Tag Archives: Asthma

Feeling Crippled

Today’s been a rough day.

I needed to get into town to pick up the iron supplements my gastroenterologist prescribed last week.  I thought I was feeling well enough to do it.  Because it’s summer, the bus that goes past my street only runs every 2 hours, so I thought I’d try riding my bike into town.  It’s only two miles, mostly flat, so I didn’t think it would be a big deal.

Yeah, I was wrong.

By halfway there, I felt like I might die right there on the road, but it was a busy street with nowhere safe to pull off and rest, so I made myself keep going.  Then, as I was riding into the center of downtown, I started to have an asthma attack.  My leg muscles just quit working, and my bike and I fell over in the middle of an intersection.  It took me more than a minute just to be able to get up, and somebody had to help me get my bike up and onto the sidewalk.  Luckily I was wearing pretty thick jeans, so I didn’t tear up my leg except for part of my ankle, but my knee and the side of my leg are pretty bruised up.

I feel so useless.  A year and a half ago, I was walking/running around 5 miles a day, and I was doing intense martial arts training three nights a week.  I was strong and in good shape, and I knew my body could do pretty much whatever I wanted it to.  I had the arthritis and pain in my lower back and hip to deal with, but it didn’t limit me much.  Now I can barely do anything more demanding than sitting in bed.  Occasionally I can walk a little, but I have to use a cane, and it takes me days to recover afterward.

Right now, I feel like I can’t live like this anymore.  I feel completely cut off from everything I need, and I feel like I’m completely alone in dealing with this.  I mean, people try to be kind and helpful, but it usually doesn’t go beyond holding doors open for me and such.  Apparently I need a personal chauffeur so that I can do normal things like go to the pharmacy and buy groceries.

And there’s not even anyone I can talk to about all of this.  I don’t have friends anymore, not in real life.  I have friendly acquaintances on the campaigns, but we interact almost entirely around campaign stuff, not personal issues.  And I don’t think I’d tell them how hard things are anyway because I want them to see me as competent and capable, not crippled and deserving of pity.  But it’s so, so lonely and painful.  I feel like crying, but I’m fighting it because I think it would just make me feel worse.


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Psych Patients Get Sick Too

I really love this post from the National Organization for Rare Diseases about the delay a lot of patients have in getting a diagnosis.  It prominently features a discussion about how often people with symptoms of rare diseases are misdiagnosed with mental illness.  That impressed me because mainstream (non-psych) health groups rarely address the rampant discrimination people with mental illnesses face in getting treatment for physical problems.  (This excellent NYT article also talks about discrimination people with mental illness face in getting health care and is well worth a read.)


I’ve dealt with two rare diseases: a brain arteriovenous malformation (AVM) that’s now fixed, and ulcerative colitis, a chronic autoimmune disease.  I also live with moderate asthma and chronic pain from a back injury.  Then there’s the mental illnesses.  My current diagnoses are dissociative identity disorder (DID), complex post-traumatic stress disorder (C-PTSD), and major depressive disorder (MDD).


I was 17 when my AVM was diagnosed, but the symptoms started more than a year earlier.  At first it was just headaches and dizziness.  I went to see my doctor because I was worried I had an inner ear infection.  (I had 5 ear surgeries before I started kindergarten because I had so many ear infections.)  It wasn’t an ear infection, and he told me I was just stressed out.  But the dizziness got worse, so bad I had to lean against a wall to walk from class to class.  I went back to the doctor, but my mother told him I was just doing it for attention because I had borderline personality disorder.  He blew me off without doing anything beyond basic blood work.  Then I started having seizures.  Again, my doctor accused me of faking it because he didn’t witness any of my seizures.  (Sorry I can’t schedule my seizures at the same time as my office visit, doc.)  He never did an EEG or a brain scan, never sent me to see a neurologist.  He did call my psychiatrist and suggest giving me antipsychotics.  Finally I had a seizure in my US Gov class in which I stopped breathing, and the school sent me to the ER of the local research/teaching hospital, where my doctor didn’t have privileges.  They immediately did an MRI and found a large AVM, about the size of a golf ball.  I had gamma knife brain surgery 5 days after my 18th birthday that cured the AVM, but it could’ve burst any time before then.  That would’ve put me in a vegetative state or killed me.


Last year while I was at an inpatient trauma program, I got very sick–severe diarrhea, major blood loss, nausea, and excruciating belly pain.  My psychiatrist there tried to treat me, but I got very sick very quickly.  I couldn’t keep any food or liquids in my system, and my blood pressure kept crashing because of the dehydration and blood loss.  The pain was unbearable.  I ended up in the ER of the nearby medical hospital, where I met an intern who looked about 15.  First, she questioned me for 15 minutes about why I was in the trauma program.  She even wanted intimate details of my history of sexual abuse, which had absolutely nothing to do with why I was in the ER.  She put me on suicide watch.  I was running to the bathroom literally every 10 minutes, but now I had to leave the door wide open so someone could stare at me while I writhed in pain and had explosive, bloody diarrhea.  Then she had the nerve to ask me if I had any stress in my life.  If I hadn’t been in so much pain I couldn’t think straight, I would’ve said, “Yeah…it’s about 5’1″, wearing a white coat, standing next to my bed.”  It got weirder from there.


