I love when patients help other patients.
I remember going to a nutrition talk when I was around 19 years old after living with the inflammatory bowel disease for around two years. I can still see the speaker in my mind’s eye - how does long-term memory work? I’m so fascinated with neurology.
She was very young and told us to drink Ensure who had clearly sponsored the event. This must have been around 1991, before the Internet. So the room was PACKED with people with IBD and their loved ones. As people started asking questions, the rookie speaker looked visibly unprepared for the onslaught of nutrition questions.
After a few awkward minutes, other people in the room started answering each other’s questions. I was so young and the experience was so profound that it seared in my memory.
Hmmmm…it’s often the GI patients that know more than the practitioners.
Fast forward to this post I shared above. I’ve never tried having them chart their refusal to help me but I will definitely try moving forward.
The cracks are growing larger in the medical system. The costs are too high. The system is too weak. The patients are pissed and getting sicker.
Today, I waited NINETY minutes for a new gastro doc. I was happy with how my appointment went on Monday but felt I should at least check out this other office. My friend who has few health issues said she liked this doctor. In the mean time, I had two other friends - both Jewish women who have had a lot of GI issues for their entire life - recommended other doctors in that same group.
I decided to let the appointment play out even though I’m exhausted from doing too much the last few days. I didn’t write yesterday because I literally did not have time and then my computer said it was full! Ends up my podcasts take up a lot of space so I had a friend help me clean out some files and ordered an external hard drive.
Back to the story!
Thankfully, I had a friend drive me to the appointment. I hadn’t eaten much beforehand. I have so few things I can eat throughout the day that i have to space out my calories in a way that maintains optimal blood sugar levels.
What I’m saying is: all I had to “eat” was some of my protein milk and ok, I’ll admit I ate some frosting off a doughnut! I usually wait until the end of the day to do that shit, and see if I REALLY want/need it. But today, I woke up hungry. Probably because I did so much shit yesterday! Sarah and I were super productive at least! I hate how tired I get these day.
We waited 1.5 hours to see this doctor and she comes in, doesn’t make eye contact, doesn’t introduce herself. Doesn’t acknowledge my friend. Just hunches over the desk and asks me “what can I do for you?”
Now, at first, this sounds like a really lovely opening doesn’t it? After hearing it for so long, I’m now suspicious. Shouldn’t you hear more about my case before we get to that? What if I don’t know what’s going on?
I said: Well, I don’t know if you had time to read the overview of my medical case, but… and she interrupts me to tell me that she indeed did read it.
I go on and say: I’ve been struggling to eat and…
Again, she interrupts me: you know, are you sure you’re eating enough? Sometimes when it’s motility issues, the patients stop eating and that slows the gut down.
I took a deep breath looked over at my friend to give her a WTF look and turn back.
I tell her: I hear you. I have so many issues given that I lost four organs and also have a history of IBD, and…
She interrupts me again rattling off tests: well have you had this test? Yes I have. This one? This one?
I think she was trying to throw me! She was so freaking suspicious. I need to record this shit because I’m SO TIRED OF ABLE BODIED PEOPLE NOT BELIEVING HOW BAD THESE APPOINTMENTS ARE.
Meanwhile, I’m texting my friend: We’re leaving, I’m done.
She then says after I mention ALL the things I do to digest, my IV bags, exercise, and how I used to be a chef, and I’m a nutritionist and I sample different foods ALL OF THE TIME in order to see if I can tolerate them:
WHY DO YOU NEED THE IV BAGS?
She says in this super suspicious tone.
I said: I was on and off prednisone from 10 years and the theory is that it messed up my adrenals which chemo and the surgery sent over the edge. Also I don’t reabsorb fluids well because I’m missing most of my colon.
Suddenly, there is quiet.
And that’s when I finally get what the whole fucking problem is.
Most GI docs just don’t have the nutrition or knowledge to deal with really complex cases.
I know more than most of these docs about a lot.
She then starts rattling off drugs: well have you tried anti-spasm drugs?
OMG what is wrong with her? Why would I take anti-spasm when I have motility problems.
For the first time in my life - in part thanks to the Twitter post up above which made me feel empowered thank you VERY MUCH #blackwomentwitter - know how to get it done - I said:
You know what? This isn’t a great fit. I also didn’t appreciate having to wait over an hour and a half for my appointment which you didn’t apologize for. I don’t want to waste your time and my friend needs to pick up her kid so I’m going to go. Thank you very much.
And we got up and walked out of the room! I’ve NEVER done that. My friend agreed that her energy was WAY off. The whole thing was super weird. I mean, I’ve had a million weird appointments like that, but I’ve never felt like I could just say buh bye.
It felt good. Now at least she could get to her next patient who was probably also waiting forever.
I got home and could eat and my friend could pick up her kid!
I do hope able-bodied start to BELIEVE, because white people may never suddenly become people of color, able-bodied can certainly get sick in a heartbeat and suddenly be thrown into the system.
It’s a rough road.
But I got a new podcast up! It’s about transformation after going through a huge challenge - in this example, my friend Paula who is so insightful shared her rebirth after divorce.
I’m trying to stay on top of everything while taking in enough calories! I’m really trying to be grateful and know that good things CAN happen. I’m always so freaking nervous something bad is going to happen. I guess that’s part of trauma - you’ve had bad things happen - in my case, over and over again. It’s hard not to feel like something bad is around the corner.
The best thing that came out of today was the awesome chat I had with my friend today in the waiting room! It was an excellent therapy session. We talked about how sometimes we are going through a good period and we can help others and other times, we’re the ones who need help. It’s cyclic.
That made me feel better. I’m like: ok I will make it through this chapter - I honestly wondered if I was going to make it mentally for awhile there, more on that later - and good things CAN happen. I don’t know if they WILL. But I want to make sure I stop fearing something terrible every step of the way. It’s a horrible way to live.
I’m off to the treadmill early tonight! I keep going to bed too late. I keep feeling like there is so little time. And since the pain has been improved and I have a bit of energy, I feel like I have to get a zillion things done before…I get really sick again or…something bad happens.
Sigh….I guess I have to work on that. I wonder what it would be like to not live with fear of something terrible happening all of the time.
I can’t remember what that feels like. All I feel is urgency. Get this done. Find this doctor. Figure out how to eat enough. Fight for my case. Share as much content as I can. Spend time with the kids. Try to relax a little bit. Repeat.
I’m so tired today, I have no idea how I’m going to do my full routine but the pain hasn’t been great the last couple of days so gotta do it.
I’d love to have people do a week long challenge where they live on chicken broth, eggs, and avocado and then do my entire routine at some point - not necessarily at night - and see how they feel after only one week! I’m sure they’d feel like it was a good clean out diet!
But overall, it sucks to do all of the time.
Gratitude. I’m really working on gratitude!!!
I’m grateful my friend drove me to my appointment. I’m glad I get an excuse to meet with the other doctors in this practice.
I’m glad I can eat what I CAN eat instead of lamenting the small diet. I keep doing that and then I get so bummed when I lose one part of it!! I’m lucky I get to eat at all! I heard of a 19 year old who hasn’t eaten real food in years! She’s been on tube feeding and IV nutrition for several years. I have another friend that’s about to undergo radiation on the neck.
I’m lucky to be where I am. I HAVE TO REMEMBER THAT.
Ok, Negrin out. Gotta start the routine early tonight!!!!