Category Archives: body stuff

Report is in.

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Final diagnosis of the original biopsy:

Malignant melanoma, superficial spreading type, invasive to level II and a measured thickness of 0.5mm arising in association with a compound nevus, margins free but close.

Final comment:

This lesion is indeed a fully evolved malignant melanoma, superficial spreading type, invasive multifocally to 0.5mm. The radical growth phase is composed of prominent melanoma cells both spindle and epithelioid. They are present in very large nests and show focal pagetold spread. There is evidence of a pre-existing nevus at the site. There is no evidence of regression, ulceration or mitoses. Re-excision is recommended with a 1.0cm margin. SOX-10 and HMB45 support the above interpretation.

Positive and negative controls for all immunohistochemical stains and/or special stains prepared by the outside laboratory were reviewed, and they are considered appropriate.

From the NHS website:

Around 7 out of 10 (70%) of all melanomas in the UK are superficial spreading melanomas.

They’re more common in people with pale skin and freckles, and much less common in darker skinned people.

They initially tend to grow outwards rather than downwards, so do not pose a problem.

But if they grow downwards into the deeper layers of skin, they can spread to other parts of the body.

From Melanoma International:

Here is an explanation of terms that may appear in your pathology report:

  1. Type: description of the particular variety of melanoma you have—superficial spreading melanoma, lentigo maligna melanoma, nodular melanoma, and so on. The superficial spreading type is the most common.
  2. Growth phase: designation that shows whether the melanoma has reached the step where it can grow as a lump below the epidermis. In the radial growth phase, as we have seen, it is unlikely that the cancer has begun to metastasize. With the vertical growth phase, there is at least some chance that the disease has spread elsewhere in the body.
  3. Mitotic count or mitosis: measure of how many melanoma cells are dividing below the epidermis. Only in the vertical growth phase do cells divide in the dermis. The higher the mitotic count, the more likely the tumor is to have spread.
  4. Tumor-infiltrating lymphocytes: immune system cells (lymphocytes) whose presence in the vertical growth phase are a positive sign. Presumably, lymphocytes show that the immune system has recognized the tumor and is attacking it.
  5. Greatest thickness: the Breslow thickness. A measurement of a millimeter or less is considered thin—and means a favorable prognosis.
  6. Site: location of the melanoma. Patients with a vertical growth phase melanoma located on an extremity have a relatively more favorable prognosis than those on the trunk or head and neck (a subtlety is that a rare subtype of melanoma that, unless the lesion appears on the palms, on the soles of the feet, or under the nails acts like trunk lesions).
  7. Sex: gender of the melanoma patient. For unexplained reasons, women have a better prognosis than men.
  8. Regression: An attribute that may be either absent or present in the radial growth phase (which is adjacent to the vertical growth phase). Regression is evidence of destruction (probably by immune factors) of some of the melanoma cells in the radial growth phase. Immunologically mediated regression of this sort is a weakly negative factor.
  9. Level of Invasion: the Clark level. Mine was a level IV tumor—that is, the melanoma had penetrated to just above the fatty layer of the skin.
  10. Precursor Lesion: Evidence of a pre-existing ordinary, dysplastic, or congenital mole from which the melanoma might have developed. My melanoma came from a dysplastic nevus. Although dysplastic nevi are the most common precursors, common moles and congenital moles may also be culprits. For many melanomas no evidence of a precursor shows up.

So what I’m getting is that I definitely need to have a larger chunk of skin removed, but it probably didn’t get very deep or spread to other areas.

Thank you, Noah for telling me I had to check this out.

Like Ursula I am wasting away

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I have lost a solid 10 lbs since I left California. I am eating cake when I want it, candy bars, daily massive quantities of tea with 3 teaspoons of sugar in every cup. I am not on a diet. But even with days that I barely move from exhaustion I am up to averaging 4.5 miles/day. As my tolerance builds that average will go up and I will have fewer collapsed from exhaustion days. I am working on meeting the neighbors. I have now met a few houses down the road (no one up the hill yet) and I have chatted with several of the folks who walk past our house for exercise or to commute.

I got to the school super early yesterday and talked to several parents/grandparents. “Hi I’m Krissy and I’m new here.” It’s like old times. Only now I follow up with, “What should a new person know about this community?” I am getting some fascinating answers I won’t write down because if people find my blog and see themselves quoted it could go sideways. But the answers are great.

The general consensus is that yes I should get a dog if I want to do a lot of exercise on my own because no it would not go well if I defended myself like I would in California. But a dog is allowed to attack someone on my behalf. Social mores, yo. I am happy that I was reading that right. I am a bit freaked out that it is true. I will be getting a dog. But first: cats. I want the dog to come into a house with cats so that the dog adjusts to this being the norm. Which means we should get cats soon. Our house is going to be pretty insane for a while as all of the humans and felines and canines adjust to one another. I am going to need to spend a fair bit of time at home helping everyone learn appropriate behavior. Everyone involved will need to understand that I am the alpha. Mama sure wears the pants in this family. I wear them under my skirts.  (Noah gets to wear pants too. Trousers as well!)

