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Purpose and control

I was watching television and a character said he became a doctor because it was always his way to try to control things. Being a doctor made him feel he was in control of his life and his patients’ lives.

I was sitting there watching and it was like one of those AHA! moments. I started wondering if my fiction writing (which I’d been doing since I was a pre-teen) was my way of controlling things in my life. Or finding a way to have control in a world where I really had no control, especially when I first became sick…which is when I started intensely on my writing career and when I was first published.

When I talked about this with T, it also made sense as to why I haven’t been able to write very much in the last few years. I’ve worked so hard to release my idea of controlling everything, and so my default way of writing–and seeing my writing–is no longer the same. T said she could see exactly what I was dealing with, and she felt the discovery was a very interesting and insightful one. I’m not sure how I will be able to write again, but T thinks I’ll find a way. I certainly don’t want to go backward in order to find my ability to write again, but as I am now, I feel like my solace in writing is gone. I used to be able to disappear into my books and create lives and worlds where everything was the way I wanted it to be. But now, where I see that control really is an illusion–even though I’m still working on that in my own life–I’m not sure how to create stories the way I used to.

At the moment, I even feel like I’m struggling to get my ideas across in this post. I feel jumbled and like the words I want are not here. It’s sad and disappointing right now. The thing that I always went to feels like it’s well and truly gone. I mean, I know I haven’t worked on any of my books in recent years, nor have I really started anything new of note, but I guess I thought it would still be there to save me.

It sounds dramatic, but really my writing did save me when I got sick. There were days I never made it out of bed except to go to the bathroom, and yet those were the days where I wrote my books. Those were the most productive days of my writing career. Through pain and vertigo and fatigue…I wrote my books. I wrote deep into the night, hours and hours at a time, and slept through until noon. I would eat lunch and then go back to my writing. It kept me sane, it gave me a life to live when I couldn’t live my own life. My hands would cramp, my arms would ache (I wrote my books in longhand), my neck would hurt…but I kept writing. That was the first time I ever wrote a full-length book, and it was the first time I persisted in finding a publisher for that book.

And here I am, in need of that solace, and unable to find it.

I’m not the same person I was, no question about it. I just don’t know how to be the person I am and still have the purpose I had then.

 

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What am I going to do

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

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

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

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

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

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

 

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March not better

I thought February was bad. March has been worse.

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

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

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

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

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

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

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

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

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

 

 

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Sleep? Why bother…

Apparently this is what my body and brain has decided. Sleep unnecessary.

I know that for real it has to do with my mental, emotional, and physical pain. All of those wrapped into one, split into pieces, kneaded into each other, and then rolled into a throbbing ball of oneness. I’m so on edge that one small scrape and I’m raw and bleeding profusely, figuratively.

I cried on the way to the grocery store this morning. Not because I had to go to the grocery store, not because I was worried about being able to afford the trip to the grocery store, not because I was afraid I was going to have an anxiety attack in the grocery store… I cried because I couldn’t not cry. I’m tired, I’m not sleeping, I’m worried about Hub and I’m worried about Butthead. I’m worried about myself, too. My grief is overwhelming every part of my life and I can’t seem to dig my way out of it.

Hub is agonizing over a job offer–in part because it might mean less flexibility and he worries that he won’t be able to come home if I need him–that he received on Friday. I’m worried for him because I don’t feel that the company was being up front with him…they kind of bait and switched the job position (which they apparently did to the guy before him, someone Hub knows). I am concerned he won’t have any backup on his work, and I’m worried because if this is how they treat potential employees, how do they treat current employees. But Hub is unhappy in his current job and looking for a way out. Our health insurance changed due to the buy-out, so he’s both unhappy with the new corporate owners and unhappy with their shitty health insurance. Unfortunately, the potentially new company has equally shitty health insurance…so that kind of cancels out the pro/con in that category. Now they’re not budging on a concession he asked about (a minor concession on their part!), so that might be the end of that. I only hope that his current corporate overlords don’t decide that he’s no longer needed before he finds something else.

