Category Archives: health

The Appointment

The appointment actually wasn’t horrible.  I think my anxiety was the worst part of it, really.  My hands were shaking so badly it looked like a five-year-old filled out my paperwork.

I saw a nurse practitioner at this practice, and she was really good.  I don’t know what it is about them, but I very often have better results with NP’s than doctors.  They tend to have better people skills, in my experience.  She actually mentioned she’d read my chart the night before!  I think hell may have frozen over–I’ve never had a medical person read my chart prior to walking in the door.  She’d also done some research on UC because she wasn’t familiar with it.  So that won her big points right up front.

She was also respectful of my trauma issues.  She didn’t ask a bunch of questions about my abuse history, which I appreciated.  It’s hard enough to talk about it at all, but it would be even worse with someone I’d just met.  Once we’d established that I have no sex life, she stopped asking about that, too.  And I didn’t have to explain why I’ve never had an exam or pap smear.  You’d think that would be kind of self-explanatory once you know about my abuse history, but apparently it isn’t always.

C was actually a little overprotective, which was slightly annoying, and I told her I was okay with the questions.  I don’t want to be treated like I’m breakable.  If I’m clearly freaking out, okay, step in, but if I’m managing it okay, let me manage it.  There are times when I’m not quite an adult, but I want to be treated like one unless I’m clearly in a child state.

She didn’t insist on doing an exam.  She did say that it’s important for my health, especially given my abuse history, and that we’ll work toward me being able to do it, but she didn’t push it at all today.  Once we’d established that, my anxiety dropped a lot.

What we eventually settled on for progesterone was Nexplanon.  It’s an implant that goes in your arm and lasts for three years, so there’s one less pill I’d have to take.  And if I do have bad side effects, she can just take it out.  However, she’s going to be on vacation in August, so she didn’t want to put it in and then be away if I have problems.  So we’ll wait on that until late August/early September to put it in.  In the meantime, she wrote a prescription for Prometrium, which I’ve taken before.

But apparently my insurance no longer covers it at all.  That’s bizarre because they did a few months ago, and I thought they only change their formularies once a year.  So Monday I have to call back to the NP’s office and find out what we can switch me to.  I know there are a couple other progesterone-only birth control pills, and I’m pretty sure my insurance is legally required to cover those.  (I’m actually not sure why they’re not required to cover Prometrium.)  Gotta love it when your insurance pulls an asshole move on a Friday afternoon, right?  Luckily, my period just started, so I’ve got another three weeks to get started on something else before I go crazy.

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FU,CMS

Under the rules for Medicare Part D, there are six protected classes of drugs: antiretrovirals, anticonvulsants, antidepressants, antineoplastics, and immunosuppressants.  For most classes of drugs, the Centers for Medicare and Medicaid Services (CMS) only requires Part D insurers to cover two drugs, but for those six protected classes, insurers must cover all drugs available in those categories.

But apparently now they want to change that so that only antiretrovirals, antineoplastics, and anticonvulsants are protected.  Sheri wrote a good post about it over at her blog, which is what alerted me to the issue.  This worries me as a consumer of psychiatric drugs and as someone whose well-being and perhaps even life depends on immunosuppressants.

The only psychiatric drug I take these days is an antidepressant called nortriptyline.  It’s an old drug, cheap, so it probably won’t be dropped from my insurer’s formula.  But there are lots of newer antidepressants out there, particularly SSRI’s and SNRI’s, that are more expensive and not yet available in generics.  There are lots of people who depend on those drugs to manage depression, bipolar, OCD, and other psychiatric illnesses. 

Many people also depend on antipsychotics to treat their mental illnesses.  Like antidepressants, antipsychotics have been around for many years, so there are old ones available for cheap.  Unfortunately, they often cause unbearable side effects like extreme sedation, akathisia, and tardive dyskinesia.  Long term, they can cause significant weight gain, diabetes, and blood clots.  The second-generation antipsychotics (also called atypical antipsychotics) tend to have fewer side effects, but they’re much more expensive–some cost as much as $600 per month.

I also rely heavily on immunosuppressants to keep my UC under control.  The Humira and 6-MP are the only drugs that have helped push me to somewhere near remission, but they’re very expensive: almost $3000 a month if they weren’t covered by my insurance.  And even though it’s in a protected class, my doctor and I had to fight for two and a half months to get the 6-MP covered.  Then when it gave me terrible nausea, we had to fight for another 7 weeks to get Zofran covered.

