Pets play a central role in the lives of all those who have them and for those in the rare disease community this is especially true. Rare diseases can be very isolating- spending so many days home and feeling unwell as the rest of the world lives freely around you but a pet provides comfort and companionship.

As school ended Friday and camp drop off photos flooded my social media feeds it is hard not to feel palpable relief that we survived the school year and after an excruciatingly hard 18 months summer camp has returned. There is nothing that makes me happier than knowing kids will finally have a summer to play freely and heal. In truth the entire world could benefit from a few weeks of camp.

I remember early in my mast cell disease diagnosis learning from fellow patients in my community that masks are the easiest way to protect us when we are going to be exposed to a trigger. After extensive research my Mom purchased them for us both and I remember putting the mask in my drawer thinking that I would never wear it. Instead I opted to run past my triggers holding my breath and shoving past anyone in my way until I could safely take a breath again. Wearing the mask exposed me. - showing the world I was in fact sick and it felt like I was giving into my diseases.

I am the most hopeful I have been in a while about my healing. It feels painfully slow most days but I am grateful that even though I am moving at my own speed my body is still able to slowly resolve these major issues. Of course, two victories does not mean I have crossed my finish line as many more hurdles are awaiting me as I work my way down my large list of things to tackle. But I feel more optimistic that a resolution may be possible and that my body will not forever be my enemy- but instead my teammate.

Tomorrow, Monday, May 17th will be my Mom’s fifth Birthday since she died. It seems impossible and yet as we know time marches forward. This year in honor of her Birthday we did a sock fundraiser to support research in mast cell diseases and I am beyond grateful for all those who chose to partake.

I always dreamed of being a Mom and for most of my childhood I was sure I would have four children- more than two but an even number for when we went to Disney World, obviously. Of course at the time our future dreams never included rare chronic diseases that force you to change your dreams. Nor was there a caution that life doesn't always go as you plan.

This year, after the year we have all survived, May Day felt especially sweet and important and once again very needed. I have been quiet for the last couple of weeks on the blog. Never quite sure what I was feeling mentally and physically so distracting myself from my thoughts felt easier than facing them. Riding the waves of my body post vaccine and also the stress of knowing the shot I received was paused four days after my injection left me with unexpected anxiety. Mindless games on my iphone or watching tv seemed safer than reflecting on my current state in writing. And once again my May Day planning was a way for me to get through these hard weeks- for me to focus on something other than how I felt or what stress I had in my life, and to simply focus on play!

As expected, the last few days have not been my best. My mast cells are angry and it may take a number of days or weeks for this flare to fully calm down. But I would do it all over again. The vaccine provides me safety while science is trying to catch up.

That is the thing about rare disease patients, our fight for a better life always requires us to walk into the unknown, to test new medications first and to volunteer for trials if it means we can advance care forward. We fight for science and research because that is our only hope for cures and better treatment options. And this is no different.

It takes on average of over seven years for rare disease patients to find the right practitioner and receive their diagnosis. I know many, including myself who have waited decades. I realize now that just like by definition a rare disease means fewer patients with a disease - there are similarly fewer physicians treating rare diseases. Unsurprisingly, treating the rare is not the easy path- but I have never met more inspiring and motivated people than those physicians that choose rare.

As people plan spring break trips I am still deciding if I have the courage to enter a small grocery store near me. My friends are excitedly registering their kids for camp as I sit confused and unsure of what feels right. I know it will not be long before invitations to weddings and birthday parties arrive and I can already sense my dread of how to decide what to do. Life in my bubble feels safe and easy but I know it is not living fully.

Thankfully, this year has also brought new knowledge as we are starting to have a better understanding of what COVID-19 is, how to prevent it and amazingly a vaccine. I am grateful for all of this and it does give me hope for our future. But I also know that we still have so much to learn about this virus and that this race is still not over. I am shocked that mask mandates are being removed this week and that people view their vaccine as an invitation to live completely normal again. One day, I do hope that is what it means, but until the majority have the vaccine our behaviors still matter.

Today is Rare Disease Day! Rare by definition means “not occurring very often and not in large numbers.” And yet on this day when you bring all of the rare diseases together we are many- hundreds of millions of patients, caregivers, practitioners, families and friends. Our voices united are stronger and on this day I am always overwhelmed with a sense of pride to be a part of this community.

The work of the rare disease community is what gives me hope for my future, for my son’s future. It is what challenges me to be vulnerable and to never stop sharing my story-showing my stripes and making my invisible diseases visible.

I have been thinking a lot about how I often compare my life to a roller coaster ride - riding the ups and downs of what any day will bring. Except this week it struck me that there is no end to the ride. Chronic by definition means "persisting for a long time" or "constantly recurring." It feels weird not to have a final destination. Yes, I realize the obvious, I am trying to get to better health- maybe one day a cure though I don't think that is how chronic diseases work. Cures are hard to come by so yes balancing as much as I can is the goal. But am I ever going to be done having to work on my healing?

Since getting sick I truly have come to understand that I can never predict what tomorrow will bring. A lesson I think the pandemic is now teaching the world. It is for this reason I try so hard to be present and grateful for each day and especially for the time I have with my family and friends. Except I realize recently I am struggling with this.

So as long and as cold as the winter days feel, as exhausting as it seems to have no childcare reprieve and as much as we are all missing being with family and friends and living freely, I do know this is just a moment in time. And I know it is no different then other hard moments in time I have lived through. But as my Mom always reminded me, the way we get through these harder days is largely up to us. I remind myself I do actually have some control in this impossible time, I have a choice in how to react and respond to things and that the same lessons she taught me can and will be learned by my son.

A shining light for the world is the vaccine and a chance at eradicating this virus. I too am thrilled people are being vaccinated and we are on our way to a safer future. But as I watch many friends and relatives schedule their appointments and get their vaccines, our shared reality is slipping away and I can see how easily I will be left behind.

2020 was the year the entire world was given a rare disease. Everyone forced to without warning go inside- forced to wait for science to begin to understand what this virus was. Our entire world was flipped upside down - not knowing what was safe to do in our daily routine, who we could see, and where we could go. Too many patients have died and continue to die waiting for science to catch up to save them. And those that have been lucky enough to recover may forever be impacted by the lasting effects of this devastating virus.

In the Spring of 2019 I spent 6 hours at my mast cell doctor's office trying to get an IV iron infusion to begin to correct the severe anemia I had recently discovered. It took over an hour and five attempts to get just the IV started and that was only the first hurdle. Over the next five hours while my body thankfully accepted fluids it rejected everything else. I even reacted to IV Benadryl, something that normally rescues me in a reaction. Needless to say I left defeated without much iron in me and I then spent the next 36 hours in an almost constant state of reaction as my body calmed down from my trial. I remember saying to my doctor before leaving, "I truly can't escape myself” as I felt an overwhelming sense of hopelessness that I would never be able to find a resolution to my problem.