Category Archives: doctors suck

20 days. That feels real.

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Eldest Child is back from her adventures. We had a long chat about courtesy and checking in and responsibility. Not because she did badly! Because she did pretty well for a first run but we need some tweaks. Everyone was happy about how it turned out.

Today I get to notarize some paperwork to finalize our forwarding address. Then the construction guys are coming back to deal with the front door; that has been an adventure in fuss. They have failed to find a lock that fits the door after a month of trying. Today they are ripping out this door and replacing it with a door that has a lock available in the store the same day.

I see my chiropractor and massage therapist. That will be good.

Late this afternoon a medical appointment for a kid. Woo. One of the very last ones. I think we only have three medical appointments left.

I have 9 more medical appointments before I go. I finally have an appointment for an Ehlers Danlos Screening. That took jumping up and down and screaming. Why do I want to find out one way or the other? Because it impacts how I should be exercising.

Noah has probably one more Japanese class. Things are winding down. Kids are done at martial arts.

I am at a fussy, fiddly, slow part of packing. Like, I’m playing with which things should go in which suitcase and I’m writing lists of what is in a bag so we can find things later. We have three pieces of furniture that we want to keep until the last day.

I have exactly one friend date scheduled, a lunch. Otherwise, I’m here. If people will miss me they know how to find me before I leave. I can’t chase people down. I’m conserving energy before my next big launch. 20 days means I need to be resting.

Although… I am looking forward to resting as we go. Boat. Island. That sounds like rest to me. I’m bringing books (that will be shed as we go) and art supplies (that will be used up and not replaced any time soon). Between toiletries, art supplies, and books I am easily bringing 40 lbs of crap I will shed in the first month or two. It will be really nice when the weight goes down. I want to read these books before I pass them on. Maybe I’ll get a bunch of it done before we leave. I have 20 days.

*One* of the bags of art supplies is 8 lbs by itself. And there is another 3 lbs bag. And then there are Noah’s art supplies in his bag. And the stuff in the diaper bag and in each of the kid backpacks. And my purse. I think that when I add paper at the very end… it’ll be a solid 20 lbs of art shit. When did we become artists? Like, that’s a huge theme for our family. That’s a thing we do. I’m not sure how this became my life.

I should weigh all the books by themselves before we leave just to amuse myself. Thank goodness the books will be a load that gets lighter as we go. None of the books we are bringing are books we want to hold on to. We will leave them in airports and on boats and anywhere we see a lending library. It’s easy to share books. Well… when you are getting rid of just of just a few curated books it’s easy to share.

Ok. We have a little bit more of a plan. For your information:

February: leave the house on the 18th. All of our stuff will either be on the driveway or in the pile for trash. We stay with friends for 3 days then get on a boat for 10 days. I am looking forward to a 10 day cruise to Mexico. I feel like a snot. I feel spoiled. I feel like this is ridiculous and I am so happy I get to do this.

March: Hawaii.

April: Japan

May: Noah will go to Minneapolis alone while the kids and I go to Scotland. Noah will join us after a week or so.

June: Mostly Scotland but trips to England and the Netherlands for conferences.

July: Mostly Scotland until we come back to the US at the end.

August: Noah needs to go to Nashville. The rest of August we will be in Oregon, I think. Middle Child reaaaaaally wants to hang out with Grandpa for his 9th birthday so we will make that happen.

September: Thailand

October: Thailand

November: Thailand/ Noah needs to go back to Nashville. I don’t think the kids and I will come to the US.

December: Taiwan with Pam?

That’s what I know about 2019 right now.

And I leave for it in 20 days. Oh my.

The “sick enough” dance

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I keep feeling like I should put together a binder with all of my medical results and data. Then I am reminded that having such a binder means that many doctors will view me negatively as a drug seeker and they will refuse to give me treatment because I will be seen as a problem.

So I sit here and feel anxious and don’t follow through.

But I have spent literally years going around in circles trying to get a Lorazepam prescription. I don’t want heavy drugs. I’m not looking for opioids. I deal with my chronic pain through a combination of white knuckling and pot. I’m not asking for heavy mood altering medications. I’m not asking for anything intense at all. I don’t even want a god damn daily dose. I want a mild anti-anxiety drug.

That now I am being told is the correct first line of treatment for my problems. After years of begging and being told no. I am so frustrated.

Now I have the gene testing proving that most psych medications aren’t going to work for me. I have the failed CPAP study in my history showing that I do not have severe sleep apnea and I am not a good candidate for that sort of therapy. It doesn’t solve my problem. It took so much begging to get this damn sleep study in the first place. Despite people telling me left and right that I should have had a sleep study years ago and they are so easy to get.

I was told to go home and take a Zyrtec.

It’s kind of like how I had to throw a kicking screaming tantrum before my last psychiatrist was willing to test me for ADHD. She said that she didn’t think that was important until she had gotten me stabilized on medications I didn’t want to be on. Even though knowing that piece of information changes how my treatment model should look.

I’m so frustrated.

Even though she was the one who did the gene test and she HAD PHYSICAL EVIDENCE IN FRONT OF HER that these medications were unlikely to be terribly effective for me… I have to try everything or I’m not really trying and I don’t care about getting better.

If I don’t give up more years of my life to the misery of drug testing then obviously I don’t care about feeling better. Like, duh.

I have already been through years of drug testing. Literal actual years if you add up all the months put together because I did it in batches at different periods. And all the way I’ve been saying, “I don’t want drugs.”

If I put together a binder to document why I don’t want their drugs I will be labeled as a drug seeker and I will be denied the treatments that are appropriate to me. Until I get on the drugs they think I should be on. The drugs that will hurt me.

It’s kind of like how I get to 35 and talk about my sensory sensitivities and all the ways I struggle to conceptualize people and all the elaborate mechanisms and rituals I have created to pretend I’m normal and a well educated clinician says… “Yeah you are autistic.”

That would have been god damn useful to know more than 20 years ago.

But that requires looking at me and listening to me beyond “Wow you have big feelings let’s medicate the shit out of you until you are compliant and then I’ll talk to you about something else.”

No. That’s not acceptable. It’s not ok to say that I don’t deserve help until I am fully compliant with demands that hurt me. But that’s what doctors have effectively told me for many years. I find doctors so terrifying.

I’m really grateful the new OB asked a lot of questions and mentioned that there are mixed reviews of pot during pregnancy and when I could rattle off all the specifics of the studies she was off-handedly referencing she backed right off and said, “You probably know more than me then.” That’s what respect from a medical provider looks like. My current pain doctor isn’t willing to test me for EDS even though several people on my medical team want him to… but he is otherwise very responsive to my comments and requests and he is thrilled to support the medication plan I want. He says that I have a really good handle on medication stuff and he’s happy to hear that I am not looking for increased pain management through drugs. His entire job is helping people who are crumbling from pain cope. He thinks I’m doing great on that front.

The current OB office is poorer looking, the furniture and building look shabby. I feel like it has translated into the OB not having time to worry about stupid shit. She’s not stressed about my pot usage. When I can demonstrate that I have extensively researched the consequences she didn’t argue or push. That’s not something she has time to worry about. I didn’t feel pushed into deciding shit I don’t care about. I didn’t feel judged about my weight or relationship status. That was nice.

I think that medical providers are very important. I think that I have to deal with them. It is hard getting to the information in their brain that hides behind their innate prejudices.

Having a body sucks.

Sleep study

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I went in and got the results of the sleep study. I’m so pissed that it took years to get a fucking sleep study. I HAVE BEGGED. I don’t have sleep apnea. Well, technically I’m barely clinically in the range because I have slightly more apnea incidents close to REM sleep than is “standard” but pregnancy increases apnea incidences. The apnea scale goes from 0-30 and 0-5 is considered normal. I’m at 5.6. Given that pregnancy increases apnea incidences… I don’t have apnea.

The more important metric is blood oxygen level and I never got below 96% which is great.

So the last several years when doctor after doctor has told me they wouldn’t give me sleeping pills because I might have apnea but they weren’t willing to test me… that was a big fat fuck you.

