Jan 21/2016
Pots Blog 1
Learning to Laugh at it
I was on the phone with one of my best friends yesterday, Mollie Gibson. I’ve known her since I was five years old. She’s one of the few people who can freely call me on my shit without any sort of defensive response from my part. At the same time, I know she’s always rooting for me. If she’s going to pay me a compliment, it will make me blush for days. And if she’s going to give me a reality check, I’ll plan on taking it very seriously. Last night she commended me for my ability to make fun of myself throughout my journey with this illness. She’s right. I do laugh through the difficult times, A LOT. If I didn’t, I’m not sure how I would find any light inside some of my very dark days.
Most of the time I make fun of myself using bathroom humor. I think I have created more puns about poop than the number of poops I have produced myself through my very, slowly moving colon in the past year. And I talk about enemas like they are vibrators. The humor though, isn’t just limited to toilet talk.
Another problem that POTS has brought on for me is severe brain fog. For my whole life, I definitely felt I had a unique way of thinking. Anyone who knows me well knows that my thought process isn’t exactly conventional. I always got really good grades in school and like to think of myself as being pretty intelligent, but sometimes I wonder what planet I come from. My friend Matt Target calls me his “smart-dumb” friend. He describes it perfectly. Of course, the POTS often takes me from being a “smart-dumb” to a complete “dumb-dumb!”
The other night I went to have supper with my mom at one of our favorite Upper West Side restaurants, Café Du Soleil. Everything was going fine. I had several wine stains on my shirt and some sauce in my hair from my Salmon a la Provencal, but what’s new? At the end of our meal, I went to the bathroom and put my cellphone by the sink to wash my hands. My mom always tells me never to put anything down when I’m not home, because I am 99% likely to leave it there. So in Middle School I came up with a system. To avoid leaving a binder or a pencil at my table when leaving the class, I would take my arms like a giant broom and sweep everything closest to me into my bag. It seemed to solve my problems. But my classmates who shared my tables were never too happy when their term papers and wallets would end up in my backpack.
Anyways, when I left the bathroom I had to be sure that I wasn’t leaving anything behind, especially my phone. I already left it Starbucks earlier that day and was really trying hard to be more conscious of my belongings. So I resorted to my middle school- arm sweep maneuver. But it’s not like you’re going to accidentally take something important or noticeable from a bathroom sink stand.
Of course I got home only to realize that I was holding on to a very large candle. The cellphone was in my purse. But apparently the massive cylinder of wax that I stole from the bathroom needed to be more readily accessible.
POTS BLOG 2:
Jan/27/2016
My Personal Pots Tips
What I’m learning most about this condition is that everyone who has it presents very different symptoms. Some people are more compromised in their cognitive functioning skills, some in their ability to move, some in their GI tract, others in their respiratory system, few in their speech, and the list goes on…..
While different remedies can work for one person and not for the next, I think it’s important for people to share what has been successful for them. As we know, modern medicine for POTS often treats one problem and then adds a plethora of others. After being on Mestinon (Pyridostigmine) for several months with debilitating nausea, I decided there had to be a better way. I have created a list of some helpful tips, for anyone who is looking for alternative remedies.
For GI Motility:
Next to Nature Aloe Pills: This pill has literally saved my life. Sometimes it stops working when my system is too used to it, but it is a guaranteed trip to the bathroom for mild to the most severe constipation. Get the capsules instead of the tablets. Must be ordered online.
Senna Tablets: Usually I have to combine them with about 1,000 mg of Magnesium, but they will cause some movement.
Magnesium Citrate: This stuff works like a charm. The lemon flavor is the most tolerable for me. Drink one bottle before bedtime. AND DO NOT EAT DINNER.
Dr. Shulze’s Intestinal Formula #1: Very similar to Next to Nature Aloe Pills. Not as effective in my opinion, but sufficient. I typically have to take 2-3 times the recommended dose.
