Saturday, September 15, 2012

My Life Has Changed...

Question:  What do/did the people below all have in common?

Montel Williams, Ann Romney, Jack Osbourne, Dana King (my mom), and me.

Answer: Multiple Sclerosis (MS)

Yep.  I officially belong to the club. :)

I don't think I'm going to write my diagnosis story quite yet, but here are a few details:

  • I was diagnosed about 3 months ago.
  • My chances of getting it were only 2%. 
  • I went in because I was having double vision when I would look to the very far right.  
  • I had to stay in the hospital for 3 days to receive an IV steroid treatment.
  • The steroids give you a horrible taste in your mouth. 
  • Had I known that when I went in for my double vision, I would be diagnosed with a disease AND have to stay for 3 days, I would have:
    • Brought my husband
    • Brought a tooth brush and other toiletries.
    • Brought my phone charger
    • Brought pajama's.
  • Because my mom had it and now I have it, my girls chances of getting it is 8%.  Yes, that breaks my heart.    
  • I can still have more children.  I didn't think I wanted to but Heavenly Father told me differently. What does He know? ;)
  • My MS is "aggressive".  Whatever that means. 
  • With MS, you get lesions on your brain and spinal cord.  I have 30ish lesions on my brain and 1 on my spinal cord, but you would never know it. It all depends on where you get that lesion.  For example, someone could have 1 lesion in the wrong spot and be completely disabled.  Weird, right?
  • Based on my MRI scans, they think I have had it for at least 2-3 years, but thinking back I think its probably at least 4-5 years. 
  • I have actually felt healthier than I have my whole life so if it weren't for the double vision, I would have had NO idea.  
  • At first I was devastated and scared, then I was angry, then devastated again, completely humbled, and then overall, extremely grateful.  With all my crazy lesions, I really feel like Heavenly Father has definitely been watching over and protecting me.
  • I'm taking a medication where I have to give myself a shot 3 times a week.  Nate helps me when I need him to.  Side effects are bruising or "injection site reactions", and sometimes I feel really achy when I wake up.
  • Nate has been a m a z i n g throughout this whole thing.
  • Both mine and Nate's sides of the family have been extremely supportive.
  • And friends of ours have also been very supportive.
  • We feel so, so blessed.
  • We had to leave Nate's internship with Amazon early so we could start treatment back here in Durham.  Amazon was so awesome and understanding with the whole thing.  
I haven't told many people until now because...
  • At first, it was devastating and I wanted to wrap my head around the whole thing before it became public knowledge. 
  • My mom battled MS for 22 years, had such a severe case of it, and died about 1.5 years ago.  I felt like that was going to be me but I didn't want others thinking that I was just following in the same path as my mom and that I would be dead in 22 years. 
  • I didn't want my MS to be a label.  I'm realizing now that it will always be one of my labels, but it doesn't have to be the label that defines who I am.
  • I wanted people to see me and know me for ME, and not my disease.
  • I didn't really feel like people needed to know.  I still sort of feel that way.
  • I didn't want people treating me differently.  I still don't want that.
  • I sort of felt bad "ruining" people's day with the news.
  • Pride.
I AM telling people now because...
  • I feel comfortable with where I am at mentally and emotionally with my diagnosis.
  • I am not afraid anymore.  Worried about the future (mostly for my family), sure, but not afraid.
  • Family and some close friends know, but it was getting to become an unnecessary chore to "contain" the secret and make sure no one was letting it slip.  It just caused a lot of unnecessary stress. 
  • Writing is therapeutic for me and there have been several times when I have felt like I wanted to write about some of the experiences I have had, but couldn't because I hadn't gone public with my diagnosis.
Side note: I am a HUGE Ann Romney fan and feel like I can relate to her very much now.  Some people have suggested that I find out what she does for treatment and maintaing her MS.  But I sort of feel she has better things to do, haha.  

I am pretty open and comfortable talking about all of this so feel free to ask questions if you'd like. You probably won't find me talking about it very much on Facebook or anything but I'll probably blog about different things here or there. I'll write my diagnosis story in the near future, too.  

I am prideful and say I feel fine.  And I actually do feel fine.  I have to keep reminding myself that I have an aggressive disease and that I need to take it easy and take care of myself.  It's just hard when you feel so good.  

Thank you for your prayers, love and support.  

23 comments:

Sarah Tayebi said...

Kelly, you are so amazing & inspiring. Thank you for sharing. Love you mucho mucho.

abby said...

