Zebra Seeking Spoons

I can’t believe it, but I’ve had yet another good new patient appointment with the provider! My pain doctor referred me to see a rheumatologist to help finally get me on the medicine I need for my immunodeficiency and my osteoporosis and I met with her today and she was absolutely amazing! She’s very knowledgeable about Ehlers-Danlos Syndrome and other connective tissue diseases and is more than willing to go to the bat and fight for me when it comes to insurance. It is so exhausting when you hardly have any energy to begin with to spend so much of that energy managing your medical care, but that seems to be the case more often than not when you have a rare, chronic illness. so to have somebody that’s in my corner and by my side and willing to lift the burden it takes on me is a true gift. Once I finally got a few really great specialists it got easier to find others because they were referring me to each other.

I’m still trying with frustration to get a hold of my GI doc to have a legit conversation about getting me put onto TPN (total parenteral nutrition) so I can finally start gaining some weight and getting some better nutrition in my body. She’s booked out all the way into next year for appointments. I’ve been trying to at least be able to get a hold of her online. Her nurse did say she would let her know I needed to talk to her, but I’m still waiting for a response having my body be at this Severely low weight for as long as it has been is not safe and since the feeding to failed so miserably the only option at this point would be TPN and I think it would be a good option, even if only for a few months. So I’m really hoping that I hear back from her office soon either to talk to her or to talk to somebody else about getting the process started however, all in all it’s been a win for doctors appointments for this here zebra lately. 🦓