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My boyfriend has Crohn's disease...
and I’ve been trying to get him to join an online forum, so he can get support from fellow people with Crohn’s.
I was like “plllleassseee, I think it would be really positive”:
He’s like “NO. They whine so much on forums, they call one another “Crohnies” which is just weird and they always have depressing/ vague inspirational song lyrics by like, Jewel, in their signatures, along with all the meds they’ve tried.” And his reaction was like this:
He’s such a cynic, but I looked and it’s totally true.
Things that are keeping me up
I am having anxiety dreams about my rheumatologist.
I am relieved to have a diagnosis and grateful it is only Crohn’s, but tired of people making me feel like it’s nothing to worry about—like I came down with a cold or something. It’s been something very real and very difficult for me. Trust me, I realize it’s not cancer or something life threatening and I am so grateful for that, but it’s been a rough three months for me and it’s something I’m going to have to live with for the rest of my life and every case is different. Some people have one flare-up and that’s it. Others have several and lose their entire colon. If this situation has taught me anything, it’s that life has its own plans and nothing is guaranteed.
Similarly, I was speaking with my father tonight and seriously, unless you have cancer like he had, I really believe he doesn’t think you’re really sick. Or maybe he’s trying to not worry me. I don’t know. Ever since I got sick he’s been seemingly nonchalant about everything. I respect and love him because he is truly the greatest man I know, but we are such different people.
If one more person offers me a diet plan that will “magically” fix my Crohn’s, I’m going to break their face…just as soon as my arthritis clears up.
I am tired of all the medication. Still on Prednisone, higher levels of Methotrexate, and will be starting Remicade in a week and a half.
I am worried about the cost of everything. Even with the great insurance I am blessed enough to have, out of pocket won’t be chump change. Remicade is one expensive drug.
I am scared shitless that they won’t be able to find a vein the day of my first infusion and/or it’ll be a blood bath trying to get one, which is only funny because they need to draw blood from the same vein as well. The nurse he has in his office is very cool, but a shitty draw. I’ve been requesting to go to Quest all this time because she’s butchered me every time. She gave me a pneumococcal vaccine the other day and the shit was running down my arm.
I am even more scared that this treatment won’t work.
I’m frustrated with the idea of Remicade being my Hail Mary Pass.
I am fucking sick and tired of being sick and tired.
I am so frustrated with the cards I’ve been dealt and have maintained such a positive outlook for so long, but dammit all I want to do is ride my bike and break some boards.
I could easily work out this frustration with a good TKD class or a ride through Central Park. Oh, wait…
Holy shit cabs are expensive, and PS I hate gypsy cabs.
I want my independence back (said in the same growl that Jodie Foster uses for “I want my dog back”).
I hate that my wife has to deal with this. I hate that because I’m sick she has had to carry so much burden. I hate that financially she gets short-changed cause everything is so damn expensive. I know she wants certain things that she should want like a vacation, etc and she never asks for anything ever and I want to give her the world, but with this obstacle she now just can’t have them easily and this kills me inside. It makes me feel like a failure as a wife, a burden and a liability. She deserves so much more than I am giving her right now. I hate that she has to worry about little things because we are so focused on the big picture.
I hate that I’ve learned which friends can be counted on through hard times, but surprised and even more grateful for the ones who have been there.
I am incredibly impatient. My wife reminded the other week about how far I’ve come. How easily I’ve forgotten that in November I could barely unfurl my hands.
What strength I do have, I draw from my wife.
This city is a fucking beast in many different ways to those who are physically challenged. I am lucky as I will be OK, but holy shit do I have a deeper respect, compassion and admiration for those who won’t.
I am embarrassed by this post. I swear, I have by and large been really positive and not a total whining and depressed pain in the ass for the past three months. And I will go back to my positive, humorous self, but I needed to get this all out because my anxiety has awoken me at 2 AM.
