Like I said.. Crazy busy month.. And Even as I stockpile days to Catch up.. More go by… (Eye Roll)..
As an adult, I can see where friendship is crucial to you making it through trying times. Having that support system is so very helpful and just plain nice.
But, for my teen.. the friendship hasn’t been there. It has been more of a problem than a support. It is horrible to watch as a parent. But the old adage, “out of sight out of mind” applies to teens. If you aren’t right in their face… SO for all you teens out there.. GROW UP! If you have a friend that you don’t see, you have a phone, call, text.. ask them how they are.
I believe that having that support system is important for any type of illness, procedure, just life in general. I makes LIVING easier.
The Botox seems to be working pretty well for my migraines. I only have about 2-3 a month now. andthe Severity is much less than it had been. I only realized this after I had one that was completely disabling a couple months ago.. I don’t know how I used to function like that. But I did. SO. I’m.. Comfortable with where I’m at. But if they founf something that didn’t require 33 shots into my head.. That would be nice too :).
For Chewy.. Cyclic Vomiting Syndrome has no cure. We maintain him. My favorite line from a note that our Favorite Doctor wrote to the school is.. ” as he does not respond to typical treatment, methods have become aggressive and EXPERIMENTAL.” Our little Chewy became a Lab Rat. He exhausted all avenues formally used on his “disorder”. So, now he’s a Lab Sasquatch (smirk). Literally. He is at least a foot and a half taller than most doctors and nurse that we encounter. I always get a good chuckle when we have to admit him in the Pediatric unit.. and he’s taller than everyone on the floor. He doesn’t even fit in the bed he’s confined to for the week. But, we are hoping that we are helping at least other people with this “disorder” by being that Lab Rat. Maybe even helping to find a cure.
I think we have made that point abundantly clear. They absolutely have. We fight for what we want. We fight for what need. We fight for the medication we need. We fight for the AMOUNT of medication that we need. We fight the schools. We fight the teachers. We fight to not get to Vomit stage. We fight everyday. For something. I look at them now as Challenges, not obstacles. Because, I will win. I have been fighting and have experience in my corner. Each fight I take on, win or lose, I LEARN something that makes the next fight that much easier.
That is really why Adventurant was born. Each day became and adventure. A learning experience. Just an experience. An adventure if you spun the idea just right.
Less of a journey.. My specialist had to send me to a specialist and only AFTER I told him I knew there were more treatment options out there then upping the meds I didn’t feel were working for me. Tada.. Botox.. and it’s great!! Plus there are so more than that!! And the Cefaly has just gotten FDA approval.. If only it was covered by insurance.
But compared to Chewy… I’m only where I am because of what he has gone through, and what we have seen and learned as a result of his, because it is a migraine variant. But, his journey has taught us to fight and communicate and push. I think we have obtained what we wished for him. To be stable. Really we hoped he would stop vomiting. We used to count those in days. Then we moved to Months. It would really be nice if we didn’t have to count at all.
I wouldn’t say it’s a topic, but a feeling. You’ve probably been there. There were SO many nights that we lived in fear of the unknown. That no one could or WOULD help us. Fear that we would lose our battle with trying. We gave up hope and gave into fear. There was very little that gave us Hope. Finding caring, compassionate doctors, friends and loved ones that will help you advocate and educate people about things will help you find your Hope. Find your own hope!
“The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association.”