Category Archives: health

post-partum healing

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If you’ve been reading me since the poop chronicles this will seem like a normal/gross piece from me. If you think body information is tmi, maybe skip this post.

I have figured out the best regime for caring for my mutilated crotch post childbirth. The afterpains suck monkeys but my external bits are gloriously cared for.

Before the birth I set up a station in the bathroom. A big pile of cloth pads interspersed with Thinx underwear. I loaded up the different panties with pads and stacked them up on a shelf. I have witch hazel pads, “Bottom cream” which is a bunch of herbs and essential oils, a hand mirror, the peri bottle the hospital gives you, and a bunch of the softest cloth wipes I’ve ever found.

I start out by emptying the pipes as much as possible. (I’m living in a weird alternative universe where my body shits like a champ. I don’t know what the heck happened but it’s all coming out formed and perfect. I have mastered pooping! It only took till age 36 for it to just… work!) Then I use the mirror and the peri bottle to clean as much gunk/blood/poop as possible. The mirror helps. Because of the mirror I can tell you that my cunt is not nearly as fucked up as it was after ECs birth. That was… hamburger. Ugh. Three god damn hours of pushing in that birth. Ugh.

After the water I carefully and gently use a cloth wipe to blot the area. I don’t really wipe with this cloth. I just make sure there is no poop or blood clots hanging out. Then I get a with hazel wipe (like Tuck’s but a different brand). These are tiny and little. I wipe with these to get the edge of my vagina and my hemorrhoids clean. It’s important to geeeeeeeeently wipe the hemorrhoids. Leaving any bits of poop in there can lead to infection.

Then I use my finger and scoop out a big wad of the bottom cream. Ahhhhhhhhhh soothing. Of course I start in the front and slather my entire inner labia/around the vagina opening and then I make it back to my anus. Those hemorrhoids get covered entirely. Then I put on the nice Thinx panties with a cloth pad.

Ahhhhh. Soothing. Nothing abrasive. Nothing that irritates.

My crotch is so happy with my care. I want to pat myself on the back for being so nice to my cunt. Forward thinking on this plan is giving me so much ease and comfort.

The pad is taken off after 2-4 hours (the time span is getting longer) and the panties last an extra 1-3 hours past the pad coming off. The pad/panties are all nice flannel/cotton feeling. Disposable products give me rashes.

I truly wish I had figured out this system for the first kid.

Third time’s the charm.

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I have said for ten years that any amount of labor time under 24 hours would be easy. I was right! 21 hours were fine.

First: this could not possibly have gone so well without our wonderfully kind friend who moved in for a week so that when I had a full day of contractions and they petered out I had no extra stress about feeling guilty about prodromal labor. I got to ride the waves and take whatever experience. It was a gift. Thank you from the bottom of my heart.

My official labor got going around 8:30am on Monday. My contractions built in intensity and regularity all day. I went in around 7pm because my contractions were about 5 minutes apart and a minute long and consistently more than 10/hour. Mostly I was fretful because she had slowed her moving down and I was worried. It’s so hard not being able to see if the baby inside of you is ok.

I got to the hospital 3cm dilated (which isn’t that much and they could have sent me home) and 90% effaced with a bulging water sack. They wanted me to stay. Around 10:30ish they started Pitocin. The epidural was started around 11. Then I went to sleep. I was checked at some point. I was woken up/checked again around 4. During the 4am check the doctor accidentally broke my water bag because whoops it was in the way. At first she said 8cm. Then a minute later she declared me complete and instantly there were six extra people, lots of lights, and a whole bunch of beeping machines.

When my water was broken my blood pressure and her heart rate dropped dramatically. I was put on oxygen instantly. They started IV meds to support the baby.

Between 4:30ish and 5 I was in position and they started encouraging me towards pushing. Another moment of intense gratitude: my friend’s mom came to the hospital with us around 10pm. She was there talking and being supportive whenever I needed her. Her voice did sound above the crowd to give encouragement and feedback.

I might actually send out thank you cards. I’m really in awe of how people showed up for me.

The nurses also did a good job of giving feedback and support. But Ma’s voice was louder and more insistent.

Noah did a wonderful job of supporting me this time. He kept his face soft and loving the whole time. No grimacing at my pain. Well done, fantastic husband.

