I forgot to write this series last week because the brain fog hasn’t lifted yet. Not really. I have been able to cook 2 times since my last post, but that’s it. I’m hoping that I can do more, but I’m trying to just be patient with myself and my body and hopefully it will get better. But I’m trying to prepare myself that it may not get better.
Health Update
On the health front this week, I saw my endocrinologist this week.
- I have normal testosterone results,
- My A1C is 7.3 (higher than last time),
- My weight was 401.6 pounds.
I take Victoza for my diabetes and weight loss, and apparently the Victoza might be making my gastroparesis worse because one of the things that Victoza does is slow down stomach emptying.
I had known that it slows down the stomach, but the medical studies I had read said that it only affects gastric emptying for the first hour after eating a food, not 4 hours after. But I do have gastroparesis, we just don’t know to what extent the Victoza is affecting it. I see a gastroenterologist at the end of this month for a second opinion.
My Opinion on Second (or Third, or Fourth, or Fifth) Opinions
Second opinions are vitally important for chronically ill people because a lot of things that I have been diagnosed with were overlooked, ignored, or not found by the first doctor I went to. I went to the Mayo Clinic and they just told me that I was fat and needed bariatric surgery. I have gastroparesis and malabsorption issues, so I knew that was not a good idea because it would probably kill me.
I was on 4 pills of iron every day for 6 months in 2009 when I had an iron deficiency. That is the kind of prescription that will mess you up and turn your crap black (literally) and probably get too much iron. It didn’t affect my iron levels at all. I still had iron deficiency anemia.
I ended up needing 12 iron infusions that year, where I eventually learned I was allergic to all forms of iron at the time. Iron sucrose and iron dextran were the only ones that existed. They told me there was a new iron during my last iron infusion, but I decided not to continue with the iron infusions because they weren’t really helping anyways..
The point of that story is that I had malabsorption issues, 4 pills of iron every day should have gotten me to normal and they did absolutely nothing. So if I had just trusted the doctors at Mayo, then I would have gotten gastric bypass surgery, which would bypass a bunch of my villi (fingerlike-tendrils) that absorb nutrients, meaning I had to take vitamins that I wouldn’t absorb. In addition, my inflammation markers at the time were ESR: 96 and CRP: 43. That’s a LOT of inflammation.
If I had trusted the first doctor (Which I did at the time), I would have thought my heart was completely fine. They did an ultrasound that couldn’t get an image of anything because I have a lot of fat on me. I got the results back, “Everything’s normal.” About a half-a-year later, an infectious diseases doctors said, “How can it be normal, they weren’t even able to get a good enough image to see if it was normal?”
So, off I went to a second opinion for my heart. The doctor didn’t think anything would come of it, but “let’s just make sure.” He ordered a heart MRI, and guess what, heart failure.
If I had trusted the first doctor, I would have believed that the MRI of my brain was completely normal. Upon going to the second doctor and getting another MRI of my brain, they found a brain tumor. A tiny one, but one none-the-less, 3 millimeters on my pituitary gland.
In other words, if you are chronically ill, please don’t be afraid of getting a second opinion if something seems off. If you think you have something and they just shrug it off without checking for it or they just minimize what you are going through, go to a second doctor.
If I had trusted the first doctor, I would have thought it wasn’t rheumatological, well, they seriously think I have Sjögren’s Syndrome.
Speaking of Sjögren’s Syndrome, the doctor has put me on Plaquenil, an antimalarial drug, that has shown positive results for half of people with Sjögren’s Syndrome. According to my rheumatologist, it’s not FDA approved for Sjögren’s Syndrome because the FDA apparently requires that a medication work for 60-70% of people to be marketed as a drug that effectively treats it.
What I Cooked in the Last Two Weeks
It hasn’t been that good of the last two weeks for energy. I forgot to write this series last week and have only been able to cook two things.