Wednesday, May 2, 2018

Inspirational Person #1- The Chronicles Of The Chronically Ill Woman

Hey guys,

I decided to start doing these types of posts because I think there are many inspirational people out there with all different stories, and that we can all learn from one another because not two of us are the exact same even with twins, triplets and etc. I think that's one cool thing that we have to offer in this world.  For my first inspirational person is someone who I actually know and is friends with. We were classmates in middle school.  I hope you learn about her and feel inspired after reading her Q and A below:

Q: What advice would you give to others who are having a tough day?
A: I would have to say that this is a hard question. I really had to think about it, because those hard days that we have can be extremely difficult to go through. I think that what really helps me is knowing that I am going to be okay, that this isn't the end and that God has other plans for me in this. I also listen to music, sit down and read, or try and talk to a close friend. When we are able to express how we feel to others, this can really help us get through our day. Although, I will say there are some days where I just stay in bed and sleep off that day and keep telling myself “tomorrow will be different, tomorrow is a brand new day.”

Q: How old were you when you got diagnosed? Can you explain to us about what you were diagnosed with? 
A:This is another question, I would have to say is a hard one for me not only to explain but answer. I guess my entire life I was having certain health issues in one way or another. I would miss a lot of school and for a while every one thought I was faking. I think when I started to really get diagnosis or having doctors actually pay attention and start helping me was my freshman year of college (so I would say around 2010-2011). I actually ended up in the hospital pretty sick and had several doctors try and figure out what was going on. Shortly after that I was diagnosed with endometriosis (this is a form of a disorder that in which tissue forms outside the uterine lining). This type of diagnosis is very painful and can cause many changes for a woman. I have several diagnosis so I think I will tell you about the biggest ones and ones that I believe need more support in the medical field. The second diagnosis I have is Postural Orthastatic Tachycardia Syndrome otherwise known as P.O.T.S for short.  This is a long word that basically means my body does not get enough blood flow going when I stand up and can result in my body doing a variety of different things. Your heart rate can increase within the second of standing up (normally this is a 30 rate increase) For example: lets say my heart rate normally runs in the 60's when I am sitting down, well when I stand up my heart rate increases to 120-130 or even higher in a matter of seconds.  Then the step that usually happens with me is my blood pressure will drop and I will become very disoriented and quite dizzy and need to sit back down almost immediately.

Then there is the other one that is rare and has no cure for it yet as well and that is Eosinophilic Esophagitis also known as E.O.E. E.O.E happens and is more due to allergy, it is a chronic inflammatory disease of the esophagus. What basically happens is a type of white blood cell otherwise known as eosinophils starts to accumulate in the esophagus and will continue to persist without treatment. A treatment for me is to be on a five medications and every two to three months I will go in to have my esophagus dilated (stretched), then biopsies done to see where I am at with the white blood cell count. For me I have several chronic illnesses, that cause all kinds of problems, there is a lot to name but I again just want to name the biggest ones to you. One that I recently just had to have heart procedure on for a Patent Foramen Ovale known as a P.F.O closure. I had an atrial septal defect and another long word which basically  means having a couple holes in my heart from birth. Those holes were causing me to not get enough oxygen through my body and was dropping my oxygen levels down to about 60%. I have been on oxygen a year and will hopefully be starting to wean off now that the holes are closed. Some of the other diagnosis's that I have been diagnosed with include; post concussion syndrome, Ehlers Danlos disease, factor 8 (this is a blood clotting disorder), as well as several others.

Q: Do you have any inspirational quotes you like? 
A:I love this question, I have many inspirational quotes that I like that normally keep me going. A lot are actually bible verses, but I do have a couple that aren't.

  • “Don't quit, you were given this life because you are strong enough to live it”
  • “She is clothed with strength and dignity, and she laughs without fear of the future. 
  • “Appreciate the little things in life, because you never know when they could become the big things” 
  • Take everyday as a gift, because God never promised us a second here on earth. 
Q: What advice would you give to someone who has just been diagnosed with an illness? 
A: The best advice that I can give to someone who has just been diagnosed with any kind of illness is to know you are not alone! Thinking your alone, can make things so incredibly hard for you. Also know that as long as you keep up the fight you will get through it. There are going to be some days that are so incredibly hard, and days where you are actually able to hide the illness and people won't believe that there is anything wrong with you. There will be people who think your crazy, people who will judge you, who will completely kick you out of their lives. You will feel like a burden to other's at times, but remember if they want you to rely on them, rely on them as much as you can, because you cannot fight this fight alone. Having a support system is the best thing you can do to help you. Finally, make sure you research your illness, be your own advocate and put together a good team of doctors that will help you. 

Q: What advice would you give to someone about being an advocate for themselves? 
A: Advocating for yourself is so highly important when it comes to being diagnosed with an illness. Remember your doctor is NOT YOU, they have no clue what you are going through every day unless you tell them all those symptoms. Finally, always remember that you DO NOT by any means have to keep that doctor, if you do not agree with what they are doing, or if they are not helping you in any way. They have failed the interview and you need to research and move on to find a different doctor. Putting together a good team of doctors will help you tremendously in the care you need to getting to a better place in your health. 

Q: Do you have a favorite TV show? Favorite movie? 
A: I have several favorite t.v shows and movies. When you are bedridden at least a couple times out of the month if not more you learn that movies and t.v shows become your best friends. For example, about a year ago I was stuck in bed for about 6-8 months.. so guess how many movies I watched? I don't think you would even be able to guess, I wrote down each movie every single day and when I was finally able to get out of bed, I had 103 movies written. Some of the movies that I watched and that really are some of my favorites are; Escanaba in Da Moonlight, Titanic, Walk to remember, The Notebook, Gods Not Dead, Left Behind series etc.. Basically any where from Comedy to romance, to inspirational, I watched them all. 

Q: What are some of your hobbies? 
A: Some of my favorite hobbies depend on how I am feeling, and what my body allows me to do at times. Although my favorite ones are spending time with my husband, our dog and of course friends and family. I could not get through what I am going through without their support system. I also really enjoy playing all kinds of games, board games, card games and movie games, you name it I probably would love to play it. I enjoy reading, crafting, blogging, hunting, traveling and really just being outside when I am able too. 

Q:  If you could go anywhere in the world (money is not an issue) where would you go? 
A: If I could go anywhere in the world and money was no option what so ever, I think the first place I would go is to Australia. I have a huge thing for Australian accents and just love how beautiful the island looks from the pictures I have seen. The next place's that I would love to visit are; Alaska, New Zealand, Spain, Greece and I have always wanted to go to Tahiti. When I was younger I used to travel with my family a lot and have been to a lot of places, but these are some of the top ones that I think I would really like to see if money was.

Again you should go check out Kayla's blog. You can also go follow and subscribe to her other social medias: Pinterest, Facebook, Twitter, and Instagram. You should go send her some love and wish her a good recovery as she just had surgery yesterday.

<3 Amanda