Tough times don’t last. Tough people do. 

   
Our health is one of those things that we all take for granted. You would think after everything I’ve been through, I would remember that. The last few weeks have been extremely stressful for me, as I watched a few tiny white marks on my shoulders quickly spread into several large white spots down my back and arms. Having no idea what was happening to me and after googling some of the different things it could be, I quickly assumed the worst. The different diseases I found online did not look very good. I tried not to worry until I spoke to my doctor, but flashbacks of me sitting in emerge being diagnosed with my last serious disease, made it really hard for me to stay positive. I had been completely confident that I would be fine back when I was diagnosed with GBS in 2011, and remember thinking I would be home in a day or two…and then I didn’t come home for 5 months. So this time around, I have been much more pessimistic that it was nothing.

Of course the one time I can’t get an appointment with my doctor for a week, had to be now. I couldn’t live with that fear for a whole week, so I decided to stop at a medi-centre on my way home from work. Memories of me being in that exact same medi-centre 4 ½ year ago came flowing back, and my fears and worries only worsened as I sat there waiting. My symptoms weren’t viewed as serious at all, so one after another, people got in before I did. As I sat crying to myself for almost 2 hours in the waiting room, I remembered how the last time I was there, the medi-centre doctor had told me I had a pinched nerve and sent me home. Less than 3 days later I was in ICU breathing on a ventilator fighting for my life. I suddenly decided I didn’t want their opinion anyways, and left. These were medi-centre doctors, used to treating cold and flus and minor emergencies, not skin conditions. Whatever they were going to tell me was wrong with me, wasn’t going to ease my worries if I couldn’t trust them.

So I chose to wait as patiently as possible for a week to see my doctor. I tried to prepare myself for the worst possible scenario and tried to imagine what my life would be like if it were some serious disease again. I cried a lot, especially when I found a new spot on my stomach.

Thankfully, my doctor thinks he knows what I have and it’s nothing serious; however, he believes I have a skin disease called Tinea Versicolor. It is a fungal infection that interferes with the pigment in your skin, resulting in discolored spots and patches. Because I am so dark skinned, these spots are extremely obvious on me. It is a disease commonly found in tropical areas of the world with high humidity, and given that I noticed the first white patch shortly after my trip to the Caribbean earlier this year, my doctor thinks that I likely developed it there. I have been given a medication to help control it and it should calm down in the next few weeks, but the pigment in my skin probably won’t return for several months. And unfortunately it is a disease, so it’s something I will likely deal with again and again, especially in summer months when it’s humid outside. And the spots will likely continue to return.

It’s hard to predict if it will progress any further right now or if I will be able to control it before it spreads. And it’s hard to predict what sort of things might aggravate it down the road. But reading about all the different lifestyle changes some people have had to make, like having to switch beauty products, avoiding exercise, changing their diets, staying out of the sun, etc., has been a little discouraging.

My first reaction was relief, that it wasn’t something serious. I’m not going to die, I won’t get sick, and it’s not painful or contagious. Things could be so much worse. But then my feelings of relief changed to anger. No, I’m not going to suffer physically at all, but it’s really fucking ugly and is already having a huge effect on my self-confidence. I would really like to be able to wear a dress or a tank top again one day without feeling like a fucking Dalmatian! And I don’t want to have to change my diet, stop going to the gym, and stay out of the sun !! And for this to be happening to ME?? Haven’t I gone through enough hell? Why should I have to deal with yet another disease in my lifetime!! Its total bullshit!! Every time I look down at my body I just want to cry. I have enough scars as it is, I don’t need anything else for people to look at. And even though I completely believe that beauty is skin deep, and that what really matters is who you are on the inside, it doesn’t mean I don’t want to still look normal.

However I do know that things always get better and I will come to terms with all of this. It’s really not the end of world and there are so much worse things I could be complaining about. I recently came back from a GBS Conference where I was surrounded by strong people that have been through so much, and it really reminded me that it’s not the situation that controls us, it’s how we choose to react to it. I will hopefully get this under control and if not, well, I will figure out how to live with it, just like I did with all the other imperfections on my body. Knowing what I have overcome in the past has given me the ability to handle anything life throws at me, and I know that I need to just breathe, and take things one day at a time. I am one of the strongest people that I know, and this is nothing compared to what I’ve been through. I totally got this 🙂

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8 Responses to Tough times don’t last. Tough people do. 

