Imagine if you will, you are in the prime of your life. Married. With two beautiful and amazing children and suddenly your entire world implodes. You get a disease that few seem to be able to identify in a timely manner and the perfect storm hits your endocrine, neurological and endothelial systems. You go from taking your children to school and soccer practice and cooking dinner to not being able to stand, walk, cook, bathe and even talk or move at times. Your GI motility and bladder motility and respiratory function are all greatly affected by severe autonomic dysfunction. This  creates many serious issues. There are lesions on your brain suddenly and you at times have seizures just trying to sit up to use commode next to your bed. At times, you are fully in depends undergarments as even moving on your side will completely take out your body. 
 

Now, let’s add in, you fall through cracks of the current medical and insurance systems. You have to have a family of four live on one income in this day and age where a carton of eggs is $7 Because you cannot work let alone sit up to pee at times. And, you have to pay for your own wheelchairs privately, your own oxygen machine, your own nursing aide services so you can get bathed in bed once a week with a sponge bathe. And do many other private pay items for a bedridden patient.  Also,  many private drs and tests since there are very few drs if any at all that treat my specific set of issues in the entire northern half of my state I have been continuously told. 
 

And now, fast forward 7 years…. and I am still here. The good news is, I’m alive. The bad news is, it’s been a massive fight to stay that way. It’s surreal that I live in a world of one room in 2024 but that is unfortunately where we are at with this disease and the complications that have arisen and our current medical system. I have mostly only left this room by ambulance to and from since 2019. No, you are not reading about A twilight zone episode, but the story of a real woman and her two children and husband that have been faced with a steep mountain, few guides and next to no assistance beyond the many beautiful volunteers and family and friends that have helped keep this ship afloat through the years. 
 

It is one of the most difficult things to have to continue asking my community for help 7 years later but here we are and it’s how I’ve managed to get as far as I have. It’s simply not possible to afford my medical needs and expenses on one income. With zero other sources of aide or income beyond donations. 

 I am here today to request help because I got covid in March. I became very unwell with Covid pneumonia and it worsening preexisting conditions. I had to take 8 ambulances to and from hospital in March alone.  I had to have home healthcare (living hospice) for 8 weeks afterwards. I had seizures if I even tried to sit up for sometime. I have since made some progress with upping dosages of supplements and medicinal herbs. I have MCAS and severe dysautonomia and began having full body reactions to simple things such as Tylenol suppositories in March. It also greatly limited what I could eat and I’ve been on puréed foods for months just to sustain myself. 
 

I need some upcoming medical tests per neurologist and cardiologist that will be $6500 after insurance. I will need more next month. I need an oral surgery and dental work the oral surgeon is waiting on clearance for from my cardiologist.  I do not have dental insurance. My transport is tricky at best. Cardiologist has been ordering ambulance transport to and from appointments and that is $900 a pop. Insurance is denying it currently but drs snd ambulance company are contesting it. We have possibly located a cheaper mode of medical transport but is $380 and insurance will not cover. Private pay only. My O2 significantly drops upon each turn in a ambulance or van etc amongst my bladder and GI motility starting to shut down and I’ve had to purchase my own portable Oxygen machine as I’ve been advised to do. Private pay. I have a nursing aide that comes to help spongebathe me weekly And with basic needs and that is not covered by insurance. $170 private pay a week for absolute minimum care. 
 

I always put my family first.

I don’t want to sink us. 
I also like living and staying alive though as well. It’s a fine line. I cannot express the appreciation I feel at the volunteers that have helped me get as far as I now am. Although, still quite restricted, I am much stronger than I was years ago. Much  gratitude to treatments and specialists I’ve obtained the funds through from you guys.  My daughter and I recently made blueberry crème crepes in an electric skillet in here in bed for our family and it was such a joyous moment for us. It may not be normal, but, it’s our normal and I wasn’t capable of this 3-4 years ago. I love my life despite the cards me and my family have been dealt and I love y’all so much. It takes a village and I will never have words to show the gratitude I experience for my village. 
 

Much love beautiful humans.