It started with me falling down on a Zoom call for work on September 4, 2018. I couldn't talk, I couldn't walk, I could barely move my arms. I fell in the kitchen without my phone but luckily I was able to pull the computer to the floor when I fell. It took me 10 minutes just to type HELP to my boss on my computer. He knew to call my partner JJ. But in a fluke occurrence, no one could reach JJ for over 60 minutes. So once I had a little sensation in my limbs, I slithered across the kitchen, the living room, and my bedroom, dragging the computer until I could reach my cell phone. When I finally reached JJ, they said that was the longest 30 minute drive to get to me in their whole life.
I was having a hemiplegic migraine. This is a neurological condition that looks like a cross between a stroke and a seizure coupled with excruciating pain throughout my body, especially my spine. It paralyzes/weakens my limbs for anywhere from minutes to days. It leaves me temporarily unable to speak or communicate clearly.
That day made me realize that because it can strike at any time without any warning, I need to add additional protocols to my safety routine to ensure that I am not left in a dire situation without any support.
In addition to realizing I need better safety measures, I also am still struggling to calm the subsequent flare that has occurred over the last year. In the last 12 months I have been the most symptomatic I have been since I was first diagnosed in 2011. All of my time, energy, and resource has gone towards shoring up my emergency support system AND more importantly, trying to get to the root causes of my condition. It has made it impossible to work and we (JJ and I) have accrued a lot of debt in the process.
JJ has been a rock, but it has really stretched them really thin. They have had to take Family Medical Leave and have used all of the time they can to support a partner for the whole year and even have (with permission) used some of their sick time to support me. Now they are worried that I will be alone if I have an emergency again while they are at work. Part of the fundraiser is to give them a break and provide additional caretakers especially during their work hours.
My current neurologist says change is the enemy of migraines, but obviously change is the only constant in life. This year has been really destabilizing because I stopped working from home and tried to work out in the world (and had to stop), I got a service dog Nico, who I love more than anything, but whose care (including walking) is a new energy consumer for me, my cat and my dog both had surgery, my partner hurt their back and their knee, my attendant stopped working for me abruptly. Given all of that, it's not surprising to me that the migraines intensified, but also all of my symptoms changed. The condition has always been unpredictable, but this has made it impossible to know how my body will be each day. I know that I can learn the new patterns, but it will take some time.
Healing is hard work y'all. I have had to go in! It's been grueling looking at my early childhood trauma, the patterns and addictive behaviors I am engaged in that no longer serve me; the hard honest truths I have had to tell myself have brought me to my knees at times. I have had to accept new limitations and to grieve enormous losses. The stress of healing ironically has also been a trigger for the migraines. But ultimately I know I am heading in the right direction.
You know the expression it is darkest right before dawn? I have that feeling right now, like I can see the sun starting to rise and I just need hang in a little longer. This fundraiser is me asking my community to hold me in that darkness and to remind me that the sun is coming.
Recently, thanks to my dear friend Maya, I discovered that I am really responsive to magnetic therapy and that has given me a little traction and faith to reach out again after many years of giving up hope of being helped by Western Medicine after so many racist, ableist, harmful encounters.
I have found a new functional neurologist that believes what I say, sees the connections between my different health issues, and who feels confident he can help me get my condition under better control, but I have Kaiser insurance and they won't refer me out of network or cover the cost.
So please help me by being a light in the darkness before the dawn. This fundraiser will allow me to do the following:
1. See the functional neurologist who understands all of my complex medical history AND has a plan to treat me as a whole person!
2. Get some much needed and long overdue medical equipment and service dog equipment.
3. Help me pay down the most high interests loans and credits cards and pay back people who have loaned me money.
4. Give me a couple of month's respite from worrying about money to allow me to focus on my healing.
Here is an itemized breakdown of what I plan to use the funds for:
Funds for the new neurologists and testing: $5000.00
Three months of Respite Attendant Support to give JJ a break: $2,400.00
Special Service Dog Equipment for Me and Nico: $1000.00
New Theraspecs Sunglasses: $400.00
These glasses allow me to tolerate fluorescent light and sunlight for longer periods of time! I have one set and after many years they are close to breaking!
Heartmath Inner Balance Self regulation training program: $159.00
(This was recommended by my pain management specialist.)
New medical alert watch: $500.00
When I fall down this will allow my care team to find me and come pick me up.
Molekule air purifier: $800.00
EMI for nausea $91.00
Nikken Magnetic Therapy Products: $400.00
Funds to Pay Down My medical debt/debt accrued while sick on credit cards/loans: $4,000.00