Ze baby emerged at 5:28am. I didn’t tear or get a skid mark or nothing. I am shocked by how relatively comfortable my external genitalia feel. I’m sore but it’s not bad. Internally the continued contractions to get my uterus back to size suuuuuuuuuuck. And why don’t I take 400mg of Ibuprofen three times a day and I wont have pain, right?! Oh man.

Several folks, including the lactation consultant, asked me about my THC usage. We clarified that I don’t smoke it basically at all (inhaling it is one of the most dangerous steps–we know there are problems from breathing smoke) and I went into details about why I use it and what I have replaced with it and why my medical team thinks this is the best choice for me. I was rather stunned by the extent of support I received. Most folks were like, “You are clearly very educated on this topic and you are making the best choice for your body. Alright. Excellent.” My pain management doctor telling me that my next line is Oxycontin and Ativan really helps. No one wants me on those meds. Definitely not when I’m breeding/feeding a kid.

I didn’t find out till we got home that one pediatrician had a judgy conversation with Noah about my THC when I was out of the room. I’m tempted to follow up on that because it might be a HIPAA violation for her to discuss my medication without me present and that kind of bugs me. What if I had been using birth control behind my husband’s back and she just wanted to mention that it might impact my baby and I am going to go home and get in trouble? You don’t report on other peoples medical care when they are not present. That shit’s not cool.

What if my husband didn’t approve but it was still the best mediation option and now he is going to make my life a living hell? That’s very realistic.

Anyway.

The baby feels slightly more fragile to me than my previous kids. Specifically: she’s having trouble with reflux. Her first whole night of life I barely slept because she would spit up, fill her mouth with fluid, and be unable to do anything about it. She couldn’t move her head to let it fall out and she couldn’t swallow it. So I spent a lot of time flipping her over and clearing her mouth. The lactation consultant agreed that putting her in the bassinet would be stupid. She needed to be up against my body with me paranoid and watching her. It was a festive/non-restful/wonderful night. Oh, I sent Noah home so he could sleep because otherwise we would both be exhausted and useless.

8:30am-5:30am. 21 hours. It was great. The first day of hospital recovery was lovely.

She was 20.5″ long (so .5″ shorter than the two older kids) and 8lbs 9oz. So heavier than both siblings, who were 8lbs and 8lbs 4 oz. I am steadily gaining 4ish oz per kid and that’s a great time to stop. Ha.

It took us till 1pm to secure check out because the hospital kind of wanted me to stay an extra night. But I got shifted from the maternity section to the pediatrics section and I kind of fell out of the “we will pay a lot of attention to you” rotation and that was difficult for me. I didn’t feel good about calling my nurse all the time to get the same care I had previously gotten for existing. So I didn’t drink or eat almost at all the second day in the hospital because she wasn’t offering anymore.

That was suboptimal. I came home and scarfed a big bag of salami because I needed protein before I killed someone.

Our friend went home last night. Her dog was experiencing a lot of stress from the new rules with a baby. My house had already been hard because there were more rules than usual and it was just not fair to keep cracking down on her. I am so so so so so so grateful my friend stayed as long as she did. The dog’s behavior was great. She never did anything inappropriate. She was just done with the restrictions. I would have flipped out long before she did. Such a good girl.

I tried to tell Noah to watch the baby and let me sleep in between nursing last night. Ha. That uhhh… didn’t work very well. He did a 7.5 hour shift and I probably got 1.5-2 hours of sleep. Sigh. It’ll be ok. I will sleep today.

It is fascinating to me how excited and complete I feel. I am so happy I get to learn about this wonderful daughter. She gets cold! Like me! She shivers a lot. She needs a fair bit of bundling in our frigid California weather. Ha. I really can’t tell who she looks like yet. She looks like a whole new person and it is so neato. She’s beautiful and I feel completely overwhelmed with gratitude that I get to keep her and take care of her. She is my responsibility. I am allowed to love her with my whole heart.

I can’t express what that means to me.

I don’t feel sad about wanting more children. I feel like I am at my limit emotionally and physically. This is my family. This is what I want/wanted. In the future I will have the spoons to foster, but I don’t think I will ever take on a baby again. This is my journey.

I feel so lucky.

Big kids are ecstatic. They are snuggling her and talking to her and trying to learn how to be helpful. It will be a process and I’m glad to be on it with them.