I need to go through all the medical results I’ve gotten in the past year or two and put into a binder like Sarah has. I’m tired of having debates with doctors about whether I have this condition or that and whether or not I should just get back on Prozac. UGH!!!!

Oh, and my apnea score only qualifies if you look at this amalgam number. If you look at the base apnea number I’m at like a 2.3. (I’m not bothering to look it up this second because Jesus I don’t give a shit.)

So my insurance company will not fund a cpap machine. I’m not clinically impacted. The sleep study place said I still might have some improvement in sleep if I tried a cpap, so why don’t I spend $800 (that I can’t get back) to try out the machine! Sure I have no signs that it would help and I’m ridiculously sensitive to things on my body interrupting my sleep, but WHY NOT spend a whole bunch of money on something that probably won’t help?! DON’T I WANT TO LOOK LIKE I’M TRYING TO GET BETTER?!?!?!?!?!

I fucking hate every doctor.

The sleep doctor said that looking at all the readouts from my study she would guess that I am waking up from a combination of pain (probably fibromyalgia based) and hypervigilance/anxiety. I would probably be helped by a simple sleeping pill or anti-anxiety pill but she hesitates to prescribe anything like that while I’m pregnant because extra sedation on top of the pot is mixed.

So you know how I’ve been BEGGING for lorazepam for YEARS?!?!?! That’s a simple sleep/anti-anxiety pill. I take 10 a month when I get to decide my dosing. BUT OH MY GOD IT’S HORRIBLE FOR ME TO DECIDE THAT I NEED A MEDICATION CLEARLY I MUST BE ON A DAILY PILL THAT RUINS MY LIFE OR I’M NOT TRYING.

I feel rather like I have improved my life and my body against the direct efforts of medical providers for a long time now and that’s confusing and mixed.

I still haven’t gotten my records transferred from the OB practice so I can be permitted in a new practice. That’s 3 weeks now. I should go throw a temper tantrum today because I’m 22 fucking weeks pregnant and going a month without care isn’t acceptable because they don’t fucking feel like sending some god damn paperwork. Walk down stairs. Make a copy. Hand it to me. That’s the end of this discussion.

Had to be done

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I woke up this morning and sent the OB a message saying I will be unable to be comfortable in his presence and I’d like to meet other people in the practice.

Nothing to argue with. No specific complaints to dismiss. Just “I won’t be able to be comfortable.”

I’m nervous about playing OB roulette while I’m pregnant but on the other hand I did better with the random on-call OB when EC was born than I did with my chosen birth attendant so who knows.

That did not go so well.

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I met “my” OB today. I don’t like him. He inquired if Noah is a new partner and that’s why I’m having another baby. I came home and sent him this email:

“Hello Sir,

I need to let you know that the way you inquired if my partner was a new partner was… incredibly poorly done. I felt pretty insulted. It felt like you were inquiring as to which baby daddy number I’m on and after eleven years of marriage… Yeah that was not well done.

Kristine Gibbs”

He also proceeded to tell me I shouldn’t be on so many vitamin supplements. When I explained that this is a direct result of testing done within the last two months and is specifically to fix current deficits… he told me he will go check with the genetic counselor and they will get back to me with their opinion of the supplements I’m on.

He was rude when he inquired about sleep stuff. “Have you ever tried taking anything to help you sleep? Have you ever tried exercising?”

I… I am not going to fucking like this dude.

Naw. I’ve. Never. Considered. Taking. Anything. To. Help. Me. Sleep. Why. Would. I.

Fucker.

And exercise? What’s that? Clearly I’m too fat lazy and stupid to consider exercising.

Motherfucker.

Oh here we go

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So The Guardian came out with a thing saying that if you care for the planet you should have fewer children. Enter judgmental shaming.

I’m having a third child. I still don’t know if I’m having a fourth child.

Is this a tremendously selfish choice? Absolutely. Am I contributing another body to the planet when there are already a lot of bodies? Yup.

But you know what? Not that many people in the world were genuinely wanted. I’m going to be a selfish piece of shit and bring another person or two into this world who is desperately wanted. Because I need to stand near that so that I can try to learn how to fix my fucked up brain. I’ve made a lot of progress… but I’m not done growing up.

I am teaching myself attachment with my children. It isn’t the most recommended way to heal developmental trauma but I’m doing a surprisingly good job based on the evaluations I get from a wide variety of health practitioners.

I should be dead. This still comes up.

But I’m not dead. I’m instead making progress on my mental and physical health. I continue to make progress.

My children talk frankly about how they love how much I focus on them but I’m clearly going to need more people to balance the load in a few years because they are going to want more time away from me. This is a conscious thing we work on. We support one another while giving space for someone to pull away because that’s healthy.

I think it is funny that I sometimes make progress because a therapist helps and I sometimes make progress despite a therapist being an obstacle. Both seem useful.

My shrink said something that is burning in my brain and bugging me. “You are obsessed with being unique.”

Oh bitch, please.

I have spent my life meeting people and trying desperately to find reasons that I am like them. I can usually find somewhere between 5%-50% of similarity in experience and then I say something else about myself and the person starts doing the loud, “NOT LIKE THAT. I’M NOT LIKE THAT. NO. NOTHING LIKE THAT.”

I’m not obsessed with being unique. I am resigned. I am aware. I am trying to find ways to move through the world that allow me to get hurt less while also hurting other people less and that’s complicated because I don’t have that much in common with almost anyone so finding a way to interact without mutual pain is fraught.

A fucking psychiatrist who tells me that two dozen medication trials mean that I’m just getting started and I should do two or three dozen more trials before I’m allowed to say that medication doesn’t work for me… that’s someone who is obsessed with not seeing me as unique. That’s a problem. Given that a high number of these pills make me intensely suicidal and your advice is, “Well, go to the ER”…. naw. Nope. No fucking way.

Pot works. It’s not perfect, NONE OF THESE DRUGS ARE PERFECT YOU MOTHERFUCKERS, but it is less harmful than basically anything else available. The problem with pot is that it is illegal in a bunch of places. So I “should” get on a legally recognized drug. That will wreck my whole fucking life. Just so I can be legit.

But I’m unhealthily obsessed with seeing myself in context of my life?

I have some feelings here.

My shrink telling me that maybe I only need three hours of sleep so I shouldn’t use pot to help me sleep… that’s fucking bothering me. Chronic sleep deprivation is torture,. It literally makes people go insane. BUT DON’T USE POT.

I don’t think the bad thing here is my insistence that I be seen in context of my life and my experiences. We all have our own unique life experiences. Most people have life experiences that fit within a bell curve of normal. Then there’s me.

But I should stop paying attention to that so people can streamline care right the fuck over me. If I die that’s just collateral damage.

I am still alive because I god damn insist on seeing myself as unique. You bet your fucking buttons.

I don’t think everyone “should” have lots of kids because having kids is a good thing. I don’t think that adoption is bad.

I think I need to have more biological children because I have terrible problems in my brain that will only be fixed through long term exposure and work. I need to work on my family’s genetic problems and I need to find compassion for myself and the psychological and physical problems that come from being like me.

I’m not completely unique. I have children who inherit a lot of what it means to be me. And that means I need to work on what it means to be me.

I don’t think this is a journey that everyone needs to go on. I don’t think it is a journey that most highly traumatized people should engage in. I think it is what I need to do.

I think there is the distinct possibility that if I do move somewhere and get a big house… I will foster. I have always wanted to foster when my children are older and can be positive role models to the kids I’m fostering.

It isn’t that I’m opposed to helping kids who need a home. It is that I need to fix my home first or I’ll just fuck them up more than they’ve already been fucked up and that’s not fair. Not to them and not to me.

Today I see the pain doctor and the woo nutritionist. I’m going to tell her I need fewer pills. I’m gagging and choking and it makes eating a nightmare. My gag reflex goes into hyper drive during pregnancy and I’m tired of retching at the table.

