What I need more of - immediately!

Fuck. I don’t know what else to say. My hemoglobin dropped another 10 fucking points over the weekend. I am eating iron-rich foods. I am taking iron supplements. I am resting. What the fuck else is there to do?

I called the hematologist’s office and only got a message back from her secretary basically saying that she would not consider looking at a transfusion until I see her on 16th of December!!! So, I called back, and in my professional voice (meanwhile, the tears are right at the surface) advised them that this is not ok with me. What the hell am I supposed to do. I need to have a life. I went to work today and lasted until the end of my eggnog latte. Then I started to fall asleep in front of the computer. So I called the doctor’s office to get my results and then it all made sense why I felt so fucking crappy. A drop of ten point in 2 days is ridiculous to me. I called my family doc who has gone home with the flu. I asked her receptionist if she would call and put some pressure on the hematologist. The receptionist said  I would probably have to come and see here – which means sitting in her office for 2 hours for basically the same result. She has all the blood work I have dutifully gotten 3 times a week for the past 2 weeks. So I called back to get the answer and found out that she has gone home sick with the flu and can barely talk.

I have been a compliant patient. I do everything they ask of me even if I have done it before and it has been a problem. I will try it again just to keep them all happy. Now I would like some results. They can give me a couple of units of blood and I will feel better. I don’t understand why this is such an issue.

I have now struggled with colitis for 5 years. I am done. I want them to take the thing out. I don’t care about a bag. I want an end to chronic pain and anxiety about chronic pain and where the next fucking bathroom is. I am done.

Mitzvah Update:

Today I was not the giver but rather the receiver. My co-worker drove me home. It takes 45 minutes and given that we both live in the same neck of the woods, she had just come from there. L took me to get blood work done as I don’t think I should be driving when my hemoglobin is so low that my eyes won’t focus. For the short time I was at work, I told someone that he looked really nice today and that I could see how hard he was working.

2 thoughts on “Frustration

  1. My sympathies, Shihtzustaff. Do you have to go back to the hospital, do you think? Can you show up there and demand a transfusion? Well, not just like that….but see someone there who might recommend it right away?

  2. This is an old post, but I’ll comment anyway. I had colitis in my 20s and had my large intestine removed (I’d be dead otherwise). The bag does suck, and every once in a while it really really sucks. (As ostomates joke “shit happens”). The first couple years, in particular, can be very socially awkward (I was in university residence and no, that wasn’t good). However, after a while, you mostly don’t notice it. You really can get used to anything. Lacking a colon does cause some issues with food, more in my experience than the docs think, but you can work around those.

    Also, you can get a pouch made from your small intestine after you’ve healed up. It has its own issues (the small intestine really isn’t meant to be a colon) but it does more or less work and let you feel more like an ordinary person, or so I’ve been told. I stuck with the bag, despite its issues, because they are less complicated to deal with even if occasionally really humiliating.

    Also, ostomy bags, even if you’re fastidious about keeping them as clean as possible and not smellable to humans, fascinate dogs, for obvious reasons. Dogs think I’m the shiznitz these days.

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