  1. Don Miller says:

    Holly your right you have been through enough. I had GBS in July 2014, but was lucky enough to be out of the Hospital in 20 days. I think about all that you have been through, and know how lucky I was. I look forward to seeing you post something. If you ever get to KANSAS let me know. We would love to show you around. I will be Praying that everything goes well for you. God Bless. Don

  2. Ed Thornitt says:

    Hi Holly,

    I am sorry that i could not make it to the conference in Calgary last weekend:) I will read your latest blog post later this week.

    If you have any handouts or notes from the reports on Physiothiapry (? spelling?) and on the one on lung disease I would be very interested in reading them. If anything else new came up with regards to CIDP, I would be most grateful if you could pass that along as well.

    Thanks for the great job that you are doing as our GBS/CIDP Liaison!! My cell phone has been hacked and it will be a while before I can get it fixed by Apple. This is the best and safest email address to get in touch with me. If you would mail that information on the above presentations to me, that would be super 🙂

    Thanks, and take care…. Fran Thornitt 35 Whitecourt Avenue, Whitecourt,AB T7S 1H3

  3. Vanessa Button says:

    You’re entilted to feel frustrated and have bad days. I watched your video, one of my friends posted it on FB a. The whole time I just thought “wow what a beautiful girl. So strong and determined.” You are absolutely gorgeous, I’m not just saying that to cheer you up either, I truly mean it. Beautiful before GBS and after. I’m a nurse and take care of people on ventilators every day. I know how much work it takes to go from where you were, completely paralyzed to where you are now. It was so inspiring to see you get better. Unfortunately most of the patients in our hospital are older and a lot DON’T get better. You reminded me of why I became a nurse! Thank you, from the bottom of my heart, THANK YOU!!!

  4. Rebecca Palmer says:

    Hi my name is Becky. I lost my husband on Valentines Day 2015 to GBS/CDIP. it has devastated me and my family. My husband came down with GBS 10 years ago then CDIP 4years ago and again this year in Jan. He was able to fight it the first 2 times but this time it was to much. The thing that has made me so angry through all of this is… Nobody told us how important it is that when you have been diagnosed with GBS it is of most importance that you follow up with a good neurologist for the rest of your life. So Holly what ever you do please find a good neurologist and make him your best friend. Is there a GBS/CDIP support group? If there is I would love to join it. I wish you the absolute best in life. May God Bless YOu

  5. prokops says:

    Hi there :). I saw your story floating around on Facebook the other day and decided to google you because I was interested in your book and came across this blog. First of all, you are a huge inspiration! I can’t even imagine just having a baby and then fighting so hard like you did…what you went through really was amazing! Anywho- I was reading this latest blog post and wanted to say that I was also diagnosed with Tania versicolor several (probably 8-10) ago. Just like you I noticed the white pigmented areas on my shoulders and back. Ugh. It was while I was in college too, back when image was everything! it was bad, and covered probably 50% of my torso/shoulders. The next summer it came back, but was about half as bad. The summer after that…nothing. And nothing since. So, this may be a temporary thing to deal with for you- one can hope! I’m always afraid it will come back but so far it’s been a long time and, nothing :). Stay strong!

  6. Kristi says:

    I just watched your story on YouTube. Your honest frustration is understood. I pray you will consider more the extent to which you matter to the One who matters most; and any scar or mark could only be a reminder of Jesus, God’s Son, who lived, loved, suffered and died and lives again, for you, because He loves you, because He brought you through for a purpose greater than you. You are totally loved, totally worth it and made totally new through this One. So I pray this morning you will know how great is this God, who loves you more than enough for each mark or scar.

  7. Jenny says:

    Hi! I’m Jenny from Sweden. Just saw your hospitalstay on Facebook, and i just want to say that you are amazing.

    All the best from me ❣

  8. Holly, I just purchased your book and I can’t wait to read it! You are truly an inspiration. I shared your story on my FB page and told everyone if I ever complained about anything again to freaking slap me! Unfortunately I am a widow, I lost my husband when my children were just 5 & 6 – they are almost 12 & 13 now. It can be so easy to wallow in your own misery, your story was a kick in the ass that I needed today. Thank you!

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