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.
Boo valentines day. Just Kidding. Happy Valentines Day to everyone I love.