Tag Archives: UC

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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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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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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Disjointed and Disconnected

I feel like I haven’t had much to say lately, so I haven’t been posting. But it’s lonely. I’m lonely. I keep wanting to reach out and connect, but I don’t know how. I don’t know what I want/need or how to ask for it.

So here’s a bunch of random stuff about my life that might make me feel a little more connected, even though it’s going to come out all disjointed.

  • I still don’t have a therapist.  I’ve come to the conclusion that I probably should, but I’m too afraid to look for one.  Afraid I won’t find someone, afraid it won’t work out if I do find someone, afraid they’ll reject me (again).  So my brilliant approach is to do nothing about it.
  • I am exhausted, existentially.  After the Boston trip last week, I haven’t done any campaign work all week.  Didn’t even answer my phone for campaign people.  I feel a little guilty, but mostly I just don’t care.
  • I think some of the apathy is the Supreme Court’s fault.  I’ll spare you my political ranting, but suffice it to say that I’m very unhappy with them.  It feels like no matter how hard we work to make the country more fair and kind, it just doesn’t matter.  Someone with more power will just stomp it into dust.  Right now I’m too tired to fight back.
  • I am doing a table for my AG candidate at the farmers’ market on Saturday.  But I plan to just sit there, smile at people, and hand out lit.  I’m too tired to be aggressive about it, and if they don’t like it, they can dock my pay.
  • I still don’t know what I’m going to do about my roommate situation.  I should be advertising on Craigslist and talking to friends who might know somebody, but I haven’t done anything at all.  I feel like my roommates are screwing me over, so it should be their job to fix the situation.  Of course, that’ll just end up screwing me over in the end.  I know this, but does it motivate me to do anything?  Nope.
  • The fatigue is slightly better since I’ve been on the iron, but it’s still very present.  My gastroenterologist’s office called to say my blood counts looked better in this week’s labs, and I’ll see my doctor this Tuesday.  I’m going to discuss with him whether it’s the iron sulfate that’s making me sicker, the lower 6-MP, or both.  The worst, of course, is night.  I don’t know why, but it’s always been that way for me.
  • I have an OB/GYN appointment July 11.  I’m freaking the fuck out about this.  C is going with me, but that does not actually make me feel better.  I’m afraid she’ll refuse to give me progesterone without an exam, and then I’ll be totally fucked.
  • It poured all night tonight–I’m talking hurricane quantities.  This makes me nervous because I live 50 yards from a lake, in a first-floor apartment, but we didn’t flood.  Our power flickered a bunch, but it didn’t go out.  In spite of this, I hope it pours again tomorrow night.  That way every asshole with a lighter won’t be setting off firecrackers.  I don’t do well with sudden, loud noises.  It’s all right if I go to a fireworks show because then I expect it.  But on the 4th of July, even though it’s illegal, people just LOVE setting off fireworks.  Maybe if I beat them up, I can blame it on my PTSD.
  • I also need to get around to installing my window unit tomorrow because it’s too damn hot to exist.  Of course, I’ve been saying all week that I was going to install it tomorrow.  Apparently I’m so apathetic about everything that not even heat stroke can motivate me to get out of my bed.
  • I really hate this new WordPress post layout.  I don’t usually complain about website updates unless it’s Votebuilder (don’t start me on THAT rant), but this one bugs me.  It feel like it’s trying to be too Facebook-y, and the interface is less intuitive than it used to be.

I don’t really feel more connected, but maybe it’s a work in progress?  I don’t even know anymore.

 

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So the usual Thursday trip to HQ in Boston became a 4-day trip at around 11:00 on Wednesday night.  There’s a big event in Boston on Saturday and another event in Worcester on Sunday, so RFD and FO decided it made more sense to stay in Boston.  RFD and FO are staying with FO’s sister, and I’m staying with one of the Boston-area RFD’s.

It’s been challenging so far because I’m not feeling physically well.  I’m not sure if reducing the 6-MP dose is making me sicker or if it’s the iron supplements irritating my GI system.  Either way, it’s not a lot of fun.  I just hope no one has noticed how often I have to run off to the bathroom.  For added fun, there’s only one stall in the women’s restroom, but we have 30-40 people at HQ, plus several other offices/businesses on the same floor.  Maybe I just need to tape my restroom access card to my forehead….