Let me reiterate: I do know how lucky I am. Trust me, I’ve been a model of positivity. And now I definitely don’t sweat the small stuff, and really hate complaining because I’ve learned so much. I am so incredibly grateful for my wife, our life, our families and our friends. And it could be so much worse. I am well-aware of how blessed and fortunate I am. I am simply exhausted.
I am relieved that after two months of seeing his face regularly, I finally figured out who my rheumatologist resembles: the actor Austin Pendleton.
You can send all violin music to:
Bite My Ass
c/o Don’t worry, I’ll stop bitching now
To any of my arthritisy friends on here... :)
Just wondering, when you go for your IV infusion, how long does it take for the stuff to actually infuse? My appointment is at 10am and I need to start getting ready for prom early as well. The hospital is only about 15 minutes away so at least that’s not a problem. Cheers!
A Celebration of Life: RIP Remicade 2009-2011
Today we celebrate the life of Remicade, better known by some as Infliximab. Remicade lived a clear and fluid life even though it was cut short. He was a great friend to me, the kind that was there when I thought everyone else had given up on me. Remicade and I were closer than friends, you could say he became a part of me in fact.
I remember this one time Remicade and I were doing what we do best, hanging out and sharing a bag of IV fluids, when someone else came in and he selflessly agreed to hang out with them too, and then another person. No matter how many people needed him, he was always there to dive in and help them out. He was a problem solver, and liked to get to the root of the problem. He worked tirelessly to straighten out any ills he came across.
Those around me knew that Remicade’s time was coming. He was given only a short while to live, and in those last few weeks hung on and made my world just a bit easier to deal with. Remicade was well loved, and I know will continue to live on in the lives of others.
Today we should not grieve, but celebrate his short life and know that he continues to comfort those in need. I am grateful that I got to spend time with Remicade, those months we were together were some of the best.
Please join me in celebrating his life with the following musical tributes:
Anyone with Crohn’s who’s chosen to go the Remicade infusion route: how is it? Is it worth the risks? Or do you think it’d be wiser to choose a more holistic route and risk needing surgery later? This is a huge decision and I feel really overwhelmed and confused so any and all opinions are welcome!
Trampoline Hall Lecture - Getting bad newsMichael Goldberg
Recently I was asked by a friend to talk at Trampoline Hall (@trampolinehall) about my medical story and how I’ve managed to survive it all with a smile on my face and still laugh.
This is a bit of an edited version of the lecture from that night.
Woohoo!... or not
Hey hey my Crohn’s peoples… Sooooo things haven’t been on the upswing at all. I’ve been on 6-mp for about two months and Remicade for about as long as well. I feel better after the Remicade infusions but it generally seems short lived and my last surgical visit entailed the colostomy talk. If you have Crohn’s, you know how bitterly depressing and lonely it can be without that particular nonsense. For those of you already at that juncture, I wish I could hug ALL of you. I really do. I am thus far telling my body I will find a fast moving Mack truck to jump in front of before I get there. SO. that said, I found some interesting research this evening on the use of wild oregano oil as well as probiotics. I also had a really informative discussion with my cousin who knows a bit about Chinese medicine and has studied shamanic medicine as well in Peru. She was spot on about some general difficulties we all have with Crohn’s and offered some great (and realistic) therapies via diet, herbs etc for me to try. So even though I’m dirt poor and unemployed, I’m going to scrape together some monies somehow tomorrow and try these things out. I’ll stay on my Western meds too but I’ll keep you all informed how it goes. #gonewishing
To have any chance at living a normal life I must spend my time at the hospital every 7 weeks getting an infusion with other patients who need life saving medication or blood transfusions. It’s still weird to me. To look a me with my hair and makeup done looking like a normal person, and yet I am sick.
Crossing my fingers and toes that myself and everyone else I know on biologics never face the terrible side-effects possible.
This is my remicade infusion from the 19th of February. Next one due April 9th.
See I told ya! I am so behind at getting things up on this blog.