I'm in a bad mood, and kind of having a pity party, so this is my attempt to refocus and reframe my attention. I really hate the saying "Everything happens for a reason", I don't think God had some grand plan in allowing me to have mastocytosis, I don't think He said "You know, Drea is going to need a special trial in her life, let's give her some stupid rare disease that will try her patience and make her feel like she's going insane!" But I do believe that good things can come out of all things.
When my mom was diagnosed with breast cancer last year we were grateful for my dad being unemployed, because he was able to be home and take care of her. I don't think there was some mystical working there "oh dad lost his job all those months ago specifically so he'd be home to take care of mom when she got diagnosed!" I just think that those two remarkably cruddy situations worked out for the best. Does that make sense?
So, here are 10 things I've learned from mastocytosis.
1. To accept my limitations.
I cannot do everything I would like to. I need to get 8-10 hours of sleep every night. If I don't get that, I'm going to need even more the next night, I'm going to be cranky and unproductive. I need to eat regularly, I need to eat good food that is on my diet. I need to take my medications on time, stay out of the sun and heat, etc. etc. The list of things I need is as long as my arm. And sometimes I feel very high maintenance asking for my needs, but the reality is if I don't do these things I get sick! And keeping myself in the best health possible is part of my job!
2. To ask for help.
This goes along with #1. Sometimes I'm going to need help! I cannot do everything, I may need a babysitter, someone to pick something up from the store, a meal, etc. I need a support system for that. I have to admit that some days I can do less than others. Sometimes a trip to the store really is not possible and while I know my husband has worked all day and I hate to add to his load, it is a necessity sometime. I need to ask for help when I need it and not feel guilty for my inability to do everything.
3. Do everything possible to manage your disease.
Eat gluten free, eat vegan, go to a chiropractor, get acupuncture. Anything you can do to help manage your disease is worth your time. You have a brand new job to keep yourself in the best health possible, it's going to take a lot of time and effort, but it's going to pay out in feeling as good as possible. Exercise, even if it's just walking in place while you watch your favorite TV show. I know I can't go out and run 3 miles in the summer heat, that'd be a real quick trip to the ER. Don't over exert yourself, but doing something everyday is important. Drink enough water. Etc. etc. We all know the things we need to do, and I know a lot of the time we don't do them, we put them off or just don't take the investment in ourselves. With masto it's so important to put the quality inputs into our bodies so they can function well.
4. That I have the ability to choose my attitude.
This is a big one, and sometimes the one that I forget. Some days I don't feel like I have the ability to choose but I do. I often get told "You don't seem sick, you have such a great attitude!" and that is because I have decided that I have a choice, I can have mastocytosis and be miserable, or I can have mastocytosis and be cheerful. And trust me, there are days when I am a sad sack and throw a pity party that goes down in the books. But for the most part, I try to stay positive, because this disease sucks but if I let my attitude be affected then it wins and I have let it have more of me then it already did! Masto has my back, and my spleen, and my bones, and my ability to eat tomatoes, I refuse to give it my outlook and my happiness!
5. This journey is long, and some will fall away, but that's okay.
The hard truth is, that you're going to lose friends. And that's sad. But the friends that fall away, that can't hack it, those are the friends that didn't have endurance. When my mom was diagnosed with cancer it was amazing how much people wanted to help. They wanted to make food, do yard work, etc. etc. And I had that at first when I was diagnosed. "You have what? Oh my goodness how can I help?" But unlike cancer, masto has no end. There is no "last chemo" date, no remission date in the future. There is no getting better. (Obviously these are generalizations, some cancers are the same, and we do have good days/weeks/even months! with masto) And the friendships that aren't built to survive are going to fall away. But if they can't be there to help me when I need help why should they get to watch me succeed?
6. Do things on the good days, the mediocre days, even on the bad days if possible.
Getting out of the house is important. Now, this is obviously difficult as it raises our exposure level. But I find that my mental mood is so much better if I go out and do things on my good days. Take my kids to a park, to the library, go to the thrift store, etc. Even if I have to wear a dust mask or gloves, or whatever other precautions I need to keep me safe. Even on my *bad* days if I can sit inside by my backdoor while the kids play outside that helps. It makes me feel like less of shut in. It's again a little rebellion against masto and my refusal to let it take things from me that I can prevent. I can't stop masto from stealing a lot of stuff from me, I may never get to eat shellfish again, but the things I can stop masto from taking I'm going to!!
7. My children have an amazing capacity for compassion and understanding of my illness; I don't have to hide from them.
My sister was really upset that my daughter even knew what the word mastocytosis was. She thought that I shouldn't be telling my kids that I'm sick. Even though my kids are living it with me, they get it, they watch me wake up and be stiff and sore and hardly able to move. The go to doctor appointments and sit in line at the pharmacy. And through all of it, my children have developed an amazing capacity for compassion. They are so kind and gentle. They can tell when I am hurting and will so gently come and snuggle up to me. They'll bring me their favorite toys and blankets. "Here mama, blue blankie will make you feel better." And while I hate that they have a sick mom, and have to understand this stuff; I am grateful for the amazing compassion that it is growing in them.
8. It is okay to be scared, this is uncharted territory.
This is something that I tell the women I work with at the pregnancy center. It is okay to take a moment and let all those worst case scenarios play out in your head. Feel all the fear and panic that you need to and then take a deep breath and reign it back in. This is scary stuff!! Even our researchers and doctors don't always know what is in store for us! But, in the end fear doesn't accomplish anything. So feel the fear but don't walk in it. Don't make your decisions to minimize fear or avoid fear. Sometimes the good things lay in the scariest direction!
9. It is okay to not have a plan, sometimes we have to wing it.
You don't have to know exactly how this is going to work out right this minute! You don't need to have a five year plan jotted out to the month in your planner. It's okay to live for the moment. This illness sometimes feels like it takes all spontaneity out of life, I have to take medicine 30 minutes before every meal. I need to wear sunscreen and it's best if I can stay indoors. But you know sometimes I'm going to just do what I want! And as long as I take the epi-pen with me and stay within 30 minutes of a decent ER I'm going to call it good! =)
10. I am stronger than I could have possibly imagined.
This disease has shown me an inner strength that I didn't know existed. I can survive. Masto is not stronger than me. I will live a great life despite this disease. And my number one goal is to live to see masto cured. I may not make it, but if I don't I want to leave this planet having seen and done great things. I want to have made a genuine impact on the lives of those around me. I want to help those who are struggling, reach out to those who need love, and feed those who are hungry. I want to see things that I haven't seen, and do things I haven't done before. And I'm going to do all of that with my uninvited guest, masto. And while my life is not going exactly as planned it is going to be exactly the way it is supposed to be.