September 13, 2010

Not A Regular Post...

This isn't going to be a "normal" blog post, but I figured I owed you an explanation of what's been going on lately and more importantly, I wanted to tell you. To very briefly recap those that don't know, I was diagnosed with Crohn's disease back in 2007 after going to the emergency room and being hospitalized on Christmas Day. (I know how to make the holidays more interesting.) Towards the end of 2008 my GI put me on a medication called Humira. I was still having Crohn's "flares" while on Humira, so in the summer of 2009 my GI doubled my dosage, putting me on a shot a week instead of every other week, which is over the max of what the FDA allows, so that was fun with my insurance company. Really, the past few years have been a lot of fun with my insurance company. They really hate me :) Anyway, taking one shot a week seemed to be pushing the Crohn's towards remission, finally. 
Life never seems to be simple though. I started feeling bad back in April. I went to my regular doctor, he talked to the GI, and it was thought maybe the weekly Humira shot instead of twice monthly was causing some side effects, so I cut back to twice monthly, my old dosage, on that. At my next GI appointment in May he ran some tests and found out I'd developed a B12 deficiency which can happen in people with Crohn's. That also seemed to explain some of how I was feeling, but not everything. I now take a B12 shot monthly so that's under control. The other symptoms I had developed never got better, though. Dizziness, light headed, numbness, vision problems - all kinds of weird stuff. My regular doctor referred me to a neurologist in August. I went and got diagnosed with vertigo, but he wanted to do a MRI because a lot of what I was experiencing wasn't normal for a 27 year old. The MRI showed demyelination which is a sign of multiple sclerosis. He did a spinal tap to test for MS, and confirmed it. Jared, my parents and I went and met with the neurologist on Friday to go over all over this. He says he's 95% sure it is multiple sclerosis, but my case is complicated because of the Crohn's. Because of that I have to see a specialist which won't happen until October 21. So as far as treatment and how everything is going to go, it's kind of on hold right now. The neurologist and several other people have said MS is not the same as it was even 10 years ago, and I should be able to get it under control and everything will be fine. (Although do you want to know what one of the hardest parts of this has been? With the multiple sclerosis flaring up and my being so dizzy and unstable, I can't wear heels, hence the lack of heels the last few months in What I'm Wearing... posts. I hate wearing flats all the time! I knew you'd all understand!)

I know this isn't a normal post from me. I know that's a lot of text, and links, and information, and in the end really not that many answers to what the future holds for me. I have an amazing support system in my husband, my family, and my friends - and in the last few months that's also extended to my blogging friends as well. I know I've been doing this for a year, but I really started to get into it and take it seriously back in March and now I think of how fortunate that timing was. I've needed this the past few months and I know I'll continue to need it.  You have no idea how much I love reading all your posts, how much I enjoy writing my own posts, and how it brightens my day to read all your comments. So to end this on a happy note - I love you all.

34 comments:

Kayla said...

While I can't say that I understand your exact situation, I understanding using the blogging world and the ladies along the way as a comfort and distraction. I too have some health issues - taking me out of heels too; what a bitch - that I've thought about blogging about but couldn't get the courage. Maybe you've inspired me. Sending you prayers and blog love!

Ramblings of a Small Town Girl

Marcie said...

Katie,

I am so sorry. My hear breaks reading this post, and then you made me laugh midway through with the reference to the heels! Even though we've never met, I can tell you are so strong and will pull through this. I am glad we can all provide comfort via the blogging world. Please continue to keep us updated.

xo M

Josie said...

Katie, I can't believe I didn't know about your health complications. Just the fact that you've never let on in the slightest shows how insanely strong you are. My dear, you are one of the most wonderful people in our little blogging world -- so kind, sweet, and supportive, not to mention very, very talented. You have a way of making everyone who has the pleasure of being in contact with you feel as if they've gained a new friend instantly. I have the utmost confidence in the fact that you'll pull through like the star that you are, and please remember that we're all here if you should ever need anything.
Lots and lots of love,
Josie

Mimi said...

we all love you too! like what our other blogger friends have said, although we've never met, i can feel that you are a strong person and i know you will get through this. and i understand what you said about having other bloggers as friends, i do feel that i have found friends who will always be there, so please know that we're here. stay strong!

<3, Mimi
http://whatmimiwrites.blogspot.com/

Miss Caitlin S. said...
This comment has been removed by the author.
Miss Caitlin S. said...

