Monday, March 5, 2012

Update...

Wow, apparently I thought that I was making a comeback....a year ago.

Here I am, still in this bed a year later.

591 days or 1 year, 7 months, 11 days including the end date
  •  51,062,400 seconds
  • 851,040 minutes
  • 14,184 hours
  • 84 weeks


Taken this weekend:




Almost exclusively bed bound. This is the hardest thing I have ever been through. I don't even know where to begin to explain the sheer horror that I have been through.

I am going to try to start catching up with blogs all of the people that I have missed so much.

Johnny sleeping with his mama, green from another bout of pneumonia.
My motto has been, "Just Keep Swimming!"
Missing more beautiful fashion accessories
First double port.  Collapsed lung and failed port.  Now I have a double lumen power port on my right chest.
Johnny and I
Early fall 2011, lung collapsed X-rays every 12-24 hours
Right after we shaved the rest of my hair off.  This was my, "I am not my hair picture!"
My boys. John shaved his head when my hair started falling out.

Johnny wearing my wig, not long after we shaved the little hair I had left.
I havent' been able to have visitors since late fall. I have been sick with back to back illnesses on top of everything else going on because of my immune deficiency.  I'm on lifesaving treatments two times a week for the rest of my life, but I still caught everything. I miss hugs like this.
Our Christmas card
A better day....
Johnny and I in January
In the fall, when I was able to move around more without the wheelchair.  Wearing a LYME green wig from one of my best friends.
In the fall, I started to really turn the corner. I was able to go go to doctor's appointments. I was sitting outside for short periods in my front yard. I was able to walk around a bit.  I had so much fun with the wigs my friends were sending me. I even went in the wheelchair for about 15 minutes to see Johnny trick or treating.  The day after Halloween I had a major set back. I have been almost 100% bed bound since Halloween.  Things really went down hill. Everything from a failed port which resulted in a collapsed lung, to new port placement, heavy treatments, pnuemonia's, shingles etc.  I am attached to an IV about 20 hours a day.  I haven't been out except for a couple hospital trips and ambulance ER fiasco's.

I really am going to try to return to blogging. I miss it a lot.

oxoxox

Juliana

55 comments:

Tree Hugging (Almost) Attorney said...

You still look absolutely beautiful. And your positive attitude is amazing. You are in my thoughts - and I am so excited to see you back in the blogosphere.
xoxoxo

Busylizzy111 said...

Hei,
I just saw that pop up in my reader and wanted to leave you a note. I am praying for you, sending you lots of strengs from the other side of the pond. Hang in there!
Love,
Lizzy

Tiffany said...

praying for you. I am so glad to hear from you.

Shea Posey said...

I am glad to see you with such a positive attitude. It bothers me when people are all FML all the time. You are such a beautiful and amazing woman and I'm sending you an immense amount of prayers and positive thoughts.

Julie said...

I was so excited to see an update pop up in my Reader feed. It looks like you're doing everything you can and I admire you for your optimism and strength. Keep swimming! Can't wait for more posts.

fleming Fab 5 said...

Prayers your way. I am glad to see you in the blog world. Just keep swimming!

Miss Caitlin S. said...

Juliana- I was so excited to see you on my Blog feed as I loved reading your blog. I am SO sorry that you are having such an incredible test of will power for over 500 days. You are definitely going through a battle that I can't even comprehend.

I am so amazed and teary-eyed of your smiles throughout the post. Your positive musings, your delight in things like Halloween, etc. You have an incredible spirit!!!!!

I look forward to you posting more when you can. You are still absolutely beautiful- your eyes have not changed a bit- and your spirit shines through.

I will be thinking of you and hoping to hear more from you soon!

Hugs!!!!!

Becca said...

my heart breaks for you lady! Though, I am amazed by your positive attitude. Keep that going! You are beautiful!

Hilldog said...

