Help + Hope = Home

May 16, 2025

I hope to be going home the week of Memorial Day. Looks like I’ll be here for one more holiday but hopefully home by June! I’m having my bedroom floor redone, replacing carpet with a vinyl floor to make transfers safer. Also my equipment will be on wheels so will be easier to move things around on a hard floor. Once the flooring is done, the plan is to do a home visit with hospital physical and occupational therapists and a nurse to be sure my environment will work safely for transfers and toileting and showering. I have no doubt it will all work fine in my home with a caregiver since I have worked hard over the years adding necessary equipment. So I don’t have a discharge date yet as I’m waiting for a few final pieces to get done. I’m patiently waiting and also a bit overwhelmed by the transition home. I’m trusting it will all go smoothly in the right timing.

May 8, 2025

This is my story.

I’ve been living with a rare type of Muscular Dystrophy for my entire life. MD is a genetic disorder that progressively weakens all skeletal muscles, including breathing muscles for me. In spite of this, I have lived a wonderful life, full of ups and downs and plenty of losses along the way. Through it all I find joy in the simple things.

In my past, I worked as a Business Analyst for 15 years and found it to be both rewarding and challenging. I was married for 12 years and enjoyed having a partner in life with all the adventures that came with it, but have been divorced and on my own for 11 years. Nowadays, I love getting a cup of coffee with a friend and having long conversations about life, especially outside on a sunny day. In the summer, I frequent the Farmers Market, enjoying the fresh air, shopping, and visiting with the vendors. I like to host small gatherings in my home with friends and family. I am a Christ follower and used to lead Bible studies in my home. I love meeting new people and learning their stories. I have a passion for cooking, baking and gardening. And of course I like to binge watch good shows from time to time.

Over the past decade I have added several types of assistive devices to my life in order to continue with my daily activities and live independently in my home. I have worked hard at figuring out how to adapt when my abilities change. Unfortunately, there are few adaptations to difficulty breathing and in recent years I could feel my breathing become more and more challenging for me.

In November 2024, my health took a decisive turn. I couldn’t seem to take deep enough breaths to sustain healthy oxygen levels in my blood necessary to function. I was admitted to the hospital on November 30th and after about a week of observations and tests, I was advised that my only options were to continue the difficult, shallow breathing thus risking emergency respiratory failure or to choose a tracheostomy procedure and be hooked to a ventilator. Just as I was turning 50 years old, my respiratory muscles had reached a tipping point and I had to make a choice for my future.

There are no words to describe what goes into a decision like this; choosing between a lifetime of needing help, dependent on a machine versus possibly no life at all. I chose life. On December 14, I had the tracheostomy procedure and have been living and breathing through the ventilator ever since. But in choosing life, that means nothing goes according to a plan and there is no clear path in this new journey. I have found myself stuck in limbo at the hospital for over five months unable to return home alone, but with no true guidance on how to navigate all that is involved in getting back to my life. The goal now is to return to my own home, but in need of greater assistance than I ever thought would be necessary at this juncture.

The reality is that I will need 24 hour care at home, because I now need help with transfers to the toilet, bed, wheelchair, etc. I was able to do all of this myself prior to this hospitalization. I also need the 24 hour care now that I have a trache and vent. I cannot take care of all that goes along with it on my own. If something goes wrong and it’s not something I can handle alone, my life would be at risk. Having full time mechanical ventilation through a foreign object in the body is not an easy thing to adjust to and there are many protocols and daily procedures that come with it. So with all of this being said, I will be hiring caregivers to cover 24/7 care in order to continue living and thriving in my own home for as long as possible.

This is where my need for help comes in. I have never qualified for government help such as Medicaid, due to the value of my assets. My insurance, Medicare, does not pay for home care, but Medicaid will. I have hired an attorney to help consider my options such as paying off my mortgage and whether I can preserve any of my remaining savings for future living expenses while also understanding how to meet the Medicaid requirements on income and asset limits. At the same time I have to start hiring and paying caregivers as soon as I am discharged from the hospital, which will cost me about $18,000 a month. This reality is extremely tough to face but I intend on doing so with grace and appreciation for each day I am able to live a full life doing the simple things I love! Whatever amount you can donate to my campaign, I would be forever grateful for giving me the support I need to continue living in my own home. Someone once told my mom “where there is life, there is hope”. As long as I have this life, as challenging as it is, I will continue to have hope!

I heard about this nonprofit “Help Hope Live” through the Christopher and Dana Reeve Foundation and found the name to be perfect for my goal. By giving, you are definitely helping hope live in me!! Thank you so much.