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The Sharp Side: My Struggle With An Invisible Illness

This date is one I will never forget.

There are so many dates in our heads, in our hearts, or on our calendars with “1 week before” or “1 day before” alerts to remind us not to forget this person’s birthday (Molly’s is this Friday!) or forget to wear red on Friday (National Wear Red Day!) and red/white/blue on Saturday (Farewell, aMARYca!).

I don’t need alerts for this date, though. This date is one I will never forget because I’m not able to.

Today starts my second year living with ITP.

My Motivation: I woke up before the sun, I have a full pot of coffee to myself, and a pile of 40 blood tests from the last two years.

I won’t be cracking open any celebratory champagne – although I may drink some just for the irony of it. I’ve already received flowers, cards, and well wishes – but not for the reasons you normally do. I’m not dressing up, putting my best makeup on, and strutting out of the house to make “this year the best year yet.” Not yet anyway. First, I have to write.

Well, first I have to put another load of laundry in the washer and get more coffee. Writing everything above this paragraph took almost an hour. It’s never been so hard for me to put my thoughts and feelings into words. I know I have to though. My story will not be a silent one.

The struggle is, though. I hide a lot of it. The most common response from my post one year ago today was – “I would have never known!” “I had no idea!” “You look fine to me!” This is exactly why I wanted to make my story public in the first place. This is exactly what an auto-immune disease is.

On the outside, you look and appear to be “fine.” On the inside, you’re fighting a battle that no one can see… and that some people don’t even take seriously.

I said this last year that if there is one good thing about having ITP – it’s that I’ve entirely changed the way I view people. You never know the battles people are fighting. YOU NEVER KNOW.

And you don’t have to. One of the reasons why it was so hard for me – why it’s still so hard for me – to share my story is because I don’t want people, especially viewers, to think about Angie Sharp as the Anchor with ITP. I want you to know me for me, which I promise is the person who you see on the television every morning. I am not “faking anything,” as one not-so kind person put it to me. I am refocusing. I am filling myself up with the energy of those lights and laughs and love that I have in my job every single day. I am finding myself again. When I sit at that anchor desk, when I surround myself with girlfriends, when I spend time with my parents, when I go to places I love, when I hug my husband – I feel like myself. I am not faking a thing. If anything, I am as real as they come in those moments.

There are moments when the struggle isn’t as silent. In the last few months, I’ve needed to share more and lean more on my support system to give me the good vibes and the prayers and the positive energy that I was looking for everywhere, but having a hard time finding. After tapering (oh so slowly, oh so annoyingly) off my steroids during the first part of 2017, I have seen my platelets start to steadily drop since December. Once again, I was able to hold my own and be off medicine for three months… and then my body started attacking itself again. I am still off medicine – it’s been five months now – but the trend of my bi-weekly blood tests is not going in the direction we need it to. I could be back on steroids as soon as next week.

A lot of people – my friends, my family, ME – ask “Why”? Why is this happening? The answer that brings tears to my eyes as I write this is – I don’t know. The I in ITP used to mean “idiopathic” – relating to or denoting any disease or condition that arises spontaneously (ha, you can say that again) or for which the cause is unknown. It’s unknown. That’s the reality of it. I found out this past week that the I now means “immune” – which… whatever. It doesn’t change anything. It doesn’t change the disappointment in the exam room when all your numbers are perfect… except your platelets. It doesn’t change the disturbing feeling knowing that something is definitely not right inside your body, no matter how “fine” you feel and look on the outside. It doesn’t change the disgust I have when I have to split a pill in two and put a steroid in my body. It doesn’t change the way I have to hold it together until I get out of the doctor’s office and then get every single tear out of my body while sitting in my car before I walk back into work. It doesn’t change the constant full body checking for petechiae, bruises, bleeding, and more that I don’t even want to mention. It doesn’t change all the unknowns I already feel about my future that I want to grow… and my family that isn’t growing at all.

I don’t know.