Slight side note: Future Middle Child had their first solo therapy appointment. They told me they didn’t want to talk about it. They want privacy. I told them that is a jim dandy thing. I may sometimes say, “How did it go?” because I’m nosey and curious but telling me “I don’t want to talk about it” is ALWAYS ok. Telling me no when I want to know something is fine. You are allowed. You are permitted to have space where I am not.

Having children is complicated. There are consequences across many planes. Yes, I’m increasing my effective carbon footprint.

I’m also trying to learn how to feel ok. That’s really hard. I’m selfish and I’m terrible and I’m going to do what I need here.

“If you really want to have more children, just adopt. There are many children in the world who need good homes.”

That is… such a complicated statement, folks. Cross cultural adoption is complicated. Adopting older children who have major trauma is complicated.

Losing your mother is traumatic. Getting an adoptive mother is…. not the same thing as getting to be with your mother. I’m not knocking adoption. It’s wonderful. It’s important. Lots of people are effectively “saved” through adoption. But it has bad sides too.

In order to be a good adoptive parent you need to be able to put your shit aside and focus on the needs of this important person you brought into your life. They are not there to meet your needs and what is going on with them may not help you heal your ancestral trauma.

I have a lot of ancestral trauma to heal and I’ll be fucking frank that it is easier when I deal with my children. My children make me believe that I deserve to heal. That my family deserves to have better than we have always had. Not in terms of money or “things”. But in terms of love and consideration and mutual aid.

My grandmother fostered when my mother was tiny. My mom was highly damaged because her mother (my grandparent) spent a lot of time acting like the kids who were there to be fostered were special and needed special treatment but her kids needed to be slapped into silence.

My family has a lot of baggage in our bones and in our brains and in our blood. I want to see if that can be healed. I will not be able to do that through surrogate children. Only through children of my blood.

Which does not change the essential worthiness of all other children. But I’m not ready for them. It’s not them, it’s me.

This is going to come in some weird chunks. Luckily for me you have no choice about format.

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If I’m going to make some choices about what I want from therapy I need to think about my life and how different parts are working.

  • Marital
  • Parenting
  • Friendship
  • Giving back
  • Physical health
  • Emotional health
  • Spiritual health

I’m sure there is more.

I know that a big part of what I need to actively work on is my inability to perceive people as liking me or for perceiving that there is a place for me. I can be in a gathering of people who love me intensely and still feel like I am such a problem I should just burst into flames.

My psych wanted me to be “stable”. I find that to be an odd goal. Absence of strong emotions. I don’t think that is a goal for me. I want to be able to manage my strong feelings without screaming at anyone or hitting anything or kicking anything or saying things that make my friends feel they need a whole lot of space for me. I don’t want to stop having the feelings.

I believe that a function of growth mindset with regards to my particular life/case means that I will have an easier time existing in my body–not that I will get all the way to pleasant. But I’ll take the moments of good I can get.

I’m sure I’m going to write this down many times but I need to do so now: I walked out on my psych after she told me that we have to keep trying pills so we can find the one that will fix my PTSD damaged brain. She said I could go into remission.

That’s not exactly how it works. I can learn to feel safe. I can learn to overcome the learned deficiencies in my brain. That doesn’t mean a magic pill wipes away the damage. It’s work.

PTSD isn’t a death sentence. PTSD doesn’t signal the end of life. There are many cases where medications help make other therapies more effective. It is totally worth trying medications to treat PTSD. Then you get to the fact that I’m chemically weird. Is it right for me that I have to be on medication? I am really getting to the point where I think not.

I was there for sleeping pills, essentially. I will go back to over the counter. Maybe I’ll hurt myself by using them inappropriately. Ok.

I have 2-3 nights per month where I can’t get to sleep for love or money. I wanted help not completely losing those nights of sleep. I think I could increase my emotional stability if I could regulate my sleep better. Over the years I’ve gotten a lot better in this area but I still have work to do.

It’s ok that you don’t want to help me though. I’ll just lie to the next doctor. I understand that you need that from me in order for everyone to feel comfortable here. I just deeply wish it wasn’t true.

At this point in my life I pretty seriously see medical providers as gate keepers. They have access to helpful tools and they will make you jump through hoops before you are allowed access to the tools. I’m not very good at performing acquiescence. I’d be dead if I were so I have trouble seeing why it is something I should pick up.

I just had a funny moment where I realized with great clarity that if I had been capable of feeling like I “belonged” in my family I almost certainly wouldn’t have prosecuted my father. If I had been able to have that deep feeling of group loyalty that other people seem to have whether they like it or not… I’d be in a very different life place.

Maybe it is a protection mechanism that I never feel like I fit in. It keeps me from tolerating abusive behavior. I will walk on from anyone, no matter how much I like them, if I don’t feel like I belong. I basically never feel like I belong. So I walk away from most groups.

I miss the Merrie Pryanksters. I miss going and performing at Renaissance Faires. But I never felt like I fit in. So I stopped going. You know, every time I talk to someone from that group they are warm, welcoming, and express that they miss me? Why do I feel this inner resistance to going back and trying again?

Because it isn’t a place for me. I don’t know why. It is this keening anxiety inside of me.

Do you know when it stills? When I’m at the bottom of a puppy pile in my house. Every person here wants me around intensely. Even when they get mad at me (and they do get mad at me–I’m an asshole and I deserve it) they still love me and it will still be a maximum of a few hours until they want to love on me again.

Sometimes my children can be almost shaking with anger at me and I can say, “I know I am terrible and I deserve all the fury you feel in your body right now. But you look like a hug. I know I suck, but do you think a hug could help how you are feeling in your body right now?” Usually they melt into tears and cry and hug me with intensity. It hurts being so mad at someone you love.

It’s ok to be mad at me. I deserve it sometimes. I’ll accept that. It makes sense.

You know what else I was thinking about when I couldn’t sleep for most of last night? I was thinking about the fact that it is very select friendships that have ended over the years. And despite my desire to say that all of my problems are my fault because I’m always the common denominator…

The Godmama has basically never had a friendship last longer than ten years. I know because I’ve asked her about her life obsessively for nearly ten years. The Bonus Mama has a habit of breaking contact with people and saying that everything was all their fault. This isn’t her first time. A told me he would be my family forever… but he doesn’t have friends that I know of other than the dude he went shooting with a lot. I don’t know how he’s doing with his newer obligations but I don’t think he was ever a decent sibling to his actual sibling. Other A, she was wrapped up in her families crazy shit. That wasn’t really me.

I want to think that all of the break ups that happen in my life happen because good people get tired of dealing with a piece of shit like me. But I don’t actually think that is what is going on.

I mostly have relationships with troubled people. I search for them. My friends have physical and emotional and mental disabilities. Some have all of the above and some have one and not the others. I’m sure I have a few people somewhere in my life who are completely mentally and physically healthy but I can probably count those people on my fingers and have some left over. I gravitate towards people who struggle.

We can understand each other. We can validate each other. Life is hard.

If I’m picking people who already have their own spree of trauma behind them… big issues aren’t going to be only about me. That’s not how relationships work. There are two sides to problems.

I offered the Godmama help. Her wife wouldn’t let me. I tried to help the Bonus Family in a way that didn’t offend the Bonus Mama but at some point there’s stuff I have to say about the kids. A&A? I don’t feel bad about the fact that things ended. That happens.

Life involves a lot of endings. I tell my kids that endings are necessary because they create space in your life for a new beginning.

Why do I feel like the ending of a relationship is such a failure then?

Because I love you and I wish I knew how to hold on to you forever. But I don’t know how. Sometimes I’m afraid I can’t.

The funny thing about my psych having a conniption fit about my stability is… I am actually in the most stable period of my life. I think I’m doing great. She thinks I’m a never ending train wreck.

Wheeeeeeeeeeeeeeee

But lack of sleep is totes going to help. Thanks.

I don’t think it is my psych’s fault I have my problems. It is her fault that she is unwilling to give me the help I want to receive because it isn’t how she likes helping people. I get that she is covering her ass. I get that. I don’t even think she is bad to do so. She has Standards of Care for a reason. It helps a large chunk of people.

