemistry in a positive way. You don’t even need to be successful at finding something. How great is that? I’m going to open a random page and pick from the six options on each page.

Feel free to borrow my gratitude for today and expand on it in the comments or on your own blog. Or FaceBook, IG, or anyplace else it works for you.

After my mother passed, my father started looking at things in their basement in their “storage” area. It was always his preference to throw away things that didn’t belong to him, and hold on with a vise grip to things that were his. The majority of the items in the storage area are not his. They are either items from our growing up years or they belong to my mother. One of the things he focused in on were the boxes and boxes (and boxes) of photographs that were stored there.

Some of the boxes were passed along to us from my grandparents and my father’s sister and brother-in-law after they all passed. Many of the boxes were pictures our family had taken over the years, before everything was digital and photographs were (gasp!) printed out by a photography lab. In order to not allow my father to throw all these photographs away, I took them into my house and began going through them. One box at a time, one album at a time, one trip at a time.

I started with the photographs from my immediate family–Mom, Dad, B1, B2, B3, and me. I began sorting photographs into piles of the above, so that I could give each of my siblings their photographs from their entire childhood. I started first with B1, the first child. Like many parents, my mother had an entire album devoted to B1, with lots of cards and notes and reminders about B1’s life. I could have put together an entire xerox box of photographs for B1. B2 also had an album, but it was mostly pictures and no notes. B3 had even less photos from his baby years, and the majority of the pictures including him also had his two older brothers with him. I was the only girl, but by the time I came around, my mother had three rambunctious boys to watch. There were a few excited announcements and cards referring to the only girl being born, and some “cute” baby pictures of me in girly baby clothes. But as I grew, I got the same treatment as B3…the pictures were group shots. Clearly it was easier to lump us into one shot…less posing and corralling of other kids, and less cost when the trip was over and the photos were sent in for printing. I sorted the kids into their own pile, then the pile of group shots.

I remember very little from my childhood before 7th grade, and the pictures I combed through gave me few reminders. Even family shots brought back no memories, and I had not much interest in trying to dig them up. I worked through the kids’ photos systematically.

There were a bunch of trips we went on in our childhood, mostly Florida because my grandparents had a condo there and we could stay there for free. There were annual camping trips with extended family, and then the trips where we were older. I skimmed through those quickly, mostly picking out duplicates and throwing them away. I went through those albums almost as quickly as our childhood pictures.

Then I found pictures we had from my parents, either before they were married or just after they were married. My mother in her wedding gown, black and white pictures that made them look elegant and old-world. My father with hair (he’s been “balding” for most of my life), wearing thick framed black glasses that look almost the same as what the stars are wearing today. Pictures of my parents with their friends, before children strapped them down both physically and financially. I even found pictures from before they were married where my parents wrote love notes to each other on the bottom or back of the photo.

I have issues with my father, and have had for most of my life. Yes, I love him, but he didn’t know what to do with a girl child and it showed throughout my life. It continues even today…he cannot see outside his narrow world and his emotions are locked down tight. As a young child I felt ridiculed by him constantly, and I despised the pipe he smoked that left its stain (literally) on our lives. The smell always lingered and clung to everything we own, or everything we were wearing, and it left me feeling nauseated. His pictures I looked at in a more detached manner. I was interested in his environment and his clothing, but I did not see the man I know.

My mother, on the other hand, I poured over her pictures. Seeing her young and full of life brought me such joy. I knew her life as a wife to my father was difficult. I’m told he traveled almost constantly when we were young, which meant she was caring for a house and four children, plus a dog, all while trying to get a second college degree. She had her teacher’s degree before she had B1, but after teaching for a year she left to raise her family. While raising her family of four children, I think she realized they needed more money so she went back to school to get an accounting degree. She also took classes to get her CPA degree, which I don’t think she ever passed the exams. So her life was hard when we were young, we had almost no money and everything we did was on a tight budget. But before us, my mother’s smile was brighter, her face was relaxed, and she looked happy. In later pictures–during our growing up years–there was always a pinched look to her face. I’m not saying she was unhappy, because I don’t really know that, but I know that things were a hard. But Mom was pragmatic, and even if she’d been unhappy she would not have shared that outside of herself.