The iron doesn’t seem to be improving the fatigue and weakness, but maybe it’s still too soon to tell.  I have repeat labs on Monday and an appointment with my gastroenterologist on Tuesday, so we’ll see what the labs say and what the doc recommends.  Part of me would love to go off the 6-MP because it makes me so sick, but I’m also worried that the UC will get worse again if I have to go off it.  Trying to manage the UC and the UC meds seems like such a crapshoot, and I’m so tired of it.

Right now I’m just tired of everything.  I’m tired of being sick all the time, I’m tired of pain, I’m tired of spending so much time in doctors’ offices, I’m tired of barely being able to stand up, I’m tired of the stares and questions when I use my cane, I’m tired of being isolated, I’m tired of being limited, I’m tired of being strong, I’m tired of surviving.

I just feel so alone with all of it.

And I feel like I shouldn’t be saying any of this, that it’s too negative and nobody wants to hear it.  But I’ll hit the “Publish Post” button because maybe then I’ll at least feel less alone.

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June 27, 2014 · 9:51 pm

Lab Results

I finally heard back from my gastroenterologist’s office this afternoon–while I’m at headquarters in Boston, of course.  Apparently I’m anemic, and my white blood cell count is pretty low.  That could explain a lot of the fatigue and weakness symptoms I’ve been having.  My doc’s putting me on iron.  I’d been on it before, but he took me off it because my levels were fine and he was afraid it was messing with my digestive system.  But I’m guessing with the bleeding I’ve been having, especially without the iron supplements, made me anemic again.

The WBC count is more worrying.  It’s almost certainly because of the 6-MP.  I have a love/hate relationship with this drug–it’s caused me all kinds of icky side effects, but it’s also given me more control of the UC than any other drug.  And now I may have to go off it.  He’s not going to take me off it just yet; he wants to get repeat labs in two weeks and go from there.  I wasn’t having as many problems on 75 mg–it wasn’t until it got upped to 100 mg that I got really ill–so we’re both hoping that means going back down will solve the problem.  But if it’s caused bone marrow toxicity, I may have to go off it totally.

I’m SO FRUSTRATED.  The only drug that’s kept my immune system from ripping holes in my intestines might now be killing my bone marrow.  If I go off it, I’ll probably get sicker with the UC, but obviously killing my bone marrow isn’t an acceptable scenario either.  All I want is a drug that controls my illness without killing me.  WHYYYYYY does that have to be so far out of reach?

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Disconnect

I’m realizing that I spend a lot of time these days feeling disconnected.

I interact with people a lot, primary through my political work.  It’s great; I love it.  But I only get to be part of me in that context.  It’s a part of me that I like–capable, confident, smart, quick learner, good with people.  I feel valuable and wanted.  I even feel like people like me.  I’d like to be that person all the time–it feels good.

But it’s not all of who I am, and neglecting the other parts of me isn’t going to do us any good in the long run.

There’s also part of me who’s sick and scared.  My hair is falling out.  I can’t stand up for more than a minute before my legs start to shake and give out on me.  Half of my right big toe is numb, and the last two days, I’ve had tingling and numbness from my left elbow down to my pinkie and ring fingers.  I get headaches I can’t shake for days.  I have bruises all over my body even though I haven’t bumped into anything.  My belly hurts almost constantly.  I’m still waiting to hear back from my gastroenterologist about the recent labs, but I’m starting to think this is something more than just the ulcerative colitis.  It scares the shit out of me.

And there’s the depression that’s always there, niggling at me.  I can only push it away for so long.  Anxiety, too.  I just keep worrying that something is going to blow up in my face that I can’t handle, and everything will fall apart.  I can push away the fear and depression for a while, but it never really disappears.

And I can feel young parts close to the surface.  I always know when they’re nearby because I start to crave care, someone to take care of me because I’m scared and alone and I can’t do it myself.  But I have to.  I’m an adult, and there’s no one to take care of me now.  I don’t even have a community anymore, not since I had to leave the treatment program I was in.  I still see my team leader twice a month, but most of the time, I’m on my own.  Idiot Case Manager thinks I’m doing great, not that I believe I’d get any substantial help from her even if she didn’t think I was doing great.  I get the sense that aside from drugs and hospitals, they don’t have much to offer.

And what is it I really want people to offer, anyway?  What is it that you think would actually help?

