ME, Migraines, Fibromyalgia, Interstitial Cystitis and College : A Chronic Illness Podcast

Quick note: Our Skype call was internet cursed but I PROMISE you this is worth it! Sara’s perspective on life will blow you away. Speaking of head over to

Sara’s Blog: Invisible Me Diary



What is your disorder?

My main disability is Chronic Fatigue Syndrome/ ME. My dad is also disabled with CFS/ ME and Fibromyalgia. I have other health problems but the main and most urgent disorders which have

affected me most are Systemic Candida, Interstitial cystitis

, and Chronic Migraines/

vision pain.

At what age did your disorder become a daily issue? When I was 16 years old and finishing my junior year of high school I suffered from

a series of migraine headaches which led to CFS/ ME. My family decided to move to

Florida to be near our giant family since my dad became disabled. I was starting to

have the same fatigue issues as my dad so my parents found a high school that

would take me part time so that I could graduate. Not only was I entering my senior

year at a new school in a new state, I was also very sick. We found as CFS doctor

nearby who started me on antiviral s and antibiotics.- At first I noticed a difference

but it was quickly followed by a her x reaction which made me have flu like

symptoms. Eventually the medicine gave me systemic candida, which I first noticed

as thrush. The infection spread throughout my entire body, even down to my nails.

Every time I ate I became extremely sick and could feel my stomach stretching from

the bloating. I was living meal to meal on an extremely strict diet. This made it

impossible to make friends as I couldn't' t eat anywhere but my own house. This was

the toughest time of my life when not only was my health a daily issue, but an

hourly issue.

Who were you before your illness became debilitating?

Before my illness I was a normal high school student. I was a fast pitch softball

pitcher being scouted by colleges, I was first chair saxophone in the school band,

on the honor roll, and had lots of friends including a boyfriend. I lost each of

these things when I got sick, all of the things that I thought defined me. With

the move to Florida I also lost my home and the dynamics of my parents. My

mom went back to work and my dad Went ̄from---being my softball coach to

couch bound.

What would you do if you were not dealing with your invisible illness? If I were not sick I would have already graduated from college, have a job, and be independent. Because of my illness I was not able to go away to

college which later became a blessing because I have been living at home and going to architecture school nearby. It has always been a dream of mine to be an architect and I love going to school. It is difficult though because each year my friends graduate as I am left behind. What is typically an 4 year degree will take my 8 years to graduate.

If my health were to improve I would love to be more involved with promoting awareness for invisible illnesses but it is all I can handle to keep my blog going.

What would you like people to know about your daily life?

Although my family faces sever health problems each day, my daily life is hilarious. Living with multiple people who are sick and not all there makes my family a sit com. I live with my mom, dad, and sister and my extended family is made up of 24 people who live within ten minutes of me. Here are some examples:

*My sister is a Michael Kohrs sales rep, alcohol marketer, business student, and professional dancer. It is a normal week for her to have her car breakdown where she was mistaken as a homeless person, pour alcohol samples poolside at the Waldorf, do her homework with a foot mouse and voice activated software due to severe fibro, and dance with Cher's personal male look alike. *My dad has been learning sign language due to severe throat pain. My grandma has been learning it with us but she accidentally flicks us off a lot. My

dad is also writing a book with his eyes closed. Because mornings are best for him dinner is usually ready by 10am.

*My grandma is our Uber. She takes me to school and doctors appointments. *Our house is a revolving door for family as they are always helping and supporting us. My aunt will often drop by with dinner, my cousins bring their dogs over, and my uncles will stop by to visit with my dad.

*I have converted the office into my personal architecture studio. of

my pain I cannot use a computer and therefore draw

by hand. I have a typewriter to write my blog and school assignments. I've gotten so good at drawing combined with my typewriter that my classmates think my work is done on the computer.

My daily life may be funny but it is also consumed by my health. I can only achieve so much in a day, have to take lots of breaks, and spend a lot of days at doctor appointments. When I got sick, every aspect of my life became public to my family and doctors. When I got Interstitial Cystitis, a bladder problem which either made me have to pee urgently and constantly or not be able to go to the bathroom at all, it was normal for my day to start with my dad asking about my pee. It became so painful and difficult to make it through class or a car ride that my family sent me to New York to see a world renown doctor for I C. Imagine seeing New York for the first time with a bathroom locater app and two disabled people. My dad looked so lost that people would come up to us on the street to help us. I wouldn't' t have wanted to experience NYC any other way though. My daily life was changed when this doctor gave me medicine that helped my pain and urgency and also recommended a pelvic floor physical therapist. At this point I spent my days in a urogynechologist office, getting bladder lavages, and doing physical therapy. What would make living and moving in the world easier for you?

Awareness and Accessibility. Living with such serious health problems which control

everything I do, having a voice on my blog has been completely liberating. Just the few people in my life who now understand a part of what I go through has made my life easier. If invisible illnesses were taken as seriously as cancer it would allow for me to not have to prove that I am sick. I went to a football game for UCF where I was denied access to a handicap parking garage by a police officer although I have a handicap placard. After that I was denied access to the handicap shuttle because I ' l am not handicap. Having people not believe me therefor making accessibility inaccessible has been a huge part of the battle.