What we do know is that viral infections – colds, flu, anything that affects your immune system – affects platelet count. So, there’s that. I can get on board with that – eat healthy, exercise, rest, and try not to get sick, right? That should be easy. It’s not. We all know it’s not. So, unless I live in a bubble for the rest of my life, getting sick is going to happen.

It did. I struggled with a cold for several weeks around the holidays… and then there were the holidays so it’s not like life slows down that time of year. I didn’t take the best care of myself and my platelets dropped. That’s the only thing we can really hold on to as a “reason” for why this is happening this time. Who knows if that’s true. However, I’m over that cold now and taking care of myself better than I ever have before and, well, I guess we’ll see if the numbers are going up or down next week. Last week, they stayed the same in the 30,000 range (normal is 150,000 to 350,000). Yay.

I don’t want you to think I’m being negative about all this. I’m really not. It’s just so difficult to be happy or motivated or excited about staying the same. I’m a go-getter. I’m constantly trying to improve my skills and learn. I’m never sitting in one spot for too long. That’s who I am. If I was satisfied with staying the same, then my life would be WAY different… and WAY worse.

It could be way worse. I know that. Trust me when I say I know that. I know exactly what kinds of patients go to my Hematologist/Oncologist. I see them. They see me. I feel guilty and furious and uncomfortable every time I sit in that waiting room, knowing there are patients who are going through a way bigger struggle than me. I am sobbing as I write this – I sat in the same waiting room as Ellis Kell. It’s SO hard for me to write that. I was so shocked to see him that morning that I didn’t know what to say and by the time I found the words, he was gone. I feel so much regret for not reaching out to him sooner, to tell him that I’m rooting for him and that he was – and still is – one of my favorite people I’ve ever met and done a story about. His incredible passion and inspiration to me and others is something I think about almost every day. I fight in honor of him.

Live Fit With Lupus’ Hills of the QC Race

I fight for anyone who is going through these invisible illnesses like me. Those quiet battles. I share my story so others know that they don’t have to fight alone. Lisa Lynn Eveleth with Live Fit With Lupus is my motivation for that. She probably understands more than anyone what I’m going through… and there was a time you could actually see her struggle on the outside.

When I Emceed her organization’s Hills of the QC Race (which I’ve always thought is the perfect name for what people with auto-immune diseases go through) this past spring, she dedicated Bib #1 to me. It was an overwhelming moment. I had no idea what to say. It invigorated me, though. I am a fighter. Others need to know that and maybe one day, they’ll get as much inspiration from me as I get from Lisa and Ellis.

I don’t want to give daily, weekly, or even monthly updates though. I know that’s probably selfish of me, but I just don’t want to. This battle is still a very private one – before, during, and after it became public. I share with the people I want to share with and those who ask. Plus, there are other battles that we all go through that aren’t always “out there” and I don’t want mine to come across as one that trumps any battle anyone else is going through. As they say though, the struggle is real. I laugh every time I hear that or say it.

Two days ago, I traveled back to the University of Iowa Hospital to the place I visited almost exactly one year ago – Cancer Clinic B. I forgot how scared that made me feel last year – and at that time my platelets were triple than what they are now. However, I was on steroids still at that point. I have to remember that. At least I’m still medicine free… for now.

My experience was wonderful. It always is. I mean, it’s freakin’ Iowa City. We are lucky to have it only an hour away from the Quad Cities. Dr. Perepu is great. She’s patient, kind, and realistic… which I know is what I need right now, even if I don’t want to hear it. I had to hear the word “No” a lot on Friday. Seriously, it was a game of 20 Questions and every single answer was simply NO. Here’s an example:

– Is there a cause for ITP? (Probably the stupidest question I asked, but hey – I thought I’d try. Maybe a new study came out in the last year that my Google Alerts didn’t pick up.) No.

– Did I do something wrong? (Again, stupid – but I got hit in the face with a softball when I was younger and, like, 15 years later I had this crazy infection in my gums and had to get gum surgery the day before Thanksgiving, then go live on Black Friday with my face turned so you couldn’t see the puffy side. Don’t believe me? Check the tapes.) No.