Without the immunosuppressants, I would get much sicker.  My immune system would kick into overdrive again.  It would start attacking my colon, eating holes in the mucosal lining until my entire colon was a continuous ulcer.  I would be in excruciating pain that even the strongest painkillers couldn’t touch.  I would have severe diarrhea, dehydration, weight loss, and bleeding.  I would require intravenous fluids and blood transfusions just to keep my blood pressure high enough to keep me alive.  But none of those interventions would save me; my immune system would keep eating away at my colon.  Eventually, the blood loss would be too much too fast, and they wouldn’t be able to infuse enough blood to keep me alive.  Or my bowel would perforate, and the waste in my colon would leak out and spread a severe infection through my abdominal cavity.  Whatever the exact cause, I would die slowly and painfully.

There is an exception: “Unrestricted access to all drugs in a category or class of a drug is necessary where a beneficiary initiating access to a drug class would need to receive that access within seven days and, if they did not receive access within seven days, the lack of access would be expected to result in the patient’s death, hospitalization, incapacity, or disability.”  Oh, great, I’m glad to know I can only get drugs covered if my doctor says I’ll shit the bed in a week without them.  (And by “shit the bed,” I mean it in the colloquial sense, dying, not the UC shitting the bed that I’ve done more than once.)  It’s A-OK that I suffer intensely until I’m about to kick the bucket.  And does that mean that I’d only get approved for, say, one dose of Humira because if I improved, then I would no longer be dying in 7 days?  Would I then have to wait until I had a week to live again to get the next dose?  Clearly the people writing these rules have never dealt with a chronic illness.  See, ulcerative colitis is rarely fatal if it is treated, but it can definitely kill you if you can’t afford to spend $3000 on drugs that CMS has decided your Part D insurer might not have to cover anymore.

Immunosuppressants are what keep that from happening.  They have lots of nasty side effects and don’t give me the same quality of life as someone without UC, but at least I’m not crapping myself to death.  But if CMS changes the rules and allows Part D insurers to cover only 2 drugs in three of those protected classes, then the above scenario could happen.  And I know for a fact I’m not the only one who would get screwed over by this.

My favorite part is that one of CMS’s reasons for dropping immunosuppressants, antidepressants, and antipsychotic from the protected classes list is that they claim these drugs are overutilized.  Personally, I agree that that’s often the case with psychiatric drugs, but how is making these drugs unaffordable to vulnerable people a good way to solve the problem?  You’re penalizing patients, who have little control over the system, instead of the doctors you claim are overprescribing the drugs!  It makes no sense.  And immunosuppressants?  Overused?  Are you serious?  I don’t know ANYONE who wants to be on these drugs.  Your hair falls out, your bone marrow stops producing enough red and white blood cells, you’re so fatigued you can barely stand up, you’re vulnerable to every stray illness you come into contact with, and you know the drugs you’re taking can cause brain infections, lymphoma, and death.  I guarantee you, nobody wants to be on these drugs.  No one asks their doctor for immunosuppressants, and the doctors I’ve dealt with all prescribe them only as a last resort.

So WTF, CMS?  Stop putting people’s lives in jeopardy.

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Taking Care

In therapy today, I was talking about being sick.  That’s a lot of what I talk about in therapy lately.  Part of me feels like I’m just whining and should shut up about it already, but I also know it’s a big adjustment for me, and it relates back to old abuse and neglect stuff.

I said I’ve had this urge a lot lately to just quit taking my meds because I don’t want to have to deal with being sick anymore.  A thought I meant there was a child’s magical thought process of “If I stop taking my meds and seeing the doctor, that means I’m not sick anymore, so I’ll feel better.”  I told her that wasn’t quite it.  She thought I meant denial, but that’s not quite it either.  I don’t know quite what it is, but I know a fair bit about what it’s not.

I told her it’s too much like the way I felt when I was abused: something is happening to my body that I can’t control, I’m in pain, and I can’t do anything to stop it.  I know the situations aren’t really that similar–my father and a disease process aren’t very similar (except metaphorically).  I think it’s the element of helplessness that links them for me.

“I want somebody else to take care of me,” I said.

I have a lot of shame around that, layers and layers of it.  My mother always acted like I was making outrageous demands when I need or wanted her care.  My father was more responsive and caring, but he was also raping me.  As an adult, my desire to be taken care of makes me feel too needy, and receiving care puts me in the mental state of wondering when I’ll have to pay for it with by enduring sex or violence.