I want to feel not alone.  I want a community where I can be all of me.  I keep thinking about going back to the trauma unit just to be surrounded by people who get it, but that doesn’t really fit.  I’m not in crisis; I don’t need to be monitored and locked up; I need to have my freedom and ability to do my work.  But I also need to feel held, and I don’t, here.  There’s no one around me who understands what I’ve been through.  I don’t even have a therapist anymore.  Partly that’s my own fault, I know.  I could look for another one, but I don’t.  I probably won’t.  Or, well, I’ll search and search, I’ll find them online and read their profiles, but I’ll never pick up the phone and call.  I’m too afraid.

I’ve built up my own walls, and I have no idea how to get out of them.  I’m alone and afraid, and it hurts so much right now.

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GI Appointment

Saw my gastroenterologist today.  I thought the appointment was supposed to be with one of the NP’s in the practice, but he apparently took over.  He was PISSED when he found out about the crap his office staff had tried to pull with the appointments.  He told me if they try that again, I should tell them I have ulcerative colitis and need to be followed closely, and if they still give me problems, leave a message for him and he’ll personally schedule me in.

He said he’s just going to keep me on the Entocort, since it’s not causing me any problems to be on it but it causes tons of problems when I try to go off it.  It’s such a relief that he’s not going to keep trying to get me off it–I’ve dealt with a lot of doctors who just didn’t care about the side effects of med changes; they’d just tell me to keep doing whatever they said no matter how bad it got.

He was also very concerned about the fatigue and weakness, and he agreed that the 6-MP was the likeliest culprit.  He also is concerned that it may be causing liver issues, so I have to go get a bunch of labs drawn on Monday after the convention.  In the meantime, he’s having me go down from 100 mg to 75 mg.  He only wants to do one med change at a time, but if decreasing the 6-MP causes more problems, then we’ll either increase the Humira to every week or switch me to Remicade.

It’s just so nice to have a doctor who’s so responsive and doesn’t blow me off because I’m crazy.  He’s literally the best doctor I’ve ever had.  I wish he could be my primary care doc too.  Or maybe somebody should just clone him so he could be everyone’s doctor in every specialty.

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Busy!

I haven’t posted in a while, I think.  I haven’t had much to say–pretty much all my time and attention is going toward the convention, and that stuff would probably be either incomprehensible or boring to most of you.  Suffice it to say I’ve been busy.  At least 3-4 hours of calls a day, plus training some of our whips.  Somehow I’ve also become tech support for our region, which is kind of a joke.  I’m decent with computers, but not great.  Tonight I solved a guy’s problem with the mobile app for Android…but that’s not very impressive because all I did was google it.

I had a nice birthday.  I went out canvassing for a couple hours, and then I came home and watched The X-Files and ate mango-passion fruit sorbet.  I got a package of gluten-free/vegan peanut butter chocolate chip cookies from one of my friends from the trauma unit, and another friend sent me a package with really cute shoes, a top, a bag, and some yummy tea.  There was some kind of shipping issue with my bike, so I haven’t gotten it yet, but I think it’s on the way.  With my luck, it’ll come when I’m at the convention.  But I think my roommates will be here, so it’s all good.

I’m anxiously waiting for my GI appointment on Thursday.  I’m not even sure who I’m seeing from that practice–my pushy nurse friend was the one who ultimately got me an appointment that was before August.  And it’s a good thing, too.  The pain’s been pretty bad.  It comes in waves, so at least it’s not constant…but when it hits, I’m doubled over and incapacitated.  I’m only seeing blood occasionally now, but I’m still pooping bright orange pretty frequently and leaking a lot of the time.

I think I’m going to push for them to switch me to Remicade.  Whoever it is probably won’t want to do it without talking to the doctor I usually see, but I’m hopeful.  I’m taking my pushy RN friend, so she may be useful in that regard.  I’m also going to ask for pain meds to get me through the convention and until we can get me on some meds that work better.  I rarely ask for pain meds; in fact, I don’t think anyone at this practice has ever written me a script for narcotics.  I’d been using a two-week supply they gave me from my ER visit back around Thanksgiving; that’s how infrequently I take them because they make me dumb.  But I can’t be curled up in pain for the convention.

I’m also going to talk to whoever it is about the possibility of reducing the 6-MP.  I really think it’s responsible for the horrible fatigue, and I know it’s what’s causing the nausea.  Reducing it does worry me because it’s the only thing that’s gotten me anywhere close to remission, but now it’s making it almost impossible to function.  I’m hoping that switching to Remicade (or potentially vedolizumab, if it’s available this soon) will get this shit under control enough that I can reduce the 6-MP.  Not flaring doesn’t do me any good if I can’t get out of bed to enjoy it.

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