Category Archives: doctors don’t always suck

The “sick enough” dance

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.

On busses and hurricanes

Yesterday I had a visit with the pain management doctor. It was a brief check in. It did not quite go how I expected on a few levels. He’s very interested in the totality of my health so he asks a lot of questions about my mental health. I was blunt in saying that I’ve been very depressed. He got really intense and asked me what is going on?

I told him that my husband and I are in a rough spot in our sex life. That things have been rocky on and off in that department from the beginning because I am so fucked up.

I started crying.

The doctor did this thing where he swelled like a lizard trying to intimidate a predator. He started saying with great emphasis, “YOU ARE NOT TO BLAME FOR ANY OF THIS. THAT’S NOT OK. BAD PEOPLE DID BAD THINGS TO YOU. YOU BEAR NO RESPONSIBILITY FOR THESE RESULTS.”

He tried to present a metaphor to me about who is responsible for sexual health and that kind of failed when I rattled off loudly and emphatically that if you don’t ask someone’s STD status and you choose to not wear a condom… you kind of deserve what you get. He didn’t think I would feel like that at all.

He decided to switch gears and explain this a different way since I wouldn’t go along with his beliefs about sexual responsibility.

He said, “Ok fine. Imagine you are a bus. Your responsibility in this life is to drive the bus and stay on the road. Well guess what? Your bus happens to be going through a hurricane. The hurricane isn’t your fault. The hurricane is what other people have chosen to do to you and there is nothing you can do about it. You just have to stay on the road. That’s your task. You can’t control how hard the winds buffet you and you can’t control how much debris whacks the outside of the bus and you can’t control if pieces fly off the bus because of outside elements attacking your bus. Ok, you with me? Ok. Here’s my point: YOU KEPT THE BUS ON THE FUCKING ROAD NO MATTER WHAT HAPPENED TO YOU.”

He then asked me if I had disclosed about my background before I married Noah, essentially… was I allowing him to have full consent when he married a crazy person. I said oh yes. I told him all about my fucked up history and mental illness and my issues. I mean, as best as I could.

He said, “Then it is your husband’s fucking fault he married you and he NEVER GETS TO BITCH ABOUT YOU HAVING PROBLEMS.”

I felt… completely stunned. I was sobbing at this point. I don’t think I have ever in my life had a doctor explode and swear at me so much. That was fairly shocking. Holy tomato. I mean, I swear… but doctors don’t usually swear back.

He told me that he has trauma in his background… not like mine but really severe trauma of a slightly different kind. He looked rather haunted when he referenced it. He did that brief almost hollowed out looking thing that people do when they think back to the ghosts that haunt them.

He told me that it isn’t ok for people to be angry with us for coping with what was done to us by bad people. If we react in a bad way at some time… it’s not our fault. We are doing our best to cope with what has been thrown at us and no one gets to judge us for this.

I told him that being married to a mentally ill person is very rough even if no one is to blame. He glowered and said that even if it is rough they don’t get to bitch. This is what they signed on for.

I just… kind of stopped arguing and kept crying. Because goodness. I don’t agree that mentally ill people are never to be held responsible for their behavior. That’s fucked up.

But Sarah’s probably right and I’m taking on a bullshit level of responsibility here.

I came home last night and told Noah that I’ve been having the thought process that… I didn’t cause the shame he feels about his sexuality. But I did fail to heal it and that was something he dearly wanted our marriage to accomplish. And I feel like there is some element where he is very upset with me for failing to fix that. But I can’t. That’s not in me to fix. That’s not about me, not really. That’s not even about how often I fuck him. That’s bigger than me. That’s bigger than me having physical problems.

If we could both get past feeling so bad about ourselves… it wouldn’t be a big deal if he wanted to masturbate with/near me when my cunt is not up for sex. I like mutual masturbation a lot. I think it’s a great game. And frankly… when I know I’m really not expected to take my pants off I have a lot of fun playing with a cock. They are neat. That’s not something I react negatively to. When I feel I really don’t have to take my pants off.

