Tag Archives: inflammatory bowel disease

Existential Boredom

I’m not as intensely suicidal anymore, but I really just don’t see the point of being alive.

Since the election, I have nothing to do with my time.  Literally all I do is sit in bed all day and waste time on my computer.  There is no point to my existence.

Nothing holds my attention.  I try to knit, to watch Netflix, to read, to write.  Nothing interests me.  I force myself to do it, but that doesn’t work for very long, and there are so many hours to fill.

And I hurt.  I don’t know what it is with the roving joint pains–one joint will hurt badly for weeks or sometimes months, and then for no reason that pain will stop.  Soon it starts back up in a different joint.  Right now it’s my left wrist again.  I have a brace from when I sprained my wrist doing kung fu, and it helps some…but it makes it hard to type or knit.  And my belly hurts.  I think I might be heading into another UC flare, which is awesome, especially since I might have to come off the 6-MP soon.  I’ve spent the last two weeks telling myself it was just PMS-related mini-flare symptoms, but since my period hasn’t happened, I don’t think I can blame PMS.  Oh, and it’s IBD Awareness Week, so clearly my body has impeccable timing and a fucked-up sense of humor.

I barely have an appetite, either.  I mean, I get hungry, but I don’t eat for hours because I just don’t care enough to get food.  C made me a gluten-free vegan cheesecake a week ago.  Ordinarily I’d have eaten the whole thing in about two days (no judging), but I’ve still got some left over.  I’ve got a big container of Thanksgiving leftovers, too.  They’re good, but I haven’t touched them.  Oh, and there’s also lentil soup C made.  It’s not even that I’m too tired/weak to prepare anything–literally all I’d have to do was take them out of the refrigerator and microwave them.  But I just don’t care enough.

I’d fooled myself into thinking the weakness was getting at least a little better, but it turns out I only thought it was better because I didn’t do anything beyond sitting in bed and getting up to use the bathroom.  Yesterday I cleaned my microwave.  It took all of five minutes, and that’s a generous estimate.  But then I couldn’t stand up, collapsed on the kitchen floor, and had to crawl back to my bed.  How am I supposed to have ANY quality of life when I can’t even stand for five minutes?  I’m terrified that whatever’s going on is getting worse.  I still haven’t had any luck reaching my gastroenterologist for a referral to a neurologist.  I might ask C to see if my ex-nurse, S, can make some calls.  Often medical professionals get a much better response than patients–sad but true.

I’m just so tired of existing like this.  There’s no light.  I don’t feel an immediate need to kill myself, but I can’t just keep living like this, either.  I want to feel like there’s some meaning, but I can’t see anything in this fog.

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I’m Still Here

For now, at least.  I’m just tired of talking.  It doesn’t seem to get me anywhere; it just leaves me feeling more alone and hopeless.

Everyone wants to tell me I should live, and honestly, I just can’t take hearing it anymore.  That probably makes me an asshole, but I guess that doesn’t really matter anymore.  Maybe you’re seeing who I really am now, when I can’t keep up appearances anymore.  Maybe you’ll hate me.  Maybe it’ll make you understand why I can’t live.

I’m tired of people trying to fix me and solve my problems.  I’m pretty damn smart, okay?  And I’m pretty damn resourceful.  If there were resources to be found, solutions to be invented, I would’ve figured them out already.  I’m tired of being polite when people suggest the same things over and over.  Yes, I’m on disability and food stamps and Medicare and Medicaid, I’ve applied for energy assistance, I’m on the waiting list for housing, I’ve been to the food banks, I’ve tried the buses, I can’t afford paratransit.  I’ve tried forums and self-help books and support groups and CBT and DBT and EMDR and psychoanalysis and ECT and the Department of Mental Health and Community-Based Flexible Support.  I’ve been to respite, the ER, more psych units than I can count, two trauma units.  I’ve gone to church and prayed and mediated and done yoga and changed my diet.  I’ve been on antidepressants, anxiolytics, mood stabilizers, stimulants, and anti-psychotics.  I’ve taken 5-ASA’s and steroids and chemo and immunosuppressants and biologics.  I’ve consulted psychiatrists and chiropractors and reiki masters and neurosurgeons and physical therapists and acupuncturists and gastroenterologists.

