Rare Disease Frustrating Patient and Doctors
Rare diseases. There are many people who have many different ones. They come in all shapes, sizes, and don’t discriminate…One thing applies to all though. They are frustrating!
Having a rare, potentially fatal disease that has no cure is frustrating.
I have been trying my hardest since my diagnosis in 2015 to educate myself about my disease. There is no choice but to do it because the healthcare providers are not taught much about the rare ones.
I have no problem teaching my doctors. They have a problem with me because they don’t know what to do with me. Some tend to toss me off and zip out of the the room with a shrug. They are frustrated too.
Now, this disease (Polyarteritis Nodosa) has been damaging more of my arteries and nerves lately. It’s affecting my head, face and vision. My rheumatologist knows what medication is going to help me. The problem is that the last time I was given the Rituxan infusions it caused my lungs to generate inflammation and I wasn’t getting enough oxygen. I don’t know what the answer is today. However, I have a consultation appointment at Mayo Scottsdale coming up this week and I am praying for an answer.
Frustration extends to my family members who are tired of hearing about my adventures. My sister called me a “Project “. Oh well. I am.