But that’s the rub. I self impose this feeling that I’m bad if I don’t escalate the sex as quickly as possible.

The pressure doesn’t come mostly from Noah. It is about what I feel is mandatory.

And given that we have records going back to day one of our marriage… I think we can count on our fingers how many months we have skipped sex in 11 years (including that 6 month road trip). There is no case whatsoever for sexual withholding. That is just literally not happening. We don’t have sex 2-3 times a day like Noah would prefer… but Jesus H Christ on toast.

Most bad months we still have sex 2-4 times.

Noah has genuinely never had to cope with a real drought. The longest periods of celibacy we have experienced are immediately post-partum and if you want to complain about that I get to beat you until you are black and blue because MY GOD DAMN CUNT WAS RIPPED APART AND YOU ARE A STUPID SELFISH PIECE OF SHIT IF YOU DON’T FUCKING CARE.

That’s the one time in my life that I will defend my pussy like a god damn honey badger. You don’t get to complain that my cunt isn’t performing well enough right after I give birth. Fuck you all the way to hell and back. NOT OK.

I know women who were not ok with having their cunt touched for a god damn year. I wait like 3 months.

No bitching about my post partum recovery time. Ever. Ever. Ever. Ever. Ever. Ever. (Not that Noah has ever complained. He was willing to try when the doctor gave us the go ahead with the first kid and I declared it a failed attempt and made him stop and he was patient until I was ready to try again. He did not ask to try so early the second time. Noah actually did just fine in this department. So my ranting is at the generic universe and isn’t about him.)

Yesterday when I was talking to my various medical people (acupuncture, pain doctor, and sleep people in one day) and they asked me about how my marriage is going… I was conscious of how much of a problem it was that my former shrink thought Noah could do no god damn wrong and I needed to always compromise in his favor. I said, “He’s a good husband but he’s a person so he screws up sometimes.” That got nods and acceptance. That’s a much more fucking realistic picture of him.

He is a good husband. But he’s a human being so he fucks up sometimes. That’s not the end of the world. I don’t reject people out of hand for fucking up sometimes. That’s life.

But sometimes I cope very poorly with the set of skills I have within me. I cope in ways that hurt me and people around me because I don’t have a better way of handling what is happening to me. Sometimes all the ways I have to cope seem to fail and I feel like I need the big guns and those are never fucking pleasant to be around.

I don’t always cope in nice ways that make other people feel comfy and happy. Sometimes I just keep the fucking bus on the road and that’s the god damn best I can do.

The doctor got really quiet and intense near the end of the appointment. He looked at me for a long minute or so. He said, “I hope you understand how impressive it is that you are still here. The problems you cause by being here are nothing to compare to the miracle of your presence. Most people would die if they went through the size of hurricane you went through. You may not always be convenient, but it’s not your fault and I’m really glad you are here.”

I don’t know that I’ve ever had a non-psych doctor make me cry like that. That was so intense.

Apparently it depends on how you phrase things.

The sleep doctor wrote a long impassioned plea to the insurance company about why she believes I REALLY NEED to try a CPAP machine given my constellation of problems and she explained in great detail how trying this is cheaper than all of the other tests and follow up stuff she is going to ask for if they turn down paying for a CPAP.

They are paying for me to try a machine.

I feel stunned by the medical system not being the biggest douchebag possible.

I go in for that fitting next week. I’ll try just about anything to see if it helps. It’s not that I’m unwilling to look for solutions. It is that so many of them fail.

Moar doctor

Pain doctor yesterday. The previous visit was the “shit you are so low” visit. This was the “shit you are so high” visit. We looked at inflammation markers and heart disease stuff. Apparently I have that thing where your body produces a fair bit of cholesterol regardless of what you eat. I was told that if circumstances were different he would want to address that. But my cholesterol level is so low that he wants to encourage me to eat anything I want.

I feel like I’ve landed in the twilight zone. A bunch of medical providers are telling me to EAT ALLLLL THE THINGS. JUST EAT. DON’T WORRY ABOUT IT. JUST EAT. AS MUCH AS YOU CAN. AS OFTEN AS YOU CAN. I didn’t know doctors were capable of saying those sentences. It’s surreal. Even during my previous pregnancies and I was vomiting constantly I still got push back about “not eating too much”. Not this time!

