Dysautonomia awareness month! What does this mean to me? It means i try to raise awareness for dysautonomia. Educate, and share my journey.
In 2013, I was diagnosed with dysautonomia. Now, there’s 15 different forms. I have THREE! Three different forms. 8 years ago it was so bad I couldn’t stand up without fainting. It was terrifying. I had to give my dreams of getting a Masters in Psychology. I was angry, scared, unsure of what the future was. All while being a mom to my son, a single mom at that. I’m immensely grateful for the support and help of my family during that time.
I didn’t drive for over 6 months. In 2012, I had to have a cardiac ablation due to a rare form of SVT. This led to my needing a pacemaker. My electrophysiologist decided on the Biotronik Evia DR-T. This pacemkaer is unique in that it has a special programming feature specifically for Vasovagal syncope, which i had. This has been an absolute godsend for me. My fainting has dramatically reduced, actually i haven’t fully fainted in years.
Adjusting to life with a pacemaker was overwhelming. Learning my do’s and don’ts. Come to find out, i’m hypersenstive to certain things and could actually feel when my ventricle lead was working. Unfortunately this meant that lead couldn’t be on, or it had to be set very very low. I’ve learned in recent years, this pacemaker has become key for alot of dysautonomia patients to regain some quality of life.
Post op I developed complications. I couldn’t walk. I nearly lost complete use of my legs. I had to use a walker to get around, even in my house. Wheelchair rentals when going somewhere. I started physical therapy but no one had any clue what was going on. It seemed to come in waves. I’d be fine for a few weeks, then “relapse” worse than the last time. Through a lot of hard work, and physical therapy my gait has improved. I still tire easily and now use a cane. Though, we are awaiting a wheelchair for bad days and long walking days.
I dealt with temperature regulation issues, GI issues, heart rate issues, headaches, fatigue. Oh man was the fatigue horrible. Doctor after doctor. Treatment trial after trial. It was overwhelming, seemed never ending. Eventually i’d had enough. The medication side effects were worse than the disease symptoms. After much discussion with my medical team, we decided to stop the medications, and trial IV fluids. My EP in Virginia had success with other patients doing this, so we gave it a try. Well what do you know, it was like a battery charger for me! I wasn’t as fatigued, heart rate wasn’t as erratic and my blood pressure stayed stable. This was amazing!!! So, it was decided to place a central line so i’d have constant access for fluids.
So fluids was my magic elixir! A picc line was decided. We placed it in spring 2014. It was honestly a horrible experience. in August 2014, I became very ill. Incredibly ill. Vomiting for hours, fever that reached 104.9. I was scared, and out of it. I don’t recall much of that particular night. My dad rushed me to the hospital. My primary doctor met me there. Labs taken, cultures done.. Picc line removed. I remember waking up the next morning. Apparently my team did not expect me to make it through the night. How terrifying is that to hear? It’s really hard. It turned out I had a septic infection. Dangerous and potentially life threatening. I’m immensely lucky we caught it early on. What caused this? Honestly, I feel it was the lack of proper protocol by home health. I am now a stickler for protocol. If you do’t know it, or can’t follow it, I will NOT allow you to touch my central line. This is non negotiable to me.
So here we are, it’s 2020. How am I? I have good days, and bad days. Every day I strive to make it a good day. To make memories with my son. I strive to live. By learning my triggers, by learning my limitations I was able to adapt my life and still live! Yes you read that right. I adapted to my limitations and still live. I choose to not allow dysautonomia to take my goals, hopes and dreams from me. I don’t want you to do that either. Yes dysautonomia is life changing, but it doesn’t have to be life ending. With treatment catered to you, learning your safe activities, you can still live. I want you to live. I want you to believe. I believe in you.
Stay true to who you are. Stay true to your goals, hopes and dreams. Please never give up.
3 thoughts on “October is…dysautonomia”
I wish my doctors would listen to me and increase my IV fluids. I have gastroparesis, and can only get an additional 300 ML of water through my tube, and they want me to get an additional 1200 Ml, but that’s not possible. I don’t even get enough sodium either. It’s really hard. I am also lookinto a custom wheelchair. I’m glad I found your blog.
Hi! I’ve found it is incredibly difficult to stay hydrated. I definitely don’t get nearly enough orally or via tube. Many doctors don’t seem to understand how we feel when we aren’t getting enough fluids. It’s also confusing and frustrating that our labs don’t always show we’re dehydrated, despite we having the symptoms. I’ve been working to get my custom wheelchair for about a year. I’m glad you’re here, and if i’m able to help with anything, don’t be afraid to reach out!
Are you in the Gastro paresis support group on Facebook? I found your blog through the podcast DX video on YouTube. Always Live to Inspire