So glad to see a post! I know this was hard for you to do but, I was so excited to see you at the top of my blog list that you had an update!

love you girl!

preppyplayer said...

So glad to hear your "voice."
You do look beautiful, especially for one that has suffered so much. My prayers and intentions for you are that you heal and live a long and pain free life :)

Gen said...

i think of you often sweet jules. glad to see that smile...you are just gorgeous!

MediterraneanX said...

You are my absolute inspiration - I always hope and pray one of your posts will pop up so I can see how you're doing. I'm sad you haven't made the rebound you wish for but I will keep you in my prayers and send all my positive vibes to you and your family. I can't even put in words what a strong woman you are x

Ashley @ KiwisandCocktails said...

Ive missed you. You are one strong and amazing lady! I think of you often and LOTS and prayers and thoughts going your way. Lots of love! And that little guy of yours- MELT MY HEART! SO stinkin cute!!

Debby@Just Breathe said...

I apologize, I did not know you were ill. ((HUGS)) I agree, you look so beautiful with your shaved head. I am going to keep you in my thoughts and prayers. Thank you for sharing your story and pictures. Welcome back to blogging. Take care and God Bless.

Jenni said...

you were worth the year wait and you look stunning as ever!

like so many other followers, i was so happy to see an update in my reader this morning!

i am so sorry that you still aren't feeling well and will continue to keep you in my prayers.

Cara said...

You are absolutely beautiful! Keep up the fight!!! Thinking of you and sending prayers!!!

undomestic chica said...

Juliana, I don't comment often, but I read every Facebook post, you're in my prayers every night, your strength & determination are amazing.

Computergirl said...

You look beautiful. You have so much strength. Holding you and your family in my thoughts and prayers. Keep fighting xx

Politics and Pearls said...

Hang in there sister! You look awesome. Just know there are better days ahead :)

MessyDirtyHair said...

Wow! With or without hair you are beautiful! This post is so inspiring!


Xo

Rhonda and Gerry W said...

Sending you lots of love and prayers! You still have the most beautiful smile in the world. Hold on tight!!!! We are all routing for you!

Kara said...

sending you and your family lots of love and prayers!

Jus and Kat said...

Wow, your strength continues to amaze and inspire me! Hang in there.

Sending plenty of prayers and hugs!
Kat

jordiegirl said...

Lovely to see you posting again. Considering all you are going through it is really good of you to make the effort to get back to blogging.

I wish you all the very best and hope your health gets better.

Elizabeth Mae said...

I've missed you. I added you to my blog, went private. Glad you are back. I've been praying for you. You look beautiful and amazing.

Elizabeth Mae said...

I've missed you. I added you to my blog, went private. Glad you are back. I've been praying for you. You look beautiful and amazing.

Susannah said...

As always, I love you and your honesty and attitude! You are an inspiration. Love ya lots!

Miss Sweet Tea said...

I was so excited to see your update come up in my reader! You have always been one of my favorite bloggers. I'm so sorry that you've had to go through all of this. But I was very happy to see your sweet smile through it all. Sending good thoughts your way!

Anita said...

You have been in my prayers. Sending gentle hugs!

Kendra said...

You amaze me everyday. I love you and miss you.

Laurie Sublime said...

I'm so happy to see an update for you, sweet girl. I'm just so very speechless at all you are going through. I am so so so sorry. I am teared up and my heart is hurting for you so much right now. I have chronic illnesses myself, including asthma. But nothing like the profoundness you are undergoing. You stay on my prayer list in my kitchen. Thank you for letting us know what is going on and please do blog when you can. You are a beautiful person, inside and out, no matter what. God bless you each and every moment. Praying He will hold you up every second. With love, Laurie from Scene of Sublime Blog
http://sceneofthegrime.blogspot.com

Emily W said...

Just stumbled upon your update and my heart is breaking at the battle you are going through. God made us to be courageous and you are doing just that. What an amazing testimony you are to your son, husband and those who are touched by your beautiful life. I only know you through this blog and i am glad I do. I will be praying for you!

