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My name is Whitney Homer and I'm a 20 year old just trying to get through life! About 5 years ago I started to get sick and its been a roller coaster ride ever since. My blog is a place to document the struggles of someone fighting multiple chronic illnesses and diseases; while continually searching for more definite answers. Everyday is a challenge but with the help of my family I'm learning that nothing is impossible. Someday I hope to look back at this tough trial and it will be a thing of the past!

2.11.2014

Illness Isn't Always Visible or Obvious

I think writing an updated blog post has been on my to do list for the last four months. Everyday I make a to do list, because it makes me feel I like I'm accomplishing something and not just wasting oxygen and space. However, it's time for a major reality check. I am sick...really, really, sick. Since August/September, my health has been on a steady decline, and it is showing no signs of stopping. I was handling it okay at the beginning. Adjusting medications, working closely with my doctors, and increasing nutrition through tube feeds. But now, I'm struggling immensely. I'm the sickest I've ever been. EVER. It's pretty scary, some days I feel like I might just drop dead from exhaustion and pain, but I'm still kicking. So please forgive me for not updating everyone sooner, I physically have not had the energy to do so until now. I apologize to those who have been worried about my well being, I am in fact still alive...sort of.

September 9-15th was invisible illness awareness week. I wrote a post for it, saved it as a draft and it got forgotten about. The awareness week is long over, however, these illnesses are something I deal with 24/7 despite the amount of awareness they receive. So even though I hadn't published it on here, I want to now because it is an inevitable part of being sick. It is important for those who don't know what it's like to be chronically ill to try to develop this perspective and insight, so you can understand what things to avoid saying and how to be a friend. 
Just read it please.


"Illness isn't always visible or obvious. Sometimes people can look healthy on the outside, but be dying on the inside.
My name is Whitney, and I have battled with invisible illnesses.
I have more illnesses and diseases than I can even count. 
I have been chronically sick for 5 years, and bed bound/ feeding tube dependent for the last 2.
For the first few years of my illness, I spent SO much time hiding the physical signs of my illness. Spending so much time on my make up to hide the effects of the illnesses on my appearance, spending what little money I had on hair extensions to hide my balding and thinning hair, and wasting my precious energy in attempts to prevent the inevitable…
Because in everyone else’s mind, if you looked normal/pretty, you weren't sick….and I tried SOO hard to believe that and make it come true.
Obviously, as my illness got worse, I cared less and less about my appearance. As of late, I’m so sick I can’t even hardly bathe without assistance. I had posted the picture on the right on instagram, and received the comment 

“ Y would you post a  picture like. this you look like shit, do you know that?”

I have heard plenty of comments like that before. People wondering why I don’t do things about my appearance, pointing out how extremely pale I look, notice the bags under my eyes and tell me to get more sleep, suggest eating a hamburger due to how skinny I am, I've even had people question WHY I take pictures while I’m so sick, at the hospital, etc, and post them to social media, and why I don’t just wait until I’m better..
Because this is my life.
The picture on the right (no make up, sickly looking) is me. It is my life. I wake up in pain. My schedule revolves around pills. I see doctors more than my friends. I've had more surgeries/procedures than you've attended school years. 
I take pictures while I’m sick because I will not give up. I’m not going to “wait” until I’m better or “pretty” to ‘live life’. I will document this difficult time of my life through pictures, social media and however else I feel necessary.
The first picture (full face of make up, healthy looking) was taken 4 days AFTER the other. It was 4 am, I was in too much pain too sleep, and all the comments about my appearance had finally gotten to me. I got out of bed and did a full face of make up. Before I got sick, I did that routine everyday in record time, without blinking an eye. It only took 30 minutes this night, but it took every ounce of energy that I had.
I looked in the mirror and was overwhelmed with sadness. My pain was still there. My illnesses had not magically disappeared, and the migraine that had kept me from sleeping was still pounding against my skull.
But I looked healthy. I looked fine. And according to everyone else, a little make up, and I would be cured. Things would be better. I knew it wasn't true, but it was still unusually difficult to stare at the healthy looking girl in the mirror and know the true horror that was going on inside her body.

That is what having an invisible illness feels like. You look fine on the outside, but you know the truth. When YOU look in the mirror, you see the real reflection; the pain, the endless symptoms, medications, the real you. That behind the seamlessly normal facade, your body is literally killing itself.
Having an invisible illness is incredibly difficult. If you know someone fighting this type of illness, please be understanding. Don’t belittle their pain due to lack of physical/visible symptoms or outward appearance. Don’t ask them to change their appearance, or actions just to make you comfortable, because you have no idea how difficult it may be for them. But most of all, just be there for them. Be a friend. Try to understand, be there for the hard times, and be there for the good times. Just be there, because they need you more than you could ever know."


