#Tribalgoals
I always hear people say, “find
your tribe and love them hard.” I say,
“Amen to that!” But I have another tribe
I love hard too. My tribe of doctors and
nurses. They are simply amazing!
That is not something you often hear, but truly I would trust them with my life. I guess I already do. I have trusted them with my brain. There is proof I have one by the way, I have seen the images.
Recently, I had a routine checkup. I have 1 probably every 3-4 months. He says he likes to keep an eye on me. As we all know, my bladder issues have taken over my life. Oh, and yes, I have another uti!! I am going for a record. I will have to google that, maybe I can get a mention in the Guinness Book of World Records. Can’t you just see it, go to Gatlinburg and see a life size statue of me with a thumb up holding a sterile cup and a bottle of Cipro. I know my mom would be so proud! Hey, everyone needs a goal, right?
Sorry, my Ritalin kicked in and my mind is moving fast, I got off topic. One more reason they keep an eye on me. Ritalin makes me wild!
Anyway, I went to the doctor and I was fairly miserable and pathetic I’m sure. He was concerned because 45 days with a UTI (a few breaks in between when the antibiotics were working) is not the ideal goal for your bladder.
Here is how dedicated he is to his patients. I saw him at 10:40am and by 2:30pm I was at the hospital drinking some kind of vile and waiting for a CT Scan. By 9:00 am the next morning he had already texted me the results, changed some doses on my medicine and let me know my kidneys were ok. I have just had a horrible infection and need a long dose of antibiotics. What an easy fix to a major pain in my butt. Well not really a pain in my butt.
He has been through a lot with me and my family. I have been septic, had serum sickness and had some anxiety issues (no judgment, I think its warranted). Anyway, he has always been there. One time in the hospital he taught me how to make the heart monitor go off so I could scare the nurses, it was funny, hospitals get very boring. If he told me to jump off a bridge, I would do it. Hopefully, he won’t though, I’m pretty sure that is bad medicine.
Let’s discuss doctor #2 in this tribe, my neurologist. This is the one who deals with NMO crap (I’ll sensor just in case) and it’s a giant pile of it too. Thank the Good Lord he is young and will outlive me. If I had to give that history every time it would be awful! I would also trust him with my life. He is my brain and spine man. He has to keep me seeing, sane and standing upright. That is not an easy task.
I am pretty sure that there are
times he would like to throw his phone out the window driving home because I
text a lot. I text with questions. I text with scares. I text for help when I relapse. He never says a bad word and he always answers,
and he always helps. He never rushes and
he always listens. One time my husband,
Todd, was with me. I got some not so
great news about symptom progression and I completely lost it right there on
his table. It wasn’t necessarily the news that upset me,
it was Todd, I felt so sorry for him.
The look on his face was a look of love but also a look of pity and
sorrow for me. I completely lost
it. I mean lost it, like a 2yr old who
can’t find their blanket. Not only did I
bawl but I verbal vomited all over that room.
I looked directly at the doctor and I said, “This is so unfair to Todd,
he shouldn’t have to deal with this.”
And I admitted in front of my doctor, 2 residents and my wonderful
husband, “I think I am depressed.” Todd
tried to be supportive, but his head dropped a little and I cried harder. My amazing doctor rolled his little stool up
in front of me, told me it was ok, handed me a tissue, looked me directly in
the eye and said, “Who wouldn’t be.” With
tears in my eyes and I’m sure snot rolling down, I smiled, Todd smiled, and I
began to calm down.
He is so determined to help me that
he asks others for help. He has sent me
for consults at Cleveland Clinic, he has consulted with Mayo (with doc #3) and
he even sent me to WVU. Not only is he
an amazing doctor but he is also a huge Herd fan, so I truly felt the love on
that WVU consult.
Just like my other fabulous doctor,
if he were to tell me to” jump off a bridge” I would do it. But, once again let’s hope they never say
that.
Rounding out this trio of the “Team
I would jump off a bridge for” is my immunologist. I was referred to her because I would stay
sick. She may very well be the smartest
person I have ever met. She discovered I
was fairly deficient in IGG, IGM, and my IGA was basically non-existent. She immediately started me on monthly IVIG
infusions and I don’t get sick nearly as often as I used to. The need for IVIG is very common in NMO
patients.
Another wonderful thing about my
tribe is that they communicate with each other.
I don’t’ think I’ve been to see her when she hasn’t said she had just
talked to my other tribe members. They
always have a plan. She is very thorough. One time she called a colleague at Mayo
clinic about me. She got me into a study
there where we learned a lot about my blood levels and possible
treatments.
Just like my other 2 tribe members
she calls me every single time I have test results. She explains everything about them and then
answers all my questions. She has
written letters to insurance companies on my behalf and offered to explain all
the confusing they try to block you with.
If she is sniffling, she wears a
mask because my immune system is so shotty.
Surely, you all know how horrible it is to wear those masks. She is kind, caring and compassionate, but most
of all when she might be contagious, she doesn’t share it with me.
My point to all this is when you
are dealing with a wicked disease like NMO it truly, “takes a village” to keep
it controlled. Make sure your village will,
accept all your calls and texts, try to find a better solution every time, go
to bat for you, communicate with each other, hold your hand when you cry (even
if you have snot going down your face) and most of all be your friend. And, always remember, “my tribe is better
than yours.”
