Dang, This Hurts

By this time next week, I’ll be in Seattle doing pre-surgery testing and appointments. AND I COULDN’T BE MORE READY!

Here’s a quick reminder if you’ve forgotten the details about the surgery.

Allow Me A Moment

I try so hard not to gripe about how difficult MALS is. But you should know, it’s debilitating. So please bear with me while I “unload my wheelbarrow”.

The deal with MALS is that it is almost always progressive and degenerative. As the median accurate ligament compresses on the aorta and celiac arteries, it limits blood flow to the liver, gallbladder, the kidneys, parts of the stomach, and parts of the intestines.

That limited blood flow causes those organs to not function well. In the most extreme cases, when the blood flow is cut off severely, tissues and organs can die. (I am not anywhere near that stage though.)

In addition to the artery compression, most MALS cases also have compression on the celiac nerves which run to the stomach and gut. This too is progressive, with the pain typically becoming more frequent and more intense.

Almost 11 years ago now, when I first remember having serious symptoms, I could go months without any issues. About 5 years ago, I could go several days or maybe even a week without problems.

But by the time I was ready for surgery in Los Angeles last December, my pain was 24/7. And now, just 2 months later, my pain is not just constant, but more severe.

Much of the time, my pain is up between 6 and 8 on a scale of 1 to 10. I wake up in pain. I push through working at my computer for a few hours, often switching between standing and sitting to find some relief. But by noon, and for the rest of the day, my pain is all I can think about. At night it disrupts my sleep.

I never feel like eating. But if I don’t eat, the pain increases. When I eat, the hunger pain might decrease a bit for maybe 15-30 minutes, but then pain and fatigue takes over again. Still, I have to force myself to drink my Kate Farms and Nestle Compleat liquid diet to keep calories on. I don’t want to drop any more weight and risk not being able to do my surgery.

People have asked what MALS feels like. The best I can describe it is not quite a stabbing pain. It’s a compression. So it feels more like someone has reached inside your solar plexus, grabbed the upper part of your small intestine and the lower part of your stomach in their fist — and is just squeezing with all their might and won’t let go, so that it’s even hard to breathe sometimes.

And there’s no medication to help with the pain.

NSAIDs like Advil and Tylenol are out because they are so hard on the lining of the intestines. Drugs like hydrocodone or oxycodone are too addictive. Same with heavy duty drugs like morphine, fentanyl or dilaudid. Some people take gabapentin, which I tried, but it turns me into a zombie and I need to be clear-headed to work.

So my pain management options are really just distraction and sleep.

Sleep is usually fitful, not just because of the pain, but from night sweats due to vitamin D levels dropping again from malnutrition. For some time now, I couldn’t figure out why I was so hot at night. Then I realized recently that my left quadricep and right tricep were getting numb again, which is what happened the last time my vitamin D was low. Thankfully, I’ve caught it soon enough this time before that muscle numbness turned to sharp stabbing pain as it did previously.

For distraction, I’ve turned to poetry lately. Each poem is like a puzzle to me, working to convey thoughts in a structured and powerful way. I can pass the time and get lost in my thoughts putting words together.

A Poem To Share

This poem below isn’t especially gutsy or exceptional, but it’s one that I feel like is appropriate right now. So many MALS patients like me feel very overwhelmed only to have doctors, bosses or other people not believe us or not support us. (Though I feel very well supported!)

You probably don’t have MALS, but we all know what it’s like to feel overwhelmed.

Hope this poem speaks to you and encourages you to get real with people around you.