Hi Cupkcake and welcome to our home!
It's hard enough, as an adult, having to live with this disease, but to have to grow up with it, must have been a nightmare for you and your parents. Yet, I have to say, you seem to have gained a great deal of inner strength from all of your many struggles and you should be very proud of yourself to be continuing to battle to take you place as an adult having to live with a chronic, rare disease!
Sweety, I hope you can understand what I'm going to try to say to you with this. I wish I had known certain things about life when I was your age for it may have made my life easier in dealing with the challenges that life brings to us. But perhaps what I've learned in living it may help you in facing your future. Cupcake, we Americans have wonderful lives, with so much abundance, freedoms, choices, opportunities, and material blessings. We don't realize just how easy our lives are and how very few challenges we have to live our lives. And when some of us are faced with some seriously challenges, we look around us and see so many others living what looks like easy lives and we feel sorry thinking that perhpas we're doing something wrong, or that we just got the short stick in life. When I was your age, living on my own, trying to find my way in the world, facing normal challenges and normal difficulties there were times I thought that everybody else was "winning" and I was coming in last place. Unfortunately our society gives us this impression. Everything we see screams this at us, be it TV, Movies, advertisements, music, etc, etc, ad nauseum. It's the marketing of a lifestyle that we think the entire world lives and that when it doesn't go easily for us, then something is wrong with us.
It wasn't until I came to live in Brazil when I was 26 that I began to see what serious challenges to life were. Brazil's pretty well off now, but when I came here almost 25 years ago, life was much, much harder and our inflation was 1% A DAY and when your salary for the month came out, it was worth 1/2 of what it had been the month before! The price of bread in the morning was changed when you went to the bakery in the evening and Brazil was living with a hyperinflation of about 1,000 % a year! It was a total nightmare and kids your age had no hope to go to college if their parents didn't have money or connections and jobs were few and the country was in a major crisis situation. Young married couples like myself had no hope of getting out of a rental situation unless their parents helped them to build an apartment on the upper story of their own home! Most young couples would wait years to get married using their combined incomes to buy furniture to set up their home and then they would marry only to live in a rental situation. Singles lived at home cause they didn't make salaries good enough to get an appartment! There were few opportunities for improvement of their education, or job situation and many things and there were people who I saw living in shacks made of particle board, without electricity or plumbing! It was a very different Brazil than I know now. And it taught me a great deal about hardship for I too passed through this since my husband and I were young and trying to make our own way here.
One of the major lessons it taught me, Cupcake, is not to think too much about my own situation. We do go through hard times with this disease and I know you've been though them! Yet, you are an OVERCOMER and you are a WARRIOR! How do I know this? Because this is what my masto has taught me to be!! I didn't learn to become an overcomer and warrier when I moved here to Brazil, I learned to become a survivor and to adapt to my challenges and to see my challenges in a very different light than what I had grown up with. When I was single and living in the States I felt sorry for myself since I compared myself to others. When I came to Brazil and found so many people in situations so much more challenging than my own, I began to be so very grateful for all of the blessings I had grown up with to think were mine by right. I no longer took them for granted and saw the truth, that I was richly blessed in the land of my birth. But I also realized that because I didn't seem to show that same "success story" that others showed, I thought that it was due to my bad luck or some other stupid thing like that and I began to feel sorry for myself, not realizing how very, very fortunate and blessed I was.
But it was my masto which came only 5 years ago, almost 20 years after coming to Brazil, that really taught me the quality of my character and how very strong of a person that I am. I know this is going to sound crazy, Cupcake, but I'm grateful for my disease, for it's not robbed me, nor deprived me, but instead, shown me that I'm such a strong, healthy and positive woman and that I'm not a "survivor" but an overcomer, victorious and a warrior! I've learned how to be these things. Masto has taught me these skills and helped me to change my circumstances and to help others find those same abilities to change theirs too.
So much about our lives greatly depends upon our attitudes, our viewpoints and our outlooks on life. Yes, you've gone through a great deal, more than most kids your age ever have and if those kids can't see past your spots, and can't see the quality of person you are, then they're not good enough for you! I know that at your age your greatest desire is to be accepted and you think your masto is what keeps you from being so. Well, kiddo, I hate to break this to you, but that's an illusion for everybody is always struggling with that very thing no matter what age they are. It's no different for me at 51 than it is for you at 22! The only difference between us, sweety, is that I'm not 22 anymore and I've learned that if they don't like me the way I am, IT'S THEIR LOSS, for they are losing out on one heck of a friend!!!
