Always living with the vision of what could be was my goal. As my dad put it, I am looking for that “white picket fence,” which he said didn’t exist. But in my world and my mind, if I wanted it, I could achieve it.
In 2013, I became single. My kids were off to college in another state, and I had to figure out, for myself, what was next for me. I had lived for my kids, my family, and my job. I started going out, and I learned to live again. A relationship with an ex-coworker that started as a friendship then turned into a relationship. He’s now my husband.
My white picket fence wasn’t that far away. I was blessed with a man who loved me completely, with all my broken pieces, and to boot, loves my kids as if they were his own. I finally had my white picket fence. Just when life couldn’t be better, systemic mastocytosis (SM) came into the picture.
As my life was taking shape again, my health was deteriorating. I vomited daily and had horrendous stomach pains, blurred vision, and issues with vibrations that caused my nervous system to shut down to the point I felt I was going to pass out. Joint pain, bone pain, swelling, and insomnia became routine.
Read more about SM diagnosis
One thing my husband enjoys is having his back rubbed (hey, who doesn’t?). I found I was unable to put pressure into rubbing his back for very long. My arms would get tired, my fingers would ache, and my wrists and joints would swell. So not only is this disease affecting me, it affects how I show affection. I feel defeated.
My son lives 90 minutes away from me. In the past, I would drive that distance daily for work without a thought; today, I stress over long rides, hoping and praying I won’t have an episode where the vibrations of the car ride will affect me and impact our time together. I am so frustrated by not having the ability to jump in the car alone so that I can go and spend an entire day with him.
My daughter lives close by, so we meet up from time to time to go food shopping or have lunch. Often, I’ll try to grab something heavy, and she stops me so I don’t hurt myself. I am the provider, the protector, the mom . . . I don’t do well as the person needing help.
I think about the picket fence, and it angers me that I’ve got my fence, but I can’t fully enjoy it because of what this illness does. At times, I can fake how I feel, but other times, it can really ruin the moment.
Read more about SM testing
I allow myself a day to wallow in my feelings, but no more than that. I try to think about all the good I have in my life. I remind myself how blessed I am to have a supportive family. My husband, children, parents, and sister are always sending me things to read to see if there is something that may help. I am lucky to work from home, which allows me to achieve so much more than if I had an office job. I try to remember that it could be worse.
I enjoy my good days and push through the bad. For those who feel defeated at times, as I do, look at what you have and not at what you don’t. Realize your blessings, as big or small as they may be, and always remember that tomorrow is another day. I have learned the world won’t stop turning if it’s not done now. Surround yourself with positivity, and that includes the medications that help you fight off the feeling of being defeated.