I can't think straight 4.16.19

I found this yogurt flavored with beet juice at PCC. This might be a good way for me to get nutrients AND calories in at the same time. I don’t do well with dairy but usually tolerate yogurt all right.

I found this yogurt flavored with beet juice at PCC. This might be a good way for me to get nutrients AND calories in at the same time. I don’t do well with dairy but usually tolerate yogurt all right.

I didn’t buy the beet infused yogurt shown in the photo. I don’t know why. It would be good to try to get the beet nutrients as well as the fat and protein in the yogurt in this body. I’ve decided, I’m going to get it next time I’m at this store.

It’s just that I have so much fear around food now! It’s so frustrating to feel this way after years of enjoying so much incredible food during my culinary career.

When I had the inflammatory bowel disease in my twenties, I also had a lot of fear around food. This is not a surprise! Pain will certainly cause aversion to foods. At this point in my life, if I even look at hot macaroni and cheese - my system has never done well with hot cheese and wheat long before the 2014 surgery - my stomach clenches.

It’s not easy for people newly diagnosed with inflammatory bowel disease to omit foods from their diet. But I always encourage them to give it a try. Often, they feel so much better off certain foods that they tell me they feel the same way when they think about eating something that causes pain. Not worth it.

There were so many things I could eat before my surgery! I worked SO hard to heal the inflammatory bowel disease - which doctors told me was impossible to do, so maddening (tell me I can’t do something and I will find a way to prove you wrong) - so that I COULD enjoy a wide array of foods.

14 blessed health years.

I could do a little dairy and wheat here and there. But eventually, I started eating more and more in the years before the melanoma and three cancers. Obviously, with the genetic disorder (Lynch Syndrome), I may have still developed the four cancers even if I had been eating better.

But I can’t help but wonder if those years of indulging made a difference. The truth is I think stress had a huge role. The year I published my cookbook, 2010 is when it all started. I was working so many consulting jobs and also working on the book, I think I took a total of 10 days off that year. The melanoma showed up that fall.

When they found the ovarian masses in February of 2014, the oncologist said she guessed they’d been growing for THREE years - not one doctor told me I was at risk for ovarian cancer due to Lynch Syndrome by the way, but that’s for another post - and that would mean they started growing around the same time as the melanoma.

Something was off that year for sure. I pressured myself. I take full responsibility. I’m a grown ass woman who can face my own mistakes.

It’s maddening, though, that my workaholism could have made me so sick. Meanwhile, I see other people eat like shit and do all kinds of things to their bodies that I never did - and they are fine.

I try to not go down that road but it’s not easy. I see how people like me are treated in this country and I don’t get it.

Why should my dad and I have to work SO hard to get help when we are the sick ones?

We both have worked diligently to keep our bodies as healthy as possible - ok, I had a couple of years that I ate some fucking awesome food and stressed myself too hard, that’s it! - and we are treated as less than by organizations like the GOP?

What is the difference between me and the able-bodied people with wealth? Nothing.

It’s a genetic lottery and I lost.

Far too many people in leadership feel I have to pay for being simply unlucky.

I realize that in any other era, I’d be long gone. I would have never made it out of childhood. This is a better frame of mind for me because it makes me so grateful that I’ve lasted this long. If I get to 50 years old…wow, that would be an amazing miracle.

Sometimes, I wonder if these doctors blow me off because they look at my chart and figure: ah she’ll be dead within a few years anyway.

I know that’s unlikely and it’s mostly fatigue from a strained system that is the culprit.

I still can’t believe one doctor said it out loud “you’re too much work, many of these doctors don’t want complicated cases.”

As I correspond with my new endocrinologist today, I see what he is saying. And I appreciate him being honest with me! I’d rather hear the truth, always, even if it hurts.

But dang. It hits me hard in the gut. I’ve always had that fear that I’m “too much. Too loud. Too opinionated. Too smart. Too feminist. Too aggressive. Too everything.

I joke that I’m a better person when I’m tired. I listen better and talk less. I’m less likely to take bait when someone is looking for a fight. I want other people to make decisions, so I’m less controlling. All in all, I think a lot of these health problems have made me a much better person!

Dang. Too much work. Who wants to hear that from a medical practitioner?

And couldn’t I have become those things without going through such hell? Maybe. Maybe not.

We’ll never know. I’m stuck with them for the time being.

I need to get ready for my appointment. My dad isn’t doing well today. He is going to start his new therapy today since he is so sick and coughing a lot. It makes me so worried when he gets sick. I’m used to him being so strong. I know it’s a part of life to watch our parents age, get sick, and all that. I get it.

It hits me hard because we share the same genetic disorder. What if that happens to me? What if i get a few hard hits and then things keep declining?

Oh wait. That DID happen to me.

They cut you up, give you chemo and send you home. They’re happy because their stats show that I lived - and that looks “good” on the hospital reviews.

But what about quality of life? How is that not handled? Why isn’t there a medical department for cancer complications? Why have we both gotten tossed around so much?

I guess the answer is: medicine is a for-profit system. If their goal is to make money - and not heal - then they have no real incentive to help people that have chronic problems that don’t bring in the big bucks.

Chemo brings in thousands of dollars. As I’m sure the immunotherapy does too.

Eating problems? Weird mottling? Nutrients in an IV bag? Don’t bring in shit compared to tens of thousands of dollars.

The whole thing is so frustrating. Damn I’m tired of being tired.

Will keep at it. At least I have a ride to my appointment and a fun outing later that I hope I have energy for.

I just need to get to Thursday when I can rest all day and catch up on all of this. I’m determined to get my medical case on my website in a more organized manner. It requires rearranging some things that take me forever to do. Fortunately, my helper will come by tomorrow. I often work on things while she is doing some tasks.

Lately, I’ve fallen asleep while she is getting shit done. I’m SO glad I found her in the fall when I was feeling better. Now, she knows the routine and I can rest.

Hmmm…I’m SUCH a strange human being for being so proactive and preventative (eyeroll emoji). Preparing for when things might worsen seems like such a logical thing to do.

Not in America.

Time to get this ass out of bed.

I slept most of yesterday. I don’t want to do that again. Too many days sleeping and not eating…will not lead to good things.

Much love,

Jules