I'm coming back...

It would take me a year to figure out how explain what has happened to me in the last 10 months.  For now...I'm coming back.  One step at a time (quite literally).  This was written for me today and I wanted to share~~

http://tagudin.typepad.com/alter_everything/2011/05/day-175-with-love-to-juliana-and-all-the-julianas-in-my-life.html

An amazing blogger, check her out.

Want a glimpse into what my life has been like:




Check your local listings for showings. The documentary is also on Netflix for immediate viewing.

I've missed you all very much. Thank to all of you who have connected with me through other social media and helped me get where I am today. I am still in bed 10 months now, but I am making progress everyday. I'm walking to the bathroom and even down the hall a bit. I have answers and one day I am going to get my life back in the biggest way possible.

P.S. I apologize if I haven't replied to your email. I literally have thousands of emails mainly junk in my blogging email. I will eventually get through them.

oxox

Hiatus

This blog is on a long term hiatus until I am fixed again.  I miss you all very much but haven't been well enough to maintain it.  I'm insanely blessed to have the greatest friends in this entire world.  All the love and support has been the reason I am getting by.  This is the hardest thing I've ever been through.  Please don't take a single thing for granted. When you have your health you have everything. I would give anything in the world to have my life back. 

I'll be back one day...

Dear Johnny

Dear Johnny it's been awhile since I wrote you a letter. I hope and pray you'll have very little recollection of this phase of our lives. If you are able to conjure up any moments from this young age I hope they are blurred memories bundled up in faint giggles. I hope you can only remember the good times even though often those seemed far and in-between. The truth is there is always more good than the visible eye can see. If you can remember these days I'd want you to remember that it's only on the darkest nights of our lives that the stars are most visible.

You woke up tonight with a terrible nightmare. You screamed so loudly the air just escaped from your little lungs and clung onto the walls of this house. You were screaming ,"mommy no! No ambulance!" I heard it and my heart sunk (it's always my heart doing something isn't (wasn't) it? Only your nightmare has been our reality for months. I hate that I was the instigator of your terror. It shouldn't be that way. Two and half year olds should play with toy ambulances and make fun siren noises, they shouldn't be strapped to one that's taking their mommy for the dozenth time this year.  You should be playing in the snow and not asking if I need more oxygen or if I need medicine. I'm sorry. I really am. But know that even though my heart may be flawed in so many ways medically that it truly beats for you. People throw words around all the time but I mean it when I say that you saved me. You did and someday when you are old enough to understand why you'll know.

I know that I am missing out on a lot of your life right now. I cry about it a lot but there's not much I can do but hope. Hope for better days and all the fun we will have together. For now, I'll take what I can get. At this exact moment you are asleep in my bed next to me. I'm  exhausted and I sleep most of the day but I'm wide awake. I watched you sleeping for awhile that cute little pucker and your soft sweet face. I held your little foot and thought about all the places it will take you in life. I held your tiny body next to mine and found my breath was taken away. This time not because of something medical but again because I am overwhelmed by the amount of love I have for you. When you are a parent someday you will understand it. All my life I was enamored with love...I've lived everyday for just another taste and couldn't get enough. Then you were born and it's like nothing I'd ever felt before. Ten million, trillion times stronger than any love I'd ever had for anyone even your daddy. It's the most beautiful Feeling in the world. I'm your mommy! Every time I see that I smile as if it's the first time I've ever said those words. The best thing I'll ever be called...mommy. Your mommy. I've always loved you good times, bad times, the worst of times-all of it. Even when I wasn't there...even all those months when someone else tucked you into bed. Those months when I felt like someone had replaced me they hadn't I was still your mommy. In bed or not I love you just the same actually more.