Seeing myself as a child really held no interest. But seeing my mother as a human being before us was fascinating. And I poured over those pictures for days, getting to know my mother in a completely different way. With my mother physically gone from this earth, I am so grateful for the opportunity to see her whenever I want. And to pick the time frame I want to visit her in.

I have lots and lots of photos, stored randomly over many computers, laptops, backup servers, cell phones…but it’s the real old photos I can hold in my hands, flip through, sometimes stained with water or time that mean the most to me. I’ve passed along the photos that I sorted to my brothers, and I’ve kept my own. I’ve also kept all the old pre-family photos that include my parents–and some of the family ones as well. I want to be able to visit whenever I feel the need.

 

Bittersweet family feels

As I may have mentioned in the past, I have three older brothers. Today’s rant is courtesy of brother #2 (B2), by way of his wife (SIL).

As a child, I was not close to B2. He was not really a nice brother, and he had no interest in being involved with me. The five year difference in our ages might have been the reason, but as a child I felt it was because I was a fat kid and I embarrassed him. I will note, he was also overweight, but he was considered “husky” because he was a boy. When he was in high school, he had a friend who lived down the street and he frequently called her his “sister” but never really acknowledged me. When he started community college, he let me hang out in his basement bedroom when he was out, which I thought was a “cool” space, but otherwise nothing else changed.

He moved out of our parents’ house shortly thereafter, then married a woman he’d been dating who was, um, much older than him. They had a baby about two years later, and for some reason there was an argument between him and his wife and our parents. They stopped speaking to our entire family for about eight years? During that time they had another child, whom we did not meet until many years later.

When B2 decided he was unhappy in his marriage, he contacted me and we began communicating. I helped him get back in with our family, and during his year separation (required in our state) he lived in my house. His children came to my house to stay with him every other weekend. Shortly after his divorce was final, he moved in with his new girlfriend about half an hour away from where I was living. They married shortly after I married Hub, in a small ceremony. I moved to a new location and a few years later B2, SIL and their kids moved into a house nearby. But, they were only there for a short time because SIL’s job was moved to another state, 12 hours away. They picked up their entire family and moved (her parents also live here in our state). And despite lots of promises, they did not come back very often for holidays or gatherings. They were gone about 10 years, and when I heard about their life, it was always about the fantastic neighbors they had who had become “family” to them and their children. When FaceBook came around, I had a little more communication with B2, but not much.

My mother got sick and spent 2 years fighting her cancer. B2 barely came to see her and I began resenting him for that. I was my mother’s best friend, cheerleader, sidekick, caregiver, nurse, secretary, confidante, and I have no regrets. I spent every moment I could with her as she tried to live her life. He followed along with her adventures by phone, when he could make the time. He came to stay with my parents for a week or so, just before my mother died. Then he went back home again, promising that he and SIL would be moving back into our area now that their kids were all out of high school and could live on their own.

He did come back and stay with my father while he looked for a place to live. He wanted one kind of home and property, SIL wanted something completely different. As they tried to come to a decision, she complained often and loudly that she didn’t want to move. But in the end, they did move back to our state, about 90 minutes away, in the type of house and property she wanted. He gave in so that she would move here. I get it, I understand. I also understand that she picked a location far away from our family and hers. Her relationship with her family is not a very good one. She converted B2 into that style of living, in my opinion. Neighbors and friends are family, actual family is a burden.