Jewel Divas said...

Wow, you're really being put through a lot aren't you. More than most people could deal with. At least you're still here, as painful as it may be, to see your son grow up.

Stavroula @drugstoreandbargainlover said...

Keep fighting Juliana, you're so strong and you have a wonderful family that loves you and needs you! I'm sending positive vibes your way! YOU CAN DO IT! :) x

L.C.C. said...

Welcome back to the blogosphere. You've been missed!

Melissa said...

You missy, have got to be one the most beautiful people I've ever come across.

You keep going!

Giving you all the love in the world x x x x x x x x x x x x x x x x x x x

Mindy said...

Juliana - I saw this in my reader and I was excited to see your smiling face again! It's so wonderful to hear news and to see that your family is pulling through this together. Sending hugs your way from Illinois! Looking forward to posts whenever you feel up to it.
Warmly, Mindy

Anonymous said...

Love that you are blogging again my sweet friend-- makes my heart very happy. I still checked your blog all the time even though I knew you weren't writing. I miss you so much and look forward to a time when this blog is all about the fun things that you are doing again-- I can't wait! Love you! -linds

Krystal said...

I always think about you and am grateful for the update.

Stephanie said...

I'm so happy that you are back! I was not a blogger before you got your disease but once I started blogging, I quickly found your blog and read through all of your older posts and was rooting for you from then on.

You've made me cherish the things that I normally wouldn't. And, I thank you for that.

Hoping for a full recovery for you and your family!

Phoenix said...

Your blog posts - and you - are so incredibly beautiful and amazingly strong. I've missed you from the blogosphere and I'm so glad you're back. Love, hugs, and good thoughts are being sent your way - and let me know if you ever need anything (I don't have any wigs, but I have a few rad fedora's that would look smashing on you!)

Love and more love,
Tracy

Tiffany said...

Is this all from Lyme Disease? I still have your blog on my blog list and every time I look at it I think of you and wondering how you are doing? I could not image how hard your life is but I am glad you are still her. I miss you!

PinkLouLou said...

You are so beautiful! praying for you daily pretty girl. You have a heart, and spirit that I have never ever seen. It is truly amazing. Keep swimming :)

melifaif said...

Oh honey....I had no idea, which is why I MUST find you on FB. You are gorgeous in every form. Love you....and praying for a miracle. Stay strong. Keep fighting.

Karen Mortensen said...

Wow. I am not sure what to say. I am so sorry you are sick. Hope you can get better soon. You are a dear person.

Cary Dale Taylor said...

Continuing to pray for you friend.

Selma @ Crazy Little World Of Mine said...

Missed you a lot, lady!
I'm not kidding you, but I was talking about you the other day, thinking how you've been, and here you are!
You've been in my thoughts on a daily basis! Still are!

Hang in there!

Hugs, and love.

Selma

Rebecca @ Unexplained X2 said...

Girl, this is utter craziness...it's so good to hear from you though.

Wiz said...

Its so good to see an update! You are in my prayers. Gosh, I just dont know what to say, but you seem so strong and I think we could all learn so much from you!

casey @ Yes They're All Mine said...

Ugh, I hate this stupid disease. I must say though that you still manage to look beautiful while being so sick! Lots of love and prayers to you from one lymie to another!

Raine said...

So nice to hear from you (kinda ;) ) Love the pics!

Mere said...

Jewels, I am still praying for you. You're gorgeous, inside and out! Stay strong! So happy to hear from you! xoxo

Love, Mere

The girl with the flour in her hair said...

You are amazing.

kelly ann said...

I was thinking about you the other day... I'm so happy to see an update. I am holding you in my heart and my prayers, you are so strong and I admire you more than I could say!

xo.

yvonne said...

so happy to finally hear something from you :) im praying for you and hope to keep hearing from you :)