Setback

Bouquet of Flowers from my BFF.

2012 seemed to bring a level of stability in my health that 2013 has not. I've been struggling to find 1. the energy to blog, and 2. the words to say. I've been busy writing fun blogs about the puppies, but today, it's time to be honest about my health. Here's a brief update of the past few months.

When, in November, my GI symptoms started, I assumed it would be a short-lived flare of gastroparesis typical of my pattern--a few days of a bland diet, a few Reglan, and I'd be back to my baseline.

Instead, the gastroparesis flare continued, worsening gradually until, by January it had become intolerable. As a result of my extreme GI symptoms, my ANS decided to soar into a MAJOR flare too. Since that time, I've been completely absorbed by the demands of managing my health needs.

I found this explanation from Dr. ANS of how the two play off of each other incredibly helpful:

"Any pain alarms originating from the GI tract will flood the central nervous system, and overwhelm the ANS with signals of incoming danger. As a response, the ANS is on red alert, constantly. A red alert ANS translates into worse fatigue, fogginess, etc." 

"Just a Little Cheer" is what Jeannine wrote on the card.

Our focus over the past few months has been to calm both the GI system down and the ANS. I've been bonding a lot with my healthcare team: Dr. ANS, Dr. GI, massage therapists, and now an acupuncturist. Almost daily I have an appointment to go to or a test or an email to write. That has taken every ounce of energy I have. 

A combination of medications, an endoscopy with Botox injected into my stomach, acupuncture and juicing to get nutrients has gradually been improving the gastroparesis symptoms, but they are still not resolved. We're all puzzled as to what might have caused this flare or why it has been so difficult to settle down. 

The ANS symptoms are proving to be an even greater challenge, as our hope was that when the GI symptoms began to settle down, the ANS symptoms would also. Within under five seconds of standing I am having tachycardia and feeling as if I will faint. I'm unable to pick out an outfit for the day myself,  stand at the sink to wash my hands, get something out of the refrigerator unless it is where it can be grabbed immediately, make it up the elevator to my appointments without difficulty. Getting dressed, getting a bath, letting the puppies out have taken on a new level of difficulty. I have stools and chairs set up everywhere! Even sitting results in a fast heart rate. I'm exhausted beyond my usual, I feel too sick to watch a movie or a TV show that requires concentration, train the puppies, or go on any sort of outings, and my evening check-ins with Jeannine result in air hunger and exhaustion. It's been a very long time since I have had this level of POTS symptoms.

Dr. ANS is working closely with me to try to calm the ANS down, but we're both puzzled and presented with a challenge that has proven so far, not willing to resolve. Our hope is that the acupuncture, massage, juicing, some medication tweaks, etc. will all bring improvements. I'm incredibly blessed and grateful that I have access to the kinds of treatments and care that I do. Sometimes, though, I long to not be going to an appointment every day to deal with my health.  

One of the most beautiful bouquets I've ever received.

Mom and I are both feeling drained and exhausted from this setback. It's been all-consuming, and I miss having time to reach out, blog, train the puppies, or enjoy other things. When I am going to appointments for health reasons every day, I don't have energy for anything else, which leaves me feeling isolated, lonely and sad. Thankfully, I have friends and family who continue to reach out, a caregiver who will pick out clothes and make green juice for me, an amazing healthcare team, books to listen to when I am able, fluffy TV shows, lots of pretty nail polish, and three awesome furbabies to lighten what can sometimes feel unbearable.

I wanted to at least reach out via my blog today to let my friends and family know why I dropped off the face of the earth. It's hard to write these posts because I so want to have better news. On the days that I don't have appointments (which are few and far between), it is my hope that I can expand on the treatments I have received and am receiving. For now, I'll try to use my blog, Facebook, texting/iMessage, and Path to keep in touch as I am able, and apologize as always that most emails go unanswered (but never unappreciated!).

Blessings,

Emily