Tag Archives: health

Getting old is fun

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I had an appointment with my psychiatric nurse this morning. We agree that I don’t need to adjust the lisdexamfetamine because it is going very well. She is, however, quite worried about my continual high blood pressure. She is also a bit concerned about how much weight I have lost in the last month (around 15 lbs) but not *overly* concerned because I have reduced how much alcohol I am drinking, I am snacking less right at bed, and I did ride almost 300 miles last month. I am going to be monitor my weight and my blood pressure daily for a while. She wants me to send her a text message once a month letting her know how the trends are going.

I am also going to be speaking to my GP about lowering my dosage of amitriptyline or possibly switching meds entirely to see if something else can provide some relief without the blood pressure spike.

I finally feel like I am getting a handle around some pieces of how the NHS functions. That’s good. I’m feeling cheerful about life just at the moment. I’m back to painting. After lunch I am going to go do a few hours of working on the ceiling in the lounge. I never have finished the hall but I need to finish up the bits that require the extremely tall ladders because I need to give them back. I suspect I will be painting through a lot of the winter. Christmas decorations may come out a bit on the late side this year and get put away early because I don’t know how much painting I can do with them out.

Middle kid has been an absolute dear and is letting me store paint in their closet because they don’t use that shelf anyway and keeping the paint away from the extreme temperature cycling will help it last a bit longer. It also makes it easier for me to get it out and put it away reducing how much time I need for support work instead of painting.

Today feels like a very good day.

Lisdexamphetamine

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I should put this here and not facebook for long-term tracking reasons.

I’m a little over 3 weeks into the trial of lisdexamphetamine now.


I would say the main thing that is helping is that I am less willing to attempt multi-tasking to the point of frustration meaning I am blowing up less. I feel less anxious about all the things I “should” be doing at any given point. I have a long to-do list but I always have a long to-do list because I have a chronic need to believe that working is how I earn my right to breathe.
I think I can say with confidence that this is the best-for-me psychiatric medication I have ever tried. I can see how this would have helped me when I was younger and I have really intense feelings around the fact that no one was ever willing to look for a reason other than “trauma” to explain my behaviors as a child.


How different would my life have been if I had been diagnosed with ADHD and ASD as a child? The signs were there but I never stayed in a school long enough for them to see patterns. They just knew I acted inappropriately and assumed it was all because of the family issues.
Can’t change the past. I can can only move forward. I suspect this is going to be a medication I am on for as long as cannabis isn’t legal here. It is the closest to what cannabis gives me of anything I have ever experienced. I love being able to do one thing at a time without my brain constantly jumping between 6 different tracks. This is pretty rad.


I am going to sleep later than I was before starting this trial but I am getting the same number of hours of sleep so I think that’s not so bad?


Also: I have lost 10 lbs in 3 weeks after this weight not budging for the entire time I have been in Scotland. I am eating as much as I feel like I want to eat. (Interestingly I crave snacks more at night when I take amitriptyline earlier than usual…) I think the weight loss is because there are fewer cortisol spikes with the lower anxiety level. Ok… also probably because I am drinking less alcohol because I can’t “feel” it with this medication so it seems kind of silly to have it.

A hysterectomy sounds better all the time.

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My mood is really awful for about 1/3 of the month. It turns on/off like a light switch. When I hit the day my period is actually going to arrive I suddenly have a nose full of snot, I feel like I am about to throw up, and I have vicious diarrhea. I feel like someone is stabbing me in the back with an ice pick. Bending over to pull a clean cup out of the dishwasher is stabbingly painful.

I’ll feel better in a few days. But right now I’m at the peak of bad mood plus bad body and it is a fucking nightmare. I am fairly likely to have ten more years of cycles. With 1/3 of the month being (some of it literally) a shit show.

Bodies are the worst.

Heart racing

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Here’s an Amitriptyline symptom I should note: I’m having noticeable elevated heart rate. My watch buzzes when my heart rate is too high compared to my level of movement. It’s going off almost all day right now. I’m elevated above 120 bpm for hours a day even if I’m barely moving around. That seems kind of problematic. Hm.

Because of the watch I can give specific data about my heart rate compared to exercise over a very long time period. I normally rarely hit 120 unless I’m doing prolonged fairly intense exercise. Now I hit that sitting in a chair over and over all day.

My watch is buzzing enough that the people I live with are noticing and commenting on hearing it. That seems… possibly not good.

Christmas planning

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For a lot of years now I’ve been trying to move towards less gifting. There’s so much emotional baggage around the entire topic of giving shit for Christmas. Almost no one outside our house is getting “stuff” from us this year. My little adopted nieces and Jenny and Noah is doing stuff for his family. We will give baked treats to our youngling friends in town but I’m not worrying about giving stuff to neighbors we have barely spoken to this year.