EAT ALLLLLLL THE THINGS.

I now have a list of supplements to go buy. I want to cry. No more.

I’ll take them. But I’ll whine too.

Dr Notes again

We are still going through test results. Today consisted of a lot of him (pain doctor) going down a list of vitamins, minerals, or whatever your body is supposed to have and saying, “Barely in normal range but it’s so low I’m worried” or “Totally deficient” and a couple of times he dropped in, “Ok, it’s a little weird but ____ is normal. Hunh. I wonder why.” For example, my amino acids are doing great and that baffles him.

But I’m deficient in most places. Especially B and D.

I have to come in to the office twice a week for ten weeks to get intravenous vitamins. I want to cry. Other vitamins I can take sublingually. Some are going to be liquids. A few chewable that I’m supposed to just suck on forever.

Sigh.

But very few new pills! That’ll be good!

He says my GI tract is so fucked that I can’t absorb vitamins almost at all and that’s why I’m so deficient. Given the decades of diarrhea that seems legit to me.

I point blank asked about exercise, Blacksheep. He said, “Walk. Don’t jog. If you are feeling REALLY good and you want to walk a little fast… maybe… But DON’T JOG. YOU DO NOT NEED TO RAISE YOUR HEART RATE. Just move around.”

Which is exactly what I’ve been trying to nail down for advice. Tell me what my limits need to be because I think my limits are…  not where other peoples are.

I’m going to have a more boring couple of years, here.

I had a somatic therapy session today. That was good. I spent time working on my ridiculous need for validation. I talked about my codependency. I cried a lot. Lots of grounding was done.

Appointment notes

Midwife said “Well your sugar level IS healthy…. but it’s incredibly low. You should probably be eating every two hours. Preferably protein.” How much you wanna bet they are going to get hysterical in a few months about gestational diabetes and BUT DON’T EAT SUGAR. Bah.

[I went and looked up low hemoglobin. Turns out it can be caused by… duh duh duh… low folic acid! You know that thing that I had tested and it said I can’t absorb it like I’m supposed to? Like that.]

She was not real keen to accept my marijuana usage. Luckily it’s not up to her. She’s not the OB. From the gist I’m getting from the midwife and the other OB I talked to… I think the dude OB I’ve been assigned to is going to be completely chill about my pot. Luckily when I spent a while going off on my various medical diagnoses and the reasons I use pot and I detailed that I fucking have tried more “acceptable” drugs and none of them work for me… She backed off. And she contradicted herself by saying that the salves are fine anyway. She uses them herself. And she gives her dog cannabis because he’s a little excitable.

BUT I SHOULD GET OFF THIS MEDICATION BECAUSE OH MY GOD.

Pregnancy is a festive time.

I heard Lightning’s heart beat. Right around 160bpm like it should be. Yay.

I now have… three follow up appointments. Because of course I do. The first is tomorrow.

Since I didn’t note it yesterday about seeing the pain doctor: I was kinda pissy because he didn’t let me know that he hadn’t gotten more results in. So I drove to San Jose, waited a half an hour past my appointment time… to be told I don’t really get much new data. I let the front desk staff know how unhappy that made me. I need a phone call the day before my next appointment or it is really stupid for me to hurt myself driving down here for nothing. It’s not a casual trip for me.

The only thing he talked about new was Epstein Barr. Apparently I’m still showing up on tests like I have active Mono. Isn’t that exciting? It would explain some of my chronic exhaustion. He wants me to do antivirals. Which can’t happen during pregnancy. He wasn’t crystal clear about whether it can happen during breast feeding or not.

I’m staying up because I have to fill the last tube with spit. I feel like I spend half of my day in medical appointments, dealing with medications, or taking fucking medical tests. It is so exhausting.

But I continue to be a wacky form of “healthy”. “Wow you are in good shape.” That’s complicated.