Update on ME:
So yeah. Anyways.
Disneyland was wonderful. But also a little heart wrenching, but wonderful. I just want to be healthy at the happiest place on earth. To be able to walk around and not be consumed by pain. It was a great trip though. Do you guys want a post about the trip or no? Let me know. For 2014 I want to update my blog more often, but I'm not sure what to write about. 
Since the Mayo Clinic (and our insurance denying to cover anything out there/out of state) we have been frantically trying to find a cardiologist who understands my rare heart issues and actually KNOWS what they are. Its proved difficult and frustrating, but I think (knock on wood and cross your fingers) I've found the man of my dreams. He was kind, he had actually HEARD of my disease, he had 3 other patients in the span of his career that had this, although he admitted I was the worst case he had seen ( which shows honesty) But best part? When we talked about possible treatment options (I've tried all the normal methods, and NONE of them have worked due to the severity of my disease, side effects, or my other illnesses interact) After hearing I'd already tried all of these I was sure he'd send me walking like all the others, but then he said had 2 other ideas! Unconventional, albeit, still possibilities. Now I'm not getting my hopes up because my issues have no cures and treatments are rarely a guarantee and mean life long medical procedures/medications, side effects. But if I could get one of my illnesses under a little control (and not pass out everyday) that would be a step in the right direction. Next appointment with him is on March 3 I think. I've been wearing a 30 day EKG monitor due to some other possible issues they are looking into, and also undergoing various other testing. So hopefully March will be good to me. I need something to finally be good.

I've been passing out on a daily basis, and standing up is basically an Olympic sport....my siblings have become wonderful spotters and often stand behind me with their arms outstretched in case they need to catch me. All of my issues are getting a LOT worse, and this is the first time during my chronic illness journey I've been "scared." My pain has been absolutely unbearable. However, I cannot explain how grateful I am for my incredible team of doctors. Even though my situation is not so wonderful right now, my team of doctors are fantastic and have not given up yet. They are doing everything and anything that they can to improve my quality of life, and I almost always leave my appointments feeling hopeful (and that's saying something. I think that's  as much as I'll expound on my current health situation.

     Recently my blog has hit almost 60,000 views, and from all over the world too. I never imagined it would get so many. I thought it would maybe get a 1,000 at the most and the majority of that would be because my mom was hitting the refresh button to boost my self esteem. 
However, despite this large number, or 500 instagram followers, I can still use on hand to count the people who have reached out and treated me as a friend. Lately I feel like I'd rather have just a few people who truly care than a lot of people who are merely curious. (That quote always struck a chord in me). It's a weird position to be in having so many people following your story, yet feeling more alone than you ever have in your entire life. 
The loneliness is another thing, along with my illness, that I am majorly struggling with. I knew that in life, people move on, but I never imagined I'd get left behind. All the people who said they'd be there through the difficult times are now too busy to be bothered with you...which is understandable I suppose, but nonetheless hurtful. Going through chronic illness is absolute hell. But going through it without an outside support system is unbelievably difficult. There aren't words to describe how hard it is. But it always makes me realize how grateful I am for my amazing family. So its hard. This illness rut (I sure hope it's a rut!) seems so unfair lately, which is selfish to say but its the truth. I imagined moving on with the next phase of life, but unfortunately I'm stuck, and feeling forgotten isn't the best feeling...But I have hope it will get better.
It has to...Right?


So that is the long overdue update. Here are some pictures. Until next time. Xoxo/Whit
P.S Hi to all of my new readers! 
Also, Happy birthday to my favorite red headed sibling Cameron (on the 15th.) 
And Happy birthday to my favorite sister Morgan on the (13th)! 
And Happy feeding tube awareness week ( 9-15th.)
Over and out.
Peace.
P.P.S
Boo valentines day. Just Kidding. Happy Valentines Day to everyone I love.











16 comments:

  1. LOVE YOU WHIT...LOVE YOUR BLOG

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  2. Love you Whit!! Happy Valentines day to you!! I love you too.. I know that you were saying that to me because Im sure you think of me every time it rains! :-) You are amazing my sweet girl!

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  3. Whitney...I am sure that you might not remember me, but I however remember you and your sweet mother who was a very good friend to me once upon a time. I am moved and inspired by your brave blog, and feel very blessed that I "stumbled" upon it tonight while I was home alone feeling a little sorry for myself. You made me remember how beautiful and precious our life moments are. You darling girl are anything but invisible, your life matters and above all your honesty and willingness to share your experience is a gift and forever far reaching. We may not know the reasons why, but I want you to know that I found strength and hope in reading your words. I hope you will continue with your blog, you have an amazing talent for words. All my love, many prayers and all the positive MoJo I can muster up to send your way! You go girl...you are powerful and beautiful beyond measure! XOXO Melinda Duncan Williams (Hutchings)

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  4. Love you whit you are such an amazing person! Things will get better! Keep fighting girl<3

