Tag Archives: health

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.

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.

Aging and recovery

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I am not shaking off this surgery very quickly. It happened almost 48 hours ago and I have barely been out of bed since. I guess the upside of that is that the body battery on my watch says I am up to 84%. It said 93% when I woke up. Then I got up, ate breakfast, and took a shower. If I burned that much fucking energy with breakfast and a shower no wonder I feel like warmed up dog food.

Every time I breathe it hurts. The wound is in the center of my back. Every lung movement hurts. Any time I grip anything with my hands it hurts. If I lift my arms it hurts. If I hold my body upright under my own power it hurts.

I am feeling really fucking old.

I am also writing this from bed, where I intend to stay. I took pain killers the day of surgery and yesterday. I haven’t had any today and I don’t know if I will need them. Yesterday it was a solid 6 for me. Today it feels down to a 5 but it is still distressing and interfering and unpleasant.

I’m reading fluffy books because I can’t bear to try to seriously think. I watched some Netflix, but that’s less good for some reason.

Youngest Child is coping surprisingly well with me being in my room behind a gate. Her siblings and her dad are showering her with attention and play so she’s doing well.

I wonder how many days until I feel good enough to be up and about.

I got pushy

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The school keeps hinting that they will call for a meeting… then not doing it. So yesterday i said I would like one and it is happening today.

I am going to ask for flexi-schooling. In the US it would be part-time schooling. There are aspects of being in school that my child will benefit from experiencing, I agree. There are aspects of being in school that are not going very well and I would like to opt-out. I have done my research and whereas it’s not common in Scotland (only about .5% of students flexi-school compared with something like 1%-2% who home educate) but there are students in our Council who do it.

Not surprisingly the overwhelming evidence is that flexi-schooling is most common among students who need extra help who cannot get it in schools.

The aid who is supposed to provide such assistance in my child’s classroom is fairly clear in her dislike of my child and frequently refers to her as deficient. I would like her to spend the morning at home working with me one on one towards developing the skills I want her to work on in the manner I have already stream lined with my oldest child. The school cannot argue that there is a problem with my methodology given that my oldest child is at the top of her grade. I did not have the crucial two year period my middle child is now entering. I’m going to take it. Fuck school.

But I do want her to go to school part-time. I think it would be best if she arrived at lunch time to do the afternoon with her peers. The morning is when her class does reading, writing, and math. Those are subjects I am more than qualified to teach and I have been wildly successful with my older child. It is not benefiting my middle child’s reading ability to be told she has to read books that are way below her level and only read 1/3 of the quantity you are capable of reading then stare at the wall while your peers catch up.

I understand that the classroom teachers would prefer if my child were less animated. I am mindful of the fact that on a global scale we will need people who are self-starters, people who are able to find their own motivation to accomplish things, and people who are generally willing to disrupt the social order and demand change. I do not want her to be less animated. But I can offer up less disruption to school time as a compromise.

Of course, I am waking up with a very sore throat. By afternoon my voice is going to be raspy, I can feel it. What optimal timing for a school meeting.

One of the few things I liked about the US school system was the ambition to have an IEP for every child. It is never going to happen for reasons of scale, expense, and lack of support but it is a beautiful ambition. I know my middle child needs a lot of one on one help. Believe me I am aware. I don’t believe this to be permanent, but at this stage she genuinely does need it. If I am getting the support of the school for part of the day I can supply it. I do need some help at this stage. I am really tired. But I can see that my child needs me to once again dig deep and just figure it out.

I’m capable. I’m willing.

It’s time to go negotiate for my child. Alright. Bitchy nice. Implacable. Decisive. Commanding. This is how it is going to be because my child needs it. She needs time to practice writing. She needs kinesthetic support for learning to spell. She needs time to seriously actually read instead of bite sized chunks of not getting much out of the experience. She can come home and get a much better environment for supporting her in gaining those skills. She is following the typical learning curve for her bloodline. I will not tolerate her being insulted in that process.

The NHS is pretty rad so far…

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I really like my doctor. She’s pretty rad. I went and saw her again today. We talked about anxiety, sleep, cancer follow up, exercise, and diet recommendations. She is dancing around the hint that she thinks it might improve my general health if I lost some weight but she has not said it directly and I appreciate that. She thinks that heading in a vegan direction has the strong likelihood of improving general inflammation so it might improve pain stuff but she sees no point in it for cancer prevention in my case. She also implied it might make managing my weight easier but she is just hinting.

