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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16 Comments

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16 responses to “Busy!

  1. Good luck with your appointment on Thursday. I hope that you can get some answers!

  2. Well if nothing else, you seemed well-informed about your treatment options, and that’s more than most people can claim. I hope you are able to get the medication you need at your doctor’s appt. Pushy friends with medical knowledge can always be helpful, especially if he/she knows about your personal experience and can back you up.

    I think you could talk more about your political stuff and not be boring. I think most of it is fascinating and maybe would be to most people — kind of like a little “e-lesson” in “how it works.” Anywho, that’s just my random little opinion. Take it for what it’s worth. 😀 ((hugs!))

    • Yeah, I try to be very well-informed about medical stuff that pertains to my situation. I just do not understand people who don’t get information and just blindly trust any doctor. Some of them are good, but some of them make you wonder how they learned to tie their shoes, let alone got a medical degree. It’s not like you have to read medical journal articles or anything. I was an English major and haven’t taken any biology classes since about 2002, but I can google and talk to other patients and just generally be well-informed about my medical issues. There’s a lot of the body I know nothing about because I’ve never had problems there, but if I’m sick, I’m damn well gonna make sure I understand it and know my options.

      I’m glad you don’t think my political stuff is boring. But a lot of the everyday stuff really is boring, even to me. I don’t want to write a post about making 200 phone calls in a night and hearing a bunch of voicemail messages, then occasionally talking to someone and hoping they don’t hang up on me. A lot of a campaign is boring and repetitive, but the occasional interesting or cool thing happened. Like last night I talked to a delegate we’ve been trying to reach for three months. She’s undecided but seemed very interested in why I was supporting my candidate and how the campaign was going for us. I talked to her, and then I told my RFD and FO that they should get the whips in her senate district to lean heavily on her at the convention and try hard to get her to our Friday night party so she can talk to the candidate herself. I think if we get her, we may get the other delegates from her town–sometimes town or ward delegations decide to vote as a bloc. If we can get her, it’ll be a big feather in my cap.

      But mostly it’s ringing phones, voicemails, and hangups. I can tell you exactly how many seconds it takes a phone to ring 5 times. (27 if you wait all the way through the 5th ring.) A good night is a 20% or 30% contact rate. But I even enjoy the grunt work most of the time–I’m strange like that.

  3. What an encouraging post. With the nurse at your side I have high hopes for your GI appointment. Being busy is good. Re tech support, often you do not need to know much to know more than others & yes many people will not even Google before asking for assistance. So glad you had a nice birthday and some good presents. May the bike arrive in perfect condition.

    • Yeah, my nurse friend is awesome, so I’m glad she can go with me.

      You’re right about people not even googling things. Have you seen this site? It might give you a little giggle. But a lot of our delegates and whips are older folks, and it’s harder for them to learn how to navigate computers and smart phones because they’re so different than the technology they grew up with, so I cut them a lot of slack.

      The bike did arrive, and I’m in love with it! Just need to get a nut to make it safe to ride.

      • I totally agree that if a person is say 60+ and not working a job the requires them use all the new technology then younger people should gracious help them along. I am not too far away from that age bracket.

      • Well, you seem to do well with the technology of WordPress. 🙂

        But yeah, I get that older generations don’t always do so well with technology, and I’m happy to help where I can. And we even have people in our region who can’t get internet or cell service where they live–it’s a problem in what we call the Hill Towns, these small towns up in the mountains. We have to cut and print paper lists and bring them out to those people when they make calls for us. The lack of access to cell service and internet in western Mass has actually been a fairly big issue in this campaign, at least in the two western Mass regions.

      • Vermont is hilly and has many no service zones too. Plus if you are poor you very often opt out of technology because of costs.

      • Yeah, that doesn’t surprise me. I haven’t seen a lot of Vermont, but what I have seen seemed really similar to western Mass. I am a big fan of Bernie Sanders, though. He’s pretty cool. I know the Progressive Democrats of America, who started in my town, are trying to get him to run for president as a Democrat.

      • Bernie, he’s running…or so says my hubby who is a political scientist. If you ever wish exchange emails (not quite sure how to do that privately – Grannie has my email) I would say more. I like to keep my KittyHere presence non political.

      • Yeah, the question with Bernie is whether he’ll run as a Democrat or an independent.

        If you ever want to email, mine is geas.seeker@gmail.com. Feel free to shoot me an email any time if you feel like it. 🙂

  4. Wow you are busy! I’m glad you’re managing and taking the pain as it comes. That it’s not constant must make things a bit easier at least. Glad things are going well on the campaign. Xoxoxo

    • Yeah, it is easier when the pain isn’t constant. It takes my breath away when it gets bad, but if I can sit and just focus on breathing until it passes, I’m okay. I just hope my body behaves itself for the convention.

  5. Oh god me too. I’ll be keeping fingers crossed for you. I soooo love it when you have political work going on…it’s like you blossom. You’re an amazing person all the time but to see you so fulfilled and happy makes my heart sing. (hugs) xo

    • You’re so sweet, Grainne. I’m glad you’re my friend.

      I do feel like I blossom when I do my work. It feels like I finally found what I’m meant to do, and it feels pretty great. I’m hoping once I’m well enough, I might be able to move to Boston and work for the governor’s or AG’s office. I might have to get my bachelor’s first, though. It’s frustrating that a diploma is required for so much stuff that I could very well do without one. I’m a quick learner, and I’m pretty damn smart. But you can’t quite put that on a resume.

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