My big kids asked for a few items to finish their rooms from Santa. Eldest Child wants a box that can lock to keep stuff away from the little siblings and some fake foliage to finish her woods-motif bedroom. Middle Child wants a small table and a tea pot (haven’t found the tea pot yet–gulp) for playing tea party in their room. Other than that they are getting a few books and their stockings are barely half full. Additional presents are a floaty/light weight hippy dress for EC because even in Inverness she is often overheated and she has outgrown most of her clothes and MC got a beautiful hand made wrap in colors that they will love to go with their dressing up fancy obsession.

Last year I got everyone themed night clothes and they asked if we could please do that again so both big kids picked out a style they liked from Etsy. This was not a family tradition before moving here. I am amused that the kids have decided that this is going to be a tradition moving forward. Given that Noah is not usually one for wearing pajamas it may be a little weird for him to have to come along on this one.

Youngest Child is getting a gnome village from Santa and little gnomes in her stocking with some bath toys and hair clips. A couple of books as the only things to unwrap at this point.

It’s seeming a bit hilarious that I’m getting the biggest Santa present because I asked to upgrade the shoe racks as my gift. When we moved in I got a really irritating cheap £20 shoe rack as good enough to last until I knew what I wanted. Now I know what I actually want and Noah ordered it. They are fairly large because with 5 people and actual seasons we have way more shoes than we have ever collectively had before. So my present is a house thing for all of us.

I have a few things for Noah but not a lot and that’s all I can say about that because he reads this. I feel a little guilty about not doing more for him and yet he’s been telling me for years not to get him much. I don’t think he asked for a single thing this year. He doesn’t need any clothing items at all.

We didn’t do the mass Christmas card thing this year. I’m exhausted and sending a card to the US costs £1.70 a pop. We used to send about 100 cards. That adds up, yo.

I’m having a hard time shaking the programming from my youth that giving so little means I don’t love people very much. But we don’t need very much at this point and there isn’t a lot anyone wants. EC genuinely doesn’t want much. She likes having a room that is easy to tidy and she feels like she is mostly past the toys-stage and she’s not a makeup person and she doesn’t use fancy bath stuff and she doesn’t want or need a lot more clothing or shoes. We have all the art supplies we need for quite some time. MC is the sort who would always appreciate more but they have enough toys to keep them busy and they have a bursting wardrobe. They would appreciate being given more things but I can’t think of much they would actually use. YC doesn’t need much more stuff. They have enough to keep my house a constant tripping hazard already. I already rotate baskets of toys in and out of sight because if everything is out it is too overwhelming and just a mess. They would not be impressed by gifts of clothing even though they are the ones who are changing size the most quickly.

I am glad I didn’t get Christmas stuff out super early like I kind of wanted to. YC is breaking a lot of things and that’s feeling stressful. I don’t think things will be up long after Christmas this year. It will be nice to get back to having a lot of empty space in the house. I think I will like Christmas stuff being out more in about three years.

We’ve all been low key sick for the last week and we are all very low energy. It’s a cold, not Covid. Sore throat, barely runny nose, weak ass cough. Mostly just tired. But this year that means absolutely no going to school so EC has been home. After the last few years of starting to shove me away hard for budding independence reasons she has been real cuddly and that’s nice. I get in good snuggles with all three kids a lot these days.

Just plugging along.

On the third day of med trial my body gave to meeeeee

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Very little notice that I am using anything new. I would say that today I felt incredibly close to normal. I feel like I was a little slowed down but in the “I need more sleep and I’m working too hard” sense rather than in the “Holy shit I’m swimming through molasses” sense. I probably feel less of a malaise of depression. Today I was more patient with the kids than I have been on a lot of days lately.

I didn’t do as much exercising as yesterday (only walked 2 miles but I rode my bike almost 5 miles and that didn’t feel hard at all–more than a mile of it was up an extremely steep hill). We went out and picked litter with a group who has been moving around the city trying to help out in different areas every weekend. It was very productive and nice. Gotta meet our local hippie comrades.

I took the pill at 5:30 tonight because 6pm last night didn’t have me feeling sleepy till 9. I also took some pain medication tonight because my back and neck are in full on fuck-you mode and I can’t keep this up.

I don’t know that it is making a big difference in the nerve pain. My hand is still going numb quite easily. My elbow is on fire. My upper arm is numb until you touch it then it tingles and hurts. I can’t reach the wound site to see how tender that is by myself.

Overall I would say that right this minute I think this dosage is not a serious/permanent solution to the problem but the side effect profile is not so bad that I am terrified of upping the dosage to play with it. I am currently taking 10mg and up to 75mg/day is within normal expected range. Apparently it is expected that it might take 6 weeks to be effective as a pain killer. As of this evening I feel very comfortable with being willing to test that long. That’s actually a pretty resounding endorsement from me. Normally 3 days into a drug means I’m already trying to figure out how to get the fuck off it.

So I’d say a C+ or B- right now? I’d like more impact on nerve pain. It could definitely do more for actual depression and anxiety. But it is a start and it’s not a bad start.