Hey lady! I'm sorry to hear about your rough news and hard times. Disease and illness are some of the most confusing, frustrating and debilitating (mentally if not physically) situations to deal with. I am so sorry that you have to spend time dealing with it. Good thing is your family support and the help they can give you. I think blogging is cathartic and it's great that you have found this outlet. We will all be here to read about your journey :) Chin up Katie- there is a lot of life to live and enjoy even with an illness. Don't let it get you down. xo

Kristin said...

I am so so sorry. For dealing with so many health issues, you've been amazingly upbeat and supportive to your fellow bloggers. My prayers are with you. I know you'll leap over this hurdle and have an amazing life. Keep the faith!

Jen said...

Hey Katie :) I'm sorry you've been feeling so crummy. I know someone with Crohn's, so I understand how awful it can be when it flares up. Also, my grandma had MS, and my fairly new step-mom does too. There's a huge difference between MS back in the day, and MS now. My step-mom is able to keep it under control with injections and meds. Definitely use us an an outlet when you need to vent. We're here for you :)

this free bird said...

Katie I just want you to know how much I love, love, love you. I'm so sorry to hear this is happening to you and while I can't entirely understand I can relate because of that stupid Celiac and all the neurological tests I had to undergo during which time I, too, experienced loss of vision, numbness, etc and they thought I had MS although in the end I was only bald from gluten.

Anyway, this is about you. If there is anything you need - anything at all - even if you just need to drop a couple eff bombs over the phone - please please please don't hesitate to let me know. There is nothing worse than being on hold with health stuff and wondering wth is going on! Ugh! Be kind to yourself and give that hubby a squeeze. You are such a special person and I sincerely hope you get back in your heels soon. You deserve the best. And ps - that speedy bag of yours could easily wallop someone from the insurance company over the head if need be. Just saying.

xoxo and mad hugs to infinity,
Carrie

Beauty H2T said...

like the darling Carrie above, I am thinking about you sweetheart. Since my first ever time on Blogger you have been there for me and I treasure your support and wish you all the strength and love in the world in this difficult time.

I hope you are resting and relaxing and being pampered. Keep us updated and if there is anything in the world I can do to help just let me know, maybe there are some uk treats you have your eye on I could send out to you?

all the love in the world,

Bx

Jessica said...

I wish I knew the right words to say, Katie, but I do echo everyone's sentiments here. You are such a strong woman who will definitely overcome this challenge that life decided to throw at you. You're such a sweet, caring, genuine person who I immediately felt like I "knew" when I started reading your blog - it's amazing how quickly we do develop these blog friendships, isn't it? If you ever need anything at all, please let me know.

Big hugs!
Jessica

mrs. origami said...

Oh Katie, you are so strong. Your blog is such a pleasure to read and I am so glad I have gotten to know you "through the internets" all these years. You are amazing and I am so happy that you have such a wonderful husband and family & friends to help you through all of what you are going through. I know I can't really relate to all of the health stuff, but I can imagine it is probably scary and very stressful. You are so strong and always have been through all of this, I know things will get better. Keep on being that wonderful girl you are! <3

Closet Fashionista said...

Oh no, my younger cousin has Crohn's so I know what that is like. I really hope everything goes well with all the Drs and stuff! You are such an awesome person, so you will get through it! *hugs*
http://aclosetfashionista.blogspot.com/

Isabel said...

im sending positive thoughts your way...stay strong!

last year a canadian news program did a story about an italian dr and his MS research...his findings were quite extraordinary..unfortunately the treatment isnt approved in north america but i thought you might find it interesting anyway...here is the link
http://www.ctv.ca/CTVNews/WFive/20091120/W5_liberation_091121/

Dobbygirl said...

Oh man, Katie, I'm so sorry. I had no idea, my prayers are with you. You are such an upbeat, supportive and funny person so I know you will deal with all of this with a great attitude. Take care of yourself and feel free to vent to all of us if needed. I'm thinking about you! xoxo Jenny

kirstyb said...

oh no a world without heels! so sorry to hear about this! I know i hope you feel better soon etc isnt the right thing to say but take care! xxoxoxox

FashionJazz said...

Omg hun, wow, this is hectic and I am so sorry you have to go through this....my thougts are with you and know that I am always here for you. Hugs xxx

Krysten @ After 'I Do' said...