Just like large chunks of people are helped by government cheese. And then you give it to someone with a severe dairy allergy. BUT I’M TRYING TO HELP. GEEZ WHY ARE YOU COMPLAINING?!

I guess I’m just selfish.

Someone who will give me a gene test that shows that a whole bunch of medications are essentially not able to help me but I have to try them anyway “just to be sure”…

Med trials aren’t fun. They are hell. They feel horrible and my experience of many psych meds is that it dramatically increases my suicidality. Oh how perfect! But if I want to stop playing this game of Russian Roulette, clearly I have a fixed mindset and I am unwilling to grow beyond my trauma.

Oh fuck you with a pogo stick.

I have made more progress than people believed possible. How dare you tell me I am incapable of more. How the fuck do you know? Medical people told my brother he would never walk again either. Guess what he motherfucking did? That bitch walked. Ok, he looked funny as hell but he got around without anyone’s damn help when doctors swore up and down that would never happen.

Fuck doctors.

Western medicine is really quite young. Psychiatry is an even younger discipline. And a great many people follow it like it is a religion. The way that people “believe in science”. Ok dipshit, you know what? Science is a process of asking questions. If you “believe in the results” you are just as silly as the people who follow religion whom you believe you are better than. So fuck right off. The results of studies are directly conflicting all the damn time. If you believe in those results you are stupid.

Sorrynotsorry.

I care about studies. They influence my thinking. I read them obsessively. But I don’t believe in them any more than I believe in the Norse or Egyptian or Hindi or Christian mythology I read to the kids.

It’s good to know what other people believe in. It makes it easier to figure out life. That doesn’t mean I have to agree.

It’s like the vaccine schedule. It is designed with the belief that the vast majority of children will be in day care from approximately six weeks of age. If a child is going to be exposed to day care then they really do need to be vaccinated as early as possible to ensure their protection and the protection of the people around them. But if all children stayed at home with a parent/family care giver until five or six years of age… we wouldn’t need the same vaccine schedule. It is different in different countries and it works out ok. The US has (I might be remembering this wrong or it may have changed in eight years) one of the most extreme vaccination schedules: meaning more shots and earlier. We are scared to death of under vaccinating.

But countries that vaccinate later and less often don’t have raging rates of disease epidemics compared to us. They just have an entirely different culture and the children are exposed at different rates. That’s not right or wrong. It’s just different.

My first child was vaccinated late. My second child was vaccinated early. There were different things going on in their lives. With my first child I barely left the house to grocery shop. She genuinely wasn’t exposed. My second child was exposed so they were vaccinated as early as possible. I don’t feel bad for making different decisions. The circumstances were different.

I don’t feel there is any value in blindly conforming for the sake of blindly conforming. If I had to work and my kids had to go to day care they’d probably follow the normal vaccination schedule. It isn’t my favorite but it would make sense.

I feel like my situational ethics is going through the rough lately and I’m not sure I like it. For most of my adult life I’ve refused to lie to doctors and as a result I’ve had a lot of fights. I’m to the point where I’m ready to lie with a big smile on my face. I don’t care. You don’t want to hear the truth. You want to hear what you want to hear and I need the support I need so I need to manipulate you into giving me what I need because I can’t get it honestly. Cheers.

Because being honest means doing without and I’m kinda frustrated with that bullshit. I will never be properly, completely under the control of a doctor. That’s not an option in this life. Get over it.

I sent my therapist an email. Here, I’ll just copy and paste it because I have no shame. I sent this with the title “I feel I need to say something”

So today was festive. I then went and fired (redacted psych name). I’m comfortable with this decision.

I’m going to spend a lot of the next two weeks thinking hard (and writing too much; I’m sure) about how I’m going to need to talk about some of my medical stuff going forward. I believe that I still have things I can learn from you, but I feel that I need to put some thought into what I want that to be.

It’s probably time for me to look around and take more stock of my life and make decisions about what I’m trying to change. That will make it a lot easier to figure out what kind of help is actually useful.

I didn’t sign it and I didn’t give any more detail than that. I am not ending my relationship with you but I’m going to dictate the terms of it. Not you.

I feel like part of what I am going to say to her when I see her again is that it is not ok for her to call me with “Something she wants to say but she doesn’t want to get into a response.” If you want to say something at me outside of session you may send me an email and I’ll read it whenever the fuck I feel like. You are not entitled to my time whenever you want it. Do not call me and tell me that I am not to respond again. That’s not ok. We don’t have that kind of relationship.

We talk when I want to talk to you. I listen to you talk when I pay for time. I do not listen to you at your discretion. We do not have that sort of relationship and I do not want that sort of relationship with you. Hello: boundaries.

I am intensely conscious that medical providers are here to meet my needs at great expense to me. Guess what motherfucker? I’m not paying to be here for you. That’s bullshit. Pay me.

Talk about entitled.

I’ve dealt with a number of doctors who think I’m paying for them to decide if they want to acknowledge me. Oh I don’t god damn think so.

Psych’s line was: “I don’t want you on more than one mind altering drug”. Oh horse shit. You are going to put me on more than one mind altering drug. That’s your plan.

You don’t want me on any drug that you do not dole out. I get it. War on Drugs. Marijuana is the devil. Ok, whatever. You haven’t sufficiently studied it so you don’t know you can trust it. Whatever. What I know is that every other medication you make me try makes my life hell and this one drug is practically a miracle. I’m just going to have to live with you not liking my choices.

My shrink’s comment was, “She’s not as anti-pot as most psychiatrists. You shouldn’t judge so harshly.” The entire profession sucking is not a reason for me to be happy about a particular person not being the shittiest one in the bunch. For fuck’s sake.

VICTORY IS MINE *cough* I just managed to hear the gardener outside. I haven’t heard him in a year. I want the grass mowed for Easter. I’m so excited. *cough* Back to our regularly scheduled programming.

The psych wanted me to try up to 30 other drugs because “eventually” I will find my magic pill. What I hear when she says that is over a year, perhaps two years of drug trials. Most of which are going to put my body through the wringer and make me feel like I should die. All in the name of “stability”.

I do not believe that path will lead to greater stability and happiness for me. That doesn’t mean I don’t believe there is a path to greater stability and happiness. Just that I don’t think it’ll be paved by big pharma.

I believe with all my heart that I have the potential to grow and change. I do it over and over again. I do very little but change and grow.

That’s just how I roll.

Letter to psych

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After 4 pills of Lamictal I have a nose that is leaking like a faucet, a stiff neck (specifically pain in a location where I never have pain), intense jaw pain, my stomach hurts like a mother fucker and I can barely eat, I have slept 6 hours each night after taking the pill and can’t sleep more for love or money. I woke up this morning incredibly suicidal. I sobbed for a very long time because I’m so tired of living in this disgusting, pathetic, unwanted body.

I don’t think this is going to be my wonder drug.

Med evaluation

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I have a med evaluation appointment in a week. I’d better get my thoughts together.

I’ve been using pot for almost eight years. It changed my life. I use pot to help me sleep, increase my appetite so I can eat healthy balanced meals (I have terrible stomach pain from anxiety), as a pain medication, as an anti-anxiety medication, as an anti-depressant, and just generally to give me a slight pause in between experiencing something and needing to react. Without the pot I respond reflexively to a lot of things in ways that are problematic.

I don’t know what to do about this cocktail.

I am at the point of diminishing returns. I have to consume so much and it is so expensive that it takes too much time and money away from my life. At the very least I need a solid several months off. I tried taking time off earlier and it failed hard.

I need a bridge. I need a different crutch on my way to walking.

Isn’t this what harm reduction is about?

I have dramatically improved my relationship with food over the last few years. I get far less diarrhea now. I have periods of relatively normal bowel function for the first time in my life. I’m going to be working on that in an ongoing way for a while, though. I’m seeing a nutritionist.

I need help sleeping. That’s the first and most important key to this lock. When I go off pot I stop sleeping. Over the counter sleep aides aren’t very effective. I build tolerance really quickly and it just goes up and up. I think a week of sleep aide is a pretty good nightly dose. I may or may not be able to get enough sleep that way.

