Skip to main content

A new chapter and a new partner

It's been almost 2 years since I have posted to this blog. Believe me, I have tried. I have about 25 saved draft posts that never got published because they ended up sounding like the same repetitive story. Another pattern of rumination. Another soliloquy of self pity. 

That's because the last three years of my life have been fairly cyclical and unchanged. I have a few good weeks where my symptoms plateau and I faint only once or twice a month. Then, a storm hits. I get a cold and I crash into a regressive phase where I faint daily, injury myself, get frustrated, and then slowly move back up to the plateau. 

I have been tired and frustrated as I put grad school on pause, as I continue living with my parents, as I take three steps forward 2 steps back. So I stopped blogging and started to do what I could to move forward, pretending I am not sick, and working on ways to get healthier like a normal 24 year old. But still on pause. 

But over the last few weeks, I have gotten several amazing pieces of news. I have gotten an offer from Oregon State University to teach undergraduate classes while working on my master's in Public Policy. My partner got a similar offer for studying and teaching creative writing. We started to plan our move out to Oregon. But I held on to my signed contract, not mailing it in, knowing that I couldn't move 3,000 miles away when every few weeks brings another flare of symptoms. 

Then, I got the call. 

After nearly 3 years on the waitlist with Canine Partners for Life for a cardiac alert service dog, I have been paired with John the service dog. John will provide me with stability and support with walking and standing throughout the day. He will also be able to alert me to my syncope, giving me the ability to prevent a fainting spell or get myself to a safe place. I cannot begin to describe the reassurance and independence this new partnership will provide me.

Canine Partners for Life has 30 years of experience training service dogs. They have paired dozens of dogs with individuals with my exact condition and many have been able to prevent cardiac episodes all together because of their service dog's alerts. You can see NBC’s Brian Williams talk about them here. 

With the gift of John, comes a lot of financial expenses. John and I will meet and train for three weeks together this July in Pennsylvania, where we will learn about each other and become partners. During those three weeks, I need to cover the cost of various training field trips, travel expenses, lodging, dog food, and a very long list of service dog supplies. Canine Partners asked for me to only pay for a fraction of the $30,000 it cost to train John over the last two years. My goal is to raise $5,000 to help cover these costs. I am doing so here: https://www.gofundme.com/bring-john-home-to-tori


Being paired with John has already opened so many doors for me. I have committed to OSU and will start classes in September. I will bring John home in July and we will start our move out west. For the first time, in a long long time, I feel confidant making plans. 
Labels:

Comments

Post a Comment

Popular posts from this blog

My first trip to Johns Hopkins

Hello outside world! It's the end of Day 2 in Johns Hopkins and I just got my laptop so here's the update.  After my lovely weekend with my friends, I spent most of Sunday relaxing on the couch. My BP was not great (78/49) and I spent a lot of the afternoon working to raise it (If I ever liked Gatorade, I don't anymore). After dinner I felt very ill. I got nauseous, with very little energy. I could feel my BP dropping so I spent the evening in the wheelchair. my vision went blurry and I couldn't focus on anything. In the middle of a conversation with Ally, I fainted in my chair. My family worked to pick me up out of the chair and lay me flat to try to regain consciousness. I was out for about 3 minutes and then spent another 20 minutes going in and out. When I tried to get up to use the bathroom after resting, I fainted again. I couldn't stand or walk or hardly sit up.  So we went to the Emergency room at Johns Hopkins Bayview Medical Center on Monday morning....
Post a Comment
Read more

Vanderbilt Dysautonomia Clinic

When I got my POTS diagnosis in July, I applied to the Vanderbilt Dysautonomia Clinic to try to find some answers. Since Dysautonomia is a field of medicine that is underfunded, under-researched, and fairly new as a diagnosis, there are not a lot of specialists, research clinics, or POTS-literate physicians. The clinics and specialists that do exists are swamped with patients and the wait-list is months long. I applied in July and my appointment was March 10th. My incredibly supportive parents drove me out to Nashville last week for my appointment at Vanderbilt Dysautonomia Clinic with Dr. Robertson. We spent the night with my aunt and uncle in Franklin and then arrived at the clinic Thursday morning at 7:30. First I had a blood volume test. This consisted of using an IV line to take blood samples, administer a radioactive substance into my line, and then take more blood samples in 6 minute intervals. The purpose of this was to measure how the radioactive substance was diluted in ...
Post a Comment
Read more

Another road

I haven't posted on my blog in a very long time. I promised myself when I started this blog that I wouldn't neglect it. When I started it in the depths of my illness, when I was the sickest I'd ever been, I found that blogging was therapeutic and cathartic but it was also hard. So I promised myself that no matter how busy or tired or stressed I was, I would make time for my blog. I knew it was good for me. But I made another promise. I promised myself that I wouldn't let my blog become an echobox of self pity or whining or complaining or self-indulgent gloominess. I was going to write from a place of honesty but I was also going to write from a place of hope. Lately, these two promises have been in competition with each other. During my winter break I celebrated my first Christmas with my illness. My first New Years. I had a hard time balancing my health and my strong desire to celebrate and live normally. I'm still having trouble accepting my new normal, espec...
Post a Comment
Read more