In this country they don’t like giving Lorazepam for sleep the way I take it, they prefer Diazepam and she stressed that in general any doctor here is going to be very hesitant to give it to me on a long-term basis. Here they dislike any sleep aid for longer than a 2 week period. But given that my problem isn’t staying asleep it is getting my racing thoughts to calm down enough to go to sleep… she sees why I like Lorazepam and she is comfortable bending the rules somewhat in my case. She said “If I had had your life I would have trouble going to sleep too.” (For the Americans, she wants me off Ativan and on to Valium instead.)

She wants to see me again when my medical records arrive so we can discuss my specific drug history and what she might like to try for anti-anxiety going forward. I told her I would be happy to trial drugs that are available here and not in the US once we are able to go over the gene testing report together so we can have a solid idea of what I am likely to have a strong negative reaction to. So far I am really impressed with her. I have gotten far less push back than I do from US doctors. After our next visit she would like me to meet a psychiatrist here but she assumes I won’t be seeing them on a regular basis.

She asked how much I exercise already and said, “That’s really great! It sounds like it might be nice to do some of that in a group so you make friends but you don’t really have to stress about upping the amount.” She has already given me a list of places/organisations for group exercise so I can work on general fitness stuff and community building at the same time. That’s pretty rad. This area has a pretty big focus on trying to increase exercise for general health. She even said she doesn’t think I need to eliminate alcohol. She told me that depriving myself of things is going to super negatively impact my mental health and that will probably be a bigger problem than what damage I will do to my body with alcohol/sugar/meat products. She stressed moderation.

For a 15 minute visit I felt that was about as good as it gets. She gave me a ‘scrip for Diazepam that will probably last me 6 months. She said that if I only need a new ‘scrip every 6-8 months she thinks the NHS will deal with the fact that it is usage that doesn’t follow their general recommendations because I am clearly not abusing it. I just have severe long-term mental health concerns where I do require a level of usage than is different from the “norm”.

I will be calling for an appointment in January because hopefully my records will arrive by them. I see the dermatologist on the 2nd of December. That’s really not a long wait…

Second round of triage.

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I went to an incest survivors support group for the first time on Tuesday. It went well. No histrionics. The other three participants have been together for over a year. I swear to god I am a professional new kid. 

At one point we went down a checklist of all the various symptoms and physical problems that Early Childhood Sexual Assault (ECSA) survivors have. With the exception of a shy bladder (I can pee anywhere) I have everything. If there is something bad associated with ECSA I have that problem. I am completely textbook. I spend a lot of time feeling fairly ashamed of this.

Stomach and GI problems are big for us. My stomach has hurt my whole life. As an educated adult I will label it anxiety. As a kid all I knew was that I kept being told over and over again, "Oh quite sniveling everything will be fine" and then someone else would beat the shit out of me. I have no idea how many times I was beaten as a child.  I went to 25 schools. I didn't get into a fight in any of the last five high schools. By then I had managed to avoid that specific issue. I got into fistfights–several in both middle schools. That leaves the 18 elementary schools. I don't have any memories of elementary school that are not tied up in people physically hurting me. The teachers beat me (in Oklahoma and Texas) and the students beat me everywhere.

My mom would tell me that people would like me more if I didn't dress like such a freak. From when I was very young I dressed like an orthodox conservative religious group. If I had been able to get away with covering my hair I would have. I wore long dresses. No one saw my skin. 

But I still got raped over and over. My dad sexually assaulted me/raped me over and over for more than a decade. Before I stopped him. First by requesting no more visitation and then when I prosecuted him.

The other eleven people who raped me all started out as "friends". They were going to "help" me. They "loved" me.

My stomach hurts all the time. I live my life in an incredible amount of fear.

When I turned 18 I decided that since being raped and beaten was unavoidable I was going to try and figure out how to control it. So I got into the bdsm community. I played with all the Big Names. I was an extremely heavy player. I have safeworded exactly once and that was when someone used a cattle prod on my vulva after I had specifically told him that my three hard limits for the scene were scat, water sports, and cattle prods. He saran wrapped me to a table so I couldn't move and then got out the cattle prod and said, "I hear you don't like these." I was 19. I had been in the community for less than three months. He was a Pillar of the Community. Of course I didn't make a stink.

That's just how shit happens in my life. I say: don't do ______ and then someone immediately does it. It is far safer for me to not think about the things I don't want to have happen to me. If I say, "I don't want to have sex with you" it is nearly inevitable that I will be raped.