Do you have any life hacks? We have SO MANY life hacks, most of which invented by my dad. One that stands

out is ' 'neck thing in a pant leg. " My dad cannot hold his head up and cannot join

us for meals, church, ect. if the seat he is in does not have a neck support. One

day I found him walking around the house with a slab of wood sticking out of his

shirt. It evolved into a 4 inch wide piece of wood from our garage with Velcro on

it to attach padded neck and lumbar supports. It looked like a hot mess so my dad

went to his room, cut off one of his black pant legs, and my mom sewed the pant

into a carrying case. Now he doesn't leave home without "Neck thing in a pant leg.

' t Another favorite is the foot mouse, which he made for my sister because she gets

extreme back pain from fine motor activities.

RIP my sandle, which he cut a hole in to place the mouse. Currently the most

important life hack for me has been my rose colored glasses from amazon which

protect my eyes from glare and fluorescent light. Without them I couldn't make it

through class at school without getting a migraine due to extreme light

sensitivity.

What kind of support do you get from family or friends? I have lost many friends over the years but the friends that I do have now are

amazing. Most of them have no problem if I have to cancel plans. They usually come to my house and even drive me around places. I also have friends who also suffer from ME/ CFS. Although I have been lucky to have my dad who understands all of

my struggles, it wasn't' t until I met another girl my age with the same challenges that I realized that what I needed wasn't' t a cure, it was for someone to understand. My family has been amazing, as I wrote earlier.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples?

I learned that people do not believe invisible illnesses from my dad. I have seen how he has faced so much before I even got sick. He grew up in a different time (1970's- 80's) when invisible illnesses were unheard of. In his 20's he went through years of being bed bound. Doctors told him he was crazy, it was all in his head, he was a hypochondriac, laughed at him, and told him that this was his bodies way of taking a break from being so ambitious and smart. He eventually learned that his problems were food related and was able to lead a normal life for many years. But because of this he has always kept his health a secret and I wasn't' t even allowed to post pictures of him on facebook because he was so paranoid. By the time I got sick I figured that was the way to live with this illness. I didn't necessarily encounter people who straight up didn't' t believe me because I never gave them the chance to know what was wrong. How has your invisible illness affected your relationships? I was engaged a year and a half ago to my absolute best friend. We had an amazing god named Sonny and our own Little apartment. When we first met I was not as disabled as I am now. There became a point in our relationship where he was my caretaker and I was hardly able to take 2 classes. I was happy though because I had

him and Sonny and a beautiful wedding dress. When he left me I thought it was my fault because I am sick. His mom texted me and told me that it wasn't fair to him that I was sick. A few months later Sonny passed away unexpectedly. Sonny was everything to me His death was devastating on top of everything. I have sense built up my self worth, started blogging, and went back to school. I now know that him leaving had nothing to do with my illness but with him. I deserve everything a normal person does, including love and a family. A part of me is still hopeful that I'll get to

have that again. But it is hard dating when I am so disabled. I have been labeled hard to get," because I cannot text/snapchat constantly due to severe eye pain, which I was honest about from the beginning. Of all the things I have been through I really just want to have my best friend back. Is there anything you are afraid to tell people in your life? Because of my illness I am very close with my family and friends. Over time I have let go of everyone who doesn't put my health and well being first. I have gotten to the point where I just say things as they are. I call this person "savage Sarah," because before my illness I was very reserved and put other people first where I now have to put myself first.

Does the fact that your disease is invisible change how healthcare professionals treat you? Heck to the yes! I often have to see multiple of the same kind of doctor before I find one that takes me seriously. For example, I have been to 3 neurologists, a pain institute, and 2 eye doctors, and a neuro ophthalmologist for the same symptom; migraine eye pain. I t ve become a pro at doctor hunting and have even had to go out of state just to find a doctor. My favorite responce for my migraines was that it sounds like I t m not trying to help myself, despite cutting out classes, not driving, wearing special glasses, going to multiple specialists, trying food, yoga, and physical therapy along with botox, epidurals, MRI s, and even injecting myself with meds. Then the next doctor I went to told me that I already tried everything and that I would just have to live with it. I never know what I am going to get when I meet a new doctor. If we

have learned one thing it's to not give up even when it seems like there is no hope. Someone out there has to know something about what I am going through.

What is your best coping mechanism? Blogging has given me control over everything I'm going through. Jesus and dogs.

What are you most concerned about and the most hopeful for the future? Biggest concern- that I won't get to be an architect. That the extraordinary measures my family have taken for me to be get an

education won't be worth it.

Most Hopeful- To become an architect and have a family I guess I am most fearful that I won' t get what I hope

able to

someday . for.

Is there anything you don't want to talk about during the interview? Because my dad thinks the drones are out to get him(joke but actually paranoid) I would like to not advertise my Last name but instead use Sarah Nicole (my middle name) .

Is there anything you want to talk about during the interview? like an organization you want to promote or something specific you deal with.

I would like to mention my blog InvisibleMEdiary.

What is the hardest/best lesson your condition has taught you? Others will try and tell you your worth, but only you can define your self worth. The past 8 years have been a rollercoaster of losing myself to learning to love myself. This illness has changed my way of seeing the world and I have grown to love the insight I have into suffering and what is truly important in life.

What is the best purchase under $100 that helped your life?

My Emily Dickinson Book of Poems.