I get to have two daughters and a non-binary kid. I get to have a husband who thinks I am the best thing since sliced bread. I get to have friends who show up to help me and support me through complications and challenges. I get to have a home I am allowed to alter and be safe in however I want. I get to have healthy meat and vegetables every day so that my body achieves a level of functioning I didn’t believe possible for me.

I can’t believe this is my life. I am one of the luckiest people ever born. I have so much. I am so grateful.

I am glad I am still alive for this feeling.

Ze baby has already had 8, maybe 9 poopy diapers and 2 or 3 wet diapers. I’m getting confused already. This is a great sign though. Her digestion is working. Her kidneys are starting to function as we hoped. We have a pediatrician check up in about 6 hours.

This is going as well as something can go. I am eternally grateful.

Random note: to the best of my knowledge my child is the only person in the entire world with her legal first/last name combo. I will do my best to never put it on the internet for her. That will happen when she chooses.

Notes from today’s visit

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I am on day 4 of a nasty headache. I am not overall prone to headaches so this is concerning in my 37th week of pregnancy. We used Noah’s blood pressure cuff and got a reading of 134/77. That is not generally speaking high but I am usually between 105 and 120. I called the OBs office and they asked me to come in for testing. Sure, fine.

First question: “Have you taken Tylenol?” First answer: “So I have fibromyalgia and over the counter medications ceased being effective years ago.”

That was received with full respect.

I got hooked up to monitors so they could check on the baby and on my blood pressure. I spent 3 hours just hanging out so they could see how it’s going. They took blood and urine samples.

I’m fine.

When I was leaving I had a great chat with the nurse. She was a really nice lady. She asked me if the blood pressure cuff at home s electric and I said it was. She asked if it has been calibrated lately and I said definitely not. She told me not to use it again because these devices are famous for getting out of whack and once the medical team have a number they have to show concern.

Totes legit.

The nurse and I had a long chat about my labor plans. She was super nice and gave good advice. She was frank about the fact that some of the nurses on staff are going to push me in directions that make their job easier not my labor easier. She told me that it would probably be wise to have my husband prepared to advocate for me. I shared with her that I spent some time articulately screaming at my nurse during my first labor when I got bad advice about pushing and she grinned. She said I’ll do fine. She said she was really happy to hear that my birth plan is, “Let’s see what happens and consult with professionals in the moment because who the fuck knows what the right plan is.” She said with that attitude (and an open mind towards medication) I am very likely to leave feeling satisfied with my experience.

I need to go find my advance health care directive and bring it to my appointment with my OB tomorrow so it can be scanned and added to my permanent medical record. Sounds great. I paid for one. Might as well use the fucker.

I notified our labor support people that I was doing this testing but it probably would go nowhere and then I checked in when I left the hospital saying I was right, no one’s day will be interrupted.

The nurse and I chatted a lot about having kids with ADHD and dyslexia. That was fun. Her kid is in college now so it’s a whole new ball game.

She was super cool about my marijuana usage. She noted that it was on my chart and totally fine. She kind of hinted around asking if I was using extra to deal with the headache and I said, “I am trying to reduce my usage, which is causing my general pain levels to go up, because once the baby comes I have to be on a lower dosage for a while to increase my alertness. It’s a rough balancing act.” She nodded and said that sounds great.

All in all, an uneventful peaceful trip to the hospital for some necessary checks. Everything is fine. I’m very likely to wait another two weeks.

Now if only I could get rid of this god damn headache.

STOP COUGHING ON ME

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Everyone in my house has a cough. I went and bought cough medication/treatment for suppressing it. They don’t want to take it. Instead they want to not cover their mouths and cough on me all day long.

I am going to be a raging bitch if I have a terrible wracking cough when I am in labor. That is Not Fucking Fair.

Oh yeah, that’s why.

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Every so often I go off my meds for stupid reasons. Forgetfulness, or self-punishment, or feeling ashamed of myself for being a drug addict.

I forgot a full day of meds in the past few days. Whoops. That’s why I’m feeling so god damn bad. That’s a lot of medication missing from my system.

