Medical Rarity Means High Medical Bills

We have come to the conclusion we need to start a GoFundMe page.  This is a very humbling experience. We need help and can't do this on our own.   As you know we have been battling my health issues for almost 4 years now.  We have received several diagnosis' and plans of treatment, traveled to some of the top doctors and facilities in the country to get help but they have not been able to slow this down to date. In doing so we have maxed all our credit cards, emptied our checking and savings, and still continue to accumulate medical bills along with all our regular stuff.  We have also maxed out Diann's vacation days so any time missed for appointments or hospital stays has been unpaid. This is hard on our finances and is causing additional stress. Here is where we are now:   Financially :We have medical bills stacking up and even making payment plans has a huge strain on our budget.  Medicines are costing a lot too even with disability insurance. Physically: I have not been able to eat and hold down any significant amount of food for almost 6 or 7 months now. I have a 24/7 continuous feeding tube that causes pain when water, my meds, the formula, or pureed vegetables are going in.  I can't take in anything by mouth or my stomach port without vomiting. Everything goes to the jejunum. I have zero energy and feel sick all the time even with stomach meds. I am about 90 to 95 percent bed bound. Most movement is painful and causes vomiting. I only leave the house for doctor appointments these days.  I have to wear a mask when outside or near people because I am severely compromised in my immune system and with mast cell activation I can develop a sudden anaphalactic shock to something as simple as a person's perfume or a pollen. I am in severe pain from the top of my head to the toes on my feet ALL the time from the small fiber neuropathy.  My digestive system has failed. We are exhausted. We are tired of trying the new meds, diet changes, and all the side effects that come with each new med. We have been referred to hospice as the issues I have are not curable and continue to rapidly get worse. They are currently trying to determine if hospice or palliative care is more appropriate for where we are now. We are still deciding the best path. We are not giving up and are still trying to explore solutions for getting to better health. We need your support - whether it is through donating financial means, prayers, good thoughts, or just reaching out to say hi. Please know we are very grateful. We wouldn't ask for help unless absolutely needed. We are doing everything we can and it isn't enough.  We promise to pay it forward when we can.