Tagged: Dr. Galgiani
hOly stress test, Batman, what’s the answer nOw?
About a year ago, I wrote my forth blog post, titled hOly rOadrunner, Batman, it is valley fever! At that time, it was a huge relief to finally be able to name why I had been so sick for over a year, and to begin healing. Now, another year later, Batman doesn’t think it’s valley fever anymore, and I am once again searching for an answer.
Every doctor I have seen has told me that a negative Valley Fever blood test doesn’t rule it out. Why now does Dr. Galgianni (aka Batman) say that he doesn’t think I have VF because my blood tests have all been negative???
Has the Joker finally taken over Gotham City?
In an effort to get a definitive diagnoses, my husband and I decided it was best to make an appointment at the Mayo Clinic here in Arizona. Even though it is out of our insurance network, we thought if anyone could help us, the doctors there could. So in early March, with high hopes and two years worth of test results in hand, we headed to the Mayo Clinic.
My appointment was with Dr. Doug Peterson, and as we were called in, we were told he liked to initially see the patient alone. The nurse said she would bring John in later. All too quickly I override my alarm bells, and agree to going in alone. Have I mentioned I’m a slow learner?
I am a huge believer in having an advocate with you at all times when dealing with doctors, but this is the Mayo Clinic, and they know best, right?! WRONG! Fifteen minutes into the appointment I ask to have my husband join us. The doctor talked me out of it by saying he just wants to get to know me. He worried that John might talk too much and take over the appointment. Even though none of that is true, I again override my needs and agree with the doctor. (Okay, I’m a slow learner AND a delayed reactor.)
I’m not saying Dr. Peterson wasn’t smart, he was just also arrogant, controlling and selfish.
The goal of going to the Mayo was to rule out any serious conditions that we might have missed over the last two years. So last week, I had a nuclear stress test and an echocardiogram to make sure my symptoms were not being caused by coronary artery disease. My father died of a massive heart attack at the age of 64, (ack! I’m less than 10 years from that age!) and I sure don’t want to take my heart health for granted.
After secretly hoping they would find something that would explain the symptoms I have had over the last 25 months, I am very happy to report that all heart tests, breathing tests and blood work are normal!
All catastrophic conditions have been ruled out, and that truly is a very good thing! In this moment, I am extremely grateful for my body and love that I am still in pretty good shape!
With the knowledge that I am dealing with a chronic condition, and not something that is going to cause me to drop dead in my tracks, I next went to my acupuncturist, Mary Papa. She is an amazingly gifted practitioner and healer, and has helped me tremendously over the last 18 months. I knew she could help clear the radioactive medicine from my body, and continue to support me in moving forward with love, gratitude and wisdom.
So in an instant of clarity, with needles still in my ear, I realized that although I still really like Batman, I don’t need him to save me! I am, after all, Catwoman! Catwoman, if you remember, is very resourceful, agile, empathic and extremely skilled at evading capture. So now that I have remembered who I am, I will NOT allow this illness, Batman, or any doctor for that matter, to stop me from believing in myself or being who I really am! There! I said it.
As I move forward, I have recommitted to knowing and listening to myself like never before. The truth is, I know a lot about myself, what I need, and who to trust. I just need to get better at hearing and listening to my wise inner voice when she says, “That’s not going to work for me.” When I am able to say those words in the moment I need to, I will be dancing in the street! Keep an eye out for me!
After experiencing a very specific set of symptoms over the last 26 months, extensively researching Valley Fever and other chronic fatigue conditions, and ruling out all acute conditions, I am convinced I have been dealing with VF all along. Just like viral illnesses that become chronic fatigue conditions, I believe VF can become a chronic fatigue type illness, too. Just because Western medicine doesn’t know what to do with those of us with these conditions, doesn’t mean it isn’t real. I will continue to educate, research and advocate for Valley Fever patients and their families, as it is just the right thing to do.
I will leave you with a few images of our beautiful desert blooms and fountain, and a couple new vickiO creations inspired by the interesting and amazing path I find myself on.