And this is all fucking free.

Another day, another chance to record what’s happening

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Med responses are very important to me. I am upset that I have so few written records of my previous drug attempts. Oh, by the way my oldest heard me make a crack about having a hangover from the drug and she flipped out. She thought I was using hard street drugs because I had just run out of cope.

Serves me right for not telling my kids in advance absolutely everything I do with my body I guess?

Today was different. Less exhaustion. I woke up at 4 for a trip to the loo. I didn’t get back to sleep for close to an hour then I was up by 6:30. I took the pill at 7 last night and was asleep by 8:30.

Tonight I took the pill at 6.

Today we had already made plans to go for a walk in the woods with a family who lives about 1.5 miles away from us who are new to home education. They have a 9 year old boy and an 11 year old girl. The two of them both turned up saying that they were hoping for a kid of their gender. I said, “How would a non-binary kid who is not a boy and not a girl who likes to do things regardless of gender fit?” They had about two questions then they both went with it. For the record: that’s where middle kid is at again.

Anyway, I was… more calm than usual? I felt like my brain was slower and on the sluggish side. It was a less pleasant experience than pot but not completely dissimilar? I didn’t have any of the uplift I get from pot but I got a little bit of the “pause” between having a thought and reacting.

My feet are going to sleep ridiculously quickly. If I kneel down to put stuff in a drawer it doesn’t take 2 minutes. Usually I can kneel for 10-15 minutes before my feet fall asleep.

My back has been hurting quite badly all day. Of course I have walked 6.5 miles after it hurt when I woke up. Cause yeah. I carried the littlest home for the final mile because she was utterly wasted.

I’m still having some nerve pain in my arms if I tweak them up to use them in an unusual position. (Putting the baby in the back carrier was a bit festive.) I feel a lot of tightness and general arm unhappiness. I have fairly deliberately not typed much today trying to rest. (Really the last couple of days.)

I have very much wanted to not add more medication to this in the first few days. So I’m not taking anything for the back pain or headache. I want to have a really solid idea of what is coming from the Amitriptyline. Normally I would definitely be medicating for those at this point because it hurts.

I’m having massive time dilation. I can check and see this is the end of the second day. It feels like a lot more than that. I labeled the pill packet with the exact date I am supposed to take each pill because I am worried about taking too much or skipping a day and not noticing.

I am utterly out of patience with the kids but I think that was happening before the meds. Right now it is hard to remember.

In unrelated news: I have 17 books to read in 34 days. Time for some graphic novels (Neil Gaiman’s American Gods 1 & 1). In another day I can finish The Cooking Gene, and I need to sit the kids down and finish Odd Girl Out. That will leave me with 14 books to go. Eep. Maybe my goal was a tad ambitious for this year…

New med tracking

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Started Amitriptyline last night, primarily for nerve pain. I got a solid 8 hours of sleep, which I don’t always do and that seems nice. As I was going to sleep I felt like I got to watch a firework show on my eyelids. Lots of bright white lights dancing. As is typical for me it took more like an hour and a half to really hit me instead of an hour.

ETA: Yeah, I barely stayed awake long enough to eat a little breakfast then I almost passed out on the table so I crawled back to bed. I was in and out for a while making sure that oldest got to school. Then I slept hard until 10:30 when I could tell that I needed to go to the bathroom to deal with blood (it’s the heaviest day of my period. What glorious timing).

My dreams were super intense and overwhelming and constant and highly sexual which I did not expect on a medication known for lowering libido.

I am so groggy that middle kid has been talking at me for a while and I have literally not retained a word of what has been said. I feel slow and stupid and exhausted.

It’s a very good thing I homeschool my 10 year old and Noah works from home because I don’t know how I could have provided care for the 2 year old today while alone. Scary thought. Woof.

I have a really intense headache at the back of my head near the top of the spine and it shoots straight through the skull to make it throb hard on my left temple. My mouth has been throbbing, which is a weird ass feeling. I keep feeling like I am falling only I’m lying prone at the time.

Strangely it was easier to sleep than usual because even though my neck/head hurt quite badly my shoulders already feel a little easier. It didn’t instantly hurt lying on my side. If I reach back gently the surgical wound site still hurts.

The headache is absolutely massive but I am worried about taking another medication on top of what is in my system.

I am sad because my lack of help today is going to mean that Noah has to work more days into December. (He was going to take the month off.) But at least I think it’ll only be a couple of days next week and not the whole month.

Also of note: my typing has been super shitty. It’s taking me 3-8 tries to figure out how to spell a lot of basic words. Yay spell check preventing me from looking in writing as stupid as I feel.

Life keeps plugging along.

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Today my toddler was so cute. Saying things like “Babies need hugs because babies get angry. Babies need hugs because babies get sad. Babies need hugs because babies get frustrated. Babies need hugs because babies feel loving. I love you. *big hug*” And: “I finished my cupcake, now it is time for chocolate!” Err, no kid. That’s not happening.