Self- Administered Colonic Massage: For me, there is no immediate effect in terms of relieving the constipation. But it always helps to promote movement and the natural process of peristalsis. Also a good way to help pass painful gas and to relieve cramping. Starting near your appendix at the lower right side of your stomach, apply pressure in a small circular motion, then travel up to your rib cage working your way in a big circle down toward the left, until you reach your groin. Keep repeating the motion. II do this 2-3 times a day for 20-30 min.
Have Someone Sit on You: I swear by it. Amazing to help break apart painful gas bubbles. Big boyfriends are good candidates.
For Brain Fog:
Read for an hour per day: Proactively stimulate your brain. You don’t feel it working, but it does a lot more than you think.
Coffee: Don’t overdo it. Potsies have to be careful with this. But it’s a great kick-starter in the morning
Study facts: The more you memorize the more difficult it is to forget. Watch some Jeopardy instead of the Kardashian Show.
Blueberries: Great brain food, and a light easy snack for people who struggle with dysmotility. My doctors always say to stay away from berries with gastroparesis, but I never have an issue with them.
Have conversations with people: Sometimes when you’re feeling the fog coming on, the last thing you want to do is make a fool of yourself and talk. But you need to keep your mind as active as possible, and challenge it! Surrounding yourself with people and communicating is the number one thing you can do.
For muscle weakness and fatigue:
Coffee: As I mentioned previously. Don’t overdo it for POTS sake. But a cup in the morning will help you get up and start your day.
Compression socks: Helps the circulation and blood flow throughout your legs, making it easier to get around.
Cardio: The more light cardio you do, the more your body adjusts overtime. Even if you feel like you’re going to collapse, force yourself to get up and walk around the block, or even across the street. Being complacent with vegging out all day is the most dangerous thing you can do.
Mestinon: This stuff was great for a while. It even had me going to the bathroom some mornings. I would literally be unable to move, take a teaspoon and a half of the medication, and find myself going on a five- mile run. However, the resulting hours of nausea, dry heaving, and insomnia was enough to make me go off of it. I’ll take a tiny bit once in a while if I need a boost. Choose your battles wisely.
Increased sodium: When I went to Mayo, they told me to increase my sodium intake to 10,000 mg per day. Crazy, right? That’s what I thought. And I still do. So I tak about 1/3 of that and find that it really helps my energy. Too much creates a level of water retention in my body that can feel even more exhausting than the POTS itself. The increase in sodium must be done along with an increase in fluid. The goal is to promote blood volume and to remedy the low blood pressure.
Gastroparesis:
Aloe: Drink a half a cup of aloe after meals to help with digestion. Really helps soothe, propel food down, and make it less likely that your stomach will send everything right back up. Also promotes regularity of bowel movements.
Meals: I eat a little starchy something in the morning along with a cup of coffee. Lunch will be a a very soft meal around 1 (yogurt with peanut butter and cooked fruits, etc….) and then I snack throughout the day on dates, prunes, and tablespoons of peanut butter (which doctor’s say are all bad for GP, but I live off of them and only experience their benefits). I do better with my biggest meal containing mostly solids late in the evening (which doctors also say not to do, but I find that my body prefers it this way. Because fluid is more difficult for me to take down, I usually find three times during the day to chug several glasses of water so I can feel the discomfort less often and regurgitate as infrequently as possible.
Walking: DO NOT SIT AFTER YOU EAT. WALK THROUGH THE URGE TO VOMIT AND THEN IT IS MORE LIKELY THAT YOU WON’T! Adopt a dog if you need incentive.
Wine: I know it’s weird. Alcohol for GP, right? But a glass a wine (preferably red) a half hour before dinner really calms the nerves. The calmer you are and less worried that food won’t go down, the more your muscles can relax and take the food where it needs to go!
Weed: Same reason as the wine. Also stimulates appetite.
Insomnia:
Melatonin: I take 10 mg and transform from a neurotic insomniac into a sleeping beauty. Take ½-1 hour before bed.
Reading: Much more helpful than watching TV.
Masturbate or have sex: Get it on by yourself or with someone else! You think I’m kidding, but it works wonders if you need some help winding down. Sometimes it’s hard on the Gastroparesis if you eat late. But if you can stomach it (literally), DO IT.