I need help with my anxiety. I am terrified a lot of the time and it manifests as me being bitchy. I can’t do that to my family or friends. My life is safe now but I haven’t talked my body into understanding that yet. I’m 10 years into safety after 25 years of problems. I’m seeing improvement but I’m not done.

I think that I should probably stick with St. John’s Wort and/or 5-HTP to replace the anti-depressant. I’ve tried most families of anti-depressants, anti-psychotics, and many anti-anxiety meds. I can take some but not many. I have horrible side effects from medications that end up being much worse than just living with the problems.

I’m hard to medicate.

Long term I’d like to be able to do serious international traveling. The pot isn’t very helpful under those circumstances either.

Ideally I’d like to find two systems that kinda sorta work but aren’t great. One being using pot for all of the above. The other being some complicated system of other meds that are used as needed while I go on long fast periods.

I think I will be a life long pot user. I think I need to have options for when pot isn’t an option because sometimes it isn’t.

I’m not sure what that is going to look like.

But I need to be able to take 6+ off from pot and have that work. I need to be able to do that for efficacy reasons.

My tolerance is just…. not sustainable at this point. I’m back to where I was before the break a few months ago. I don’t want to pay for this every month and I’m doing lung damage.

Balance the harm.

Try to reduce it.

Try to manage the risks so that you still get the upside without so many penalties. Life is just a game, right?

 

More doc follow up

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I’ve been seeing the chiropractor for a bit now. My arms burn like fire. I’m told that is part of the nerve regeneration/healing process after years of being pinched. God I hope so. My lower back is a web of pain non-stop. My neck feels better. My headaches are diminishing.

I like the doctor on a personal level. He has a great bedside manner. He always has suggestions and tips and explanations. I appreciate that.

Is that a good thing?

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I have been to see a chiropractor. Someone my friend recommended. I’m having positive experiences! This is… wacky.

He’s super mellow and nice and considerate. He is a good listener. He is very interested in setting appropriate expectations. He is very willing to back off if I feel triggered at all and he knows some specific language around PTSD. Go him! He took his doctors coat off a few minutes into my medical history. He said, “You know what? Some people find this reassuring but I don’t think it will go that way with you. I’m going to just remove it.”

That was… a big deal. Thank you for trying to equalize our apparent “standing”.

He showed me a lot of x-rays of my spine. Well no shit I hurt. When things are supposed to be in a straight line they are crooked like a staircase. When something is supposed to have a curve I have the wrong curve. Sometimes all the way in the other direction! Numerous vertebrae have bone spurs and my spine is compacted in several places to such a degree that there is bone degradation.

My hips are 8mm out of whack. (Meaning one leg is trying to merge itself back up with my body. Apparently that’s not good.)

Given that Dr. Woo seems to have helped me quite a bit (I should probably send him a follow up email explaining why I haven’t come back) I’m feeling optimistic. Dr. Chiro has the potential to be a force for good.

I will take every positive association I can have with white guys.

I’m still in the same amount of pain, but he said that is normal after the first day. I’m having a hard time not rotating my neck.

So the top vertebrae in your spine is supposed to be stacked neatly on top of the one below it. Mine is off to one side. (Pushed towards my left ear.) Apparently that isn’t good.

I love validation.

Not coping-methods

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I’m reading this book on meditation. (Specifically because it is published by one of the publishing houses I think is most likely to be interested in my book.)

It is hard living with contradictory selves. I honestly and truly believe that people don’t want to be in my life unless they want something from me. And yet I think that the vast majority of people who love me want nothing more than to chat with me for a few hours a year. That doesn’t seem like much to “want” from me.

But it creates a suspicious feeling. I’m really having a screwy day. I’m most of the way through a whiskey sour (1 oz whiskey, 4 oz sours) so I’m feeling it.

My stomach doesn’t hurt like it did when I came home from therapy. Between the medication and the alcohol I don’t feel so much like I should die. I just feel tired, drained, and kind of sad.

I feel like my therapist believes that I experience suicidality because I “like” it. I happen to think it would be more convenient if I believed that I am exceedingly able to handle most things that come up. I think I would like it if I didn’t always feel like I am hurting people so much just by existing.

I don’t know how to gentle down enough to deserve to live.

It was interesting, actually, on Friday I went to a party. Winter Bash. The Renaissance Faire guild I used to work with has a party every year. It’s not really the guild–the guild mistress and her husband have a big party. They invite people from lots of parts of their lives… but I only talk to the guild people because that’s who I know.

I had some really great chats. I’m glad I made it. I haven’t made it up in several years and it was lovely to catch up with a few specific people. But everything is mixed for me.

I watched people flinch when I was too loud/extreme/strong in my phrasing or something. I didn’t feel like I was that bad. The people who already knew me didn’t really flinch. Strangers did.

I like being able to produce that reaction from people when I want to produce that reaction. I actually don’t like that it happens when I think I’m doing just fine.

I feel like a manipulative chicken shit for talking about wanting to die when I am merely being held responsible for my actions.

But that’s not really it. If a judge wants to slap a restraining order on me because I said things that were genuinely illegal… that’s reasonable. I think that if I were actually threatening to kill someone I would bloody well deserve a restraining order and I would accept it.

I have no interest in hurting that doctor. If I haven’t hurt the people who have raped me… If I haven’t driven up to my sister’s front door and caused her permanent damage… a doctor fucking up some instructions is not going to send me over the edge.

I’m not actually a violent person. I am an abrupt person. I am an angry person. I understand that other people have no way of knowing whether or not I am a threat to them when I am angry in front of them.

I only tell myself it is ok to drink for stress reasons every few years. I never feel good about it. Even though I am massively opposed to AA and I don’t think I’m an alcoholic I have just as much guilt about drinking when I’m upset as I read about in books. Which… depending on how I read different books… actually means I’m an alcoholic. Even though I’ve never had a problem with drinking very much. I think about alcohol a lot. When I have even one serving I feel enormous guilt–which kind of makes alcohol a problem. Which by some definitions means I have a problem with alcohol and I shouldn’t drink.

It’s god damn medicinal. I need to lower my anxiety level.

I’m all the way up to four drinks this week. One at the holiday party. Two last night. One today. This is how I keep me honest. Speaking of which: diarrhea this afternoon. With this much alcohol no duh. I haven’t had alcohol in months. Before I stopped drinking entirely I averaged 1-3 drinks/month. (Yo- whiskey, one drink a night, is FODMAP friendly…)

I’ll stop hurting myself after the court date.

See, part of the thing about my self-harm is: I do it as an outlet. Otherwise I have outbursts of inappropriate emotion around people who don’t deserve it. Then I get punished for not having enough control of my emotions. The punishment is inevitably much larger and more of a problem than my self harm.

I reiterate: what the fuck is so bad about me hurting myself so that I don’t react inappropriately around other people and end up way more hurt?!?!?!?!?!

I miss cutting. Instead, Eldest is building some pretty cool stuff in Minecraft and Youngest is enjoying having the power to steer the iPad. I’m hurting my arms (typing) or reading and not talking a lot. If you don’t have something nice to say don’t say nothing at all.

I made ramen for lunch. For one of the few times in my life… it didn’t taste good. I got no comfort from the experience. I don’t think wheat is going so well. Oh god.

It is kind of funny that this happened on “vacation” week. Most kids aren’t supposed to be “schooling” this week. So it is very typical of their generation that they will spend most of their time on the screen this week. Ha.

There is a part of my brain that knows I won’t be upset about any of the things that is happening in six months. I will dimly remember being upset.

It would be nice to borrow from future self. I think having the awareness of a future self who will not be upset about these things is the best I can manage. I should stop typing and start reading.

Lots of balls in the air.

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We went to pick up the Prius because Toyota said it was fixed. Before it could be driven out of the parking lot a warning light came on. Toyota sent us home with a rental. But that’s pending more dealing with and maybe more paying for fixing things and who knows what.

The dishwasher is due to be installed today. I can’t wait. I have a full kitchen of dishes and I’m not fucking hand washing them all.

I have contacted half a dozen lawyers and left messages. Haven’t heard back. It’s kind of a bad week. Shit.