Butthead is randomly puking again. I mean, it’s good news that she’s not persistently puking like the last episode where we ended up rushing her to the vet hospital and coming home with anti-vomit pills… But this randomly throwing up (twice in the last four days…one of which was this morning which was another reason why I was so upset) is so frustrating. We don’t know if she’s sneaking and eating bad things outside or has gastritis and so her stomach hurts her or what… We’re at the point where we’re acclimating her to a basket muzzle that she’ll have to wear anytime she’s outside so she doesn’t eat crap off the ground and make herself sick. It’s hard and sad to make her wear a muzzle because she’s a good dog, not aggressive, shouldn’t have to wear it. I know it’s uncomfortable and bulky and just plain weird for her, but we don’t know what else to do with her. We can’t figure out what is wrong with her. And if it’s that she’s eating stuff outside that’s making her sick, there’s nothing else we can do other than the muzzle. For the past month or so we’ve been out there with her every minute, following her and standing over her and making sure she’s not eating things. But with the snow and ice, and my physical capabilities being limited at this point…I couldn’t keep up with her and I think she might have eaten something that made her vomit last Thursday when I wasn’t standing over her. We just don’t know what to do with her… So I’m worried that she’s going to vomit again like the last episode. Ugh. So far it’s been these two random episodes and today I spent time on and off modifying the basket muzzle to try to use a quick-snap collar to hold it on her head versus the old-fashioned buckle which is a pain in the ass to get on and off of her, especially with her floppy ears and long hair.

Even though I’ve been feeling ultra shitty and exhausted, we had to do a bunch of things this weekend. Most of which we accomplished. Unfortunately, one of the things was cleaning up the caulk in our master shower which seemed to be growing mold behind the caulk at the joints of the floor and wall. Hub is not flexible, so he had trouble sitting on the floor and scraping at the caulk, so I did 90% of it. Which, of course, hurt my arms, shoulders, and hands more than they were already hurting. The end result, though, is that we need to call in a professional to look at our shower because this is the second time in a year that we’ve ended up with this problem. Last time my brother helped me strip and re-caulk the shower, but now we’re in the same place again… There’s something wrong if there’s mold and mildew growing behind the caulk, especially since we bought mold-resistant caulk. This all means that we don’t have a shower in our bathroom and we have to haul ass to the shower on the opposite end of the house…past all the windows in the front of the house and over the foyer area of the house. It also means we have to haul all our paraphernalia into the other shower, which is smaller than our master shower. It’s not a huge deal, it’s just more stress. And more stress in having to find someone who knows what they are doing to come into the house to fix whatever is happening. The stupid sub-contractor that our builder hired to do our bathrooms did not know what they were doing. They screwed several things up in our master bathroom and ruined a lot of our shower floor tiles by having to go back and chip out all the wrong grout they put in. So we were left with grout over top of grout, and chipped tiles. And the slope of the floor is really bad, which causes water to pool in different spots in the shower and leaves our grout with water stains where the water sits. It’s shitty and depressing and frustrating. That’s all in addition to whatever this caulk situation is.

I have my mammogram on Wednesday. We finally got our health insurance cards from Hub’s new corporate overlords. I opened the mail, found the card, and called for my appointment all within about ten minutes. The first they had was a week away (now this Wednesday) and I took the appointment. I am pretty paranoid about keeping up with my mammos, so I’m glad that it’s only about ten days overdue from the day I had it last year.

I was supposed to have a relaxing massage last week. I had it scheduled in between two trigger point appointments…I normally go to TP massage therapy once a month (ish). So I scheduled the relaxing massage exactly two weeks after one TP appointment and two weeks before the next TP appoint. And then it snowed, and my relaxing massage appointment got canceled. And I really really wanted it. I mean, not enough to endanger my therapist or myself, but I’m so disappointed. I knew this was going to be a difficult month (technically, it’s been a difficult year so far), so I had planned for the relaxing massage–which I never get–and then plans went pfffft. Since my massage therapist only works two days a week, there were no openings for me to do a make-up massage. I don’t know when I’ll be able to fit it in again.

I told T on Friday that I want this grief to have some kind of end date. But with every day, every month, it stays. It’s a solid burden that I carry with me every. This month is especially difficult as it’s the (one year) anniversary of Mom’s death. And with every calendar day I think of what I was doing on “this” day last year. How we had no idea what was coming. How we took her to an arboretum in the city trying to perk up her spirits…not knowing how soon it would get so bad. How it happened so fast. How I was late to Hub’s birthday dinner last year because I was with Mom and Dad helping them with something. How it was only days after his birthday that she was in the hospital and then hours later that she was gone. Grief has no end date. It plays by no rules. It doesn’t give a shit who you are or what you want. It lives and breathes and grows and growls and harps and hammers and changes and does whatever the hell it wants. And it sucks.