Nothing helps enough to make my life survivable.

You can’t fix me because I’m too many problems to solve.  It’s depression and complex PTSD and DID.  It’s ulcerative colitis and hearing loss and brain surgery and mobility impairment.  It’s disability and isolation and poverty.

And you can’t solve just one because they’re just a big knotted mess.  You can’t untangle one thread from another; they’re all felted together now, and there’s no extricating them.  And nobody can fix the whole big mess.  Not even me.  I did everything I was supposed to do.  I tried so hard for so long, and things just get worse.  Now, I just can’t try anymore.

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Sick (of It)

I saw my gastroenterologist today.  I seriously love this guy–he’s the best doctor I’ve ever had.  He listens, he actually cares, and he works hard to find solutions.  I wish I could clone him for various specialties and just see clones of him with different specific knowledge sets.

(Admittedly, I also like him because he rants, so we’re kinda kindred souls there.  Today he ranted, without my even saying anything, about how poorly they treated me in the ER when I was there most recently, the debacle with the antibiotics that left me literally full of shit to the point of severe pain.)

He’s really concerned about the fatigue and weakness too.  I was afraid he was just going to blow me off since my labs all came back normal–god knows I’ve had plenty of doctors do that to me.  But he didn’t!  I cannot even describe the sense of relief there.  He didn’t just think I was a depressed hypochondriac!  I mean, that’s how all doctors should treat their patients, but sadly it’s very, very rare, especially if you have a history of mental illness.

In true House, M.D. fashion, he ruled out lupus and similar autoimmune diseases.  I made the joke, “Come on, Dr. House, it’s never lupus,” and he got it, so more gold stars in my book.  My sed rate and CRP (markers of inflammation) aren’t elevated, so it’s not likely to be another autoimmune disease, although he did say that it’s still possible we’re getting a false negative because I’m on immunosuppressants and steroids.

There are several possibilities he mentioned.  He seems to think there’s a strong chance that the 6-MP is causing this, but he’s not sure.  We lowered my dose the last time I saw him, 6 weeks ago, but I didn’t get any significant improvement.  But he mentioned possibly taking me off it altogether, which makes me nervous.  The combination of Humira and 6-MP is the only thing that’s gotten my UC under any sort of control, and I’m afraid I’ll get really sick again if I have to go off it.  To his credit, though, he totally understands that and is concerned about the same thing.

He also thinks it might be somehow related to my MTHFR polymorphism (aka the motherfucker gene).  For those of you who aren’t familiar with that, I have a genetic mutation that makes my body incapable of breaking down folic acid, which can cause problems from heart defects to depression.  My gastroenterologist was actually familiar with it because it also increases the risk of colon cancer, which is just awesome for me.  He said he’d need to do more research on that.  It’s still relatively unknown, and there’s not a lot out there from valid medical sources.

There’s also a small chance that this is somehow a result of my brain surgery, although that’s highly unlikely.  I was diagnosed with an arteriovenous malformation in the left frontal lobe of my brain when I was 17, after over a year of worsening neurological symptoms that got blown off because I was mentally ill and therefore assumed to be attention-seeking.  (See why I’m excited when doctors don’t blow me off?)  This is unlikely to be the problem since it was surgically corrected when I was 18, and my three-year angiogram (the definitive test for AVM’s) was clear.  There’s a very slim chance that the surgery could’ve left scarring or something, but the frontal lobes are mostly associated with executive function and language skills, not motor skills.  And since they only operated on the left side, any weakness would be on the opposite side of the body; i.e., my right side.  My weakness is bilateral.