I may have my personality quirks, LIKE ANYBODY ELSE, but I'm stubborn with my friendships and faithful and will stand by my friends and stand up for them like few others do. Those who don't like me, end up missing out!
At least that's what I think and if they don't think so, that's their problem!!
So, you see, so much of how you are affected by the people around you really depends upon yourself and your attitudes and your perceptions of things. If you begin to look at your peers as people who are as unsure about themselves and about life as you are, then they won't intimidate you so much and you won't feel so judged by them. So very often, as you know, people judge due to their ignorance of things. Even our doctors. Any doctor who thinks you are just being "delicate" or "full of things", "picky", "emotional" or any other bit of baloney like that is showing his full ignorance of a very real and serious disease! You've got to stop hiding those spots and the cause of them, especially with those doctors and begin educating them as to what UP and Cutaneous Mastocytosis is all about. You see, Cupcake, it's time to take a hold of your disease and rid yourself of your doubts and ignorance and begin to see yourself differently. You've come to the right place and we will take you by the hand and help you learn and to empower yourself with UNDERSTANDING and KNOWLEDGE and we can give you the CONFIDENCE and SELFASSURANCE you need to face these doctors and begin teaching them about your illness and why you react the way you do. We can give you the KEY to taking back control over your illness and learn to step out into the adult world and begin taking care of yourself and no longer be the victim of your disease and instead, learn to gain dominion over it!
Okay, on to business!!!
First! You need to GO TO BOSTON!! It's TIME you were in the hands of either Dr. Castells or Dr. Akin. You've been in the hands of a pediatrician for too long and since your masto has not resolved then it means you need to be in the care of an EXPERT, who can keep a close eye on you and properly medicate you and help to bring your reacting down to a level of almost ZERO!!
You're at a great age to begin treating with an authority in masto so that they can keep you healthy. You're going through so much unnecessary activity, sweety, because your medications may not be at levels you are needing. And this is why you're going through anaphylaxis and the other reactions. I don't know how much meds a UP patient needs versus those of us who are only systemic, however, it's obvious that if you are going through all of those reactions, then your one zyrtec is just not handling it. I suggest that you write to either Dr. Castells or Dr. Akin asking their help and asking them for an appointment. They are both excellent doctors and both are top notch as to UP patient and all the cutaneous forms of mastocytosis. They will know how to properly medicate you and to go over your case and get you back to feeling probably better than you've ever felt your entire life!!!
Now, what to do with those situations which you are getting in trouble with. Do you have an Epi-pen??? YOU NEED ONE!! Also, whenever you feel anaphylaxis coming on, take a zyrtec immediately!! If it doesn't resolve within about 20 mintues, TAKE ANOTHER!! This is how we keep out of danger. Carry around a bottle of benedryl if you wish, cause it's quicker, buta I prefer the pills myself - more conveniente and that syrup is nauseatingly sweet and makes me gag!!!
As to a doctor in Albany, well, I'm not knowing of one, and it's important you find one, so I recommend that you go to some hematologists, but what you are needing is not a doctor to investigate your masto, but to be a supporting doctor for those authorities for you really need to go to those experts. Not because you are in danger, but because you've gone your entire childhood with a pediatrician and since your masto has not resolved, this means you could possibly be systemic and since most hematologists don't understand how the UP kids are when they go into adulthood with their masto, you need someone who does, which is why I strongly urge you to speak with either Dr. Castells or Dr. Akin. Talk with your parents about this and ask them if there is any way that they can take you up to Boston to see these doctors. If you wish, send me a PM, I'll gladly give you my email and also give you the emails of both of these doctors and I can talk with your parents about this and the three of you can also contact these doctors asking their opinion as to this. In fact, it's possible that these doctors know of a doctor in your area as well. Perhaps they will say it's not so necessary for you to go up to them instead. All I can say is that if you were my daughter, this is what I'd do! I am working with my masto expert with my children and that's why I'd do the same with you.
It's a complicated disease, Cupcake and it requires doctors who really know how to deal with it to keep you stable and healthy and since you're now an adult, your body requires more and a different approach than when you were a child.
I hope this helps!
Lisa
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