Be gentle. Be brave. Be true.
hOly rOadrunner, Batman, it IS valley fever!
I have never been so happy to be diagnosed with something in my life! On Tuesday, April 2nd, 2013 my husband and I went to my appointment with the resident Valley Fever guru, Dr. Galgiani. He is the renowned VF expert in the country, and was my last hope for sanity. It probably was a good thing he didn’t realize how much was riding on this visit.
Dr. John Galgiani was kind, funny, thoughtful and extremely knowledgable. He was interested in hearing my story, asked questions and was genuinely interested in helping me. When he said, “I can’t tell you the number of times I’ve heard the same things from my Valley Fever patients”, I just about burst into tears with relief!
hOly cactus blOssOm, Batman,
I really dO have Valley Fever!
Like I said, I’ve never been so happy to be diagnosed with an untreatable disease in my life! Gone forever are the crazy thoughts and questions I’ve had rolling around in my head for the last 14 months. Gone are the sleepless nights wondering why I can’t do any normal activities or even just talk on the phone. Gone are the worries about what it is that I do have, and whether I will ever get well.
I was relieved when Dr. Galgiani said I fit into one of the classic Valley Fever profiles – a very healthy, active person, with all the VF symptoms (cough, night sweats, headaches and fatigue) and fatigue being the worst lingering symptom. They don’t know why very active people get the long drawn-out version, but he has seen it many times. He confirmed that the medication doesn’t really help in cases like mine, and that here is not one part of my story that doesn’t fit for Valley Fever.
I am extremely relieved and happy to finally have a confirmation of what I have “known” all along. There are so few doctors who really know this disease, so I’m extremely grateful to be a patient of Dr. Galgiani’s. He has dedicated his career to studying, researching and treating Valley Fever in the hardest hit areas in the US. He was clearly excited to be working on it and making a difference for people who are suffering with it. Thank you, Dr. G!!
He said he has no treatment for the disease itself, but gave me a prescription for a months worth of physical therapy to slowly begin reconditioning my body. Love this! He said to let go of all the figuring out and trying things, and just let them set up a plan that fits me and my condition. I feel very supported and heard. I will go back to see him in 6 weeks – he actually wants to know how I am doing. How cool is that?! (The last 3 doctors told me to come back in 6 months or a year.) Again, thank you, Batman!
Dr. Galgiani is so sure I have Valley Fever that he asked if I would be willing to do an interview for one of the local TV stations last Monday. We were having terrible dust storms that day, and Valley Fever is always a topic of concern on those days. I readily agreed to the interview and loved being a part of educating and voicing the realities of the disease. Below is a link to the interview if you want to take a look.
Right now, this is my favorite t-shirt. I know the keep calm sayings are a bit overused, but I love The Beatles and wearing it makes me smile. So, rOck On, dear friends, rOck On!
I would love this on a t-shirt, too! But the truth is, it is Dr. Galgiani who needs this t-shirt. He really IS Batman!
The real life Batman……
I think I could save the world in these shoes! Don’t you?!
Okay, okay, I will stop myself from carrying this too far. It’s just that as a kid I loved Batman and Robin, and all their corny jokes and funny sayings. But most of all I loved them because they were out there battling evil and winning. I, too, want to be a force for good in the world and plan on continuing to fight for the underdog (oh, I loved Underdog, too).
Here is my final thought on Batman for the day. Maybe we are all being called to connect to our own inner super hero. The part of us that wants to speak up and fight for those who can’t fight for themselves. I think it is really trying to encourage us all to be super heroes in our own lives. Maybe there is a Batman, or Batwoman, inside all of us. Claim your inner super hero, and go out and change your special corner of the world for the better today.
Be kind. Love gently. Live large.
Yay for the real life super heroes!
P.S. Here are a couple of very helpful links if you suspect you have Valley Fever and are looking for more information.
Valley Fever Center of Excellence
Tutorial for Primary Care Professionals – select this option on the page displayed for a PDF file that you can print and give to your doctors to receive the best care possible.
“The purpose of art is washing the dust of daily life off our souls.”
– Pablo Picasso