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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4 Comments

June 27, 2014 · 9:51 pm

4 responses to “

  1. If venting helps… The good news in your post is that you have follow up appointments, and that you made the trip to Boston.

  2. Don’t feel bad for venting about being sick of everything. I’m in the same boat. This disease is a constant battle and it’s exhausting.

    I hope that your labs come back better next week and that you start to feel better soon.

  3. You are most definitely not alone — not as long as I am in the blogosphere (and Lord knows I’m not going anywhere). 😀

    I am sorry you are having to deal with all your symptoms while still being a kick-ass political mama. I must say, I am impressed!

    I think you’re right — maybe the iron just takes time to work (as with so many other drugs). Hopefully your labs come out looking good.

    And I wouldn’t feel bad, venting about how sick you feel or any of the above. We have ALL been sick (either in head or body) and complained about it plenty. At least I know that I have.

    Hang in there, girl. I think you’re doing great things, giving voices to the underrepresented and speaking on their behalf when there isn’t anyone else who will do so.

    And I’m sorry this comment got so long. Guess I went on my own little rampage. 😀

    • I like it when people go off on their own rampages. It’s pretty awesome and, at least in my experience, empowering.

      I guess I feel like I shouldn’t complain about being sick because it’s not going to go away, and everyone will get sick of hearing it over and over. That’s old trauma crap–my mother and grandparents erased my problems, including abuse and severe depression, by telling me that nobody wanted to be around me because I was so negative all the time. So now I’m perpetually afraid that if I say anything negative, everyone will get sick of me and leave me all alone. I know it doesn’t square with reality, but it’s stronger than reality.

      I just want to go home and sleep in my own bed and not be expected to try and do a 12-hour workday several days in a row. I know, I know, that’s what normal people do, but my body just isn’t capable of it. I’m sure a lot of my low mood right now is exhaustion, but it sucks that I’m not even excited about this big event. Instead, I’m thinking, “I have to find B and make sure I can get a chair. I hope nobody’s going to think I’m being lazy because I can’t carry tables or stand up with a sign. What am I going to do if I have a bathroom emergency in the middle of the event? How am I going to deal with the pain? Am I going to have trouble with all the sun because of my photosensitivity? God, I hope I don’t shit myself. I’m so tired; I just want to go back to sleep.” And on and on like that.

      But I’m hoping once I get there and get caught up in the energy and enthusiasm of the crowd, I’ll feel better. It often works that way for me.

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