Noah is working on meeting people for his purposes as well. He is less focused on neighbors and more focused on computer nerds far flung around the country. The kids are having a great time meeting kids at school. One of ECs new buddies suggested that if we (ECs parents) are willing to pay for the airline tickets that EC could go to Spain with them for school holidays. I declined that gracious offer. But I think the kids are sliding into place at school just fine. My kids are really unhappy that there will be two weeks off of school after this Friday. They want to be in school. It’s hilarious and wonderful.

I am diligently working on getting the recycling out of the house now that I know where I can walk it to. I would like the back log of recycling to dwindle before the boat stuff arrives because then I am going to be swimming in a sea of cardboard. I will be advertising that lot on freecycle because they are all lovely standard sizes and super sturdy.

I think we will use the school holidays to start seeing about getting cats. And to practice bike riding. And to rest and read books. Excellent. For once I am not sad at all about the Christmas creep. Given that we want to go slowly with our budget we bought four pieces of garland and two strings of lights yesterday. We have a huge house and no decorations. It will be fun to have stuff trickle in. Time to eat.

Well this sucks; ok not everything sucks

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We were just about over jet lag. Then illness strikes. Her Sweetness has a fever and she is super cranky; I assume she is in pain too. Eldest Child is having intestinal problems. I have full body pain (as someone with chronic pain this is enough pain to make me want to sit very still in a chair and cry–I am medicating for pain with tylenol and ibuprofen alternated), a low grade fever, and I am producing a river of snot with the associated coughing, sneezing, and sore throat. If you have followed me for long you know it has to get BAD before I medicate with these drugs because I am so afraid of my tolerance level going up.

I don’t think we will see much of Bangkok and I am very disappointed.

The food has tasted great. The garbage is omnipresent and overwhelming. The traffic patterns are reminding me of Kuala Lumpur only they are very different? It’s closer to KL than Japanese traffic patterns. The gridlock is massive. I can understand why the advice around driving here is don’t.

We are right next to RCA (Royal City Avenue) which is the designated clubbing/entertainment/tourist area. It’s a short walk down a relatively safe stretch of sidewalk. Relatively safe because the motorcycle taxi service has a stand in front of our building so they have to go back and forth on that stretch of sidewalk. If you pay attention and get out of their way it’s ok. And all the motorcycle drivers love Her Sweetness. They want to cuddle and hang out with her.

Her Sweetness is my most reserved child. I used to think Middle Child was incredibly reserved because I compared them to Eldest Child. Holy sauce buckets was I underestimating the amount of reserve a child of my blood can display. When people try to touch HS she cries. She wants her people and that’s it.

I am going to have to stagger downstairs and do laundry today because I am about out of hankies. Dude. I travel with more than a dozen hankies. Hankies are life. (We also have a full laundry basket. But the hankies will be the motivation.)

I was a serious bitch yesterday and I feel kind of embarrassed. I am sick and the kids were pushing me for attention and to do work for them. I blew up about how unfair it is that when they are sick I let them lie still and do nothing until they feel like doing things and I am not allowed any rest. I sort of feel like I “should” have found a nicer way to express this. But I tried a variety of “I’m not feeling well” and “I can’t do that” before I started getting harsh. There is this complicated balancing act where I try to be as nice as I can be to them until they just refuse to recognize that I have boundaries too and then I’m really not so nice. Because fuck that. I get to have rest when I am fucking sick and you can go in your room and play and stop bothering me. No I don’t have to pay attention to you today. You can bloody well cope with me taking care of myself today.

It’s weird. I feel guilty and proud of myself? I need to set these boundaries. I set them as softly as I could. I escalated ,when they completely refused to allow me boundaries, to being more forceful in my language. I did use the word fuck a lot. “I am fucking sick and I need to fucking rest. You don’t fucking need me to play with you. You can fucking play by yourself.” That was after a couple of hours of using soft language and having MC continue to head butt me and be rude and demanding and aggressive about wanting to play.

MC has asked me to use the word fuck less and I’ve been doing pretty well so this flood of fuck-fuck-fuck-fuck was definitely a sign of degrading ability to communicate. But I feel like my head is in a vice and if you don’t leave me alone and stop talking to me I am going to literally melt down and start screaming which would really suck in this tiny apartment. I have limits. I don’t talk to you like this even once a year. But I am sick and I need to be left alone to take care of me.

My kids genuinely think I am a river of love and support and work and they can’t understand when I can’t do that. It’s a weird dynamic. I feel both good and bad about it. I am not sure I am presenting them with a healthy, balanced view of what parents should be like. My mother under-responded and neglected me. So I half kill myself doing the martyr schtick so they never know a minute of boredom or want. I am hurting myself so they never have to be bored. That’s not healthy either.