I'm your mommy:) that's the greatest thing in the world

Hello 2011

Hello 2011,

Hi guys! It's me, it's been a lot longer than I realized.  So much has happened that I don't even know where to start. I'll recap with the few pictures I've got in this blog...but I sure have missed everyone.  I'm still in bed...5 months now.  It's been hard, really REALLY hard...but there is a light at the end of the tunnel.  We know what's wrong now and I am going to get my life back.  I'll explain more in future blogs...nothing else really happened in my life except health stuff, lots of hospitals, multiple 911 calls and many specialists to figure out why my body has been so broken...

BUT...I miss my blog. I miss blogging. I miss reading blogs. I miss getting free stuff, I miss the money, I miss the whole damn thing!

I used to love to blog...my blog was my sweet release. It was the place I went to unleash a flood of emotions through words that were often just flowing through my fingers and sometimes made no sense. Still, they made me feel better and eventually this blog became more than just a release because I met you guys.  I met people who have changed my life for a moment, for a lifetime.  Then I lost all my comments when I got my lovely blog makeover and it crushed me that all those memories were lost forever.  Once I got sick my blog was more for me than anyone. My blog wasn't what it always was and I lost a lot of followers and comments...but it's my blog my life. I can't control the way things have been or how they still are and once again this blog was started for me.  I'm regaining it back.  I'm healthy enough to blog again and am slowly going to get back into it.

Miss you guys. (Please don't be offended if I takes me awhile to get to your blog...I'll get there eventually)

P.S. To the wonderful etsy sellers and small businesses that sent me product that I have yet to review and go giveaways with...I will start scheduling them slowly as my health allows.

My life in pictures the last 5 months-

1st picture-At the beginning of my illness when I had pneumonia. I had just walked from the cot to the curb and my proud hubby took this picture. Little did I know what was to come. I felt like crap in this picture and was NOT pleased with my newest fashion accessory. 

2nd-Dexter came into my life and kept me company through the roughest days.

3rd-How I spent almost the majority of a couple months totally FLAT or on my side

4th-My pissed off heart!  In the cardiac unit they couldn't figure out why I wasn't getting better. Then I got an unknown virus from the hospital that made me REALLY ill.  Little did we know I have multiple immune deficiencies and couldn't fight it at all.  (I start IVIG and SubQ infusions for the rest of my life hopefully this week!)

5-I have a whole photo album of these. Since I couldn't go out and do anything my sorority sisters took a cardboard cut out of me on all sorts of adventures!  People were so nice-they took pictures of Christmas lights including my own house so I could get to see everything.  People brought Christmas to our house this year.  We were so overwhelmed with all the love and support.

6-My doctors appointment last week

7-On Christmas we had me lay on the floor near the tree. I lasted three hours and then paid for it for days, but it was worth it! Here's a picture of Johnny falling asleep on me. Being away from him so much was the hardest part of this experience. This was one of the best moments of my year.

QOTD: "To live every day as if it had been stolen from death, that is how I would like to live. To feel the joy of life, as Eve felt the joy of life. To separate oneself from the burden, the angst, the anguish that we all encounter every day. To say I am alive, I am wonderful, I am. I am. That is something to aspire to."
— Garth Stein ...

Golden leaves

My mom took me to one of my appointments yesterday.  She is driving down the street and all my senses are overwhelmed.  Flashing colors. People. Scents. Movement. Life…it’s a total sensory overload from my 65+ days in bed.  I am shocked to see that the trees lining the street have leaves of bright shimmery yellows and golds.  The grass is covered in a soft confetti of color, it's one of my favorite times of year. The air is unseasonably hot for this time of year, but there is a slight fragrance of autumn.  I see my neighbors in a whirl wind of motion and sound little feet running, bikes whizzing past, giggles, voices, and dogs barking-sounds.

  

How did this happen? Where did the time go? The last day I was over here it was July and we were splashing at the pool.  Just Johnny and I playing together...me being his mommy...doing what mommy's and son's do together.  Just living life.  My life--things felt perfect.