“That’s normal,” A said.  “Everyone wants to be taken care of.”

She had no idea how much I needed to hear that.  It sounds crazy, but I don’t think anyone ever told me that before.  I honestly thought I was abnormal for wanting that as an adult.  I still do, to some extent, but less.

A asked me what being taken care of would look like to me, and I had no idea, crazy as that sounds.  It’s this nebulous concept in my mind: I want someone outside myself to do something that makes me feel better, but concretely I have no idea.

“What about B?” she asked me.  “If he just put his arms around you and held you, would that feel like being taken care of?”

“No,” I said, probably too quickly and too emphatically.  “I don’t like being touched most of the time, and it’s even worse when I’m sick.  I mean, yeah, there’s a part of me that wants that, but it never ends up feeling good to me.  I don’t even want to be around other people or talk to them when I’m sick.  It’s caused some tension in our relationship, actually.”

I left the session without really understanding what was going on, frustrated and tense because I still didn’t know what “being taken care of” actually means.

There is a weird dualism about touch.  In my fantasies of being taken care of, I want to be hugged and held and touched in ways that aren’t threatening, but in reality, almost any touch feels threatening to me.  Nonsexual touch feels like a lead-in to abuse, or it feels unpredictable because I don’t know if or when the touch will turn abusive.  I didn’t have any healthy models of what it’s like to be taken care of, so I know I have this abstract desire, but I have no idea what it would look like.

Defining it has been on my mind the rest of the day.  I had this English professor, an Irish guy, who drilled into us, “Define your terms!”  That keeps running through my head in his Irish brogue.  The closest I’ve come to a conclusion is that this comes from child parts.  I/They/We want to be taken care of back then–when you’re always reliving traumas in a loop, you don’t need a time machine.  But me–and possibly other older parts–are too guarded to allow it or feel comfortable with it.

Ultimately, I think what I mean when I say I want to be be taken care of is that I want to be saved.  I want somebody safe to appear, to rescue me from each trauma, and to take care of me like someone should’ve back then.  That’s impossible, of course, and it’s incredibly painful to know that.  Nobody saved me then, and you can’t rewrite the past.  And the only one who can save me now is me, and I desperately want somebody else to do it because I feel too small and helpless.  I’m the children and the adults at the same time, and every self hurts almost unbearably right now.

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Ugh

Bad pain tonight. Took a Vicodin, but it wore off. I’d take another one, but I only have a few left, and I also have to be up in the morning because I have an interview for the OFA fellowship and then therapy.

Also my pee is orange. I’m hoping it’s just dehydration and will be fine in the morning, but I can’t help worrying. The 6MP can cause liver toxicity, usually within the first two months on it, and taking Humira with it can increase the risk. There’s already about a 30% chance of liver toxicity without the Humira.

God, I never thought I’d be one of those people who panics about minor symptoms.

If it’s not better tomorrow, I’ll call my psych nurse and see if she thinks I need to call my gastroenterologist.

God, I’m so tired of being sick.

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Better Day

Doing a little better today. Got zero sleep last night, but the asthma’s cleared up some.

My whole therapy session today was me venting about how I don’t want to be a sick person but I’m always sick these days. I was trying to explain to her that I feel like I don’t know myself anymore–the body I was used to is suddenly foreign. Body image isn’t quite the right term because it’s not about appearance, but my relationship to my body has changed in ways I don’t like or even understand yet.

Annie commented that it’s odd that I didn’t see myself as a sick person, since I’ve had some major health issues. I hadn’t thought of it like that before, but I guess it is sort of strange. But the other stuff wasn’t as disabling as the UC. I grew up with the ear infections, surgeries, and hearing loss, so that was just my normal. The symptoms from my AVM weren’t severe until I started having seizures, and then it was quickly diagnosed and treated. With the motherfucker gene, all I have to do is take pills. The back injury would’ve been pretty disabling, but when it was bad, I was so depressed I didn’t want to get off my sofa anyway, so it didn’t bother me too much.

But the UC, damn. It’s way better than it was, but I still have pain most of the time and have anywhere from 3-8 BM’s a day. On bad days, I can’t leave the house because I might explode if there’s not a bathroom available as soon as the need hits. My diet is severely limited, so even with supplements I’m malnourished and chronically dehydrated. Zero energy. And oh my god, my FARTS. You can’t even comprehend the magnitude. Most of the time I can’t hold them in or even make them silent, and half the time I have to dash to the bathroom because I’m not sure if I’m gonna fart or crap my pants. My farts could knock a herd of cows out cold.