Wow, what a crazy thing to have to go through. I've found that the blogging world is such a wonderful, supportive place and you're going to get nothing but love from everyone that reads this. I'm keeping you in my thoughts and keeping my fingers crossed for you!

Gets said...

Hey Katie! Just want to let you know that I love you, and really admire your strength and resilience. (: Even though we haven't met personally, I do know from your blog that you're an unusually strong and positive person; everything will be fine dear! <3 We're behind you all the way!

Love,
Gets

Summer said...

i love the post and I love your blog!! its really amazing!

love.
summer.

Jammer said...

Oh Katie, I'm so sorry! I wish I could reach through my laptop and give you a hug! I love your blog for EVERYTHING that you put on, so just know that we are all here if you every need to vent for 12 paragraphs. I know you'll be back in your heels soon <3

Lynzy said...

Katie,
being in the medical field, I know everything that you are going through and NONE of it is easy.
I wish you the best with everything and I know that you will have the courage to pull through it all. Thank you for sharing.
Lynzy

Taj Acosta said...

Awe doll, I'm glad you shared this with us so that we can have a better handle on supporting you. First, of course you will be in my prayers and 2nd, I admire your determination and courage. You are a very strong woman and that is evident! Know that we are here for you and are cheering you on for health and healing. hugs doll and God bless ;)

Valerie said...

Katie, I'm so sorry you're dealing with this. You're an amazingly strong person and you have an outstanding attitude about it all (I had a good laugh over your heels references). My thoughts and prayers are with you. I hope you feel better very soon.

xoxo
Valerie

MarchMusings said...

So sorry you have to deal with it but with a great support system like yours, it'll be easier. And I'm amazed you dealt with it so well and still wrote such great, cheerful posts for us to read. I hope things get better for you and you do get back to wearing heels again!

Corrine/Frock And Roll said...

You are a brave, remarkable woman - and I'm so sorry that you have to go through this.

Stylelover said...

Oh! I am so sorry to hear this! I really have no word but just want it to tell you that I am sending lots of positive thoughts from here and I wish you get better. You are so strong and breave, I really admire you. We all love you too!!! A big big hug from Andorra Katie!
xoxo
Vicky

Elle Sees said...

shit.
that sucks. luckily u have some AMAZING support and you'll make it. you will.

karina ink has MS, is a mom of a few boys, and blogs. she'll have some excellent advice.

emily☆ said...

I'm so sorry to hear (Read) this. When things like this happen I always want to stand up and shout 'why do all the good people have the bad things happen!?'
Hugs from afar! xx

Grace said...

You are a doll. And I had a roommate go through Crohn's. I know it can be a nightmare and I admire you for having the courage to stay positive!

Look forward to all of your future posts! :)

Love Grace.

ryan said...

Oh Katie, I am sending positive vibes and prayers your way. I believe you will get this all under control. And in the meantime there are some pretty fierce flats and flat motorcycle boots out there to help cheer you up. Love from Boston

Oh, My Darling said...

Aw, Katie, thank you so much for sharing this with us!! You seem like a very strong woman, and having a great support system in your family and friends also seems so integral as you approach these medical situations. Sending positive thoughts your way!

Bren said...

Katie,

Oh how I wish I couldn't relate! Isn't our medical system fun? I understand what it's like when appointments get scheduled like there's all the time in the world, waiting for test results which take even longer, hoping their conclusions are right, and trying out treatments. As much as you don't want to be sick, at least if you know for sure what it is that you have, you can go about treating it. My Dad is on Humira for Psoriasis, and that stuff is hardcore! I know he went through a pretty extensive approval process, so I'm sure it was a nightmare when your dr's upped your dose! Hopefully after your appt. on the 21st, they'll be able to get to the bottom of exactly what you have, so you can start feeling better. I'm praying that you'll get the solid answers you need.

I've never talked about some of my health challenges publicly, but would love to talk privately. I'm sure one day I'll do a "not normal" blog post too, but now is not the time. This is about you and your health. Please let me know if there's anything I can do to help you through this.

You know that I love and adore you, Katie!

xoxo,
Bren

Krystal said...

aww, katie, i will be sending prayers your way, so sorry to read that you've been feeling bad :( but...i'm sure like the doctor said - it will be ok - and you'll be back in heels asap :)