Talked to my shrink yesterday. I felt guilty because I try not to pester her outside of my sessions. She said it sucks but it isn’t as big of a deal as I’m afraid of it being. Oh god.

Oh, and Christmas is in three days. Maybe I should wrap more presents. I have everything. Although we haven’t discussed what we are eating on Christmas. Might be smart to plan ahead.

I haven’t heard back about the only plans I attempted for this coming weekend. I guess we are just sitting at home till the court date. That’s probably for the best.

I’m medicating and reading and trying to not cry or have a bad tone of voice. The kids are SUPER snuggly because they can tell I’m upset. I feel like I’m really getting to the point where I’m straining the amount of understanding kids should give their parents. This elimination diet has been rough in a few ways.

Luckily I’m on gluten, dairy, and eggs without a problem. I’m still wussing out about a lot of the high fodmap vegetables. I’m trying classes of food at a time. I should probably wait till after Christmas, chill on sugar, dairy, and eggs, and see if I can handle some of the known fruit/vegetable irritants. Have to get the body working better soon. Running out of time.

Too much to do. Can’t sit home being sick.

I haven’t looked around the house or the yards for all the projects I’ve made no progress on in months. I just can’t bear to look. I’ll get back to it. But it is hurting in the idle time.

I need to put together the travel trailer for one thing. Oh man.

I feel a lot better than I did. But I should stop typing. So much anxiety and sadness. I feel like a maelstrom about to explode.

This is one of those periods when I wonder “Is it really so bad if I back slide on some of my self-harming behaviors so that I have more spoons for dealing with the kids?” Robbing Peter to pay Paul.

If I went in the bathroom and cut my leg up I would have more patience and calm. I would be a nicer person.

If it’s ok for me to let doctors give me hormones to change how my brain works, why is it so fucking bad for me to do it with a razor blade for free?!

There are a lot more self-harming things I’m thinking about but listing them seems questionable right now.

I’ll sit very still and read young adult fiction. It’s “better”. I’m told.

Tone is absent

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For the record, I thought “Ha, ha, ha, no” was hilarious. Pam said it was really sad. Oh. Whoops. This is why I have no future as a funny writer. I think it is pretty funny how out of commission I am for sex. (For the record, my ankle only hurts when I’m sitting cross-legged and my foot is pushed sideways. It no longer hurts when I’m sitting in a chair or when I’m walking. Some improvement!)

I went to the grocery store with a FODMAPS shopping list and sauntered through Whole Paycheck practically kicking my heels together. I have so many new options!!! Nothing like extreme deprivation to make you think mild deprivation is awesome. (That’s a for-real-studied-phenomena. If you really get to thinking your life sucks. Take a deprivation vacation and you’ll think your life is awesome when you go back to it.) FODMAPS allows many types of cheeses and low-lactose yogurt and raw milk is probably fine so it barely feels like dairy restriction. No cream cheese or sour cream. Big whoop.

It also helps that Whole Paycheck can accommodate any weird food limitation/need so I was reminded that if you are rich you can eat no matter how annoying your body is. I constantly have feelings about that. I’ve been talking to a lot of the moms in the home school group about body-issues. Many have issues in the same league as mine even if they aren’t exactly the same and… they just can’t afford to follow what they know is “appropriate” for their body. They literally cannot buy the food.

I am so lucky at this stage of my life. My privilege comes from Noah. And I didn’t earn it. And I’m not better than anyone else. And I don’t deserve it more than anyone. I just have it.

I don’t know how to live with it. I mean, I’m living with it. But I don’t know how to be… sensitive? Appropriate? Not an asshole? I don’t know. I don’t have rich people skills.

Rich people and poor people talk about money differently. Not long ago I was talking to one of the wealthier moms and she mentioned that she was interested in buying a set of camping dishes like the set we had. I told her, “How funny because I think I’m getting rid of the set we have because it is too hard to pack due to size–want it?” She offered to pay me.

When poor people hand stuff to their friends, it is rare to expect payment (unless someone starts out saying “I want to sell ____” the expectation is that when you hand stuff off… you hand it off) but with wealthier people I notice that they often offer to pay for things. They want to feel less beholden.

I give things to friends a lot. I donate a lot of things. I don’t do a lot of reselling my stuff any more. Partially because I feel like a leech. I could extract money from the women around me when I have extra stuff, but most of the stuff came to me for free. I have plenty of money and extra. Why should I sell things under those circumstances? It seems… like the reason people hate rich white people. I have extra. I don’t need to wring pennies from people for my cast-off stuff.

But if I needed the money more I’d have no shame about selling stuff. I did it when Noah made a lot less money and there was more of a gap in the budget.

I just… I’m in a weird position and I don’t know how to handle it. I feel awkward when people give me a break financially. Last night the server didn’t charge me extra for the gluten free bread even though she was supposed to. I pointed it out to her. The guy on the Christmas tree lot undercharged me and I pointed it out to him. People are always shocked when I say, “Hey. You undercharged me. This is supposed to be +$10 and you didn’t get what you are supposed to get. Here.” Often they try hard to talk me out of giving them the additional money.

I don’t want to take from people. I don’t need the charity any more. Save your charitable impulses for someone who needs it, they will be along soon. I’m glad you want to be nice and all. If you don’t want me to pay for mine, can I pay for the next persons so you can let them have the benefit?

I owe the world something. I leapfrogged up the ladder so hard and so far that I need to not be selfish about landing where I land. I don’t need to act “deserving”. I need to be humble. Pride means it all goes away. I am so influenced by all the time I spent reading the Bible. (I’ve read that bastard cover to cover. Many parts of it I read many times.)

I spend time talking about the people in my life. I talk to my shrink, my other friends, Noah… I talk about the people in my life. I talk about my feelings and what my behavior should be. I’m not a huge fan of the golden rule (treat others as you want to be treated) I like the platinum rule (treat others as they want to be treated) but that takes a lot of thinking and work and making mistakes and trying other tactics. It takes processing.

One of my friends said something interesting to me about a situation I’m struggling with. She said, “Maybe she needs to not think about the road not taken. Maybe she needs to forget that they exist.” That was kind of startling for me. I… I’m not capable of not thinking about the road not taken. I’m completely fucking obsessed. I’m always in the mode of preparing for additional options. Other people… they don’t work that way.

Lots of people get through their days by putting their heads down and not acknowledging that there are other options possible. That’s how they endure.

I’m sort of vaguely aware of this. I have book learnin’ that tells me this is so. I think it is so fucking weird. But I try to understand people. I try to understand why this works so well for people. I don’t get it. I really don’t. But whether I get it or not, I can clearly see that it is the coping method of choice for many people. Oh. Yeah, that’s probably part of what is going on in that situation over there. Yeah, I would be quite distressing under those circumstances. Whoops. Crap.

I had a different conversation with a different friend about how we can manage our interesting overlapping PTSD triggers. I like treating these things like they matter and will take work. That way I don’t just hurt someone and then tell them to go away when we have overlapping issues.

Today I have lots of babysitting time and no ability to do outside work. I think today is a day for me to work on getting my book out to publishers. I have eight hours of babysitting today (in split shifts with more than one person) so I should be able to get some work done. That will be exciting. I haven’t made book progress in many months. I completely stalled.

Other than book stuff I can’t think of much I have to do today. The storm cancels out the majority of the tasks sitting here waiting for me. (There are many things I need to do… most of them are outside. Like putting together the travel trailer. I bought it then got really sick and haven’t had the physical strength to go move around the huge pieces of metal alone. I’ll get back to it. Damnit.)

I have made contact with a nutritionist who was recommended by a friend. She’s in Chico. She gave me contact information for people in Oakland and Berkeley. Someday some interesting people will move to Fremont. That day hasn’t come yet. Well… I’m here…

Another friend passed along contact information for a doctor who could help me out with fecal transplant, I just have to get to Portland, Oregon. (I do that pretty regularly.)

Being rich changes things. “Just suffer” isn’t really the same sort of situation. I have options that exist in the world. There are more things to try… if you have time and money. It feels crazy to me.