Eldest Child is, in my opinion, fully matriculated from home schooling. If the school goes on lock down and she has to distance learn through them it’s not my dog. I’ve been saying consistently that I am not withdrawing her from secondary school. Once she starts this school it is six years to the finish line. Today was the first day. She was elated. She should be along home… sometime soon.

Middle Child and I worked on their room today. The walls and trim are done. The closet is not done. The ceiling is not done. I cannot buy more paint for the ceiling because the paint store does not have any of the base in stock and hasn’t been able to get a shipment in a while. I cannot finish the closet until the wonderful handyman comes in and finishes the stuff he wants to add. So I’m relieved of painting duty for a while.

We started off the day with a walk to the park. We went out when EC left for school and the youngest two played for half an hour. Then we came back and I did laundry and dishes and we all had a snack. Then we painted. Then lunch. Then more laundry and dishes.

I need to sit down with MC and work out what her next “term” of home school will look like. I need to move most of the paint out of kid bedrooms and out to the shed.

I’m waiting for the handyman to put a backsplash in the kitchen because we are rubbing all the paint off the wall with our frequent cooking. The previous owners didn’t actually paint this house. They just used primer. Cheap fuckers.

Tomorrow we will go to the park when EC goes to school again and I told the littles we could stay longer. When we get home we are going to do a bunch of garden work. A lot of the plants inside the yard need thinning and I’m allowed to rip out grass and put plants along the edge of the road. I think I see a fun way to kill two birds with one project.

I need to figure out where will be the “paint clean up” zone in the future. Once we are completely done with this project I am going to scoop up all the fucked up dirt and put it in the garbage then keep working towards creating a pond.

I am really happy that all of my ongoing projects at this point feel tiny and/or easily contained/managed. They are all either a few hours at a time or they don’t create a cascading horror show of issues while they languish waiting to be finished.

I have a hard time when it feels like I can’t see the light at the end of the over-work tunnel. When I don’t know if I will be done in a week or a month or six months. I’ve been in that place for about a year now. Everytime I think I’m to the end of the big work push something breaks or there is some stall that makes things drag out forever.

I need a reduced work load. I need more rest. I can’t sustain what I have been doing. Not anymore. I’m out of spoons. I scraped the back of the drawer. I went to my neighbor’s house and borrowed all of theirs. I’m just… done.

Update on the cancer

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All of my current biopsy reports say that the cancer was fully removed. Now at 2.5 months post surgery the wound has fully closed (YAY!!!) and I am feeling much more vigorous. I am still on some restrictions for activities, but I’m not fully following that and I’m feeling better.

I’m starting to run again after a four year hiatus (remodeling the bathroom, pregnancy, moving, traveling, cancer) and I’m getting into gardening in my new location. I’m feeling a lot better.

What can you do in life other than try to get up every day and do what you can do.

Drifting

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If I didn’t feel so afraid I would have a lot to document. Life is being quite eventful but I feel like talking about it will cause problems that greatly outweigh how stressful it is. This is the least therapized my life has been… I don’t know, ever? I’ve been pulling back from my US friends. Not because I love them less but because I am utterly exhausted and weary and pursuing them takes enormous energy. I’m not able to put much into creating new friendships here in Scotland. I’m trying, but it feels like swimming uphill through a river of molasses.

My body feels so desperately tired. I’m sleeping a ton–that’s not like me. I’m sleeping 8, 9, 10 hours a night. Historically it is difficult for me to get more than 7 hours of sleep. After these longer stretches I am so weary getting up from a chair feels like a struggle. Is this a deeper manifestation of depression than I am used to? Is this the result of still healing from surgery? Is this trying to actually unwind from the years of anxiety in California/traveling? I don’t know but I feel existentially exhausted. I feel empty.

I don’t know how to fill my bucket. I want to feel more whole. I want to feel like I am thriving instead of treading water to survive.

It’s hard that I am not cleared to go work with plants yet. It’s hard that I feel like I’m not allowed to do much. I’m still in the “spending money to get established” stage (we don’t have enough bed-sized blankets… we have a ton of baby blankets though…). We found some teeny bugs in the food storage area, so protective containers must be acquired or we risk food spoilage. Not stuff we can just not buy. I mean… we could burn more oil keeping the house hotter. That’s penny wise and pound foolish.

There’s a lot I wish I could document for my own sake. But pieces of it aren’t my story to tell and I am deeply afraid of the consequences for other parts.

So I don’t talk much about how I’m feeling with my voice and I write about it even less with my hands.

Is this bone deep discomfort how other people feel? Finding a therapist isn’t really an option for a variety of reasons. Living here may mean that I am permanently out of therapy for a variety of reasons. Well, unless I pursue a degree and it becomes a mandatory part of my job. Wouldn’t that be a funny reason to become a therapist? It’s a way to make sure I have to be in therapy too?