I really can’t wait to have my own bedroom and for them to go to school. We need to start separating. I feel like a mother bird who is exerting more and more pressure to get the baby birds to get the fork out of the nest. I need some space, kiddos. I love you. I need some space for me too. I matter too. I am not the most important person in our family but I am not the least important person either. We need balance. If we sacrifice my health on the altar of “Happy Family” then this family is going to fall apart soon. I have to be healthy enough to carry my side of things.

I suspect this is related to just how hard I pushed my body over the past few months culminating in the last week. I have done a lot of work. We leave Bangkok on the 9th and we arrive on the 10th because it is another 30 hour travel day with getting to and from airports. Today is the 5th. So close yet so far.

The former owner of the house and Jenny’s Super Spiffy Husband (JSSH) both sent us long explanations of how to set up utilities and services. We are so incredibly lucky that we are following Jenny. She has helped in ways big and small that blow my mind. I feel like we are sliding into Scotland on greased rails. This could have been a nightmare. Instead it is a series of steps. Yes, we feel tension and stress as we go through the steps because lots of things are out of our control… but things are actually going as fast as they possibly could. We made the decision to move to Scotland, got absolutely everything done, and now we are returning in less than three months. That is miraculous in terms of government bureaucracy. Greased. Forkin. Rails.

And once we arrive… we have no deadlines to hurry up and get anything done. There are no foreseeable sprints in my future. We don’t need to hurry up and get anything done. We need to get things done as quickly as we get them done. I mean, utilities getting set up might be the most “Uhhh do that now” step. But furniture and cookware and all that stuff can trickle in. We will probably go shopping on the 11th to get some things, but not a lot. Realistically we will go to the store every day for a while and we will get what we get. Sometime in the first week we will probably hire a van and clean out the charity shop of anything we can use and do a massive grocery shop but it’s not a big rush. If it happens on our second day or our fourth day or the seventh day… whatever. We are right between three stores that are all dandy for supplying us with food we can eat without stress. I’m just not worried. It’s a lovely feeling. I will slowly acquire the things we need to keep house. Drips and drabs. It will be easier to do most of this shopping after the shipment of our belongings arrive so I have the big double stroller.

I got a double bike trailer that can be used as a stroller so that I can pull the baby AND groceries. This is my compromise on not having a car. I am already aware of how awesome Tesco’s delivery service is (THANK YOU JSSH!) but I really like going to the store. And I want to experiment between Tesco and Aldi and Asda. I will get a little notebook for comparing prices. We are going to be trying to be that tight with our budget.

I’m not sure if I told y’all this. Noah’s current obscene California salary is going to last till January. Then he’s going to work on books, teaching, and maybe a wee bit of contracting on the side. We have enough money in petty cash for 2-3 years of run time if we are very conservative and we hope we can figure out him working for himself. This is part of why we decided Taipei is not wise at the moment. If we are trying to live on £40,000/year all of a sudden spending $6000 on a trip to Taipei seems… uhhh not in the budget.

I have lived on much less. While snowballing our debt we lived on a similar amount of money at the beginning of our marriage. We will see!

On the money front: I was watching a session of Scottish Parliament yesterday and there was a lot of hand wringing over how they can’t get enough people to work with mental health care for children. The waiting lists are long and they are incredibly stressed out about it. Do you know what I have a unique background on? Helping kids with mental health problems. Sure, I’ll have to hit up the local university for some specific training and degree hoop jumping but that doesn’t scare me. Maybe when Her Sweetness starts nursery in a year and a half we will have four people in school in the house. That would be kind of cool.

I would like to have a job. I would like to have a job specifically because I dream of a conservatory added to the house and if I don’t figure out how to earn the money for it myself Noah will feel like he needs to get a remote job from California for ridiculous money and then he will work 60 hours a week and I will be very sad.

I don’t need to earn the money in the first couple of years. In my head I wouldn’t be ready to start that kind of project for at least 3-5 years. That gives me time to go to school and get started in the field. I will be 100% hiring out the work and the former owner gave me the name of the person who could probably build it for me because he did all the other remodeling in the house.

This is not abandoning the idea of IDB (Incest Database) but it is helping to keep me busy until then and helps me gain qualifications that will help with the research and it helps pay for retirement stuff so Noah doesn’t have to supply 100% of our retirement safety on his own. I still think I couldn’t really get going on IDB for almost 20 years. Not the way I want to. 20 years is a long time and I could do a lot of valuable work between now and then.

I want to be part of the community. This would be a really great way for me to meet people and find a place for myself.

I don’t have a plan yet. I am not rushing. I am waiting to see how things shake out. I am coming up with ideas, potentials, hopes, and dreams.

And nothing is in a big rush. No sprints. Settle in slowly. Exercise. Establish house. Help the kids adjust to school. Wait for HS to be old enough for nursery. Enjoy the next year and a half of extra alone time with my precious last baby. I feel lucky and blessed.

I won’t be doing much today. Noah has a speakers dinner tonight. We have instant noodles in the apartment that will probably be most of our food while he is doing his conference. I should go down to the 7-11 (holy shit these things are ubiquitous internationally) and get some yogurt and juice and maybe other snacky foods. Maybe I’ll do that run while I’m dealing with laundry.

