This ride that takes me through life
Leads me into darkness but emerges into light
No one can ever slow me down
I’ll stay unbound”
Despite having a rough start this morning, I did wake up feeling a lot less emotional about the future prospects of my healthcare. I knew these feelings wouldn’t last too long, they never do, but I am glad the darkness has finally passed. After I woke up super early to take the foster dog to the vet clinic to get neutered today (which was cancelled, as he is still too skinny to go under anesthesia), I came home, finished an assignment for school, and then spent the good majority of the day napping. I think I just needed to catch up on some rest to find myself again. I often tend to keep pushing and pushing myself until I finally break down, both physically and emotionally.
“Sometimes when we’re young, and always on the run
It gets so dark and I know that place yeah
So don’t be too concerned, you’ve got a lot to learn
Well so do I and we’ve got plenty of time yeah
Don’t fall off the track yet with so many races to go
After my much-needed slumber, I went to a follow-up appointment with my primary care doctor. I brought all the updated, abnormal test records from the last month or so. She seemed quite elated that the specialists were finally getting close to a diagnosis and that there is finally some answers. She believes there is a hidden autoimmune issue going on, perhaps still Lupus, but I may just be lucky enough to be seronegative autoimmune (where I do have autoimmune disease, but it won’t ever clearly show in my blood work). I asked her about a referral to another vascular surgeon for a second opinion. She said she didn’t think it was necessary, as the cardiologist seems to have everything under control and could do possibly do the surgery himself, as many vascular surgeons and cardiologists work either closely together or doctor may be trained in both areas. At first I was confused about this statement and got kind of frustrated, thinking to myself, really? She won’t give me a referral? But I guess it makes sense. I told her what the vascular surgeon originally had said, about how these conditions don’t really exist and that if they did actually exist, there was no way I could have all of them (despite the CTA results). She looked at the report and says it clearly shows I have them, and that sometimes specialists often don’t have the best ‘bedside manner’. Her theory is that he is set in his ways and is probably a great surgeon “for horses” but not for “zebras”.
She did tell me, that doctors often forget that we don’t know what happens “behind the scenes” in cases that are as rare as mine. Typically, the doctors up at the specialty hospital are more than likely doing research and setting up my move over to the dysautonomia clinic in Denver. She says there, I will see even more specialized-specialists (I assume like an electrocardiologist, etc.) and she wants me to hang tight for now and be patient (easier said than done), that they will probably have a vascular surgeon on hand (or fly one in) who is more knowledgeable on these types of conditions. Many times, she said, while I am supposedly just waiting for the last of the test to “rule out the final things”, the doctors are preparing and researching the next steps in creating a plan of action for when I transition to the “next level” (a new, more specialized clinic). I hope she is right. Maybe I worked myself up for nothing, but this wasn’t the first time I’ve experienced this situation with doctors over the years. I’m trying to not get my hopes up again, but maybe she knows more than she is telling me. I guess I’ll do my best to hang in there until I follow-up with the cardiologist in a few weeks.
“Some live so wrong, with what we do is each his own
But living in fear, endless shame for countless years
I never lived in fear I knew I’d die another day
I never viewed my life as something… slipping away”
Tomorrow I go back to the specialty hospital for a hydrogen-methane breath test to see if I have SIBO (small intestine bacterial overgrowth) or food intolerances. I’m not hopeful on this test, but again, it’s one of the final GI tests left to do.
The hardest part is always the waiting. I need to try and remember to live the best I can in the meantime, no matter how frustrated or tired I get with the process. Just sometimes, I feel my life is just passing me on by and I get scared that it will be too late before I reach the end of this road or that I will never ever truly live again. That’s a terrifying thought for me because there is so much still that I want and need to do in this life. But for now, I wait.
Unbound the Wild Ride
“There’s nothing here to take for granted
with each breath that we take
the hands of time strip youth from our bodies
And we fade
as time goes on…”
Lyrics: Unbound the Wild Ride by Avenged Sevenfold