The Week That Was, January 29th

The good patch I had earlier this month has definitely ended and the last two weeks have been pretty rough. I’m having trouble sleeping, eating, and breathing (along with the usual standing and walking). I keep thinking “how did it get so hard to just be a human being?” It’s pretty absurd. Aside from these obvious things, my spirit is strong right now, stronger than it has been in a long time. I hope that lasts awhile.

-I finally saw my GI doctor last week for the first time in a year and a half. Last time I saw him, I explained that after all the trial and error we went through to manage my Dumping Syndrome, all the prescriptions we tried that failed, my GI issues were starting to stabilize since I had stopped working and started using imodium every morning. The GI issues are still my most difficult Dysautonomia symptom to manage but not working has made a huge difference in managing it. When I told him this, he basically broke up with me: “just call me when you need me.” I had finally got back to my normal weight then. It was such a struggle to keep weight on while I was working.

I kept that weight on for a good year. Sadly, since I’ve had an intestinal infection the last few months I’m back to the weight I was when I was working, which feels like failure. I’ve lost about 10 lbs. When I first got ill in 2010, I had an infection then also but I lost 20 lbs that time. Luckily, this has not been as bad. He gave me some awful liquid medication that’s cherry mint flavored (the horror!) and if that doesn’t work, I switch to an antibiotic. Hopefully the liquid medication will finally take care of it.

My medicine and husband's "medicine"

We should start a petition to stop pharmaceutical companies from adding awful flavors to medications. I can still taste the bubblegum amoxicillin my sister and I were always on when we were young. I'm sure that flavor stands out to so many people from their childhood. Awful.

-I finally got a hair cut! It’s been about 6 months. I had to cancel my appointment multiple times but I finally made it yesterday. It’s amazing how such simple tasks so many take for granted can be mountains to climb when you are ill. It’s been two years since I’ve dyed my hair and that’s my next goal. The prospect of sitting up in a chair for 1-2 hours is a bit daunting. Before I got ill, I got my hair done every few months. I have been dyeing it since junior high so I had no idea what my natural color even looked like. But when I started losing handfuls of hair and illness took over my life, it became a non-priority. I want to make it a priority again because even though I don’t get out much, it helps me feel better about myself.

Bella got a cameo appearance

Even though our energy is so limited, I think it’s important not to lose the rituals of self-care during illness. I know that when I look better on the outside than I feel on the inside that always gives me a boost of self-esteem, a jolt of determination to power through the physical symptoms.

-We have been watching my oldest nephew most Fridays now and his younger brother has been so disappointed that he hasn’t been able to come. He called my husband last week and said “Uncle Dave, can I please come play Mario and eat gummi bears with you?” So my sister-in-law dropped him off on Monday and we granted his wish. After we played video games, he requested to watch a movie and he asked to watch Harry Potter. I was so proud I could’ve shed a tear. So we watched the first movie and I taught him some Potter spells to recite with the wand my husband made me. It was a great day.

-Even though I haven’t performed in almost two years and I’ve had to stop singing because of Myasthenia, I’m still committed to improving as a musician. Music will always be my greatest joy. It also helps me escape the physical symptoms and just wade in a vast ocean of melody for a short while—until my energy runs out. One of my goals still is to learn or memorize at least one song a week. Nat Cole has been one of my favorite musicians for most of my life and sadly most people have no idea what an accomplished jazz pianist and organist he was. Many only listen to him at Christmas time. I really recommend any of his recordings he did with his trio. I’ve avoided learning one of his most popular songs, "Stardust," for years because it's so challenging, but I’ve been trying to tackle it. My sister loves this song so I’m hoping to play it for her sometime.