 

 

 

 

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The 1st of March

It’s the first of March. It’s the first day of the month during which I lost my mother last year to her cancer.

Yesterday I went to see my massage therapist. It was a long appointment and the therapist worked hard on my trigger points. With all the pain I’ve been in, she really had to do a lot of work on my upper body. Arms, upper chest, shoulders, neck, my entire back, my glutes. I came home feeling exhausted and so weary. I probably shouldn’t have driven home myself but I made it successfully. I had the air conditioning in the car full blast to keep me alert, but I think once I turned into my driveway my brain sort of gave up. I drove up the driveway but…when I turned my car toward the garage so I could make a K turn to park in my usual spot, I went just a little too far. And I hit the garage door. Again. I wasn’t going fast and I didn’t hit hard, but I pushed the already damaged door in just enough to break the bits on the inside that hold the panels to the rollers. I did this years ago (like 3 years?), but at that point I had backed into the garage door and the molding at the edge of the door. I broke my tail light and dented the garage door. The repair guys came out then and just repaired the stuff inside and said it’d be okay. Well, it WAS okay until I hit it again yesterday. The guys came out today and said the door parts were damaged beyond repair and we’d likely have to replace two of the panels. They are supposed to call tomorrow or Friday to let us know the cost. I don’t know what happened…and I can’t believe I hit the garage door a second time. I guess I’m thankful that this time I didn’t damage my SUV and that Hub couldn’t have cared less that I hit the garage. He was more upset that I was so upset with myself. We can’t use the garage until we get the repairs done, which doesn’t really affect me because I don’t park in the garage but it means Hub can’t put his car in the garage. Again, he’s totally not upset about the damage, but I am.

So I haven’t been sleeping much at all for the last six weeks or so because of all the pain I’ve been in. I slept about an hour or two (fitfully) Monday overnight to Tuesday because Hub went to an overnight sleep study at our local hospital. Tuesday I had my massage therapy, and Tuesday night I was in extra pain from the trigger points she worked on. Today, Hub worked from home and I spent most of the day on the couch trying to find a comfortable position. I’m not sure I’ve tried to describe this before, but when my massage therapist works on trigger points, I am often left with a feeling of horrible bruising (without any bruises) and like I am resting on golf balls that are pressing right on the bruised points. All my body weight right on those bruised spots with hard golf balls pressing right into those spots. It’s painful. Even moving is painful. The best thing I can do is not move. Find a position that doesn’t put too much pressure on any of those spots (and they are numerous and spread throughout my back, arms, shoulders, and butt) and then don’t move. So I was stretched out on the couch while Hub was working nearby and everything is hurting…and I start crying. I’m exhausted and in so much pain and I just feel overwhelmed.

And I’m sad. I miss my mother so much every single day. And I know now that March was the beginning of the end for my mother last year. And I’m thinking of the things we were trying to do with Mom last March…and how fast it went in the end. The tears just came and I let them. I feel so sad. And lost. I can’t believe it’s been almost a year. I can’t believe how much time has passed without her. How life has gone on for so long without her. It hurts. Physically and emotionally and mentally I am just exhausted and sad.

 

 

 

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On dogs and doctors and days (long)

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

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

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

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

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

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

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

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

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

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

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

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

 

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Birthdays and grief

My mother’s birthday was a few days before the holidays. As one of my brothers said to me, “I’m sure it’s not creeping up on you, either…” And it wasn’t. T thinks that a lot of my pain and anxiety were around the colonoscopy without my mother being there, and because of my mother’s birthday, and because of the holidays without her.

Yeah, I knew her birthday was coming. I knew it was going to be bad. I also knew I had somewhat of a plan for the day. Before Mom got sick, when she was still crocheting, she hooked up a bunch of preemie hats for our local hospital’s NICU. At the time, it wasn’t a lot of hats, so we kept saying we were holding off before taking them in. After Mom passed, I took all of the small amounts of yarn I had and crocheted more tiny hats. Then I put them all into a bag and left them in my library. Because I knew what I wanted to do.

On Mom’s birthday, I woke up and got dressed. And I called my father to see how he was. He said he was just going to call me because he was going to the cemetery and he wanted to know if I wanted to go. I didn’t really, but I didn’t want him to go alone. So instead of answering him directly, I said if he would take me up to the hospital to drop off the preemie hats, I would go with him to the cemetery. He said okay, so we left about ten minutes later.