No wonder I don't leave the house much.

So I need to talk to a doctor about my stomach and GI issues. A big part of the reason I smoke as much pot as I do is because I use it as an appetite stimulant. Most of the time my stomach hurts too much to eat. I feel cramping and waves of nausea on a daily basis. My stomac hurt. When I'm stoned I feel fine. I can even eat vegetables. Trying to eat vegetables sober means I will be in horrifying pain. It hurts so much to digest. And when I eat a salad completely sober I have burning painful diarrhea not long afterwards. 

This is why I didn't eat vegetables as a child.

Over the past few years of being a heavy stoner I have managed to get my diet to a place where pretty much any nutritionist would say, "Well done!" I get a weekly CSA box. We eat absolutely all of it. We eat pasture raised, humanely treated meat. Maybe slightly more than strictly necessary… but I don't think so. I eat a lot of fruit. We eat some starch still, but not even with every meal. White flour and white sugar are now things that are more like sometimes foods.

But I can't really eat sober. It hurts too much. I can take a few bites. I can never eat enough. 

When I was a kid I solved this by living entirely on carbohydrates and staying so full that my stomach never had the chance to get this empty painful feelings. Getting hungry is agony. Simple carbs are the primary thing I can eat without pain.

And I've almost entirely cut them out of my life because they are "bad for me" so when I'm in pain and I'm hungry and I want to eat I can sometimes end up sobbing and sobbing because either I can eat something "good for me" that will hurt me more or I can eat something "bad for me" that will long-term hurt me in another way  but provide instant relief.

I've been doing some googling on chronic bronchitis. I have to stop smoking. I have ordered a vaporizer and I will have no choice but to completely stop smoking. (It should arrive on Monday.) I grew up in a house where you couldn't see the opposite walls because of the haze of smoke. My lungs came pre-damaged. My mother was a chain smoker. Auntie smoked heavily during my early childhood but quit by the time I was in middle school. Uncle Bob smoked longer than her but I think he stopped when I was in high school. Our house was incredibly difficult to function in. Apparently chronic bronchitis is one of those incurable it can kill you super fast if you keep fucking with it sorts of things. I want to see my daughters grow up. I have to stop.

I think it is pretty reasonable for me to be scared right now. I don't know what the next step is. I need to be able to talk to a doctor about this. I need to try something else. This is something where I really don't know what to do. I have tried so many things over my lifetime.

And there's the weird pulsing thing that feels vaguely like trapped intestine in between the walls of my stomach muscles. That kind of shit sometimes happens after pregnancy. But I don't know what has been going on with that. Since I stopped marathon training the pain has gone dow dramatically hich makes me want to JUST NOT MENTION IT. SEE–IT'S FINE. Now it's genuinely in the 1-2 range for pain. It hasn't spiked up to 5 since October. Obviously I healed myself. It's fine. I can ignore it, right?

I'm not sure how to write this script for a doctor. I think of these problems in context of my life. But if I tell people about my life they respond with, "that is unbelievable" and there we are.

I tell Shanna that my problem is that a long time ago I had good reasons to be scared and my body has never managed to really understand that I don't need to feel scared any more. Something in my brain broke and that feeling just keeps happening even though it should stop.

I don't know how to make my stomach stop hurting. I don't know how to be able to jus eat food ithout thinking the whole time about how much pain I will be in when I have to shit it out.

Having children has been the best thing that has ever happened to me in terms of food. I don't have crap in the house because I don't want them to eat it. Well, we eat ramen a few times a week becaus like always hat is one of the primary things I can handle eating without pain. Yay simple carbs. When I am really really anxious it is one of the only things that doesn't cause violent stomach cramps.

Doesn't everyone spend all day every day fighting with how much pain they are in because they were stupid enough to eat vegetables?

Eating vegetables hurt as a child. So I wouldn't eat them. So people hit me and told me I was bad. And ungrateful. Let's not forget ungrateful. I am ungrateful stupid bitch because I won't eat what someone has made for me. Even though it will cause violent stomach cramps and horrible burning diarrhea. stupid stupid stupid bitch.

When people tell me to just "get over" my childhood I don't even know what that means. Should I have a lobotomy? Should I surgically cut out all of these memories? There will still be all the damage to my body. I don't know how to undo it.

I feel so scared.

(This started over here so it will be cross posted.)