I want to talk to a nutritionist because I don’t really understand what the symptoms of having specific food problems look like. I was told yesterday that if dairy doesn’t give me horrible smelling gas I almost certainly don’t have dairy problems and I should reintroduce it to give myself more variety. (The person who said this has been to college for a medical degree so I’m less snotty about her telling me her opinion on this sort of thing than I could be.)

Why do I go back and forth between believing people with medical degrees more and hating them so much? Because it feels like they have the knowledge to help me it is just whether or not they think I am actually worth thinking about. I’m a hard puzzle. I’m work to figure out. They went to school to help them learn how to figure out puzzles like me. Most of them have decided that I’m too much trouble and I should be silenced. “Just eat more cereal” is a silencing sort of answer.

When someone tries everything they can think of and it all fails… I don’t get mad in the same way. I’m sad, but grateful they tried. I understand that different methods work for different people. I’m ok with the knowledge that some of the things I try will fail. I’m not ok with the feeling that the doctors don’t care very much and aren’t willing to try very hard. When someone isn’t willing to try very hard I hate them and hate them and hate them and hate them. I hate them with all the fury I normally reserve for my mother and father.

Because they don’t love me enough to try. Big theme.

My needs are too big. So they just aren’t worth trying to meet. Ok.

I have several tabs open on my Chrome screen for doctors I will call in January. That’s when I get my new insurance information. My neighbor has had a nightmarish journey over the past few years on her journey to a diagnosis of chronic pancreatitis. Her husband said she found a great gastroenterologist in town and I’m going to try talking to the woman. Worth a try. I’ll talk to the nutritionist in Chico (and hell, maybe the one in San Diego my other friend recommended). I’ll talk to the poop-transplant-doctor in Portland.

Because that is what privilege gives you. The ability to pay for the time of professionals. Sometimes it feels crazy.

I am very grateful that I get to keep trying things. That is such an unbelievable gift. That is hope all wrapped up in a shiny wrapping with a string.

I got to wake up and eat a cheese stick this morning. There is still hope.

What I’m sending to member services this morning

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Dear Member Services

Yesterday I went in for a procedure. I was not told in advance what procedure I was to be given. When I finally received an instruction set (after the appointment had to be rescheduled because I was given no prep instructions the first time) I looked up the preparation online. Looked like I was getting a colonoscopy–otherwise there would be no reason for three days of low fiber/eating practically nothing before the day of all liquids.
Yesterday when I got to the hospital they informed me I was not getting a colonoscopy. I was getting a sigmoidoscopy. Now that I have had a chance to come home and look up the difference between these procedures (and the expected preparation) I am completely furious. I feel mishandled and abused.
Why did I have to go through three days of practically not eating for a procedure that would only check 1/3 to 1/2 of my colon? That is not necessary. That is a terrible thing to do to me. And given the degree of problems with diarrhea I have, what I was just given was an incomplete exam such that I will have to go through this procedure again to check the rest of my colon.
I am so upset that I am crying and I haven’t stopped shaking in a day. I feel like Kaiser has demonstrated time and time again that they have no caring for their patients. As of January 1st I will no longer be a Kaiser patient and I will never come back in my lifetime. I’m tired of doctors treating me this way. This is entirely unprofessional, disgusting, and abusive.
Kristine Gibbs.

 

I hate Kaiser.

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So yesterday when I walked out of the GI department I was very angry. I was cursing and calling people (not the ones sitting behind the desk–my absent doctor) names. The GI department decided that the way to handle this was to call the police and report a threat. When I said, “I don’t need a card for the appointment I wrote down the date” apparently the woman heard, “I’m going to go stab my doctor.” That’s what she told the police I said.

I am incredibly upset about this. Holy. Fucking. Shit. On the upside, the police officer I had a long chat with told me that Kaiser does this.

Also, I got home to an email telling me that they are assigning me a case manager for “quality of care” reasons. I’m feeling scared. I don’t know if this case manager is going to exist to help me get medical treatment or help Kaiser keep me from being a problem.

In the past week Kaiser failed to call me for a phone appointment, failed to give me mandatory instructions for a major appointment (I mean SEVEN DAYS of prerequisites), and they called the cops on me. I am feeling so upset I have no words. I hate Kaiser. I hate Kaiser so so so so so so so so so much right now.

The doctor I saw tonight was not a friendly lady. It seemed as though she was very impatient with my shenanigans. Which bugs me. She told me to take wheat and dairy back out and don’t put them back in for another two months. Oh god. She said there is no point in restricting anything else. I feel… mixed.

They took a whole bunch of blood (six tubes!), I gave a urine sample, and they sent me home with stool collecting materials. Oh this should be fun. I’m actually thrilled this data will be there before the big GI testing that will be done on the 8th.

As I talked to the doctor today I complained about a previous plan of attack for a problem she said, “Well that is our system” and I said, “Yes but I am an individual human being and individuals rarely perfectly fit systems.” She shrugged. She is not my new GP. I’m happy about that. She’s just the person who was there today.

I’m still drinking pedialyte. They didn’t give a shit about my dehydration. My friends are freaking out. They actually look at me as time passes and they aren’t liking what they see.

The doctor told me that since I gained 30 lbs in the last year losing 20 lbs in the last two months is totally fine.

Oh really? I… Oh man. Really?

After all, a year ago they thought I was too fat. Now I’m really too fat. They don’t think rapid weight loss could be a bad thing.

I don’t care about 5 lbs up or down in a month. I really don’t. 10 lbs in a month is a lot. When I’m trying to eat as much food as I can hold and I’m *still* dropping weight like that? It seems concerning. That I gain weight when I stop exercising makes sense. That I lose weight precipitously when I’m not exercising seems more problematic. When I’m training for a marathon I lose weight and it makes sense. I don’t complain.

This isn’t that.

My urinalysis is already back. I’m very normal.

I just… can’t seem to stop feeling pain. I’m sure it is all my fault because I’m crazy. If I would just shut up everything would be fine.

 

I couldn’t make this shit up.

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I went to Kaiser. Her first question at registration: “Did you follow all the instructions?”

“What instructions?”

You can see where this will go. I didn’t have an appointment today. I will have one in two weeks. When I will be able to know in advance that I shouldn’t have Motrin for 7 days (totally broke that one) I will know that I shouldn’t eat fruits and vegetables or any other high fiber food for 3 days (broke the shit out of that rule) and I will give myself multiple enemas.

Kind of a lot of instructions to just not give me.

I sent my primary care physician an email telling him that I am very angry that I was given no instructions and I want a new primary care physician.

I don’t feel good. And now I just got a big fat middle finger from the idea of figuring out why I don’t feel good. This is my life. I am so angry. I feel yucky. I have had more solid poop, but I have a lot of abdominal discomfort. I have a lot of general pain right now. (No Motrin for SEVEN days? This is going to be really awful.)

Can’t I just cut myself and move on with my life? Why am I looking for “professional help” again? How is this helping? I am not a happy camper. I hate doctors. I hate doctors. I hate doctors. They don’t god damn help. And they perfect that sanctimonious “I know more than you” smile as they DON’T FUCKING HELP. I hate doctors so much. So so so so so so so so so so so so much. They don’t help. But they have a high sense of their own importance. Haven’t ever met a doctor without an ego problem.

I am so angry. So angry. Oh well.

Doesn’t matter.

All the woo.

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Apparently this wacky shit is “next generation NAET” which isn’t all that encouraging. But Placebo is one of the most effective drugs! So I’ll try it at this point.

The doctor found 23 reactions (some to families of things and we didn’t divide it up yet), which could be an allergy could be an intolerance could be… who the fuck knows. These things make my body react.

Foods: Eggs (found that one by myself!), dairy, sugars, wheat, oats, yeast, chocolate, corn, fruits, herbs/spices, msg, nuts, and oils/fats.

Me: Apparently I’m allergic to my digestive enzymes and stomach acids as well as some of my blood components, my hormones, and my neurotransmitters.