The other possibility is something neurological, and since it’s not his area of expertise, my gastroenterologist couldn’t really speculate as to what.  So he’s sending me to a neurologist.  He’s going to talk to my primary care doc and see if they can find someone good for me.

GI Doc: “I want to find a neurologist for you who’s genuinely interested.”
Me: “By that, do you mean not an asshole?”
GI Doc: “Exactly.”

I know I should see this as a chance to maybe get some answers about what’s going on with my body, and maybe even treatment that’ll help.  But mostly I just don’t want to go.  All the tests, the pain the fear…and I’ll probably just find out I have something else incurable.  I just can’t deal with having anything else wrong with me.  I feel way too broken already.

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Ideology v. Survival

Today my psychiatrist told me I’m too sick not to eat meat on ethical grounds.

He’s a functional medicine guy, and I trust him about this stuff.  I’ve actually been thinking the same thing myself for the last few months, particularly with the anemia and the severe fatigue/weakness.  But I just can’t quite stomach the idea of eating meat again.

I’ve been vegetarian for more than ten years now.  For me, it’s an ethical and environmental issue, but even before I went vegetarian, I was never all that excited about meat.  It was never hard for me to give it up, and I’ve never missed it.  Now, the thought of intentionally putting meat in my mouth makes me feel queasy.  He wants me to start with bone broth, and that will be easier, I think–it should be easier because it’s not actual physical meat.  But I still have to buy bones and roast them and boil them.  Even that’s going to be hard for me.

My psychiatrist loves to tell illustrative stories.  The first one today was about a Russian Jewish soldier who was stationed in Siberia.  He wrote a letter to his rabbi to ask what he should eat because all they had was pork.  The rabbi’s answer was, “Eat the pork, but don’t suck on the bones.”

“The moral,” my psychiatrist said, “is you don’t have to enjoy it, but survival’s more important than doctrine.  We understand that.”  (I assume by the “we,” he was referring to himself as Jewish, but I got the odd impression that he might’ve thought I am too.  Not sure where he would get that from–I don’t think I’ve ever mentioned my own religious practices to him.  But whatever.)

Then he launched into a story about a former Karmapa (leader of a specific sect of Tibetan Buddhism).  Many Buddhists are vegetarian, but in Tibet that’s basically impossible.  So the Karmapa was traveling, and someone served him shrimp.  After dinner, they asked how he liked it.  He replied that he enjoyed the taste, but he was sad that so many living creatures had to die to make one meal  He said he preferred beef because one cow can feed a hundred people, so there’s less destruction of life.  “If I must eat meat,” he said, “I prefer beef.”

It was a strange conversation; my conversations with my psychiatrist usually are, but I like that.  But today, I had so much ambivalence it felt like I was being dragged in two different directions.  Not so much about food–about survival.  I don’t really want to survive…but on the other hand, since I’m still alive, I’d like to be slightly less miserable if possible.  So I bounce back and forth between feeling like it doesn’t matter since I’m going to be dead soon anyway and feeling like I might as well try because what else have I got to lose at this point?

So I’m just sitting in the middle, waiting.  I don’t even know what I’m waiting for.

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Collapse

So today I collapsed in the Walmart parking lot and proceeded to have a sobbing meltdown.  Apparently I’m one of THOSE Walmart people now.

I understand why it happened: I’m finally just getting over the sinus infection, I’m still dealing with the gut problems, and now I’ve got my period on top of that.  I could barely stand long enough to get from the bed to the bathroom, but this was the day C could take me grocery shopping.  I thought I could push through it.

Apparently I can’t.

I told her just to take me home, even though I hadn’t done any of my grocery shopping.  She offered to go into Whole Foods and buy my groceries for me, but I said no.  I just wanted to go home…but also I couldn’t come to terms with not being able to do such a basic thing for myself.  I mean, C’s not going to be around forever.  She’s not even supposed to be seeing me at all anymore, but we just mutually don’t mention that.