I feel so bad. I did more yesterday than I probably should have. Today I can’t. As I plan to go to the laundromat and do grocery shopping. I am such a twit.

These things have to get done. It’s not optional. Being the mom is not always fun. But it is always worth it. I did not have children because I wanted convenience. I am so very loved. It’s worth it.

Even if sometimes I have to say fuck fuck fuck fuck to be allowed to rest.

I think it is kind of useful that EC is reading these Warriors books because the mama cats take no shit and that is causing her to change how she views me. It’s hilarious.

I have been dizzy on and off for days. My body is so unhappy. Her Sweetness is waking up every two hours to nurse and I don’t feel like it is fair to complain given how sick she is.

Miss Jenny picked up our keys. The solicitor has been paid off. We have a home to go back to. A home that pretty closely matches drawings I’ve been making about my dream home for years. I am so lucky.

We are going to be highlanders! We start this next phase of our lives on the day I turn 38. Seems like a good time for a rebirth.

Golly. So much.

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Noah is driving up to San Francisco to pick up our passports and hopefully our visas. My stomach is going to hurt for the next hour until he tells me the results. My stomach hurt so much from anxiety last night that I vomited.

My body sucks.

I’m probably only 95% packed, but we are tossing everything in the car so it feels less important to be at 100%? Also: my family has learned how to pack! I don’t have to pack for everyone anymore! THAT’S SO COOL! Of course they finally figure it all out when we have less than three weeks of travel left. It’s ok. They will take these skills forward in life and I will feel good about myself.

30 minutes till Noah calls me with results. I feel like I may puke between now and then again. Ugh.

And the book is gone.

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I seem to have lost the poop book. Given that I’m on day 12 of solid poop and I had gluten last night… I may be just stopping. I got up to day 66 or 67.

I think that having to lawyer up just made it so that the elimination diet is too many spoons. It seems to be over for a while and I don’t have any physical or emotional ability to pursue it right now. Just… no. I am going to be completely flipping out and all of a sudden my anxiety will be spiked so high I won’t have “true” responses anyway.

Near as I can tell the main thing I did to make my body happy was fast. Next time I have multiple days of diarrhea that may play in to how I handle it. I’m also going to play fast and loose (ha-ha-ha) with anti-diarrheals now that I’ve read a bunch of books on IBS. From what I read you can pretty much live on the stuff and it isn’t a big deal.

Illness and packing and life oh my.

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This is a sick house. Which means so much laundry I am losing my marbles. The tiny washing machine can wash a twin sheet + a twin comforter cover or a twin sheet + 2 towels. Or about a day of everyone’s clothing at a time. This means I am doing 2-3 loads every day right now. Each load takes about 5 hours. But when folks are having to wash bedding nearly every day + going through a week of bottoms in a day… it adds up fast.

I am trying to feel gratitude that my kids got sick like this with over a week to go before we left. Now we are at 6 days to go until we fly and I am biting my nails with worry. Oh, and I’m on day 28 of my cycle. Cheers. Just waiting until my malaise turns into bleeding. Just my luck that is when I will get my turn to start vomiting with terrible diarrhea at the same time. Two thumbs up, would bitch about again.

My kids are trying to maintain a positive attitude, but feeling like this sucks. We haven’t had a proper fall-like-dominoes illness in a very long time so I guess we were due. I think one way or another we are traveling with breathing masks on so we don’t infect other people. Ugh. ALL THE HAND SANITIZER (in addition to washing our hands hourly). I am hoping Her Sweetness misses the worst of it. But I ordered carpet cleaner from Tesco because she had a diaper leak because she’s not in a perfect place right now in terms of her functions. I think this is her first poop diaper leak… maybe ever? My older kids had them but she’s been so normal and regulated it just hasn’t been an issue. Illness sucks.

I caught up on ancient emails from my inbox. I’m down to 10 emails and the oldest one is from May. Huzzah! I feel embarrassed about how far behind I get, but that’s life.

I am so glad I mostly packed stuff up already. I feel like a wound down clock. I’m still ticking but its coming slower and slower. Being sick sucks. I don’t have a fever, but I’m weary and depleted. At this moment our household stuff bag is around 40 lbs (a little bit more will go in here, like the laundry basket) and I think it will absolutely max out at 45 lbs. Maybe even more like 42 lbs. My personal checked bag is 33 lbs and I only have a little left, I think it will be around 35/36 lbs. Noah’s bag is sitting at 33ish lbs too. Eldest Child’s bag is about 25 lbs. Middle Child’s first carry on bag is under 20 lbs. Her Sweetness’ carry on suitcase is under 20 lbs. Noah’s backpack is greatly reduced in weight/objects but I haven’t checked it yet. I suspect it is going to be in the 15 lb range. My back pack is still going to be annoyingly close to 20 lbs (I have all the kid electronics). Middle Child’s rolling backpack is practically empty, it weighs under 5 lbs. Eldest Child is just carrying a purse onto the plane. I am shoving my purse in Middle Child’s backpack for the sake of not carrying anything more than necessary in my hands. And we have a stuffed diaper bag.

