October 31, 2016

I’ve never been a huge fan of change.  I mean life change.  I don’t do well with it.  Maybe I am slightly autistic, I don’t know, whatever it is; I like things to remain the same.  I like my routines to stay the same; I like life to be predictable and controlled. 

When I was younger I was wild and spontaneous.  I didn’t think ahead, I didn’t plan; I had zero order and organization in my life.  I was a free spirit, wandering, blowing in the wind.  Then I got sick.  As I got sicker and sicker, my need for control in life grew. In college I would do assignments and papers the day they were assigned instead of waiting the 2 weeks until they were due. When I was teaching I was incredi...

October 28, 2016

Parents sacrifice so much.  Think about it.  If you are a parent you literally, the day you find out about conception, put your life second to another.  The mother cares for the baby while pregnant, making sure she keeps proper nutrition, appointments, the list is endless…then when the baby is born, the whole world of the parents revolves around that kid.  At least that’s how it’s supposed to be…right?

I am so fortunate that in my case, and in the case of my brother, we were given priority and the best care, love and had everything we could have ever wanted to thrive and become successful independent human beings. 

My parents drove hundreds of thousands of miles for us, carting us arou...

October 24, 2016

My brain feels like it is trying to exit out the ide of my head.  Its hurts o damn bad I cannot even properly explain the pain.  All I can explain is that the right side of my face and head are numb…and my right eye randomly closes and waters dude to the intense sharp stabbing pain in my brain.  It feels like sometimes my brain is actually twitching.  Normal. Right?  I guess. 

It’s hard when you’re a complex patient.  They never know which illness or disease causes what and when you have 3 fairly uncommon and newly discovered by medicine diseases, well shit, its like you’re helping write the textbook on what happens with them…

I really hope that by my struggle and suffering s...

October 21, 2016

I’ve been getting cocky with food. Ever since I got hooked up to the meds 24/7 and have them pumping through me every second of the day, I haven’t gone anaphylactic…

BUT, my stomach still doesn’t process many foods AND a lot of them STILL make me sick, its just not anaphylaxis…but since the taste soo good I’ve been eating a lot of things that I know I shouldn’t.

I gotta reel it in!! SELF CONTROL DARNIT!! My abdomen is currently so inflamed it’s swollen and incredibly painful, all because I wanted to be gangsta and eat some chives last night on my potato. YEP, that’s how I live on the edge…chives. HA HA HA. I am a rebel. 

No more rebellion over here though, I am going to force myself to only consume sa...

October 4, 2016

Pardon my language but man; high dose prednisone is a bitch. I am like a round ball of acne and ugly.  Serious. I have never had this many pimples in my life, not even when I was 13. LOL. I’ve gained a ton of weight but am hoping as soon as I am off the meds it will go away…fingers crossed. I am doing MUCH better than I was, but that’s really not saying much.  I still have a horrific headache in which I bolus my pump for.  It helps but really I get about 30 minutes every few hours that is pain free.  It’s intense.  The best part? On Friday the right side of my face began to go numb when I stand up.  Hilarious right?  LIKE SERIOUSLY!?  I just have to laugh because after all, what doesn’t kill me mak...

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