“Is there something you’d like to tell me?” she asked.


“Uh…no.”  I had no idea what she was talking about.


“Are you sure?”




Then she sent my suicide watch person out.  “Are you SURE there’s nothing you want to tell me?”


I’m usually pretty quick, but the combination of excruciating pain and a dose of Dilaudid made me stupid.  I had no idea what she was on about.  “Yeah…”


Then she sat down on the edge of my bed and gave me this smug, condescending “Really, I care about your problems” look–it was something straight out of a bad seminar on bedside manor.  “What did you take?” she asked in that smug voice.


There were so many things wrong with that question that I don’t even know where to start.  First, they’d done a tox screen, which came back clean.  Second, where the hell did she think I’d get enough drugs to overdose on while I was on a locked psych unit?  They are fastidious about locking meds up.  Third, I don’t know any drug overdose that gives you two weeks of severe diarrhea and a major GI bleed.  Fourth, my sed rate and CRP (markers of inflammation) were extremely elevated.  In fact, when I later got my medical records from that hospital, I found that Idiot Intern herself had written in my chart that they were “sky-high.”


But most importantly: PSYCH PATIENTS GET SICK TOO. Like, with things that aren’t in their heads and that they didn’t do to themselves.  When someone presents at a doctor’s office or ER with a physical complain, the first assumption should be that there is something physically wrong.  My mental illness shouldn’t mean that doctor demand a higher burden of proof of physical illness from me than they would from someone without a mental illness.


I was eventually admitted to the hospital.  A few days later, a colonoscopy proved that I had fulminant (i.e., “about to kill you” stage) ulcerative colitis.  I easily could’ve died–my blood pressure went down to 60/40, and they had a crash cart in my room.  My entire colon was a continuous ulcer with abscesses.  My cells were so inflamed that their nuclei exploded.  (I didn’t even know that was possible, but it is.  Google karyorrhexis.  Crazy stuff.)  The doctors were talking about doing a complete colectomy because they were afraid my bowel would perforate.  But despite being that sick, I still had to convince Idiot Intern that I was genuinely sick.


And it doesn’t just happen with the big stuff or the rare stuff, either.  A few months ago, I had to find a new primary care provider.  See, I have a long and well-documented case of asthma, which is a common diagnosis.  There’s also a statistical link between asthma and UC, and some of the meds I’m on for UC can cause pulmonary toxicity.  My albuterol inhaler wasn’t doing the job, so I made an appointment with my PCP.  I wasn’t having an attack while I was there (again, sorry I can’t schedule my symptoms to concur with your office hours, doc), so she decided that it was “just anxiety.”  Her expert medical advice was, “Just relax and try to breathe normally.”  I got a little pushy and asked for a maintenance inhaler–these aren’t risky drugs, nor can they be abused.  She refused and recommended that I talk to my psychiatrist.  It was all I could do not to cry in her office–I knew she’d just interpret that as a sign that I was crazy rather than asthmatic–so I managed to keep from crying until I got out of the door.


Luckily, I was able to find a new PCP who seems much better.  I gave him the same explanation of my asthma symptoms that I’d given the ex-PCP, and he never once mentioned psychiatric illness.  He even conferred with another doctor in his practice to see if I needed to be tested for pulmonary toxicity, given the UC meds I take.  He gave me a prescription for a maintenance inhaler, which–don’t anybody faint–successfully got rid of my asthma symptoms.  In short, he treated me like a human being with a medical problem, which is how all doctors should act.


But that’s something you don’t often hear medical organizations talk about.  Awareness and anti-stigma campaigns mostly seem to just tell people that lots of people have mental illnesses, and you should be nice to them.  That sort of unfocused approach doesn’t accomplish much in terms of concrete change.  That’s why I’m very grateful that NORD addressed this issue in their blog post.  I hope other medical groups will pick up on that message and amplify it.  I hope doctors will read things like that, recognize their prejudices, and stop.  I hope they’ll start taking seriously the medical complaints of ALL their patients.  We deserve that just as much as people who don’t have mental illnesses.


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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.”


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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Exhaustion and Hopelessness

The cold is mostly gone, but the asthma is getting worse. My nurse, S, wanted me to go to the ER, but I said no. They probably would’ve just blown me off like urgent care did last week. I do have an appointment tomorrow at my PCP’s office–not with the doc I usually see, but hopefully that’ll be okay. They’ll probably want to put me on prednisone, but it makes me psychotic and suicidal.

And I have the GI appointment Thursday to start the Humira. Fun times. Who needs an immune system?

I just don’t think I can take much more. I’m sick all the time, and I don’t have the energy to do anything. This isn’t really a life.

I’ve been thinking somewhat seriously about stopping all my meds and just letting it kill me. It’s not like I’m really living. I want a life so badly, but I can’t tolerate any more of this. I can’t keep pretending I’m strong and brave. I’m just not.

It didn’t help that I had a terrible therapy session, either. A kept pushing me into talking about something I’ve told her several times I don’t want to talk about because I can’t deal with the feelings it would bring up. She pushed, and I shut down. I could see it happening, but I didn’t even try to stop it. I remember bolting out of there at the end, but most of the rest of the session is gone. I don’t want to go back.

Basically, I don’t want to do any of the things I should. I just want to lie in bed until I disappear.

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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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