-Speaking of jazz, here’s something hilarious. Jazz is my favorite genre of music. It’s my heart and soul, but some of the stereotypes about the genre are admittedly deserved.  Comedian Jon Benjamin decided to make an experimental jazz album so he got a group of accomplished jazz musicians and joined them on piano. Except, he doesn’t know how to play piano. Hilarity ensues. What’s funny, is some of the music could actually pass. Miles Davis said there are no wrong notes in jazz, so I guess you have to give it to him. This really is jazz. I played it for husband (who does not share my love of jazz) and he laughed. Listen to that gorgeous song by Nat Cole above, and then take a listen to this and have a good laugh:

-This is my 6^th post this month! That’s the most I’ve ever gotten up in a month so I’m feeling pretty good about myself. I’ve got more posts in the works and I’m hoping to get more interviews and guest posts up too. Stay tuned!

Some links from the week:  

Something long overdue: Lego created a disabled minfig

A new book that looks at the empirical research of “mind over matter.” I’ve added it to my must-read list for this year

A great article by a fellow Spoonie about overcoming the mind/body divide in Western medicine

My BFF Carrie Anne outlines some of her goals for the new year

A woman describes something so many of us know too well: her dangerous symptoms were dismissed by a doctor as “just anxiety.” A few days later, she had a heart attack.  Another example of the very real consequences of the gender bias in medicine

What Helps, Part One

I haven’t posted in awhile and the reasons are good ones. I’ve been living the very good life lately. My mom is doing much better but it will be an ongoing struggle with her health. Yet, my health has improved compared to the nightmare of December-March this year. Who knew? I am also feeling more optimistic and hopeful. I don’t wake up every morning thinking “What’s going to happen? Am I going to make it?” I have enjoyed this sudden plot twist.

I’m going to mention a few things that I am doing right now and what’s making a difference. Managing POTS and dysautonomia can sometimes be a lesson in futility. It’s constant trial and error for you and your doctors. Your doctors will likely not be well-informed about the rare condition, so you get the fun of being a lab rat and experimenting. Something can work for a few months and then suddenly it won’t anymore. I struggle with these four issues every day because of my compromised autonomic system: walking, standing, breathing, eating. You know, being a human being. As I mentioned before, dysautonomia presents differently for each individual, so some may experience similar symptoms or completely different ones. I am always looking for solutions (pharmaceutical and non-pharmaceutical) to manage these four struggles. This is the first list of things I have tried that help me be able to leave the house and be upright and bipedal:

Compression Stockings

Ok. I have made a terrible mistake. I wasted so much time not wearing compression stockings because they have c.h.a.n.g.e.d.m.y.l.i.f.e. I can’t even articulate what a difference they have made. Blood pooling in the legs is the hallmark of POTS and is the reason for the drop in blood pressure and heart rate acceleration. Compression stockings restrict this pooling to maintain circulation. I bought some cheap knee high stockings in 2012 and hated them, so I initially gave up on wearing them. I know now that if you want to try compression stockings, you have to bring the big guns. The quality stockings that work are not cheap. They are jaw dropping, mind-numbingly expensive. I’ve been wearing the thigh high Juzo Soft line and they have converted me. I have worn them every day for the last three weeks and I will never teach again without wearing them. I have actually been able to stand just for a little bit when I teach. My students must have no idea who I am. Breathing when I am standing is much easier as well. You can also get compression stockings at discount surgical but what I really want is some from this site . I am still hoping I can convince my insurance to cover the stockings.

I got a little overambitious because of the stockings and walked around our local mall with my mother for a few hours the other day. I spent the next day bedridden. I’m still recovering from my mistake. Something as simple as walking around a mall was too much apparently, even with the stockings. Compression stockings are great but I still have to limit my time standing. They are not a cure-all. 

I was worried about the fashion options with compression stockings but these are no longer your granny’s stockings. There are all kinds of color options now. I have found that the 20-30 mmHg firmness is best for me but you have to decide what works best for you. When my first pair came in the mail I wondered if I could even fit them on my arm they were so tiny. They have been a game changer for me and I cannot endorse them enough. You also get to wear sexy doning gloves just for putting them on and be prepared it will take a good chunk of your energy to get them on.  I wish I hadn’t wasted so much time not wearing them. I now have to buy some skirts and dresses to tolerate wearing them in the summer. I’m a jeans girl through and through but it’s time to expand my horizons in the name of staying upright. This is a picture of a new dress and my thigh high, footless stockings. Pardon the poor quality and the colorless, haggard look on my face. I can thank the mall for that.