I’m also allergic to pollen, grasses, weeds, vitamins (particularly B vitamins… which I’ve been taking religiously “for my health”), and probiotics.

Cheers, motherfucker.

Supposedly many of these can be treated (with this wacky ass combination of acupressure and electromagnetic stimulus) to the point where they don’t bother me any more. If that is true, I’ll fucking try it. Kaiser just tells me to eat more Fiber 1 cereal so at least this sounds like a fucking plan.

When I got home I discovered that the groino from Kaiser I’ve been working with on the PMDD decided that she didn’t want to keep trying options and she referred me to psychiatry. I called psychiatry and said, “I use pot. Will I be treated or told that no one will treat me?” “Well, you will have to stop before we can treat you.” “Then let us not waste my time with an appointment. Have a nice day.”

I emailed the groino and told her I will not be troubling her with my problems again in the future.

So today we did “treatment” for wheat, oils, sugars, and dairy. I go back on Wednesday to see how well it took. Hopefully I will be able to eat in Hawaii. *cross fingers*

Also: he says I would be way better off if I permanently switched to raw dairy. I see his point. Even after treatment, raw milk is easier to digest–period.

Well, I’m trying to be hopeful but not stupid. It’s not a miracle. Nothing is. But it is a little hope.

Doctor schtuff

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Went to see the groino. She says she is not comfortable giving me what is essentially a blood pressure medication for mood management given that I have a long established history of very low blood pressure. So instead I am starting birth control pills. Which I find hilarious. I should bleed 3-4 times a year.

Let’s see how this goes.

(I’m putting this under doctors suck even though she was perfectly lovely. A very satisfactory visit. I shall go so far as to say nice things to Kaiser.)

Transition stuff.

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H’okay. I’m going to need to stop posting for a bit because I need to force myself to get some work done. I’m making checklists. I only have so many hours a day on the computer and I’m going to do shit that intimidates me for a while. Work on the web page.

I can work on a web page. I have a web page. Whoa. I still find this daunting. It’s not like it is hard. Only it seemed so hard for so many years.

I’m going to be splitting my blog stuff. There needs to be a kid-friendly space here. One that can be accessed from the front page or from a direct link. Once you go to the kid-friendly page it should be somewhat challenging to go to the rest of the website. Not sure how I’m going to set that up yet, I’ll be talking to Noah about my options. It is frightfully convenient living with him.

I do want to be able to talk about homeschool stuff more explicitly. I want to be able to talk about traveling with kids. I don’t want to toss it into the middle of my verbal diarrhea of self-hate.

It kind of weirds people out.

Boundaries, right?

And I have found the resolve within myself to take a good long hard look at our life and schedule. The road trip is ten months away. I am going to need to have a huge drawer full of spoons when I leave. I can’t be running a deficit before I even leave. Or I am going to end up calling Pam hysterically halfway through the trip and begging her to fly out to wherever the fuck I am to help me drive home. Like I did with Jenny in Arizona.

Thank you Jenny. I’ll be grateful for the rest of my life. If you ever need me I know for a fact I can be there in 72 hours. I’ve checked lots of options. There aren’t that many people I would drop everything and fly halfway around the world for but you are the top of the list.

(Err, when I was pregnant with Calli I went to Arizona to help a friend. I started having lots of contractions and they wouldn’t stop and it was mid-way through my pregnancy. I had two miscarriages in between having my children so early contractions were a serious concern. I couldn’t drive Shanna and myself home while contracting like that. So Jenny flew out and drove us home. I am so blessed in my relationships it isn’t funny.)

You know what? I know I have at least half a dozen people I could call at any time of the night or day. If I were truly desperate I could put the net out wider and probably come up with dozens of people who were willing and able to help me. Because I am truly blessed. (And because I could buy the plane ticket for someone. Having my own money means that the amount of help I need from someone else is very tractable. Thank you, Noah.)

It is weird living in this space where I feel like a lodestone for both victimization and for amazingly giving people. I have good friends. I am so lucky. I understand that not everyone is so lucky.

I’m going to start enforcing the rule that I don’t drive outside of Fremont more than two days a week. And we are going to stay home until at least 11am four weekday mornings. I have to stop having days where we are out of the house socializing/driving for eleven hours. This is killing me. We are out of the house for 8+ hours at least twice a week sometimes four times a week right now.

I want to know people so much that it is hurting me. Boundaries are good, right?

I need to save up my spoons. And I need to get work done. And I need to have lots of patient-at-home-time when I have the energy to help the kids with their projects. They can’t read. I can’t tell them they have to just do all the stuff by themselves. They needs help with directions. And uhm, I’m home schooling them not leaving them to school themselves. So I need to be more patient. And at home at least occasionally.

I’m not thrilled about this stupid insomnia tonight.

I should probably figure out how/when I am going to transition to travel screen time limits. I think I need to do it in advance so I don’t go through withdrawal during the first weeks of the trip. I’m going to be difficult to deal with as I go off my drugs. (Picture me tapping my arm like a heroin addict.) The internet is my friend. I am sad when I don’t have CONSTANT ACCESS. Not just sad… anxious. I use the internet to hide from real life and I know it.

I need to alter our schedule such that I am truly spending the amount of focused alone time I will have with the kids. I won’t have a garage to hide in for peace on the trip. I need to figure out how to transition towards creating the boundaries I need in different ways.

Although I am not canceling baby-sitting. That would be stupid.

I have to set myself up to succeed or I am going to fail. That is just how it works. It’s not personal.

Oh, and I started bleeding two days ago. How much of my shaking with need to self-harm was PMS? I really hate my body and my body hates meeeeeeee.

Maybe it is time to talk to a gynecologist about the mood swings around my period? Joint pain sometimes. Googling makes it sound like I incline in the direction of PMDD (Premenstrual dysphoric disorder). Here’s what Google tells me:

“The symptoms of PMDD are similar to those of PMS. However, they are generally more severe and debilitating and include a least one mood-related symptom. Symptoms occur during the week just before menstrual bleeding and usually improve within a few days after the period starts.

Five or more of the following symptoms must be present to diagnose PMDD, including one mood-related symptom:

  • No interest in daily activities and relationships
  • Fatigue or low energy
  • Feeling of sadness or hopelessness, possible suicidal thoughts
  • Feelings of tension or anxiety
  • Feeling out of control
  • Food cravings or binge eating
  • Mood swings with periods of crying
  • Panic attacks
  • Irritability or anger that affects other people
  • Physical symptoms, such as bloating, breast tenderness, headaches, and joint or muscle pain
  • Problems sleeping
  • Trouble concentrating”

I hate my body and my body hates meeeeeeeeeeeee! I feel very mixed about all the advice to treat things with nutritional supplements. The other big option is an SSRI, which… I don’t want for Reasons Of Misery. (btdt got the t-shirt and I want my $ back.)

Here’s an article on PTSD and PMDD. Maybe I should talk to a groino about Propranolol. Or Prozac. Would I be willing to try it again? Probably not given this line from the article “The fact that data have shown a 40% nonresponse rate to selective serotonin reuptake inhibitors in PMDD”…means I should take the fact that I’ve already had no luck with Prozac as a sign. But Propranolol seems to be slightly more effective on the population with PTSD. Would I take a beta-blocker? Could it be used sporadically as needed or is it a daily pill? If I was going to take a daily pill–should I just go on birth control? That’s hilarious given that my husband has had a vasectomy. 

I should go talk to my groino. I feel that I have been really clear about this massive spike in horrible symptoms right before my period for a long time now. My suicidal thoughts and self-harm urges go through the roof. There have to be options I haven’t tried yet. I have an appointment. Monday the 25th during babysitting time. I gave myself a nice window so I can ride my bike there and back. The internet is magic.

Lots of transitions. Lots to do. So little time. I need more spoons. The only way to get them is to cut things out. Just because you don’t like the choices sitting in front of you doesn’t mean you don’t have choices. You are always making a choice. Even if it is to follow the status quo.

I can’t be super close friends with everyone in the world. I don’t have the spoons. I’m not slamming doors, but I’m going to stay home more. I need to. We have stuff to do.