But I saw the gastroenterologist this afternoon, and he seemed very hopeful about getting me into remission. He said there’s a very high probability of achieving remission with the combo of the 6MP and Humira. This was a doc I hadn’t seen before–I’d been seeing an NP at the practice, but she wanted me to see an MD because I’m a difficult case. (I would get the most severe, hardest to treat form of UC because I don’t do anything half-assed. [Sorry. Poop jokes are my coping method.]) I liked this guy. He was thorough and explained things without talking down to me. I’ve been happy with this practice–their office staff are terrible with organizational stuff, but the actual medical people I’ve dealt with have been great. The NP actually called two different times to see how I was doing. I’ve never had a doc/NP/medical person do that in my entire life. After yesterday’s clusterfuck at the PCP, I was dreading this appointment, but it ended up good. Not a single hint of “it’s all in your head.” I mean, it is kind of hard to chalk up the colonoscopy results to OMG TEH CRAZYYYY.

I should get my Humira tomorrow, and I have an appointment Monday so the NP can teach me how to give myself the shots. The 6MP can take several months to start working, but the Humira works a lot quicker. Once it goes into remission, then we can start weaning me off some of the meds slowly–the GI doc said hopefully I could get down to just the 6MP. He said he’d taper me off the budesonide first, then the mesalamine, then maybe the Humira, depending on how I feel and how my labs look. I would love to be on just the 6MP, and he said he’s seen patients have 20 years of remission this way. That would be amazing. I will never take normal pooping for granted again!

So I’m feeling much better than yesterday, emotionally, and the asthma is somewhat better. My psych nurse is going to call my psychiatrist in the morning and get him to give me something for the asthma. I’m sure he’ll be willing to do that–he’s written me scrips for non-psych stuff in a pinch before. A gave me the name of a primary care practice she’s had good luck with, so maybe I’ll see about switching to a PCP there. I’m feeling a lot more hopeful about life.

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Stigma and Medical Treatment

I’m really not okay.

I got an appointment at my PCP’s office today about the asthma. It was with someone who isn’t my usual PCP, but I assumed it would be okay because I haven’t had issues with my PCP.

Yeah, not so much with the okay.

First, the nurse’s aide made several comments about how many meds I’m on. NOT YOUR FUCKING BUSINESS AND NOT APPROPRIATE JUST TAKE MY BLOOD PRESSURE AND GTFO

Then the NP just blew me off. All she did was listen to my lungs, which doesn’t necessarily tell you anything about asthma. You can have normal, clear lung sounds and still have asthma–and I TOLD her the wheezing only happens occasionally, the main problem is chest tightness/pressure.

She told me, “It’s just anxiety. Just try to relax and breathe normally.”

THANKS I NEVER FUCKING THOUGHT OF TRYING THAT

Then she flat-out refused to do any testing or prescribe me anything to help. She told me to go home and breathe into a paper bag.

I’m sure if I didn’t have a mental illness, she would’ve done something. But no, I don’t deserve real medical attention because I’m obviously just an attention-seeking crazy person.

C, my team leader, wanted to go in there and argue with her and demand that she do something, but I begged her to just take me home. I knew I was going to start crying, and if I did it in the doctor’s office, they’d just interpret it as proof that I’m crazy and not sick.

I give up. I’m just fucking done. This is a HUGE trigger for me, and I just can’t deal with it. It’s pushing me to the brink of suicidality, and I’m having a hell of a hard time resisting the urges to cut. I’ve been crying on and off all day.

I think I need to find a new doctor. True, this wasn’t my regular PCP, but it’s hard to get appointments, so sometimes I have to see someone else in the practice. And I can’t/won’t accept being treated like this. I don’t even know how to go about finding a doctor who’s not prejudiced against people with psychiatric diagnoses. And I can’t take any more trial and error.

Fuck. Just fuck everything. I’m trying so hard to hold it all together, but I just don’t know how much longer I can pull it off. I’m sick all the fucking time, and now I’m being treated like I’m faking it and being refused adequate medical care. This should make me mad at the NP, and it does–but mostly it makes me feel like I should kill myself because I don’t deserve to be alive.

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Physical or Psychosomatic?

I’ve had trouble breathing intermittently for around two weeks and coughing for about a week. I went to the doctor last Thursday, but I don’t think she believed me. I wasn’t wheezing, and my O2 sat was normal. I told her most of the time it’s not wheezing, it’s feeling like somebody’s squeezing my lungs so I can’t get a breath. My inhaler helps a little, but not well enough or long enough.