I never really got along with SIL, either before they married or after. But truthfully, we never spent enough time together to get to know each other. When she decided to move their family 12 hours away, that was kind of the end of any potential relationship. She’s not in my age bracket, we have nothing in common (except B2), and I had no reason to attempt to make her a friend when they were living so far away. When they moved back to the area, I had some conversations with her and spent a bit of time with her (not friends time, but sibling time trying to help out a family member), but we weren’t friends. We communicated seldomly, and mostly through text, occasionally through email. I still was not fond of her–most of her conversations were complaints and she always knew better than everyone else–but since she lived 90 minutes away, I didn’t have to spend a lot of time with her. On the other hand, B2 and I were creating a nice routine of speaking once a week to keep up with each other’s lives, and to stay in contact about our elderly father.

Unfortunately, shortly after COVID became a regular part of our daily lives, SIL’s mother passed away, unexpectedly and in an unfortunate way. B2 said not to worry about attending the church memorial (my father, Hub, and I are all compromised individuals) being held in our area. He also said SIL’s father didn’t want anyone other than his kids/their spouses to attend the out of state burial. We took them at their word and did not attend either. In between the memorial and the burial, I sent SIL a text saying I was thinking about her, sending love, and that I didn’t want to intrude during such a difficult time. Having lost my own mother, with whom I was close, I understood the devastation of the loss. Again, SIL is not my friend, we don’t chitchat or hang out as friends, but she’s family and I wanted to let her know that I was feeling for her. Every time I spoke to B2, I asked about SIL, asked about him, and sent my love to SIL through him.

Shortly thereafter, I started seeing very passive-aggressive posts and comments on FB about or to me. I was confused, and Hub told me I was imagining things. My therapist said the same thing, and that if I wanted to know what was going on, I needed to reach out. So I did reach out, to B2, because he’s my brother and he’s the one I talk to on the regular. Well, it HAD been on the regular before the funeral, but not after. I had called him once and texted him once, but he’d been short with the conversations. I figured they were dealing with things and I didn’t pursue it. They came (late) to an outdoor dinner we hosted at my father’s for B3’s birthday, and the minute they showed up, SIL started again with the passive-aggressive conversations. Loudly, and taking up all the attention and air in the space around her. I stayed away from her (we were social distancing outside as well) and did not engage her. I knew, at that point, the crap on FB had been about me.

That night, I wrote an email to my brother, saying that if there was an issue between her and me, they should have addressed me right away. I couldn’t read their minds, I didn’t know what was going on. But I was not interested in continuing this…spat in public. I told him to tell SIL that I was blocking her on FB, that I did not deserve to be disrespected like that, and that she shouldn’t bother to continue with the commentary because I wouldn’t be able to see it. I also told him I felt very strongly about this, that I would certainly NEVER ignore someone’s pain especially over a big loss like this, and that I couldn’t imagine he would think as much. I told him that he is my brother, is an important part of my life, and if we needed to handle this we should do so in person. I told him I was making myself vulnerable to him and to her by reaching out, and that I was hoping they would not respond hurtfully.

That was my last attempted contact. Since that birthday party, I did block her on FB, and I have not reached out again. He has not made any attempt to contact me, and I feel that I did my best to try to confront the situation. I’m sad because he and I had become close, and it seemed like anytime that happened SIL would tear us apart. So here I am again, living life without my brother, even though he’s much closer than 12 hours away.

I made it without him the first time he left our lives, I made it through without him the second time he departed, and I will make it without him now. I’m sad about it, but I was honest and open with my feelings, in a kind and unaccusing way. All I can do is be honest and speak my truth. What he decides to do at that point is his decision. I understand that he has to live with his wife and he has chosen to support her in this. But I won’t let someone abuse and disrespect me like she was doing. I stood up for myself, which is not something I do easily.

I want to add, my father and B1 did not contact SIL about her mother’s death. For some unknown reason, it was different for them vs me. She never gave them any shit, just me. Also, I went to my father’s house and set up a donation online to the organization for the disease her mother had. My father made it a donation from the three siblings and him, but I am the one who actually took care of the “paperwork”.

Well, rant over. There are days I still miss him, and then I remind myself that there are people who love me and want me in their lives. Those are the people I focus on, and those are the people I give my time and heart to.

 

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.