– Is there a cure? No. (The only answer to this – steroids or splenectomy. Your choice. No guarantees.)

– Are there any foods that I can eat to boost my platelets? No.

– Are there any foods that I should avoid to boost my platelets? No.

– Well, I’ve started to drink Kombucha. I use Essential Oils. Does that boost platelets? No. (It might help me fight viral infections, though.)

– What about Wheatgrass Shots? (They’re just about as tasty as they sound, friends). No.

– Should I get a bone marrow test? No.

– Should I give up? No.

I didn’t really ask that last question. I know I shouldn’t give up. I am (hopefully) heading to Rush Hospital in Chicago in the coming weeks and months to see what an ITP Specialist there has to say. I’m not giving up hope, but I don’t expect more of it anytime soon either.

Here’s the thing – I can’t control what’s happening inside my body. I have to make peace with that and I think I am. As I enter the second year of this, I am realizing that this is just who I am and this is the fight I’m meant to fight. There may never be a reason for it… and that’s the part that’s pretty hard for me to accept. For the control freak I am, it’s so hard not to be able to control this.

As I go through that acceptance though, I’m reminded of what I can control more so than what I can’t…

My Support: I’m surrounded by the best friends, best parents, and best co-workers in the world. And I actually don’t think I’m being dramatic about that. It’s really hard to understand what I’m going through, but they try so hard.

I have friends who accept me, who know exactly when my appointments are, who check in on me, who make sure I know that I’m not alone. You know exactly who you are and I will never be able to thank you enough for the love you’ve shown me. My parents are my strength. “We will fight this together” were the words my incredible mother told me when I was breaking down in the parking lot of Hobby Lobby a couple weeks ago after yet another disappointing appointment. They will not leave my side and are willing to do whatever it takes to find some answers for me.

As for my co-workers, they just let me be me. The stubborn perfectionist who rarely takes breaks and sometimes puts too much on her plate to keep herself nice and busy. You do you, as Jon, Eric, and I always say. But I have to say this – people always tell me that it looks like the three of us get along so well and that’s no lie. Most of the reason why I am able to get through the mornings is because I know I have two friends who have become brothers on either side of me.

My Spouse: I don’t have any tissues left, so I have to keep this part shorter. I know that I would not be able to get through all of this without Zach.

Call it ironic, but our 5th Wedding Anniversary was the last day I took a steroid. Through good times and bad. Through sickness and health. Those vows have never been more true. This morning, I reminded him of what day it was and why I’d be hiding for awhile and he simply says – “You’re the same boo to me.” This man sees the very best in me always. Even when I get mad at him for making me go home early so that I can get rest or constantly checking in on me to make sure I’m doing okay, he forgives and finds the qualities in me that have not – and will never – change.

My Spirit: My spirit is one of those qualities. I cannot let my spirit fade away. I am naturally a positive person and I am trying very hard not to forget that. It helps when I’m doing things I love. I recently started going to my favorite yoga studio, Shine, again (shameless plug). The owner, Daina Lewis, is the best teacher I’ve ever had. At the end of each class, she talks about letting the light within you shine through. It’s such a good reminder that I do have light in me. I have a strong spirit that I can control and show even when I’m struggling. I’m using that to do what makes me happy. I know that I can’t win this – and won’t be able to win this – for anyone else, but myself.

Case in point – As soon as I hit “Publish” and share this, I am going to pack a suitcase and take a trip. I plan to explore an area by myself that I’ve never been to before. I’m going to live to the best of my ability and not focus so much on my numbers, but on my overall worth. Most importantly, I’m not going to feel guilty for one second that I’m taking this time for me. I’m tying string around my finger today:

Thank you for sharing this with me, Denise.

 

 

 

 

 

I’m not going down without a fight. No one should.

For that reason, this date is one I will never forget.

This date is one I will never forget because I’m not able to… yet.

Thank you for reading. – A