At the hospital–where my father’s sister (my aunt) was admitted and stayed for several days, and where my mother went for her lymphedema wraps–I left Dad in the parking lot and I went inside. At the main desk, they checked me in and directed me to the NICU. As I made my way down the hall, I saw someone walk into the elevator, so I hurried to join her so I could save some time waiting for another elevator. Inside, the woman standing across from me smiled, then looked at the bag in my arms and her smile got wider. She asked me if I was bringing hats to the NICU. I said yes, and her eyes seemed to sparkle. She was heading for the NICU herself…she had twin girls who had been born before Thanksgiving–when they were due after Christmas. I said congratulations and I hoped they were doing well, which she said they were. And she told me, “They brought me to see the girls for the first time, and there they were in hand-knitted hats, and it just made my heart skip a beat. That someone out there did that for me and for them, complete strangers!” Her smile was so big.

When the elevator doors opened, I walked with her down the hall and into the NICU waiting area. I wished her luck and she disappeared behind a door that the nurse unlocked for her. I approached the nurse, who was behind a glass windowed reception area, and I put my bag of 40 hats on the counter in between us. And I announced that I was there to drop off crocheted hats for the babies. In all sizes, all colors, all different types of yarns. The nurse smiled and took the bag, then started going through the hats. She oohed and ahhed over some of them, and even rubbed a few on her cheek and said how soft they were. She told me how wonderful if it was to have them, and wanted to know “how many women are there in your group that made these?” I laughed and said it was just my mom and me. The sweet woman said, “oh my goodness, please give your mom a hug for me!”

I basically nodded and smiled, gave a wave, and left the unit for the safety of the hallway. It was hard. I tried not to cry as I made my way back through the hospital and out to the car where my father was waiting. Fortunately, he was busy navigating the parking lot and trying to figure out the best way to get to the cemetery, so our conversation was pretty sparse.

When we were done and I was home, I cried. I cried because those were the last hats I had from her. I cried because I missed her. I cried because I hated where I was in my life without her.

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When my mom was going through chemo, I made her a bunch of hats for her to wear after she lost her hair. Years ago, probably six or seven years, before I was crocheting, she was supposed to crochet me an open-weave sweater to wear over a tank top. She never got to it, for various reasons. I don’t even know what happened to the yarn we picked out. She crocheted me a shawl for my brother’s wedding, and added crocheted sleeves to an evening gown for my cousin’s black-tie wedding. So I really have nothing I can wear that she made for me. I wish I did. The last thing she crocheted was a lap blanket that she was expecting to donate, but a few days after she died, I took it. I wrapped it up in tissue paper and put it into a plastic bag that a set of sheets came in, and I put it away in my guest room. It’s in a drawer in my grandparents’ dresser. It’s ugly as sin color-wise, but I can’t bear to part with it. I also have a ruffled ball that was supposed to be for a baby that was a test-project. It’s on a shelf in my bookcase hidden behind some doors with the perfume that I took from her bathroom drawers a few months after she died.

I honored my  mom as best I could on her birthday. My birthday is coming up soon. Hub usually cooks me a special dinner and he’s been asking me what I want to eat. I kept putting him off, because I honestly do not want to celebrate my birthday. I finally told him I didn’t want anything special on my birthday because I didn’t want to have my birthday. I don’t even want it to be acknowledged, because it’s just another reminder to me that she isn’t here with me. Last year she was in brain radiation on my birthday…she was just getting over the symptoms of the brain mets. We were dealing with the lawyer trying to get my parents’ trusts all finalized and stuff.

Last year, five days before my birthday, I had to call an ambulance at 11pm for Hub because he had an episode of paroxysmal supraventricular tachycardia (PSVT) where his heart rate was sustained up around 225 or 250bpm. They had to stop his heart twice with medication to get it reset. We went to his follow-up appointment with his cardiologist on my birthday.

Right now, I’m in pain. My arms and back and neck and shoulders hurt. I have headaches on an almost daily basis for multiple hours at a time. My hips hurt when I try to sleep. I still have nausea. I still have jaw pain. I still have anxiety over the jaw pain, though it’s not as persistent as it was in the past few weeks. I’m not sleeping much and I’m not crocheting because I hurt too much.

I don’t want to celebrate. Right now I just want the days to be days, so I don’t have to be so sad.

 

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