Oh, and I’m definitely negative for Syphilis.

Notes

Today’s doctor visits were lovely. The pain doctor is going to become my favorite medical provider of all time if he keeps going like this. He’s upset with the psychiatrist I fired last. He thinks it is fucked up (not the word he used) that she did a genetic test on me that showed I wasn’t processing folic acid but she didn’t bother to find out how deficient I am and she didn’t recommend supplementation. Folic acid deficiency can wreck your mood all on its own. And she KNEW I had it but she was way more focused on getting me on heavy psych drugs. He asked me, “Did she know you were trying to get pregnant?” I said, “Yup!” He put his head in his hands and stayed that way for a few seconds.

That right there is enough to make me want to kiss his feet.

He was upset that my shrink is so anti-pot that she told me that 3 hours of sleep is fine. He said he doesn’t want me on anything else for sleep, no sleep aid. BUT USE THE POT. He told me to stop feeling ashamed and medicate how I need to for myself and my baby’s health.

I’m going to be having words with my shrink.

He went through why he believes that pot is the best choice for me. He had specific reasons. He went through other medications that I “could” use and he flat said that he wouldn’t give any of them to a pregnant woman and he’s upset that other people want to. He said, “I know that I have colleagues in the medical field who are not convinced about pot but I am. It is the safest medication we have for your issues.”

He used to be a pharmacist. He can go off on drug side effects all day.

Do you know what he did after going through my test results with me? Order more tests! Because these results mean that he knows which questions to ask next! He won’t be giving me any supplements or treatments till he has a whole cascade of questions answered!

I want to kiss his feet.

He’s starting to outline treatment option possibilities but he’s very clear that he’s not sure where he’s going yet. (I love this man so much.) He is being super specific that there are a bunch of treatments that might be useful that he won’t do till after I give birth. But he’s got a bridge plan to get me there. Stuff to start out with. Gently encourage balancing instead of brute forcing.

I want to kiss his feet.

He told me “Stop listening to people who tell you that pot is wrong. It may be wrong for someone else but it is right for you.”

I feel pathetic that I feel like a drought stricken plant being hit with a nice rain storm.

A doctor isn’t telling me that I’m bad for not wanting to take drugs that make me feel worse. A doctor isn’t shaming me for doing something that helps with my pain and my psychological problems.

And he isn’t pussy footing around and refusing to give me a sleep study and telling me to “Try Zyrtec”.

I feel respected. I feel like this is medical care for me.

Then I went to my woo nutritionist and said “Noooooooooooooooo mooooooooore pills. Can’t. Nope.”

She said, “That’s fine. We’ll do this and that and you’ll put some in juice and some in a smoothie and you’ll be great.”

Fine. I can do a smoothie a day. I can do a cup of juice with powder in it. Sure. That’s less likely to make me puke.

I am at the point where my body associates meal times with pills so my body is starting to gag as I get hungry in prep for the pill madness. It has to end.

I also spaced out the next appointment so I have time to be less than perfect on dosing all the medication daily. Ahem.

Then I went to the dispensary and noticed that I have gotten my pot consumption down to a practically economical $250/month. I feel I’ve been doing well with two pills a day. I’m relatively stable. (That means I actually spent less than that over the past 6-8 weeks because I’ve been not doing the night pill because I’m ashamed. So this is good.) This is a lower place than my tolerance has been in a very long time. This is great. I’m excited.

I don’t feel good. I’m tired as fuck. But I feel hope. It’s a nice feeling.

I had an interesting conversation with the nurse who drew my blood. We talked about what “healing” the body means in context of developmental trauma. I told her, “What does it even mean to “heal” someone like me who never had periods of normal or good health from birth?” She had never read books about developmental trauma. I recommended several. I told her, “In your job, in this office, a huge percentage of your patients are going to be here for trauma whether they can word it that way or not.”

She blinked slowly and had an intense look on her face. She said, “I’ve never thought about the things you are talking about. I have literally never considered what it does to the body to be traumatized so young. What are those book titles again? I need to write them down so I can read them.”

I feel I did a good thing today.