Now I’m doubting myself. Could it all be psychosomatic? I’ve had that happen before when certain memories come up.

My father’s favorite torture method was oxygen deprivation. My first split, when I was three, happened when my father nearly drowned us in the bathtub. He would sometimes cover my mouth and pinch my nose shut, and other times he’d smother me with a pillow. I’d do whatever he wanted if he’d just let me breathe.

But those memories haven’t been coming up for me. I guess it could be a part experiencing it, but I don’t feel like I’m getting passive influence. But dissociation is weird, so it could be that. It would explain why my breathing sounds good and my vitals are normal and my inhaler isn’t working. All that makes sense if it’s all just in my head.

But it could be a real physical issue. It wouldn’t be the first time a doctor’s blown me off because we all know psych patients never get sick, don’tcha know. I’ve got complex medical issues, and the doctor could’ve missed something. She said if I needed my inhaler more than twice a day, I should go to the ER. But I don’t think it’s that serious, and I don’t want to be treated like a hypochondriac again. I’m going to talk to S, my nurse, about whether I should make an appointment with my PCP, but it could take a while to get an appointment.

I just wish I could determine if this is physically real or psychosomatic. I’m going to talk about it tomorrow in therapy, but I don’t know if A will have answers. How do I tell?

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Ready to Scream

Since apparently severe ulcerative colitis wasn’t enough to deal with, now my asthma is flaring up too. Had to go to urgent care this morning because my PCP couldn’t see me until next week.

But urgent care sucks. The doctor didn’t believe me because I wasn’t wheezing right then. I TOLD her I’d used my albutetol inhaler right before I came, and it’s always worse at night. She kept staring at our scars. She asked why I didn’t just go to my GI doc (for asthma?!) or PCP. Well, gee, sorry for coming to a medical practice for medical treatment. She was snippy when I said I had to use the inhaler three times last night and said I should’ve just gone to the ER. We just wanted to cry when we left.

I’m just totally exhausted from all the medical stuff. Some of it might be side effects from the immunosuppressant–waiting on lab results. But I just don’t have any energy. I almost started crying in the grocery store because I was so tired I could barely stay standing up, and I left without most of what I needed. I need more spoons–just getting out of bed and getting dressed uses up all my spoons most days lately. I hate this.

Sorry. I know I’m ranting about my health a lot lately, but I guess I need an outlet.

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Fighting Hopelessness

I’m at the end of my rope with the UC. I feel like I can’t take it anymore, but I don’t have a choice.

I put on an act most of the time: being brave, dealing okay with a sucky situation. I make a lot of poop jokes. And sometimes it is real. Sometimes I am brave and resilient.

But sometimes I’m not.

Partly I put on the act for other people, but mostly it’s myself I’m trying to convince. I want to be strong and brave and resilient. I want to be well enough adjusted to it that I can make jokes about it. Sometimes I do believe that about myself.

And sometimes I come home and sit on the toilet and cry. I feel like I’m losing my life to UC. Oh, sure, I’m still alive…but without the quality of life I need to be okay.

A lot of the time, I can’t socialize or exercise or grocery shop or leave the apartment or eat because the symptoms are too acute. Between the chronic dehydration, malnourishment, and side effects of the immunosuppressants, I have no energy. I’m in constant pain. I’m bleeding, although in relatively small amounts. I don’t sleep well because i have to get up and run to the bathroom, sometimes 10+ times per night. I take 12 pills a day for the UC, and I’m probably about to start giving myself shots. I practically live in doctors’ waiting rooms and exam rooms.

I could deal with the appointments and the meds and the diet if it got my symptoms under control, but that hasn’t happened so far. It’s better than it was at the start, but it’s still taking over my whole life. I’m bordering on suicidal.

It triggers a lot of trauma stuff. Some of the symptoms, especially bleeding and rectal pain, are triggering, as are the medical exams. And there’s the overarching trigger theme: I have no control over what’s happening to my body. I hate it all so much.
And I feel like I shouldn’t talk about it—be brave and shut up. But maybe talking about it is another way of being brave.

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Pain

Pain pain pain goddamn pain.

Meds aren’t helping. Restricted diet isn’t helping.

I’m in pain and I’m alone and it isn’t fair. I can’t take any more.

Screw it. I’m taking a Vicodin and going to bed.

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