THAT’S SO MUCH LESS STUFF. Thank you for the loan of your garage, Jenny. This will be so much easier. Also: we will have room to get some stuff in the States where prices are lower. Yayyyyy. Such as: the thigh seam in my long johns gave up on me last week. I have been wearing them for like three years almost constantly. We picked up some Keen walking/waterproof sandals through the REI sale because walking in Bangkok in monsoon season is going to be festive. (My leather sandals hurt like a motherfucker in the wet.) I should probably leave them here to wear on the handful of days when they will work out. Ok, maybe I’m going to find another backpack worth of stuff to leave. I am trying as hard as I can go lighten the load. Every ounce counts, yo. 3.5 months of maxing out the weight limits has gotten stressful. Now I will KNOW that I don’t have to spend time frantically crying trying to rearrange where everything goes. I have space. I have 10-20 lbs of space left in a bunch of bags. That’s so easy!

I am happy that I have a waterproof heavier coat, and a warm baby-wearing coat in storage for when we come back. We have a coat that will probably be inherited by Middle Child by then in terms of size. Noah has a mid-weight coat that is not at all good for rain.

Eldest Child, Her Sweetness and I already have lightweight rain coats that are coming with us to monsoon season.

I think we need to acquire: a proper set of rain gear for Noah and Middle Child that is lightweight for the heat. Noah could use a jacket that is a bit heavier that will keep rain off him, but Inverness rarely drops below freezing so he isn’t going to need a super heavy coat almost ever. He’s just not the sort. We will need a slightly heavier water proof coat for Eldest Child for when she comes back. Long johns for everyone except for Her Sweetness? Luckily we have gotten/will get so many more hand me downs from our little cousin that Her Sweetness will mostly be set. I don’t think that will remain an option long term because my children are huge and Jenny’s children are fairly petite. But she hasn’t quite passed up the little cousin yet.

I might look for a pair of serious rain boots in Portland. I suspect my children should wait and get them after we see what size they are come next winter here. When I can talk Noah into wearing shoes at all it is a victory so he will probably not get real boots for walking in the rain. He just likes to leave me things to worry about. He’s kind like that.

I am sorta hoping that buying things off season means I’ll find some deals. *Cross fingers*

A bit less than 7 months until we move into our next forever home. Will this one actually last forever? I don’t know. Jenny is already talking about moving away for retirement. Maybe I’ll have to follow her again. But this is going to be decades of peace and security.

I’m tired. I’m going to go lay down again.

 

Coming to California

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I have already scheduled appointments with: dentist for Noah and me, chiropractor, haircuts for all four of us, and pediatrician for all three kids. I have emailed and am waiting for responses from the pediatric dentist.

I have requested medical records from everybody and I’ll be picking them up all over the bay.

Check all the boxes.

I need to message massage therapist too, but I’m waiting until some other stuff falls into place first.

We need to find out what day we need to go to San Francisco to start the visa application process. Apparently we must do it inside our home country and that means we have to do it in August. Then we will bebop over to the UK in between Bangkok and Taipei to process documents. We won’t land in our permanent home until January.

Things shift, yo.

Seems wise to do all the basic maintenance stuff in the US with our old providers so that we have a runway of not needing any services for a while as we figure out a GP and all the other providers here.

And more logistics are incoming. Woof.

PT

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I did it. I haven’t done the dilation yet. It takes privacy. I should have done it in the bath tub but frankly I am feeling overwhelmed with all the “must do” stuff. I made seven phone calls today. Only four of them turned out to be useful. (Two important confirmations; two appointments with solicitors.)

I feel on the verge of tears. I go through cycles of dealing with my feelings around disability. But the plain truth is I have been in pain for almost 30 years. I need to give zero fucks what anyone else thinks about how I live with that. But I’m not there. I feel ashamed. I feel like I am stupid and pathetic and I should shut up and just work harder.

But I would be this degraded if I had stopped working harder years ago.

It’s a Catch 22.

When Her Sweetness wakes up we will walk over to Jenny’s. I will put one, maybe two plants in the ground because that makes my soul feel better. I will decide after the first one how my arms feel. Middle Child will get to play with his cousins. We will get in our daily walk going one way and we will take a taxi back. We shouldn’t stay very many hours. Tomorrow will be an incredibly long day going to Aberdeen to meet a solicitor. But, this is the process.

Do it.

Rough morning.

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Go to sleep crying, wake up crying. Why not.

Noah wanted me to listen to a chapter of this Buddhist book he gets a lot of value from. The point (very roughly) is that pain and discomfort are lessons and you shouldn’t hide from them you should face them.

But I can’t really get over hearing this from the point of view of being a person who has degenerative, chronic health problems. If I spend all of my time thinking about how much pain I am in I am going to spend my life walking around weeping. And then I am very unpleasant and uncomfortable to be around and people won’t like me very much. I made breakfast pretty shitty because I couldn’t stop crying.