I was asked a question! I

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"Triaging you mental health? That sounds really useful; I'd love to know more about this process if you're willing to share!"

tri·age

/trēˈäZH/
Noun
The action of sorting according to quality.
Verb
Assign degrees of urgency to (wounded or ill patients).

I are fucked up. If you want to know why, now there is a book!  I'm pretty excited about that. 🙂 The whole being able to post a link thing. Anyway.

Ok, not all of my fucked up is in the book. I have other stuff too. Lots of stuff. Sometimes I feel like I am drowning.

I'm not very good at talking to doctors. I have had a very high number of extremely negative experience with doctors. When you're starting off by being institutionalized and strapped to a table it's hard to not go downhill.  I went to a gynecologist once, asking her about extreme pain in my vagina and lack of libido. She told me to just think of something else because it didn't matter how it felt to me I was only doing it for the man anyway, right? I have had doctors refuse to treat my stomach until I get on psych medication. I have a lot of stories. I don't like doctors.

 Sometimes whether I like it or not I need help with my body. I try to get by without seeing doctors but there are things that I need them in order to accomplish. I want my arms to stop hurting. I understand that this is self-imposed damage; the problem is I really don't understand how to undo it or how to stop doing more. I require help. I need to sleep; without sleep my crazy is totally unmanageable. I've been having pain in my abdomen since Calli was born. the problem is that as more of a phantom pain. It will be hard to figure out what's going on there. It will take somebody trusting that I understand why this feels weird for my body; finding a doctor who will respect what I have to say about my body has been a pretty impossible task so far in life. I have been getting terrible headaches for a long while. I knew my vision had degraded. My eyes are working too hard. I have a lot of ambient stress in my life. I've had some really nasty bacterial infections that only got treatment because friends came to my house and dragged me to the ER. I don't seek medical care unless I feel like have no choice. Usually because I think there is a chance of something killing me or a bone is broken. 

When I decide to take the step of involving a doctor it's a big one. I need people to pressure me to go. I spend my life with the default expectation that I should be in pain. That is just life. I have been depressed for most of my life. It just makes everything hurt more. Keeping going when it hurts that bad feeds my masochism. Of course it is supposed to be this hard for me I'm a fucking loser.

Somehow I always keep walking. I get slower. I drop balls. I bring my focus of life in closer and exclude more and more people. But I always get up every day and am productive. 

So if I want to make a change in my body that is not about immediate death or injury or bleeding… it's kind of complicated The very action of scheduling an appointment and then knowing it is coming up aises my stress level throughout every level of my life. Everything is harder when I have the horrifying impending visit with yet another person who may dismiss me and refuse to help me because I am a fucking loser who doesn't deserve help. I dont really need more confirmation of how unworthy I am.

My abdominal pain is going to be hard to track down. It could be. I don't know. I thought about scripts of how to introduce the problem and I couldn't figure out how to word it for a stranger I don't trust. I can explain it to someone I trust. I can't say it to someone who is going to be nasty to me. I jus can't.

Walking in and saying, "I'm a writer. I hurt my arms." is one of those things wher they just believe you and then start treating you as a writer who is someone of status. quot;Oh what do you write? Do you write professionally?" 

A murky conversation revealed that getting paid for writing does make you a writer. I'm just starting in the transition after being a teacher and now I am a stay at home mom so things aren't instant. I told him I was just a blogger. He corrected me and said I published a book–which people bought thus I am a professional writer.

I like the doctor. 

When I say I need to triage I mean I need to rehearse and rehearse and rehearse scripts in my head for how I will present data to a doctor in order to get what I want. If I can't come up with a good script I just can't visit that issue on a given day. I just can't. I have to perfect the script or I can't talk about it. So I try on a whole bunch of different ways of presenting information.

This time I focused on what would bring me the most instant benefit and the easiest available scripts for building trust. My abdomen is hard for me to talk about. I'm very serious about wanting to not damage my arms. I will gosh darn be proactive about that. I have friends who are in really bad places. I'm scared. Obviously there is information I need to learn in order to not seriously hurt myself. Ok. I can take that seriously.

And I feel like I have taken too much over the counter sleep aid in my lifetime. I need to stop. So I rehearsed how I wanted this problem approached.

I am not a long term insomniac. Since having children I have become an early waker. I'm aware that is a common depression symptom. I deal with atypical depression. Medicating it in the standard ways do not work. I have PTSD. It causes a lot of problems for me but they tend to happen around anniversaries and milestones and holidays. In the scheme of my life they are kind of brief. 

