On Moving Forward & Waiting.
When I was in my mid to late ’20s, I started experiencing significant sinus congestion, pain, constant sinus infections, headaches, and bloody noses. I saw a few different ENT’s, was put on antibiotics, recommended alkalol (a nasal rinse), and in 2017 surgery to correct a slightly deviated septum. I decided against the surgery, and time went on.
It was fall-winter of 2016 that I also started to experience some shortness of breath. Making hiking, cycling, snowmobiling, increasingly difficult. At the time, I attributed it to being out of shape and possibly even to a heart condition. I was seen multiple times. Still, nothing could explain the episodes I was having, and I eventually gave up, deciding that it was just stress or the fact that I was out of shape.
Over the next few years, my breathing slowly got worse. I would tell myself it was allergies, even when I would lose my voice for a few weeks at a time.
Eventually, it became normal to me. I didn’t think anything was wrong, this was just me. I worked on keeping myself as fit and healthy as I could. Not understanding why I was having specific symptoms, but not worrying too much.
This past Spring, 2019, Justin and I decided it was time to try to start our family. Having been actively trying to have a child for quite some time, even going through three unsuccessful rounds of IUI back in 2013.
After some research, we decided on The Fertility Center of Las Vegas. We started my initial tests, and shortly after that, a few red flags began to pop up. First was my blood pressure, then my thyroid levels, TSH levels, to be exact. This led to more appointments, more questions, and finally, some answers.
First, we were referred to an endocrinologist in Salt Lake City to Dr. J, where I was diagnosed with Hashimoto’s, among other things. Hashimoto’s really explained a lot of what had been happening with my body and symptoms over the years.
I left with a treatment plan, more tests, relief, but also some concerns… Dr. J had noticed that I had a stridor, a high-pitched, wheezing sound caused by disrupted airflow, that he was concerned about. At this point, I had also started to become more concerned about my breathing problems as they had significantly worsened in a short amount of time. There were a few nights when working in Jackson. I had become scared that I would have to visit an ER. It had progressed that much and was quite worrisome.
This led me to Dr. P and Dr. D and more tests. Including CT Scans, blood work, a laryngoscopy, and an intranasal biopsy. Then the waiting began…
Einstein said that “life is like riding a bicycle. To keep your balance, you must keep moving,” but when you are waiting for answers to questions regarding your health it’s like trying to balance on your bicycle at a stop sign. It’s only so long before you fall over and your mind wanders into some of the darkest parts of yourself. You hope and pray that it is nothing serious, but when you are truly sick, you know it deep in your bones that something isn’t right.
You begin too mentally prepare for the worst, but at the same time, you try to be positive and strong for everyone around you. Putting on an act that nothing is wrong, that you are okay with all that is happening. On the inside you are waiting for the phone to ring, willing it to ring, but also wishing that it doesn’t ring because you know what the answer is going to be when it does.
For so many of us, the waiting isn’t something that we deal with once or twice over the course of a few months. It is something that we live with for years. Precariously balancing on our bicycle at that stop sign, waiting for the ok to move forward, all the while trying to not to lose our balance and fall over.
For me, it all started in 2011 after experiencing a stroke-like event and subsequent seizure-like episodes, it was discovered that I have a smallish atrial septal defect (ASD). There was never an official diagnosis, and I don’t know if or how it is connected to my current diagnosis. After many discussions with cardiologists and neurologists, I decided to not have the ASD surgically corrected.
Flash forward to the present, and I have now been diagnosed with Hashimoto’s, B12 deficiency, celiac, and iron anemia deficiency. And most importantly, my recent diagnosis… Granulomatosis with Polyangiitis (GPA), a rare form of vasculitis.
Before I was told about my GPA, I was diagnosed with subglottic stenosis (a narrowing of my trachea, mine is currently narrowed about 50%). The development of subglottic stenosis is seen in about one-fourth of all patients with GPA.
It’s a lot to take in, a lot to process. My lungs and kidneys are in good shape, for now, I will have to be closely monitored for the remainder of my life. I have been told that there a 70-80% chance that sometime in the future, be it a week, a few months, or years, this disease will affect my lungs and or kidneys. It has been smoldering for years now and is starting to cause real pain and problems, but at least now I know what is wrong. Most of my waiting is finally over, but not all of it.
I still don’t know if or when it will get worse. I don’t know if the medicinal treatment will stop my subglottic stenosis, I am still stuck waiting with no crystal ball to look into and see what my future holds. Not knowing is scary, not knowing is what will hold me back in life, if I let it.
It’s comforting to know that for now my lungs and kidneys are not yet affected.
My trachea, sinuses, ears, eyes, however, have been affected… My small team of doctors is recommending that I start treatments as soon as possible. Holding off any longer could lead to kidney and or lung involvement, which is the last thing that I want to happen.
So now, I am preparing to start treatments for my GPA. First, we will be starting me on a treatment of Rituxan and Prednisone. I will also be heading down to the Vasculitis Center at the University of Utah for my trachea to be dilated and additional follow up. Hopefully, the dilation will be more than a temporary fix. Still, I have done my reading, and I am under no false pretenses. I will more than likely have to have this done again…
Dealing with multiple autoimmune diseases can be quite a challenge. My body is refusing to absorb any iron. I was taking pills for this, and my levels were slowly rising. Since stopping my iron pills, due to them causing severe GI issues, my levels have plummeted again. So now, I will also be getting regular iron infusions starting in the next week or two. The good news is that my thyroid and B12 levels are healthy.
Realizing all the treatments and medications that I will have to be on, along with their side effects, is causing intense sadness. I have to remind myself daily to not allow myself to be depressed for too long. It is hard to visualize fighting against these diseases for a lifetime. I suppose that is the challenge of having a chronic illness, let alone multiple illnesses. An endless grind through good and bad, wins, and losses. Sadness and happiness… but if I spend too much time in my despair, these diseases will win.
At some point, I will have to accept that this has become my life. Continue to fight, to live, and to share my story, until the day we have a cure. Over the years, research has helped to advance treatments in modern medicine for GPA. The mortality rates have significantly dropped, and remission is possible, as are flare-ups.
All I can do now is make this life, my life, the best I can.
I am a pretty private person. As I get older, I find myself becoming even more selective of the people I chose to share details of my life with. The thought of any extra attention gives me anxiety. Just like the idea of sharing my experience publicly on social media makes me cringe. It’s simply not the place I want to bare my soul. However, the past few years of my life have been quite a roller coaster, and I have decided to continue sharing my experience living with GPA. This is not meant to be medical advice in any way. It is my story, my journey with multiple autoimmune disorders, and a rare disease.