And next week I get to hear my gastroenterologist blow off my fatigue and weakness because my labs look fine.  I really like him for most stuff, but I feel like he just isn’t taking this seriously.  I mean, at my last appointment, I told him I have trouble standing up for more than 60 seconds, and he told me to reduce my dosage of iron.  I know I’m probably reading too much into it, but I keep thinking he thinks I’m just being histrionic because I have a psych history.  I really like him most of the time, but I don’t know how to make him understand how bad this is.

Maybe I just need to collapse in his office and start sobbing on the floor.  Too bad I can’t do that at will.

My RN friend is going with me to the appointment, though, so maybe she’ll be able to help get the point across.  Of course, then he’ll probably just send me to some other specialist, and that’ll take weeks to get an appointment, and then they’ll do tests, which will take more weeks, and meanwhile my level of functioning will continue to decrease.

Oh, and for added fun, it’s going to be yet another month before I can get my Nexplanon implant, too.  It has to be done during the first five days of your period.  I called today when my period started, but apparently their supplier screwed up.  They don’t have any implants, and the nurse couldn’t tell me when they’d be getting more.  And my NP wasn’t working today, so I have to wait for her to call me back tomorrow and find out what the hell we’re doing about that.  Or I may just beg her to do a hysterectomy if the pain doesn’t let up.

Could something, ANYTHING, please go right for me?

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I did a stupid thing

Saturday night, I overdosed.  And here it is Tuesday morning, and I’m still barely able to function.  I can’t spell basic words without a lot of thought, and I nearly pass out when I get up to go to the bathroom.

I’m not sure if I wanted to kill myself or not.  I was at least half-dissociated, so I don’t even know how many pills I took.  (Or, for that matter, which one[s] of us took them.)

I think I wanted either to die or to make someone notice that something is very very wrong.  But I ended up not accomplishing either of those things.  So I feel like a failure in every possible way.

I feel like I NEED someone to take care of me.  To hug me and tell me it’s all going to be okay, to listen when I’m freaking out, to take care of all the everyday things like bills and food that overwhelm me.  I want to go back to a residential program like Sheppard Pratt, but I can’t afford it.  I have maybe three weeks left of my lifetime inpatient days still left.  I can’t use those up now–what if I need them more later?  Besides, Sheppard Pratt always has a waiting list, and I need help now.

Everything about real life is just too overwhelming.  Most of it, at this point, comes down to money, and I feel greedy for saying that.  Money can’t buy happiness, but the lack of it sure can fuck you up.  If I had a car, my life would be so much easier.  I could get to appointments, to the grocery store.  Hell, I might even be able to have a little bit of a social life.  But even if someone gave me a car for free, I wouldn’t be able to pay for insurance, gas, maintenance.

And if I had more money, I could get more psychological support.  I wouldn’t be stuck with these useless people from DMH.  I would even be able to travel if I found one who’s good but not on public transit lines.

And I just wouldn’t have to worry all the time about everything.  Right now, all it would take for my whole life to blow up in my face is for one little thing to go wrong.  Just one thing, and I’ll be sleeping under a bridge in winter.  One little thing, and I won’t be able to pay for the meds that keep me alive.  This is the reality of my life.  More money wouldn’t cure the underlying emotional injuries, but it would make them a hell of a lot easier to deal with.

But that money, that help, that support–none of it is going to come.  How do I keep dealing with the utter hopelessness of that?  My compulsion is to berate myself, to tell myself, “You don’t need any of that.  You’re just a pathetic attention-whore who wants everybody to pay attention to her all the time.  You don’t deserve to have needs.”  And with that comes the impulse to starve myself again.  It would be so much easier, and it dulls all the feelings.  And it seems easier than staring at the black hole in the center of myself and knowing that no one will fill it.  I mean, when my own government tells me I don’t deserve enough money to be able to meet my basic needs, who am I to argue?

