Finding My Finish Line

In the year leading up to finding my doctor and receiving my diagnosis I had launched a full scale effort to figure out what was wrong with me. It had become very clear that if I did not do so within a few years I would be out of food to eat and very sick. In those early months of research I happened upon Mastocytosis and mast cells and was so terrified by what I read - regular and unexpected anaphylaxis with too many mast cells and depending on the type it could be cancer. I was quick to find all the reasons it did not apply to me and continued my search. There was little if anything published yet on my eventual diagnosis of mast cell activation syndrome because it was in its infancy of  being understood. Though I am not sure the descriptor would have been any less scary as many of the day to day symptoms are the same.  

So as most when they are told about a life long issue I was equal parts relieved and terrified. I was 5 months pregnant at the time and my body was clearly in control. I desperately needed to find a way to regain some control and make sure I stayed alive for both me and the baby I was was growing inside me. I knew I had no choice but to dive head first into learning what I could and begin making changes with my doctor to start my healing. It felt like a matter of life and death for the first few years following my son's birth and again after my Mom died. I could not let this disease kill me. 

It is hard to believe that this February marks two years since I had my big surgery. I remember before the surgery hoping that this was the right next step in my healing but knowing like everything there was always a risk it would set me back. I can now say for certain it was the right decision and that it has allowed me to have more healthier days.   But there is nothing like an anniversary to cause me to take stock of how I may have healed since that day two years ago and in truth over these entire past 10 years. But it also left me wondering what my future looks like. What is my version of “healed"?

Chronic conditions are indeed chronic and thus it makes sense that I ebb and flow in both my interest and motivation to heal further.  I have largely given up believing a cure is possible and while that may seem like a defeatist attitude I think it is just being realistic. So if my end goal is different- not completely healed and cured - how healed is enough? Is being able to maintain and live my life enough? Or does my rare disease warrior self require me to always fight?

Complacency with my disease scares me but is that fair to put this pressure on myself for the rest of my days? I of course want to do everything I can to be sure I stay alive- that goal will never change. But with a chronic disease is it even possible to always maintain an intense pace of doctor’s appointments, new testing to learn more, and medication and food trials? This is not an acute and temporary diagnosis that I am fighting. I am in it for the long haul. I know this is a marathon not a sprint and I need to pace myself.

I would argue if you remove my chronic disease from my profile -that I like most 40 something year olds are in the midst of some of the most demanding years of life- still having a young child at home who also has rare chronic diseases, working a big more than full time job, and dealing with regular life issues that come with adulting.  My days are a flurry of meetings and activities and many times it feels like just surviving whatever the next speed bump that comes along in life is the best I can do.

But I am still not fully like my other friends who share my exhaustion and craving for relaxation. I am still on many medications each day, eat a limited diet and am extremely reactive to airborne smells making it challenging to live freely in the world outside my safe space. But even with these daily challenges I do not take for granted for even a second the strides I have made- how far I have come in the last two years and even last decade. I am living my life and my recovery time after my long days feels less then it used to and I think most months I spend fewer days feeling unwell. So is this enough? Can I pause for a little and just maintain balance fully knowing that I still have to reach my finish line.

I know there is sadly no magic 8 ball that can promise me that I am doing enough today and I am not risking shortening my life by slowing down my pace of actively seeking new treatments. And I know that is my fear. If I do slow down my efforts am I letting my family down? Am I putting myself at risk of harm?

Given the state of the world, life for everyone has never felt more fragile than right now and that is not because of my rare diseases. But perhaps that is why I am struggling so much with knowing how to move forward, not wanting to compromise my present or my future. I don’t want to miss any moment of my current days by being consumed with appointments and trials that make me sick and require me to recover. Tomorrows are not a guarantee for anyone.

So I am giving myself permission to be present and accept that getting through each of my days living with my chronic disease is a success. It is a result of having fought hard for a decade and that is no small feat. It is OK to feel tired and not always want to go full speed ahead. I know this is not a sprint but a marathon and it will mean some miles I run and others I walk. It does not however mean that I am giving up on reaching my finish line, whatever that may look like.