Noah is very much looking forward to retirement. It will mean that he no longer has to do boring work for a pay check and he can instead do fun work for free. He can help people who cannot afford to pay him.

I am looking forward to decades of decreasing ability where I can do less and less of tasks that are basic to keeping me alive and I definitely can’t do any fun extra work because it will hurt my body and decrease my longevity.

I would kill a dog who was in as much pain as I am in. It would be cruel to keep them alive to suffer.

But I need to do everything possible to extend my life. Which means I need to do less work that gives me any pride in myself. I need to do less work that has any physical cost. My coach person was going through lists of things including moving wet laundry from the washer to the dryer and talking about how I need to weigh these costs and think about whether it is worth decreasing my long-term functionality so I really just shouldn’t do any of these things.

But I should spend a lot more time being fully present with how much pain I am. Watching stupid tv to pass time and distract myself from crying… somehow makes me a lesser person. I’m on a full on self-pity trip today, lemme tell you.

I am on palliative care until I die. Most people don’t enter palliative care until they have a few months to live. I am supposed to be doing everything I can to turn this into 30 or 40 or 50 years of life.

Because I owe my family that.

My buddy is right that it’s pretty stupid for us to look at big pretty houses with room for enormous gardens and lots of space to pick up and tidy and clean.

That will shorten my life.

When we have a house I do need to immediately hire help. Or I will shorten my life.

She asked me how many years I think I have left at this functionality. I don’t know. I am in a much worse place than I was 10 years ago. I already demur a lot of activities. I need to spend less time with Jenny than I have so far because it wears me out.

Not because she is bad. I really love her and I’m glad I’m here. I’m glad I will get to spend my declining years getting as much of her company as I can physically handle. But the amount I can handle is lower than what I’ve been doing. My pain levels are absolutely through the roof right now.

And I feel ashamed. I feel stupid. I feel bad. I feel useless. I feel like I can’t do anything right. I am supposed to work and I am supposed to not work. I am supposed to do things that make me feel good about myself and I am not supposed to waste spoons.

When we go to Portland I can’t bebop around spending lots of time with everyone I love. I need to see people once or twice a week and that’s it. Especially for the first three weeks when I am alone with the kids and I have to do all the grown up work. I don’t have anything left over to give to friends and that hurts.

Yeah, I need to do the PT exercises more religiously so I preserve what strength I have left. But there is no more regaining of strength. I’m not really ever going to improve. I’m just trying to slow the rate of decline.

I am feeling incredibly bad about myself today. What is the point of spending this much money on help and being this idle so that I can extend my life?

I would kill a dog who was in this much pain.

PT

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I did most of the non TRX stuff yesterday and all the TRX stuff today. I punted a little on the inverted row with knees bent. I did one rep instead of three. It was my last one and I haven’t done these exercises in months.

I am so fucking tired.

But my joints feel slightly less locked than they did when I first got started. I know I need to do this. It hurts. It is hard.

But. I did it. The only PT exercise I haven’t done at all yet is dilation. I will try to do it in the morning. I’m only going to do that one every three days. It’s really emotionally hard.

I do want to live as long as I can to stay with my family. I know I have to do this.

Let me find my crystal ball.

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“How long do you think you have at the current level of physical function, and are you taking that into account as you look at the next x years of your life. That house seems to have a lot of steps, for example. Besides getting more rest because you consciously rest, are you thinking about how your environment impacts you in the long term? For example- in our new house we put a 3/4 bath on the main level, and planned a path to retrofit an elevator if necessary in the future. The doorways were planned to be wheelchair friendly on the main level. We’ve had enough short- medium term health things that have required avoiding stairs to know how important that is. Are you planning for the house to help you be in less pain?”

This is a hard one. I have absolutely no way of predicting when my body is going to fail. But yes, I need to be planning around a ground floor bedroom for me even if everyone else is up stairs. No doctors have been able to give me a timeline on my failing body. Frankly mostly they express shock that I am still moving.

I’m not planning around this how I should be.

I need to be honest that the reason I can handle coping with this apartment only being cleaned to the level the kids and Noah want to clean it is because it is half the space we are used to and we are leaving soon so the corners of muck aren’t my problem.

I am way past the point where some rest is going to restore my vitality. My vitality is gone. I am playing a losing game until I die. But will that be a fast five years or thirty years of a slow but steady decline? Will I last fifty years?

I don’t know. I know that my great grandmother was considered too mean to die. I like to think I will live long enough to be a torment to my grand children. I’ll be the grandmother who says no and means it. Ha.

I’m actually finding this upsetting to think about. I don’t know how long I will have this level of functionality. I know that keeping as much movement as possible in my day to day life will increase how long I keep this level of function. Any movement in the direction of being sedentary causes me problems. The more I sit the more I hurt. Stairs are a mixed bag but walking upwards of three miles a day really helps. My hips hurt, but they hurt more when they are locked.

I’m really sad thinking about the ticking time bomb of my body.