I think a lot about the massive waiting lists in this country for mental health support. I think about what it meant when I was a kid that I had help even though some of it wasn’t the best. It was a lot better than nothing.

Comparing one’s life to other people’s lives is such a complicated and tricky thing. Sure, other people may have X, Y, and Z that you don’t have… but they also have A, B, and C that you don’t have and would you really prefer that balance? This isn’t a fence with one side or the other. It’s a grid with many many many different squares and balances and problems.

I like that often every ends up in my room a bit before bed time to curl up together and read. MC has decided to read Tamora Pierce books. They are a bit above her reading level, but if she sits close to me and asks for occasional help with words she is making her way through. She absolutely loves them. She is stunned that even in a magical temple school there is still bullying. Yeah honey… people jockeying for dominance is absolutely universal. That’s just life.

Today we have our first health visitor experience to check on YC’s growth. I have two doctor appointments next week: a pap smear and a trip to my GP to go over genetic testing results and talk about next steps for EDS assessment. I get the impression that beyond the genetic testing (that’s super fucking expensive to run) Scotland wants to rerun all assessments because they are not interested in foreign medical records. That’s going to be interesting. At least I have the results of 35 years of forcing my way through the US system like a determined train to use as a guide.

My hands hurt really badly. I am trying various handicrafts because I’m bored as fuck. Arthritis is going to be my forever nightmare.

I feel like a fucking whiner. I am definitely in the “but you don’t look sick” camp but my body is degrading really fast. It’s hard feeling like if I don’t talk about how poorly I’m doing I just look like a lazy lump but if I do talk about it I’m a whiner. I’m not lazy; I’m in pain.

I’ve gained weight again. Ha. Good thing I bought my trousers so large.

It’s time for a day.

Anxiety management

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Yesterday I was told that I have three months ahead of me where I am on restriction for arm exercises. That means no yard work until May or June. That means when the bookshelves finally get built I shouldn’t put books on them. That means I really shouldn’t be doing so many house chores.

It’s time to hire a house cleaner and I feel really upset about it. I hit that level of disabled and I can’t expect my family to carry my weight of chores on top of their own for so long. Not in a house this size.

I did a big batch of cooking a week ago and my hand is still swollen. I have to buy and get into the habit of using a food processor. My arthritis is that bad.

I am not feeling good about my body, my self worth, or my general competence. I feel pathetic. I feel like I am seeing my usefulness as a tool slip away.

I was cleared for riding a bike and for going out and doing walks. The doctor was quite firm that I must not pick up my nearly-two year old at all and pushing a pram is… not really wise. I can’t swim but I could supervise my older children swimming.

But I can pull her in the bike trailer and attaching the trailer to the bike is dead simple and no real strain. So that’s something.

I feel absolutely horrid about myself. All of the things that make me like myself are falling away and I am left with the bits I despise.

And that means I want to get into stupid arguments on the internet over paper plates. I didn’t. I walked away. I know it is a stupid control issue. I am anxious as fuck. I want to be stupidly defensive of my choices and there is really no point. It doesn’t matter if this stranger agrees with me or not. I did what I did and… there is no value to arguing. I am not going to live how they live and I don’t need to argue about it.

I feel stupid and useless and I want to not feel so bad about myself. I won’t get that from stupid arguments about consumer choices.

I’m not sure I am going to feel better about myself from anything this morning.

Cabin fever is setting in

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I feel like I am going crazy. I am such a bad patient. I’d like to be doing about 9,482 things. Every couple of days I go crazy and I do something like chopping vegetables and then I spend the next day feeling like shit sitting in a chair. Yesterday while sitting in a chair I spent some time carving holes in a chunk of wood (I am not finding a candle holder that I like) and my stupid watch was yelling at me because my heart rate was too high while sitting still. Fucking body.

Apparently the hole is a bit wider (I’m pulling stitches because I can’t seem to stop moving my shoulders) but it’s not that deep anymore… this is progress. At this point the surgeon just wants it to heal from the inside out. It’s happening. The red swollen bits around the wound look much better. The skin is peeling and ugly, but it looks like healing.

I’m bored. Only boring people get bored. Thus, I am now boring. I want to stop being a boring person. I am not allowed to until I heal. waaaaaaaaaa

Night before last it snowed and the snow lasted all day; we live in a beautiful winter wonderland. (It was just a light dusting; I’m not sure it was a whole inch.) Today it will be 3/4 degrees and raining. Tomorrow is climbing back up to 9. Might snow again on Sunday! It’s not going to be in double digits again for quite some time. I’d love to be going out and hiking the Roman road in the frost and chill–it sounds peaceful and romantic. But I know me. I would be wanting to pick things up and bend and do things like wear my toddler. So… that’s out.

I’ve read a few books. It’s not keeping my brain occupied. I want to do more. Healing sucks.