Oh Kelly, I don't even know what to say. I'm very teary right now thinking about all you must be going through. Your positive outlook is so inspiring. We've talked about this before I think but my sister has MS, diagnosed late 20s. Now she's almost 40 and you would never know she has it. In fact, I don't think most people know. She has 6 kids and is awesome. I know every case is different but I think sharing stories can be helpful. I will be praying for peace and strength for you. Lots of love to you and your sweet family.

Erin said...

Kelly, we LOVE you! Thank you for sharing. You're an inspiration and so brave. We will be praying for you all!

Shelley said...

Oh Kelly, I am sooo sorry!! You are in my prayers!

Emily said...

Kelly-you are truly amazing. What an inspiration, and admiration you are. Thank you for sharing. You are such a great writer, and I will keep you and your family in my prayers.

joel and laura michelle said...

Kick MS in the can Kel! WE LOVE YOU and pray for you during every prayer in our home.

Stacy Pettersen said...

Wow. Best of luck to you, my friend. Love you! You never know who you will be able to help through your experiences (look what Ann has done). I am sure you will be a huge strength to others just by your life!

A | E said...

What an amazing, strong woman you are. We send our love to you today and always.

Haley said...

Love, love, love you. You are beautiful and strong and compassionate and I admire you so much. I'm here for you ... literally ... you hardly ever get to go a day without seeing me. :)

KDB said...

Kelly,I am so sad to learn of this news...my heart aches for you, but thank you for opening up and sharing. I know that you are an amazing, strong person who has been given this challenge in life because Heavenly Father knows your strength...that you can endure this well...and I am sure you will despite how difficult it may be. Lots of love and prayers to you, Nate, and the girls. xxxx

Tiffany Cox said...

You really are amazing! And I'm so glad you've let people know now. I think it really helps to just put difficult things out there, because you need people who can support you. Much love!

Erin said...

Wow, you are amazing!! I cant imagine dealing with things like that while chasing kids around! It always makes.it 100x better when Heavenly father is helping out! I wish.I could help out!

April said...

Kelly, we are so sorry to hear the news! You are such a strong person and have a great attitude! You will be in our thoughts and prayers!

Kaitlin and Charles said...

http://chadandashleybuck.blogspot.com/2011/09/6-day-week-mom.html

A friend of mine with some similar trials

Scott and Collette said...

Oh Kelly, so sorry to hear the news! Love you and your cute family. You're in our thoughts and prayers.

Jessica and Reece said...

You are incredibly strong and I admire you so much! Sending lots of prayers and good thoughts your way. Much love to you and your sweet little family.

Jeff and Kira said...

Kelly, I am completely floored by your strength, bravery, faith, and positive attitude. You are truly inspiring. I am so sorry that you have to go through this. I can't imagine how difficult it has been, but you couldn't be handling it better. I will keep you and your cute family in my prayers :)

Chelsea said...

Kelly, I'm sorry to hear this news. But thank you for sharing this - I really appreciated reading your pros and cons. I am glad that you really are feeling well right now. Know that you are in thoughts and prayers!

Ashley said...

Hi Kelly,

I am so glad that you found my blog. Your post was written beautifully! I actually emailed you, so make sure it didn't go to your junk mail.

Ashley

Amy Rex said...

Kelly,

I feel like I should say something really profound and encouraging, but I just don't know what to say. I'm sad. I wish you didn't have to go through this!!! I just want you to know that Tyler and I LOVE you and are thinking about you and praying for you.

You are amazing and such an inspiration to me. When you wrote that post about Angels I had a feeling this was coming, but hoped I was wrong. I'm so proud of you for being open about it and SO brave.

I know we don't see each other often, but you will always be a friend and you will always be a loved one in the Rex household. We love you guys!!!

shira said...

Love you to pieces Kelly! Know that you are in our thoughts and prayers. I'm sorry you have to go through this and I pray that all of your treatments will be successful in helping you feel well!! Hugs and kisses!!!
Shira

Rachel Nelson said...

Kelly, I read your post a while ago, but just didn't know what to say. I've been thinking about you a lot lately and wonder if I could be as strong and positive as you. You are so inspiring. We will keep you in our prayers. Hope all is well.

Judi said...

Kelly, some how I missed this post. I've been out of the blogsphere for a while. I saw the post about your walk for MS and it made me go back and look through your posts.
I know I don't keep in touch very often..but I still have fond memories of our talks at work.
Keeping you and your sweet family in my prayers.