And on top of the money issues, there’s the chronic illness.  It’s never going to get better.  It will continue to control my life for as long as I’m alive.  I’ll have to keep taking toxic medications that make me almost as sick as the UC does, albeit in different ways.  I’ll always be in pain.  I’ll always be so weak I have to use a cane to walk and still can hardly manage even with it.  I’ll always have to control my diet so strictly I’ve given up on eating out.  I’ll never not be sick.  In fact, I’ll probably just get sicker.  There is no relief, no remission.

And this is where I’m stuck, all day, every day.  I’ve done all the things they’ve told me will make me better, and none of it is working anymore.  So I have to choose between living like this for another 60 years or killing myself.  I want to feel like there’s some reason to live, but right now the pain is so bad nothing matters except how to make it stop.

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Full of Shit

So I spent most of today in the ER.

If you recall, I’ve been on a course of Augmentin to treat The Sinus Infection That Would Not Die.  Generally, if people have GI side effects from it, what they get is diarrhea.  Given that I have ulcerative colitis, you’d think I’d be more prone to getting that particular side effect.

But you would be wrong.  Instead of pooping more, I stopped pooping altogether.  I went from six to eight bowel movements a day to no bowel movements for seven days (and counting).  When it was just constipation, I thought I could wait it out for the rest of the 12-day course.  Being constipated was actually a relief after a year and a half of excessive diarrhea.  But then the pain started, and it got progressively worse.  This morning, it got beyond what I could manage.  The combination of not pooping and worsening pain also made me worry about a bowel obstruction.

So I called C early this morning, and she dropped me off at the ER.  I was not very enthusiastic about going because my last several visits there were not helpful, but it’s the only hospital around.  The pain was bad enough that I didn’t think I could wait.

Luckily, this time was a good experience.  Good nurse, good doc, even a really sweet X-ray technician.  The doctor ordered Zofran and morphine without even making me ask, and there were no lectures on how I shouldn’t use the ER for pain management.  No one called me drug-seeking or implied that my problems were psychological.  It baffles me that I can have such different experiences at the same ER a few months apart.  It’s really hit or miss with this hospital.

Luckily, it turns out I don’t have a bowel obstruction.  I’m just literally full of shit, which is not my usual problem.  But I have magnesium citrate and Colace, and hopefully those will solve this problem.

But I guess I now have to list Augmentin as another drug allergy.  (No, I know it’s not technically an allergy; the only medications I know I’m truly allergic to are NSAID’s.  But I use the “drug allergies” list as a “don’t give me these meds or I’ll end up in the ER” list, so Augmentin apparently belongs there.)

I’m exhausted, so I’m going to try to sleep.  And hopefully I’ll be able to poop soon.  I don’t want to have to go back to the ER.

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stupid

“Who’s ‘you’ when
your own body is
your biggest enemy?

“If her own body
can’t recognize
her, how can she?”
Two Girls Staring at the Ceiling, Lucy Frank

I want out of my body.  I didn’t ask for this to happen.  They tell me I didn’t do anything wrong to cause it, but I’m the only one who has to suffer the consequences.  I did not sign up for this shit.

I’m not sure how much more I can take.

And not only am I sick ALL THE GODDAMN TIME, everyone either pities me or thinks I’m faking.

Or they just act like I don’t even exist.  Tonight, a dinner before the wedding.  I knew almost no one.  My mother introduced her husband to everyone, but not me.  I guess I’m not important enough to introduce.  No one talked to me.  I was sitting next to a family friend who had a stroke, whose entire vocabulary is “yes,” “no,” and “damn.”  I’m pretty sure he said more than me.  My mother kept checking to see if he was okay…but not me.

There was also NOTHING on the menu I could eat.  So I just got to sit there and watch everybody else eat.  That and cry in the bathroom.

