- J
Dear friends and supporters,
Thank you for taking the time to read my story. My name is Eileen and I am at a crisis point in a long journey of medical challenges. My friend Minde has graciously offered to set up this page on my behalf.
As you may know, I have faced significant health issues throughout my life. The first major injury occurred while I was teaching preschool over 20 years ago. As my health issues have increased, I’ve adapted and re-adapted. I’ve fought at every turn to continue working and maintain my independence. More than once, I’ve moved across the country, gone back to school and changed careers to accommodate my health.
In November 2021, I left a position I loved, hoping to rest and recover before returning to the workforce. Instead, I've been fighting a private and losing health battle ever since.
- I have debilitating all-over muscle weakness and pain
- I have limited control of my limbs, muscles and movements
- I’ve gone from walking with a cane to requiring a wheelchair to now being mostly confined to bed
- My head and neck require consistent and significant support
- I have difficulty breathing
- I have difficulty chewing and swallowing
- These difficulties lead to severe coughing and choking fits
- Sensitivity to light, sound, temperature and touch require constant attention and can trigger attacks
- My attacks are painful, violent muscle spasms or seizures that last from a few minutes to many hours
- It is increasingly difficult to speak and communicate, my words slur and seem to get stuck in my throat
While doctors are still working to provide a definitive diagnosis, the consensus is that I have neuromuscular disease and/or movement disorder that is causing my health to deteriorate.
In short, I require support for nearly every aspect of my life.
Currently, I live at home with my beloved companions - my dog Johnny and cat Whitney. I have a beautiful garden that brings me peace and joy every day. I have neighbors and friends who check on me regularly. I have the freedom and support to create an environment where I can both cope and find inspiration.
I have applied for disability and have legal support, but the SSDI process is arduous and unpredictable. My case is still waiting for initial medical review so it could be many months before a final determination. I receive a few hours of daily caregiver assistance from the state, which has been absolutely crucial, but it is not enough to safely meet my needs.
Your help will provide immediate relief
As I navigate this difficult new reality, I'm reaching out for help. Your support would assist with:
- Essential daily living and housing costs
- Extended caregiver hours and support
- Medications, medical expenses and diagnostic tests
- Aides and support for swallowing and eating
- Adaptive equipment and supplies
- Comfort and peace of mind
While I work towards more concrete medical answers and developing a long-term care plan, your generosity would provide immense and immediate relief during this uncertain time.
I want to again offer my gratitude to Minde for helping set up this page, and to each of you for your support.
I cannot understate the gratitude I have for my caregivers. They have been with me on the most difficult steps of this journey, working to move every boulder out my way. They make adjustments and accommodations so that even on my worst days, I can feel like I’ve had a normal & happy one.
Thank you to everyone who has sent cards, notes & messages. While it is often difficult for me to respond, I feel you and appreciate your thoughts and warmth.
Please share my story! Everything helps.
Brightness, Cheer, Good Vibes & Well Wishes to you
With heartfelt thanks,
Eileen, JohnnyCake & Whitney
Organizer