Fud

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I suspect I am thinking about food so much because I am bored. I am not really enjoying sitting around waiting to heal. I am doing ridiculously bad at it. I just want to go work, damnit.

I used to date this guy who wanted to play with my genitals for a few hours without me ever getting to the exciting part. After twenty or so minutes of this I would dissociate and I couldn’t even feel what he was doing anymore. It was really boring. Thinking about what I want to do in the garden is starting to feel like that. It’s not feeling like the fantasy bathroom I didn’t really think I would ever get to do. (But I did it.)

So today I made a big raw spread for lunch. Then I made cock-a-leekie soup and I started the stock for potato leek soup. I made a French toast casserole for the morning. For lunch tomorrow we will have the potato leek soup and steak (if the steak isn’t bad because we missed the use-by date; damnit). Then dinner is cock-a-leekie soup (we didn’t eat it tonight….) and haggis and neeps and tatties because it is Burns Night. We will be reading poetry and being silly with it.

This week we are doing a big spring cleaning for Imbolc. We also want to make a cake and a feast to go along with the holiday on next Sunday. The cake will be made ahead.

I have unpacked that which I can unpack until the bookshelves are made. This is… not feeling like enough. I want to be done. I want to be fucking moved in. I loathe cardboard boxes. I mean, I will keep some around to play with because they are dead useful but having my belongings in boxes feels like an affront to my spirit. Either get fucking rid of it because obviously you don’t love it enough to take it out of the box or UNBOX YOUR STUFF. Moving has been such an intense thing in my life. I’m not saying that no one else should be allowed to own stuff in boxes; this is a me-thing.

I’m ready to take down the winter twinkle lights. As of my wee one’s birthday in a couple of weeks we will be down to a measly 10.5 hours of night. That’s how much time my house should probably be dark anyway. Ok, so it isn’t quite there yet… but it’s spring cleaning time! Get the house tidied!

Whyyyyyyyyy?

Because I always do a spring cleaning and it makes me feel like a hard worker and I take pride in that. For each thing there is a season and at the end of the season I take it down and put it away so that it feels special again next year. This is my one dust a year, dangit.

I have my bike trailer now. And my back is still open and strained and unhappy and I can’t go anywhere with it. My impatience knows no bounds.

I should be in bed. It’s bleeping 11. But tomorrow I will get to take care of YC for 4.5-5 hours alone while Noah and the big kids go off to the theatre class. Noah will get to have some down time while the big kids play. Ah well. I will play with my lovely little girl. She’s frustrated I am not taking her out but I can’t. Not until I heal.

Fuck healing! Hurry up! This is ridiculous! What, has this wound been healing for 14-24 days depending on how you look at it?! Isn’t that long enough?!?!?!

Bodies are annoying. I FEEL LIKE THE CASTLE IN THIS COMIC. But three years from now… watch out! I will do things!

Adventures in the NHS

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On Friday when I noticed that the wound popped open again I left a message on the voicemail of the surgeon who did the procedure. I wasn’t surprised that I didn’t hear back over the weekend. We watched the wound and it improved a lot in appearance over the weekend. Today I got a call to come in and let the surgeon see what is going on.

I went in and sat in the waiting room for well over an hour. Given that I was being slipped in during a fully scheduled day this didn’t bother me a bit. My children are well behaved and polite so it wasn’t a problem for anyone. We sang very quietly to YC and read books and MC wiggled a little in her chair listening to music on headphones. No trouble. When I finally got called in I sent the kids off to the cafeteria with some money for a snack.

The nurse who was examining me was chatty and social and she had a bunch of tangentially related questions to the wound. Generally speaking she just seemed to be trying to develop a bit of a relationship. Given how small this town is, I’m not surprised. She took the dressing off and asked for specifics about the timeline of how healing is going. She asked who has been changing my dressing for me as the one we used seemed small. I told her that we are doing it and we ran out of the bigger ones and haven’t made a trip to the pharmacy yet. She was pretty shocked I am not having a community nurse do all of it–she asked how we were managing. I laughed and said we both have a lot of experience with wound care so it’s not really a hardship for us. She asked what I meant by that and I gave a run down of medical procedures either Noah or I have had to care for and her eyes just about bugged out of her head. She could not believe that people would be sent home with such major injuries to just figure out care on their own. I laughed and said, “It’s really nice to be living in a civilized country now.” She startled. She said that she guesses you don’t really appreciate what you have.

The surgeon came in (I’m having a bit of a hard time with the fact that surgeons are Mr/Ms not Dr) and started off with an abject apology for blowing me off when I brought up the EDS during the surgery. I got the distinct impression he spent part of the morning doing a cram session on what the fork it is and why it matters. He and I were quoting very similar details back and forth to one another about the condition. He is absolutely adamant that I need to get in to see a rheumatologist ASAP because my notes are bare and this condition is a big deal. He apologized again that there isn’t an EDS specialist in all of Scotland. He spent our entire interaction apologizing over and over again. I don’t think I have seen a medical person quite so deeply in “Oh shit I fucked up” mode.