It’s like I don’t exist.  They’d probably all be happier if I didn’t.  I’m the fucked-up sister, the sick sister, the crazy sister, the crippled sister, the sister covered in ugly fucking scars, the sister with no social skills, the useless failure sister.

I want to slice myself up so I don’t have to feel all of this.  If I had a blade I would.  I could take apart my razor, but then I’d be hairy for the next 2 weeks.

But I don’t matter to anyone, and I can’t deal with the feelings.

I do have a bunch of food, so I guess I could binge and purge.  Because that’s a GREAT idea when my digestive system is already fucked up.  But I have to do SOMETHING.

I’m trying to convince myself I don’t need to do anything stupid but it’s not working.  I know some of it is hormones but that doesn’t help either.  I just can’t deal with this.  I never should’ve come.  My sister probably didn’t even really want me here, and I couldn’t really afford this trip.  I’m so fucking stupid.  What made me think any of them could ever love me?

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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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Grr! Argh!

I’m just about ready to throw things at somebody.

I was scheduled to have an appointment with my gastroenterologist today.  He has my last set of labs, which I’m very interested in, and we needed to discuss med adjustments to deal with the severe fatigue, the diarrhea, and the leakage.  I needed to get something in place before my road trip to Alabama for my sister’s wedding.

I got there today, and the doctor wasn’t there.  The receptionist said someone had called me to reschedule, but no one did.  In fact, the medical assistant called last week to tell me my labs looked better and my doctor would discuss it with me today!  But it took a conference of three receptionists just to determine that my doctor was not actually even in the office today!  Seriously, it’s not a huge practice.  There are six doctors; it cannot be THAT hard to keep track of who’s there.  And why the hell didn’t you know two weeks ago when I scheduled the appointment originally that he wouldn’t be in the office?  It didn’t sound like he’d had some personal emergency, so I would guess he probably planned his schedule in advance.  Even I have a good general idea of what I’m doing in two weeks, and I’m not a planner.

Then they tried to tell me they couldn’t reschedule me until September 23.  At that point, C, who had taken me to the appointment, looked like she was going to lose it on them.  She’s normally very laid-back and gentle, but she was pissed.  We both told them that was unacceptable because I’ve been very sick, I have a wedding to go to, and the doctor knew this and wanted to see me soon.

So they talked to the medical assistant and bumped somebody’s appointment, but still the soonest they could schedule me in was August 5 at 4:15.  The wedding is August 9, but I have to be there by the morning of the 8th at the latest.  I have to get from western Mass to NYC, and then we’re driving from there to Alabama.  It’s an 18-hour drive, which we’d planned on doing in 3 or 4 days–but clearly that’s not going to work now.

They did put me on the top of the cancellation list, but  that’s no guarantee.  Even if they do get a cancellation, they’re often last-minute.  I don’t have a car, and the bus drivers are now refusing to stop at my street for some reason, even though the previous and the next stops are a long walk from my street on a busy road with no shoulder.  And the buses only run once an hour, and then I’d have to wait half an hour for another bus to get to the GI practice.  There’s the possibility that C or my nurse friend could take me, but they have jobs and might not be available at the last minute.

I’m just so sick of this.  I’m already fucking sick all the time, and these people can’t even get their shit together so I can see my doctor about it.  This is the second time in a row they’ve canceled/rescheduled an appointment on me and not been able to get me in promptly, and it’s the second time they’ve canceled an appointment without telling me.  That’s not okay.  They’re always so nice that it’s hard to be mad at them, but this is endangering my health and potentially even my life.  If my doctor weren’t so awesome, I would say fuck it and go to another practice, but he’s the best doctor of any specialty that I’ve ever found.  Also, there’s not another GI practice in the area to go to.  I just don’t know what else to do.  I think tomorrow I’m going to call and leave a message for my doctor, since he said I should do that if they screwed around with the scheduling.

I just want somebody to make it all better.

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