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  5. Whitney, I am a friend of your amazing mom. I have known her for many years and I love her dearly. How blessed you are to be her daughter. God is watching over you and has gifted you with one of his glorious angels to be there for you. I admire your faith and courage. I cared for a wonderful husband for 44 1/2 years who was ill our whole married life. I love him still with all my heart and thank God for our time together. My prayers are with you. Give your mom a big hug from me. You are as amazing as she is. God be with you. Flo Parmelee

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  6. Whitney, I am a friend of your mother and I have known her for many years. I think the world of her and know God is watching over you with this amazing angel of a mom. You have her looks, her spunk, and her courage. I loved and was married to a wonderful man for 44 1/2 years shows I'll all of our married life. I took care of him and thanked God every day for this privilege. My prayers are with you and your family. Give mom a hug from me and let her know how proud I am of her for being there for you.Thank you for the courage you are showing me and the world. Believe me when I say God loves you. He has proven it by giving you my sweet Lisa for a mom. God be with. Flo Parmelee

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  7. Whitney... I want to second everything Melinda Duncan Williams (Hutchings) said. I also want to thank you for the kind insight and inspiring words that you share. I have two very hard letters and sympathy cards I am writing this morning. A dear friend of ours died suddenly and very unexpectedly in a meeting with clients in November. He was 31 years old. He left behind a wife and 4 beautiful children under the age of 7. Every time I go to write to his parents and wife... I just can't. This morning I happened to be listening to "Tuesday's with Morrie" with our youngest daughter, Natalie; a book on CD. I read this book shortly after it was published. When I read it the first time, I was grieving for the loss of both my parents. It gave me great hope and comfort. One of my favorite quotes in the book is, "Once you learn how to die, you learn how to live." --Morrie How blessed all of us are to read your beautiful and inspiring thoughts. You have indeed learned how to live... one day at a time... and if that is too big... you have learned to live 10 minutes at a time. I remember you as a darling, young girl. We lived in your ward and neighborhood for 6 years. You have an angel mother, a strong father and siblings that love and adore each other. Thank you for giving me the strength to embrace the hard thing I have literally "put on the shelf until I had the courage" to write. May you blessed for all your kindness, beauty and strength as you struggle daily to become well again. May you feel the arms of the Savior daily as you battle through the pain. May you know your life is of great worth... not just to your family... but those who find you. As you continue to discover the amazing woman that you already are... may you also see the wisdom and dignity you share with others. I wish you all the best and will be praying for your recovery! Warmest regards, Lorraine (Wood) Clark

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  8. You don't know me but you went to school with my husband. I've seen some of your posts over the years and have always been touched and inspired by them. I don't know that I would be as strong as you if I were in your position. You may not feel sting but I see so much strength in your posts through your courage and your hope. There's no doubt that you have touched the lives of many in a very positive way. I'm so sorry you feel alone and have to endure so much pain. Though I'm a stranger I will keep you in my prayers. Again thank you so much for the strength and hope you display. It makes me want to be stronger.

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  9. I loved your quote Whitney " You'll find that life is worthwhile if you just smile." Your an awesome example of humility and of being christ like.
    Smile on Whitney :)
    -Trevar Weight

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  10. I don't know if you ever saw my previous comment.

    Have you been tested for vascular ehlers-danlos?

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  11. Going through a chronic illness without any support system is rough, and every doctor I have had asked me, "How is your social life?" They expect--or hope--that I'll answer in a positive way, or semi-positive way, because friends and peers bring in their own form of support. It's hard to interact with the outside world when you can barely make it out of bed, though! And I think that's what most doctors...most PEOPLE...don't understand. That's easily one reason why I've lost so many relationships to chronic illness, and I hope you do not fall under that same category. Hang on to your support systems. Love them and cherish them! Thanks for typing this up and keeping us readers informed :)

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  12. You might not remember me, but I'm actually a cousin of yours on the Homer side, and I just wanted to let you know that you have my prayers.

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  13. I just came across your blog tonight and I want to thank you for sharing your story. I can totally relate to the loneliness and feeling like you've been left behind (and left with chronic illness while the healthy people who used to be a huge part of my life move on without me). I definitely get the loneliness. please know that people like me reading your blog are truly helped by knowing they aren't the only ones living with chronic illness. I realize you, as the writer, may not benefit as much as the reader, but as a (new!) reader, I feel less lonely after reading your posts. You are making a positive difference by sharing your story. So thank you for that! You're in my thoughts & prayers and I'm sending all the healing vibes I can muster your way.

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  14. http://health.usnews.com/health-news/hospital-of-tomorrow/articles/2013/10/30/which-top-hospitals-take-your-health-insurance-under-obamacare

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  15. Hey Whit, I read something today that made me think of you.
    "It's not about forcing happiness; it's about not letting sadness win."
    I hope you remember that on bad days, and even on good ones. Never give up. I love you beautiful girl.

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  16. http://www.mc.vanderbilt.edu/root/vumc.php?site=adc

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You'll find that life is still worthwhile, If you just smile