He was clearly very grateful that I wasn’t angry. I told him we are learning together and things will happen along that path. Not everything will go smoothly and as long as I don’t die… we’ll improve in the future. His eyes kind of bugged a bit.

He is now quite concerned about the EDS. He stressed that it cannot be cured it can only be managed. I told him I am fairly chill about it because I’ve had all these problems for my whole life and I’ve been managing and now I have a name for it.

He said that since my wound has popped open twice and the second opening happened several days ago that it can’t be closed again and now I need to just keep it covered and wait for it to heal from the inside out. It does look like it is making progress healing and he does not want to remove the current stitches anytime soon. It doesn’t look like there is any sign of an infection and antibiotics were not mentioned. The occasional twinges of pain I feel are well within the expected level for the depth of cutting he had to do.

In the US the feeling when interacting with a doctor is often “How can I get this person out of my office” because the likelihood that you will really be a specific doctor’s problem in the long run is fairly small. There aren’t many surgeons in this region and I have a complicated medical reality and I’m not that old. The likelihood that I will end up under this surgeon’s knife again are really quite high. When I mentioned the name of the GP I am developing a relationship with he said, “Oh she’s quite nice! Good I’m glad she is getting to know you.”

This is a small town.

The generally expected rate of EDS says that there should be something like 10-12 people in a city this size. That means that information about the disorder is pretty rare and I can understand why people who provide medical care react like they are getting hit with electricity when they realize they really must learn more to care adequately for those specific people. He flinched when I said my daughter has it.

But not in a way that made me feel bad? He seemed like “Ok, I need to step up to this situation” and he was recognizing that the step rise was a few inches higher than he first assumed. That’s not insulting to me at all.

Our breakfast conversation at the house was about how you have to make mistakes in order to learn. I feel like this surgeon wants to get more information so he will never make a mistake like this again. He will handle my post operative care differently next time. That’s nice.

Two pieces of good news in one day

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Yesterday we went to the school for a meeting with the head and the two classroom teachers. Everyone was super kind and upbeat. They extended offers of further assistance should we desire any in the future, we discussed the return of money, and they wished us well. The kids turned in the school equipment they had and… we are officially back to home education. (I will need to start saying home ed because that is the local lingo and folks here hate the Americanism of home schooling. I suspect I could get away with a bit of it due to… being American but I’m going to try to adjust.)

Also, we finally got an email scheduling our delivery. Sometime next Wednesday. Six more days until our stuff arrives. When it arrives it will have taken five months and a day from door to door. 22 weeks and a day. The estimate was 4-12 weeks. This is going to get the 1-starriest of 1 star reviews. And we need to open all the boxes quickly to check for damage. Woo. I have been told that I should expect a lot of mold damage. Fudge and suckerfish and whiiiiiiiiine. That will be super fun. And that means poor Noah is going to need to do most of the work for checking because I sincerely doubt I will be up for doing any of the lifting.

My wound had noticeable bleeding when we were in Edinburgh. That was 15 days out from the original surgery and 5 days out from the second stitching. That’s not so good. On the upside, I don’t know of a reason I have to leave the house until I have a doctors appointment on the 31st of this month. I am going to decline offers of suture removal before that. That’s a dermatologist appointment. The wound is very uncomfortable to the point that I would still say it hurts. The other upside is we might actually get the money for selling DVC soon. It’s a bit over a full year of run money so that sounds nice.

Wait, I do know a reason I have to leave the house. In the next two days I need to go pick up my library card. I signed up before the original surgery and I thought I would be better by now. It’s not a long walk away.

I’m really excited. I feel like I have my kids back. We already have the schedule agreed to and written on the white board in the kitchen. The kids know that chores and academics need to be done by noon if they want to game with the local home ed kids in the afternoons (they were invited to a Minecraft realm and they’ve been really enjoying that). On days they don’t get their stuff done they will probably spend the afternoons playing or reading books. I’m sure we will have some slack days in the semi-collapse post school rigor.

We have exchanged contact information with a number of parents from the school and I hope several of those friendships continue. One family in particular I am quite certain it will, others are TBD. We have tentative plans for a weekend hangout at the park with one of the girls from MCs class.

We won’t be able to jump into the home ed community until my back heals so I’m sort of extra motivated to sit in a chair so I can heal faster. I think this is going to be fun. And soon I have my stuff! This is great! SIX MORE DAYS

Uncomfortably not-numb

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I am trying to sit still and heal. I really suck at this part. I slept well last night but I feel groggy and stupid. My back still burns and aches.

I feel frustrated with myself for not doing more research on EDS before the surgery. I have a history of complications and no one is going to track them or advocate for me; I have to do it. I told EC this morning that I am glad that she is learning these lessons before she is even a teenager because someday something is going to go wrong with her body and she will know enough to advocate for herself early and hard. EDS means difficulty in healing: our collagen is different. I already knew that I had issues with local anesthesia. This is the first time a wound has popped open like this, but I’m getting older and it’s going to be a bigger concern as time goes by.

