Thursday, May 18, 2017

Hats Off!!!!!



https://s-media-cache-ak0.pinimg.com/originals/68/34/22/683422a4bf99d5f5434c986b4ebba1eb.jpg

I am so glad to be at this point. So much has happen in the past two months and after two years of being in my Health Information program, I am ready to graduate. 

I had some ups and downs during the course of the program and so did the rest of the class. We gain a lot from our program and are ready to take on the world.

I am excited to venture off to finding a career in my field, and start spreading my wings. 

One of the first step I have to take is my certification exam, my goal is to take it in July that way I have a whole month and a half to study for it and prepare myself for it. I'm super nervous about this exam but I know if I stick to my study plan I will achieve in passing the exam. 

The next step is to find a job and I'll need to start practicing job hunting like a hunter hunting for its prey. My resume may not be up to par, but hopefully someone will take a chance. I already have a associated business degree and now with the addition of Health Information Management Technology Associated degree, I shall shine.  

I am going to miss everyone, but we will stay in contact with one another. I will miss walking across the bridge to my classes. My Tech college is a place where I've spent 6 years of education, I went through two different program before I arrive at Health Information Management Technology as my second full degree. 

Future education???? It's may be possible but it is not in the plan right now, I'm ready to start doing more Life experiences like Job, Dating, Marriage, and perhaps Kids. When I was at my association conference I learned about Cancer Information Management, that program really sounds interesting and intriguing and there's a BIG PLUS . . . . It's all online, I can earn the associate's degree online.  But right now I'm not going to be currently pursuing it because of wanting to do more LIFE things and not STUDENT things. 

There's a long road ahead of me, a lot of adventures and challenges. I can't wait to see where the road leads me. 


 https://img1.etsystatic.com/126/0/5157128/il_340x270.868764211_fk1y.jpg

Tuesday, February 28, 2017

National Rare Disease Day


How many people do you know that has a rare disease?

How many Rare disease do you have?

Is your Rare disease Genetic?

National Rare Disease day is a day to bring awareness to Rare Disease that affects more than  Million people Worldwide.

Having a Rare disease can be a challenge, living with the unknown of the disease. It leads you to wonder about your quality of life and health status, how does it affect your family, how does it affect you.

For me I don't chose to live in the unknown of my disease, I chose to thrive with the disease. Diagnosed at aged 5 with Common Variable Immune Deficiency, however I also have other rare diseases that pushes me out of the circle of CVID.

I also have Evans Syndrome and Severe Hemolytic Anemia, both of which are very rare that there's no real statistic to how many are affected by these diseases.

As of right now, my diseases are not caused by genetics but with the advancement of modern technology and the evolution of the Genome project that my genetics can be pinpointed. Neither of my parents were carriers of any sorts and we had an genetic counseling when I was much younger than 5 because I kept getting sick.

I've pretty much live with these rare diseases my whole life, and I've had my ups and downs with these diseases. However I do therapy called Immunoglobulin Therapy, other terms that is used to represent my Therapy is IVIG or Infusion. I have been doing my infusions since 1999 and is done every 21 days.

Without this IVIG, I'd probably would not be here today or would be as healthy as I am today. I am considered to be an Healthy ZEBRA. Healthy Zebras are able to go out and do things like a normal person.

Now yes I said IV(Intravenous) however my route of getting my IVIG is through my Port-a-Cath that was placed in 2000. Believe it or not I still have that very same port.

YES you read that right, I still have the same port, this port is 16 years old and working great. Sure it had a little downfall last summer 2016 but that was resolved using TPA.

This blog is basically an insight on how I live with my Rare Disease(s), although it has some ups and downs. Living with this has become my lifestyle and I don't think I could ever imagine living without it. ALTHOUGH YES Cure(s) is a great thing but then does that change who you are or who you were with the disease?

I would love to have my IVIG be spread out longer in the year rather than have 13-15 infusions a year. There's research on trying to make our way of life better and not have to do frequent IVIG or Sub-Q which is a new route for many people.
-

Sunday, January 1, 2017

Looking back 2016

Well 2016 has come to the end, I don't know how many of you do an reflection of your year. I do but most times they're just private thoughts kind of thing. This year I feel there's a lot to reflect back on and talk about my year in general.

Sadly I lost my only grandpa, just a week before Christmas. It's so different knowing that he's not here anymore but I know he's not suffering and is smiling down at us. It been hard on both me and my mom, she took it more harder because it was her dad and all my aunts (her siblings) were dealing with that same thing. One of the things while arranging the funeral, is that everyone had use the picture I took of grandpa in October at my cousin's wedding and honestly looking at those pictures I took, just reminds me that he wasn't sick and he was smiling.

I saw him the day after Thanksgiving, after my dad and I got our Christmas tree. I'm glad that I have good memories, the smiling memories of him rather than what my grandma and my mom and her sisters have seen as he started declining. I love you grandpa and I will miss you.

School
I can't believe I only have one semester to go for my program, I have to say I'm so glad to be finally done with school. I told myself a long time ago (probably when I started college in 2009) that I would be done with school by the time I'm 26. Well I'm turning 26 at the end of this year and I'm meeting that goal.

Work
Yes I officially have my first job, it's an tasking job with a lot of physicality that make it's pretty challenging. It's nice to have one at the same time, I know once I'm done with my program I will be seeking out another job with my degree.

Health
Aside from my whole port mishaps, it's behaving pretty well. Although I know it will come to a certain point in time that I'll need to replace it for good. My mom's insurance went back into network with my hospital but right now currently I'm still at the new site, I still have mix feelings only because sacred heart has been my second home for 17 years. I'm still debating on changing doctors, I can say this . . .  Somehow when you get older you get a little bit more indecisive and that is usually where it stops me because I can't make up my mind. I worry about the domino effect (I think) or that my decision was a bad one but there's no one to tell me if my decision is bad or not. It all has to be my choice. 

Life 
I think the year 2017 is time to start dating, start having a relationship but I honestly have no idea where to look for that. I'm considering match.com just to give it a whirl but I need to ask some people that have done it and has experiences with it whether it's bad or just meh. Should I ask myself if I'm ready for a relationship? I think I am, I mean I'm going to be 26 and most people I know are with someone so I kind feel like the only single person. Even my whole class which are females are with someone. 

I'm also thinking of pushing myself to lose weight, I mean I don't have a issue with my weight but it's there and I'd be so much better off with shedding some pounds. Learning how to eat right is part of the challenge although I have no problem eating vegetables and fruits, it's my self control on Junk food. If I can limit how much potatoes chips I eat or how often I go to a fast food that my weight will be better and my a1c will be better.