My problem is when I get one night of sleep disruption it starts a cycle. If I let it go I can end up being seriously sleep deprived and it can go on and on for weeks. I've been using the over the counter stuff to stop it at about a week. I want to change my approach.

I asked for something that would be safe to take every three or so days if needed. In general I hope I won't be taking it that often. I will be taking it as soon as I get home from therapy on Tuesdays because that night of lost sleep is a particularly rough one. I slept about six hours last night with .5 mg of Lorazepam. Usually Tuesdays are nights when I get two or three hours of sleep. That's a big step in the right direction. I can't take the over the counter stuff in the same way because I am too groggy the day after. I get home too late at night and I would spend all of Wednesday a zombie; I have to take over the counter stuff by 8pm or it is just a bad plan. I don't get that with the Lorazepam. I have used it in the past for anxiety. I am far less groggy than with over the counter meds.

So the triage process was realizing that I really need to treat my stomach issues, but that will require trust. So I need to go build a relationship. Which means I need to be honest about some of my other sub optimal body issues and kind of pick from the list. My arms aren't something that I experience shame talking about. It's a common, straight forward issue. I knew I could start there and have that be probably taken well.

I was scared about sleep. I probably wouldn't have brought it up only I know I have to stop taking so many over the counter sleep aids. I'm going to die in a car accident driving the next day. Seriously. They just aren't great for my body.

I have to have sleep or I can't manage the stress of my life. Right now my life isn't very stressful. I have a pretty easy life all things considered. But I still can't function without sleep. Sometimes I can't get myself to sleep. I understand my cycles. I've been living in them a long time. I've done hundreds, maybe thousands of hours of reading about my set of issues. I understand how my atypical depression/anxiety/ptsd bounce around. I can describe the process. I can point at dates on the calendar when I will have bad spells. Inevitable as the sun rising.

Figuring out how to explain it was hard. I worked on that script really hard. I am so ridiculously grateful it went well. 

I expected him to send me home with 5-10 pills and instructions to email him and ask for a refill. Instead he gave me 30 pills with three refills. I feel kind of overwhelmed because he asked me point blank questions and I told him that I overdosed on sleeping pills as a teenager so pills are kind of weird for me. I can't swallow larger ones very well–I have a really overactive gag reflex. I don't take pain meds like ibuprofen because I can't deal with swallowing the pills. I barely manage sleeping pills. Those suckers are blessedly tiny. And half a Lorazepam I can't even feel. It's great. 

I will be able to make an appointment to talk about my abdomen. And I'll find other things. But I'm going to wait until after the glasses arrive because I want to see how much difference in general pain the headaches are. I feel like right now I don't have a concise and clear enough case. I will. I'm working on it. I will go to PT and talk about posture and all kinds of aches and pains and ask for advice. I'm going to bloody well take advantage of having this access. I'll be user. Then I will ask for help with my abdomen.

That is what I can handle dealing with right now. If I try to do this faster than I am ready for then I will experience a general uptick in anger and frustration and I will take it out on my kids. That's not acceptable. It is not acceptable to raise my stress level beyond what I can handle while being nice to my kids. That's the line. 

The triage process is slowly increasing how much I think about a given problem until I figure out how to solve it while carefully watching how I behave with the kids. If I start slipping I know I need to distract myself and stop trying to solve the problem for a while.

I need to settle in to this level of progress. Find out what it feels like. See what it does for me. Then think about more change.

Baby steps.

Holy crap am I glad to be back with Kaiser.

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That went so well. The optometrist remembered me from 3.5 years ago (he asked me how teaching was going and how my daughter was–that's not a level of being remembered I expected) and I was right about my eyes going downhill. My degree of vision issue has doubled. Totally time for new glasses and explains the blinding headaches.

The primary care doctor was quiet and kind of distant at first but then he mirrored what I said, validated my experiences, trusted what I had to say and gave me exactly the plan of treatment I went in there requesting. He commented that I am obviously extremely educated about my body and my needs and he thinks I am making good decisions about the next few steps.

That feels good. So three hours and $700 later I have new glasses, sunglasses, sleeping pills and a scrip for physical therapy. That's what I wanted. Excellent.

I will be willing to go back and talk about my stomach. I triaged my mental health and decided I wasn't up for fighting a potentially hostile stranger about something that feels harder to pinpoint. I am very clear about where I am with my depression/anxiety/ptsd/sleep and my arms. Those are clear cut for me. The stomach stuff is murkier and will require more trust. I feel like the first step was made. I feel really grateful.