I’ve been talking to a buddy who has EDS and a bunch of similar issues. She’s trying to help me figure out how to present this information to the doctors here. She’s upset because the surgeon told me that EDS wouldn’t have any impact on this kind of surgery. That’s not a great sign for the folks around here knowing how to handle my condition and it’s a small pool of doctors here. I am going to have to educate them all.

Festive.

But if I frame it as “There is a small pool of doctors here so these are the same people who will treat EC when she has issues” then it feels a lot more worth the hassle.

I’m tired and I hurt but I’m bored too. I want to be working on something. I want to be moving forward on something.

My last contact with the shipping company says that the next company that will touch my stuff is just waiting until they next have a delivery scheduled to come to the Highlands. It could take a while. Our stuff has sat in warehouses for more than three months. That was supposed to be the maximum amount of time for shipping it. So the transit time is within the estimated time… but people just don’t feel like doing the transit part very quickly. Still no sign of them wanting to do this soon. Fuck everything.

Oh crumbs. I just remembered that we are going back to Edinburgh on Tuesday. That’s going to be fun right now. That means I get three days of “rest” before getting to travel/walk/take care of business for 16 hours. Fun.

I put rest in scare quotes because I was alone with the baby for five hours yesterday.

Shit.

I feel like absolute shit. I’m past the point where I’m holding my right arm to my torso to prevent any muscle movement. Yay? This is all massively confounded by the fact that I feel really guilty about “Noah’s month off” turning into “Noah doing everything for Krissy for a month”. I feel so overwhelmed and guilty.

I’m in the narrow window of the month when I’m more likely to be interested in sex but hahahaha no.

I feel really bad about myself right now. I feel useless and lazy. I feel like somehow I did something wrong because I should have known that I needed to do a bunch of research before the surgery and come in with documentation of my fucking special needs. I should have known that it was too soon to take the sutures out. I…

I should have done everyone else’s job for them or it is my fault things went wrong. Because I didn’t do more than my share now Noah is getting stuck with my share and that feels really unfair.

I’m tired and sad and worn out. I’m sick of resting.

But, I emailed the professor who has been on my mind for over a month. I did a bunch of research into the education system in Scotland. I know more about what I’m going to need to learn over the next few years.

Even being idle doesn’t have to be idle.

Sidebar: I WANT MY FUCKING STUFF.

Complications

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I had the stitches out yesterday from the surgery I had on the 31st. Then the wound popped open and I had to go see another doctor to have the giant gaping wound restitched. Apparently that’s called suture dehiscence and it’s common for folks with EDS. I’ve been doing research this morning. Apparently EDS means I should have had my sutures left in for twice the normal healing time. I am going to figure out how to get a bunch of research on EDS to my medical team. I mentioned on the operating table that I have it and the surgeon said it wouldn’t matter.

My kids were understandably pretty freaked out. MC told me she had an unhappy tummy when she thinks about the wound.

I said that being afraid of the wound is like being afraid of riding your bike. I am going to die someday–that’s the end result of being alive. You are going to fall off your bike sometimes and the only thing you get if you are afraid of it is that you can’t enjoy the time you are on the seat. I am going to die some day and my body has a lot of complications that I’m trying to manage so that I can stay alive as long as possible. My body has more complications than average and that means I have to do a lot of research and I have to advocate for myself because keeping me alive isn’t the same process as it is for other people. If we waste a lot of time being afraid of my eventual death we won’t get to enjoy the time I am alive.

This research is extra important because EC has the same condition and the more I find out about myself the more I can save her from suffering through similar issues. She can advocate for herself earlier and harder.

Now I need to figure out how to get this research to my medical team. It’s entirely from highly reputable/peer researched locations. I’m not researching on blogs (Even though blogs are often pretty fucking accurate) so I hope this is taken seriously.

I need to assume this will take twice as long to heal as “normal”. I need to have the stitches stay in longer than expected and I need to say that to the doctors involved in my case. I need to be proactive because I am the only person who suffers from these fuck ups. My back hurts a lot again today. There was partially healed skin there that ripped open. It doesn’t hurt as much as it did the day of the surgery but it probably hurts as much as it did on day two or three post surgery.

I almost certainly tried to bounce back faster than I should have. I feel so much shame for “being lazy” when I don’t help and do chores around the house. But here I am with more complications post-surgery because I didn’t let my body have the time it needed. It’s like what happened after the septoplasty when I probably had three or four times as long of a recovery because I didn’t take the twice as long I should have taken.

Ugh.

I should probably sit in this chair for ten days or more this time. That’s hard for me. I must work to feel worthy. But if I don’t rest I will be less able to work in the long run. It’s complicated.