I travel like I do right now because I will almost certainly not be able to do this when I am old.

PT

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I did all of the band exercises. I’m jimmy rigging one of them because the original band broke and I’m using the one I have left for all of them. So now I can do one arm at a time instead of doing them in tandem. My shoulders are in bad shape. The grinding was absolutely gross to hear. Adhesions R Us.

Bird dogs

Rock backs (I don’t know what this is actually called.)

Wall sits

Squats

Other yoga-tastic stretches to loosen up my hips and shoulders.

Neck stretches

My wrists are in absolutely terrible shape. Bird dogs hurt.

I can’t list stretches. I am bad at remembering the names. But I spent half an hour working out my body after we did about 2.6 miles walking today. (My tracker shut the fuck off so I don’t know precisely how far we went but I know how far the store is.)

Medication and medical care.

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It was occurring to me this morning that I’m doing surprisingly well for the level of medical care I have been receiving. It helps that I am very consciously doing less. There is less cleaning on the road. I am not gardening much. I am not running around socializing as much as I did in CA and I don’t feel the internal pressure to be helping my neighbors. (I loved my neighbors–don’t get me wrong. But I put a lot of pressure on myself to show up for them when I should have been sitting at home resting.)

Noah agrees that I am doing very well at not exploding. I am not crying all the time. That’s really good.

I am in tremendous pain. But instead of continuing to do lots of work anyway I am going limp. My arms are doing quite badly. My back and hips hurt so much that I am gritting my teeth a lot of the time. That’s not great.

But I am doing incredibly well at not taking it out on anyone else. Given how poorly I feel… I am proud of myself. I am doing quite well at keeping my poop in a group. I have not been screaming. I have not even been shouting much. I am quiet a fair bit. I alternate between mild exercise (I need to be doing my PT and I’m not) and a lot of resting/talking to the family.

The apartment is absolutely always less tidy than I would like. I am choosing to watch extra Netflix instead of cleaning it up because I need to not do more to wear myself out.

I am being a grown up. It’s kind of weird.

I am having some mood swings. I absolutely always feel like I “should” be doing better. But all in all I’m not doing shittily. How long have I been doing ok? I don’t know. Hard to judge.

A trip to lake vomitcaca

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Today a friend said, “You have a remarkable number of stories about children throwing up on you. Talking to you reminds me that I am totally committed to not having children.” I giggled a lot. Yes, dear friend, if you aren’t ok with being covered in vomit, shit, piss, and snot… don’t have kids. Kids have puked on every limb, my hair, in my mouth. Rivers of shit have cascaded down my body. I’ve been peed on more times than I can count. They have blown their god damn noses all over me and into my mouth.

And the blood. So. Much. Blood. My own, theirs… so much blood.

Do you know what bothers me more than bodily excretions?

DO YOUR GOD DAMN CHORES WITHOUT ME HAVING TO ASK 958 TIMES A DAY, PLEASE.

It’s funny where we all have our limits.

Living in the slaughterhouse

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Oh gosh. This period is so much. In a 12 hour span I completely soaked 4 pads and a pair of 2 tampon underwear. That’s a fuck ton of blood. When I was rinsing things out in the shower this morning before I toss it in the washing machine… it looked like a slaughterhouse. There was blood up to my knees from the splashing. It’s just… whoa. I hope that next month is a bit more sane. I don’t really have enough menstruation products to be bleeding like this. Right now I have on the panties, a panty liner, and two full pads. Please let me make it till after lunch. Then I’ll change the whole shebang (I actually remove layers as they fill up because sitting on a damp wad of cloth that is 2″ thick is quite uncomfortable) and put everything from last night and this morning in the laundry. For once I’m glad the washing machine is so small so I don’t feel quite so wasteful.

It’s a lot. LIke, oh my goodness and splashes of tomato sauce lot. Like slaughtering animals a lot.

As one of my former students used to say while cackling: “Never trust anything that can bleed for a week straight and not die.”

I don’t feel like I want to do much. I want to lie very still and bleed.

I feel like a rather shitty woman a lot of the time. I know women who go through similar stuff, with the same number of kids, and they have a job too. I feel like a lazy sack of shit. My hat is off to working mothers. Y’all are… magical.

Comfort and creatures

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The worst part about the house we are staying in is the mattress quality. My back is very sore. I would say that I still haven’t crossed the pain threshold which feels magical to me. I have not been doing my PT exercises and that’s a problem. My body is degrading again. I am having a hard time doing them in the main room of the house with everybody present (I don’t know why, no one cares) and there literally isn’t floor space to do it in a bedroom. I have less floor space in this bedroom than I had on the cruise ship. I said I would investigate a massage yesterday and instead I took the kids (the younger two) to the beach. This was good for my relationships with them (I have not been having enough fun with my kids) but it means I am, as usual, prioritizing my kids over myself. I really struggle with this balance.