Oh Salt, My Salt

Salt Sticks: Not just for athletes

One of the first comments you will hear from a doctor who suspects POTS or dysautonomia is to increase your salt intake. Imagine the cognitive dissonance when a cardiologist tells you this. The body needs salt to maintain blood volume and to hold onto fluids. With dysautonomia, the body struggles to maintain this balance. When POTS hit me like a semi truck while I was working on my PhD, I ate a strict diet of vegetables and quinoa for awhile. I was unable to eat at that time without serious GI catastrophe. I know now that that was a mistake. I needed some salt. I now put salt on every meal basically and have just started taking salt tablets. I avoided taking them for awhile even though my doctors suggested them because I worried I wouldn’t be able to tolerate them. I also drink V8 almost every day and Pedialyte is my go-to electrolyte when disaster strikes. Many people hate the taste of Pedialyte but it makes me feel so wonderful when I drink it that I could care less what it tastes like. I feel alive and human and it has saved me from going to the ER on multiple occasions. Every Potsie I have come across has an electrolyte source they love. I have tried powders, Gatorade, etc but Pedialyte is the best for me. 

Food: Why Must You Be So Good But Scorn Me So?

If you have read the earlier posts on this blog, you will see that the GI issues were the main reason why my life was sucking so hard over the last few months. This battle is unspeakable and the details shouldn’t be uttered in print. It was, is, and will continue to be the most difficult symptom for me. It is the reason I weigh 10 pounds less than my pre-sick self and why my weight constantly fluctuates. It’s more difficult than the tachycardia, trouble walking, dizziness, everything combined. It was one of the first horrific symptoms when this thing started. The worst part is, the GI symptoms aggravate every other symptom. Not everyone gets the GI fun with dysautonomia. The autonomic system controls digestion so it is not uncommon with dysautonomia. Many get gastroparesis, which is its own special form of torture. I see a GI specialist at Stanford in a few months who might be able to tell me what the monster who lives in my intestines really is and how it relates to dysautonomia.

When I eat, I feel nauseous, and if I am having a rough patch, I struggle to be able to get any food down at all. I am constantly looking for ways to manage this. I have been prescribed Zofran for these times, but I always prefer to try to manage without medication and go that route only when desperate. Once you are diagnosed, doctors will tell you to eat small, frequent meals that are low in carbohydrates and I follow this advice without question. I have no other option. I have also become mostly vegetarian—mostly because I still love bacon and I eat fish. Bacon is also high in sodium, so there’s a bonus.

Some people go gluten-free or even vegan, but I would prefer not to because bread and cheese are happiness. I also rely pretty heavily on liquids, soup and Ensure especially. I eat much healthier than I ever have in life, and POTS has been a blessing in this way. I eat a lot of fish and vegetables now. This is from a girl who lived on Velveeta and hot dogs growing up. I don’t like to talk about it.

I can no longer drink coffee unfortunately. Every cardiologist I have seen has told me this. If you have ever been to graduate school, you know that life is not worth living without coffee.  My pulse is still around 130 when I wake up in the morning so coffee is out of the question if I want to be able to function. I’ve been clean and sober from coffee for two years now. Sometimes you have to make sacrifices. I’ll always be a coffee-junkie in my heart.

Food and I have come to an agreement recently and our relationship has improved quite a bit. I stick to a pretty strict diet and to foods that I know that I can tolerate without any problems. It works for me. 

The goal with any treatment or symptom management is to still have an enjoyable life. There may be limitations, but it doesn’t have to be a joyless experience. I’ll discuss more in the next post, including my adventures in pharmaceutical fun land.