The medication that lets me: eat, sleep, feel less pain, have more of a pause in my brain so I don’t panic, feel less suicidal, reduces overall anxiety, reduces stomach pain…

Sure. I’ll just stop. And see what happens. Because “If I really cared about my baby I wouldn’t give them drugs.” So it is better for me to be unable to eat solid food. It is better for me to violently vomit up my attempts at solid food rather than use this medication. Better that I wake up every 20 minutes all night long crying from pain. Better that I feel like I should die and I am so consumed with managing that obsessive thought that I pretty much cease all other meaningful work. Better that I be in so much burning stomach pain that anything I eat or drink makes me cry. Better that I have nothing but burning diarrhea because my body cannot handle the amount of stress it is feeling and it flushes everything as fast as possible.

Because if I cared about my baby I wouldn’t use drugs.

If I stopped using drugs I’m not sure I would live to see the delivery. Would it be ideal if I didn’t need drugs? Of course. I wish I could do ok without these fucking meds. They are expensive and taste like shit. But my life isn’t usually full of me getting to choose just what I would like to do. My life is full of a lot of “What do you have to do?”

I have to be able to function. I have not been able to think much this week. I’m dropping balls all over the place. I’m not responding to emails. I’m missing appointments. I’m not doing mandatory online work that is supposed to happen.

I’m just sitting around feeling like a pile of dog shit. Because I was stupid about taking my meds. Missing pills has consequences. But it’s hard to take them all and not feel ashamed of myself. It’s a totally fucked up system.

But after almost a full 24 hours of being fully medicated as I should be… I’m hungry again. After days of not eating. Do I want to need this medication? No. But nothing else has ever worked.

I need to stop opening the fucking cannabis threads.

Very little sleep

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My whole god damn body is an explosion of pain. I feel like I am minutes away from vomiting and I’ve felt like this for hours. I try to sleep and my shoulders hurt so bad I wake myself up every 20 or so minutes.

My massage therapist won’t work on me if there is ANY illness in my house because her mother is very elderly and sick and at risk. It’s totally reasonable for her to have this boundary but it sucks to be me. So I didn’t get work last week and I won’t this week. I may need to look for another massage therapist and that’s not a pleasant thought right now.

I think I’m spiking a fever based on the fact that I’m so hot I feel like I’m about to burst into flames. I am so hot I am sitting in my currently unheated house naked. This Does Not Happen. My breasts feel like little fire balls.

I’ve had terrible diarrhea all night.

I’m really over being pregnant. And this whole damn sick season. This fall/winter has been so brutal. My kids haven’t had more than a week or two of consecutive health since October.

But once I turned the humidifier and air purifier on in the bedroom FMC stopped coughing. So there’s one tiny victory… Haven’t heard a cough in hours.

Stripping my clothes off did help me feel slightly less on the verge of immediate vomiting. Ugh.

Didn’t puke till 8:20. wooooo

Oh phew

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Got a call from my OBs office. I show no signs of the liver issue they were worried about. No reason to assume I will have to deliver 3-4 weeks early. Yay! A fully cooked Lightning is a happier Lightning!

current medical dump

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I’m really itchy. Apparently that’s a problem during pregnancy. I need to go in at 7am for a fasting blood draw to see what is going on with my liver. Hopefully all will be well. If things aren’t doing what they should do I will have to deliver in week 36 or 37.

In 11 days I go in to see what is going on with LIghtning’s kidneys. As of the last time I checked they aren’t where they need to be and there might need to be a pediatric urinologist on hand for the birth. The pediatrician will have to know about this possible condition before birth.

My massage therapist says she is feeling arthritis develop in my hands.

My massage therapist fixed the fucked up groin bits! God I love her. She’s a miracle worker.

I’m now taking Zantac. I slept better with less acid reflux. Let’s see how long one pill does anything for me… (I don’t take most over the counter medications because of how fast my tolerance climbs. It just seems… silly.)

My chiro says he is surprised by how much strength I am still able to demonstrate. Even though I don’t feel like I’m exercising “enough” I’m clearly still doing something that’s good for me. Yay for sit ups.

I’m going to place several huge orders with my dispensary this week. As of January 1st the laws on edibles in my state become absurd. And they are more than doubling the tax. Wheeee.

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.

Apparently it depends on how you phrase things.

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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.

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.

I do some weird things to avoid feeling weird.

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I now have 28 weeks worth of drugs in my house. Because I have 20.5 weeks to go until I’m done being pregnant and I’m super uncomfortable going to the dispensary when I’m really pregnant and I barely leave my baby in the fourth trimester. So… I will probably go back one more time in the next week or two before I get any bigger to buy another 4-5 weeks worth of meds.