I told Noah that if one of us was going to have their “alone time” this week be doing the laundry at the laundromat it should be him since all of my other “alone time” is medical care and his “alone time” is usually drawing or playing games. I did have three whole video chats with friends this week. That was tremendously helpful for my mental health. I feel less like a fuck up who can’t ever get anything right.

There is a balance and it is hard. If you look up advice for parenting with most of my medical conditions the first or second piece of advice is to have a trusted support team so that other adults can take care of my children and I can have a lot of alone time to rest and recharge. Ha. Haha. Hahahahahahahahahaha. Fuck you. I completely and fucking totally failed to find support. So that piece of advice is basically worthless to me. Which means that in the eyes of what authorities I can find… my basic existence is too much stress for anyone to handle well. That does not excuse my failures or make it ok that I am a bully who dabbles in abusive behavior.

I tried to go get my nails done because it is one of the very few activities within walking distance of where we are renting. A pregnant mama was ignoring her 4 year old so she could get some me-time and I ended up entertaining the kid because she was talking to me. Sigh.

I want to be able to keep writing about my fuck ups. Not because I am bragging: so my children have the ability to go back and check their memories against what I was writing at the time. If they grow up and tell me that I hurt them… I won’t be able to deny it. I will have to say that yes, I did those shitty things. I wrote it down so that I could never minimize your pain. I hurt you and that is terrible.

My mother and sister rewriting history and telling me that they supported me when I prosecuted my father was really damaging. I want that to be literally impossible for me to do.

I will say, “Yeah. I was a complete fuck up for about a year there. I failed in a bunch of ways for a bunch of reasons. Maybe we can talk about those mistakes so you don’t have to repeat them.” Like my friend did for me recently. She told me “When my kid was (age) I did x because y and z were going on and it damaged them.” My friend was trying to warn me.

It is hard the way the needle is moving generationally. Many of my older-than-me friends made mistakes around hitting their kids. I am not allowed to let my kids have the option of kneeling on rice twice in their life to find out what being uncomfortable feels like. The path to being correct grows narrower over time and I am not allowed to leave my kids alone the way I was nor can I find anyone to help me so that I can have stress relief. I am not asking for pity. I am trying to find a way to give myself enough grace so that I am capable of doing better.

If all I do is hammer on what a failure I am… I will do worse and worse because I will freak out. My comfort matters. I can’t excuse bullshit. That’s not ok. But I am doing a hard thing under hard circumstances (they were hard standing in one place so please don’t tell me this is all because of travel–I feel better here than I did in California) and whereas sometimes I will do well… sometimes I will fail.

Perfection can’t be the only option or I need to kill myself because I will never be perfect.

Sometimes we need to fail so that we can learn a lesson. That means I need to be imperfect.

I think the way we have been handling school for the past two years was a necessary failure for us. I tried to live up to what my kids asked from me when they didn’t understand what they were asking. We all regret this. Maybe this regret is a necessary part of the process of learning about learning for us. They don’t truly want what they think they want. They are kids who have never been in school. They don’t even know what they are asking for me to do.

Her Sweetness is 13 months old. Over the next 5 months I will be able to pull away for longer and longer spans of time as she eats more food. Noah and I will have to find a way to each get more alone time. It may be that we trade weekend days off. Frankly we could each use a 6-8 hour stretch once a week where we are not responsible for working or doing anything to interact with our kids. No shopping for the family or doing laundry or medical care with that time. But we aren’t there yet. #goals

One of the things I am enjoying the most about travel is seeing the animals. The different birds (I have traditionally felt very confused by people who traveled to look at birds, but they are actually quite interesting? I baffle myself.) and reptiles and mammals are so cool! I could not fucking tell that was a real crocodile. I thought it was a statue. Which is why my stupid ass does NOT APPROACH WILDLIFE. Seals came up on the beach right by where we were swimming. I have had sea turtles bump into me in the ocean–the babies seemed super curious. I have seen crabs that range in size from about 2″ tall to about the size of Middle Child’s head. It is so cool that there are so many kinds and sizes. Cockroaches as big as my thumb (oh I’ve seen those before). Today MC and I watched a couple of birds have a knock-down-drag-out fight and I said, “Doesn’t that remind you of you and your sister?” He grinned sheepishly.

Lizards crawl on our walls (I think they get in through the hole where a fire detector is supposed to be… and isn’t… The ants are both super tiny, way smaller than we saw in California in our house and much much larger.

And yeah yeah, fish. Duh. Nothing brilliant or exciting looking. We haven’t been snorkeling or anything.

I just read an NPR article about Inuit parenting. It had some excellent points about anger. I feel that when I am on my game I am in this direction. I try. But I have a lot to learn.

It is hard learning how to give the exact opposite of what you got.

But… that’s necessary. Hard is not impossible. It is just hard.

Do not love.

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I’m using the vaginal dilator. This is not a fun process. I have to push just hard enough against the walls of my vagina to cause mild discomfort but no pain then I have to back off. I just have to sit and do that over and over again. And try not to feel scared or upset because that eliminates progress.

Maybe someday my cunt will stop shredding.