I wrote these passages four days apart…
One on my way to see my doctor and have some scans done.
The other was written after my follow-up appointment with my scan results.
These passages really depict the highs and lows of having a chronic illness.
The highs can be so high…
Most of the time, finding a doctor who is good at their job, compassionate, and listens to what you tell them is happening in your body is nearly impossible. Once you find one, you never want to let go.
Suffering from a chronic illness is challenging as a military spouse. Constantly moving, changing doctors, trying to explain for the 1,000th time what weird symptoms are happening in your body. They always want to redo tests that you have done over and over. Refer to your specialties that were no help at all.
That is why this week I flew to Houston on what I like to call a medical vacation. This time, it is just scans, other times an appointment or surgery. I always try to squeeze in something fun with friends, but I am here because I found a doctor who listens and cares. The funny thing is I have never lived in Houston, but I will keep coming back because it is 100% worth it. Having continuity of care with a compassionate doctor is priceless.
For the last year, I have tried to manage my care with my primary doctor and local specialists. I have seen two neurologists, a genetic specialist, an orthopedic surgeon, an ENT, done a ton of bloodwork, and several MRIs. None of these doctors could figure out what was going on with my symptoms. I told each one that my symptoms mimic every other time a schwannoma tumor has popped up. The answer is always: Try stress relieving techniques and try to decrease stress in your life.
I am normally a very calm person, but that response just infuriates me. I want to scream!
It is not stress causing the problem, I am stressed because no one will help me!
At my yearly follow-up with my Houston-based Dr, I explained all my symptoms. His response is; let’s take a look and see why that is happening.
He actually looks at my scans and says oh. There is a tumor here, here, here… They are likely other places, so let us do a full-body scan and find which ones are causing the problems.
Hallelujah
So here I am, back in Houston, getting a full body scan. If we can target which tumors are causing problems, I will return here to have them surgically removed
Is it convenient to fly halfway across the country for every appointment? Absolutely not. Is it worth it? Every single time.
Finding the right doctor for your illness is a game changer. If you find one, keep them as long as you can. If you haven’t found them yet, keep searching. The search can be relentless on your resolve but do not settle.
You deserve the best.
The Lows can be so Low…
After my hope-inducing trip to Houston, I plummeted back to my reality at my follow-up appointment with my Houston Dr. My doctor started my appointment when his normal compassionate questions. He always takes the time to check on my emotional condition; and then asks how am I feeling, pressing me to be honest. I do not need to wear my brave face here. I feel safe.
Your scans are all clear.
Now, you might think that is a statement of hope and positivity, but it is unfortunately the exact opposite. That statement immediately brings me to uncontrollable tears.
It crushes every hope I have.
As someone who suffers from a chronic mysterious illness, It is the last thing that I want to hear. After seeing numerous doctors, thousands of tests, and scans, all I want to hear is
I found something, and I know how to treat it.
Instead, all I hear is that I have no idea why you are constantly in severe pain and have tons of weird autonomic symptoms.
I do not know how to help you.
I have once again hit a dead end at full speed. I have to admit that currently, there is no path to a better quality of life. I must settle into my current state of abilities and pain. Adapt my life to do less to be less.
As I settle into this current state, feeling ignored and a burden. I hope that I can once again pick myself up, rebuild my hope, and continue my relentless path to healing.