It’s like prepping for the road trip.

That’s a really lot of drugs to buy in like 4 shopping trips. I assume the folks who work there think I am either a MASSIVELY heavy user or that I’m reselling.

Actually I’m staying on the lowest consistent dose I’ve managed in years…. I kind of love buying my drugs this way because I count everything out super carefully and I package things up so that I don’t get too heavy handed and use it up too quickly. When I buy like this, I’m deciding for 4-6 months EXACTLY how much I get in a day. The only way to get a day that is a heavy use day is to balance it with low use days.

It keeps me within the range I think is optimal.

I wish this was the kind of thing that medical people patted me on the back about instead of clutching their pearls. I am able to buy 6 god damn months worth of medication and eke it out even though it might be super fun to do it ALL in a month. I don’t do that because this isn’t a party fun thing it’s a medication that keeps me functional.

Why isn’t that perceived as different from addiction?

Sleep study part the first

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That was… fine. Just the initial consult. She said that I have an extremely posterior jaw and a narrow throat opening and that doesn’t bode well. With allll the symptoms I have I am definitely in need of an in office sleep study because they need to check so many factors.

Treatment is likely to have three options. The easiest and most obvious is a cpap. The only trouble is… I’m a fantastically active sleeper. I roll and kick and move all night long. I’m ridiculous. I have no idea how I could manage to stay attached to a damn hose. The second option is a dental appliance that would shove my jaw forward and keep my throat more open. I am so sensitive to all the braces and mouth guards and what have you I’m already supposed to wear that I imagine this is going to be painful. She said it often causes TMJ problems and I said, “I already have TMJ problems.” She winced.

Third option: surgery! There is the possibility they might want to cut hunks of flesh from my throat! DOESN’T THAT SOUND FUN?! And it might be really wise to go back to the orthodontist who wanted to crack my jaw then wire it shut and follow through.

The next few years are going to be really shitty. Maybe we won’t be moving if I’m in the middle of a bunch of medical treatments that really need to be followed through to completion. Fuck.

But how much pain do I want to be in for the next few decades? Sleeping would do a lot to decrease my pain. Just by itself. It is restorative and I don’t get it. That’s a problem. What would it do to my ability to control my mood?

Fuck. I don’t have good choices ahead of me. Can you imagine trying to homeschool two children while trying to care for a baby with your mouth wired shut for three months?

Maybe it’s time to break out the ASL videos and start practicing. Fuck.

Fuck. Fuck. Fuck.

WHY AREN’T THE CHOICES ABOUT MY BODY MORE FUCKING FUN?!?!?!

I’m going to go cry now.

Next this afternoon we get to go meet EC’s possible new shrink. Onwards and upwards.

Please, if anyone upstairs is listening, please let me give my children all the tools they need to survive being in this world as my child. Please.

Random physical yuck

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I asked the sick person to not come to the party yesterday because I was concerned about a different party guest who is having surgery in a week.

So I woke up feeling like shit anyway. I’m so dizzy it hurts. My head hurts. I feel really sick.

Karma.

Moar doctor

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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.

Another ultrasound

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The tech was… not warm. She had crappy bedside manner. But I have pictures of Lightning. The tech inappropriately told me that she saw nothing wrong. That’s supposed to come from my doctor. But that’s fine. Likely no Down’s Syndrome.

There’s a part of me that is feeling angry about people being relieved my baby is any way. However they come out is how they are supposed to be and fuck you very much. Are there some ways of being that create more work in the world? Yes. BUT WE LIVE IN THE FUTURE AND WE CAN AFFORD THAT SHIT SO STOP ACTING LIKE PEOPLE ARE SUPERIOR BASED ON HOW ACTIVE SOME PARTS OF THEIR GENOME ARE.

I just…

It’s bothering me. Like it would be The End Of The World And The Worst Thing if my baby were born… dunh dunh dunh… abnormal.

Guess what motherfuckers. We’re abnormal.

And lots of people in my family are disabled in one way or another. I’m not real open to the perception that we should be sad about any of us existing.

Reading White Trash and looking at the genetic stuff that likely comes from poverty and trauma…

GAH.

I would not terminate a less than “perfect” child. I will embrace them and figure out how I need to grow and change to support them in their path to independence. That’s my job.

I’m in this with them until I can’t be anywhere any more.

That’s the deal.

Dr Notes again

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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.