Where did the summer go?  Where did my August and September go, and can it actually be true that it’s almost October?  I just missed those days, those weeks and now months-it feels like it all happened without me.  But, that’s not true…I was there and many of those seconds, minutes and days felt like a lifetime.  A tinge of jealously mixed with anger and sadness comes over me.  I realize just how difficult it has been to “watch” everyone else just go on about their lives.  It’s very hard not to mourn the life you didn’t have, especially when it comes to Johnny and there is nothing I can do about it. I feel helpless on so many levels…and I am and I am not.  Every day I feel helpless simply based on the fact that I cannot take care of my basic needs.   I feel the desperation frequently of a little child who depends on their parents for everything to survive.  I should be that parent, but instead I have been playing the role of that child.  Many days I feel worthless-it’s pretty impossible to put into words.  One day I will take one step forward only to fall 50 feet back the next day.  I have felt like a human pin cushion, a medical mystery….just damaged and defective.  

I felt myself falling deeper and deeper into this isolation and depression. It’s so easy to tell someone that this is temporary and everything will be ok.  Everything is ok unless it’s you going through it.  Even then, I have always found a way to make it ok in my life even when it wasn’t.  It wasn’t, but it WILL be...and I needed to accept that while pushing through this with everything I had even when my body gave up.  It’s easy to tell someone to just cheer up…when the person saying it is the one who is happy.  A lot of people don’t realize that most people with chronic or severe illness can and do experience some form of depression.  I have friends that tell me that they wouldn’t last a week stuck in bed…but it’s amazing what the body and mind are capable of.  You push through, because you have no other choice.  

Imagine what it would feel like if your brain stopped sending correct messages to your body…your heart rate turned into a horse that had just escaped.  You push through when you really just want to give up because you know what you’re fighting for. There have literally been moments when I have pushed through just by picturing being able to sit outside on the porch swing again.  I am drenched in sweat, covered in vomit feeling like I am being poisoned and have the worst hangover in the world.  I’m picturing actually being able to SEE that contagious beautiful laughter that I can often hear from up in my bed.  I’m imagining our family at the park and the dogs running, I’m seeing myself being able to stand.  I’m in some of the worst pain of my life my whole body is on fire…my brain misfiring and sending my nerves the wrong messages.  It feels like I am caught on fire and the pain is imaginable.  I want to die…I don’t think I can go through this. I can’t control my thoughts anymore, the pain has totally taken over.  I am sure this is it, and that I am dying…and if I’m not I’m almost wishing I was.  I don’t want to live through this misery anymore…see Johnny’s face in my mind and keep pushing through.  I tell myself that Johnny needs him mommy and that is how I push through. 65+ days of this hell.  

I have been seeing a lot of specialists and haven’t been in an ambulance in over a week…so we are making progress but it’s still very difficult.  It’s amazing what we take for granted. I can’t tell you what I would give just to be able to sit upright in a chair like you are probably doing while reading this.  One day I will get there.  I can honestly tell you now that I am blessed, I am lucky to be alive and I have a lot to be grateful for.  I really believe that the best medication is hope and that life is not about what happens to us but rather about how we react in those situations.  That doesn’t mean that you walk around in rose colored glasses and pretend that everything is ok when it’s not…but it means that you try.  As little kids we are taught to keep trying and to never give up but as adults we throw our arms up in the simplest of situations and walk away.  It doesn’t mean that I am going to be happy about the misery I am going through, it’s doesn’t mean that I am not going to be jealous at times or crushed that I can’t be with my son and husband…but it means that I will try everyday to do what I can.  That’s all any of us can do anyways, right?

Day 43 of hell

Hello-

I realize that it has been 3 weeks since I last posted and I feel really bad that I have not been able to update and have worried so many people. I am really sick. Really, really, really sick. I have been through A LOT in my life and I have never been as sick as I am now. This is day 43 of being in the hospital or bed ridden.  What I have experienced I can only describe as pure hell and I honestly cannot believe that I have survived a lot of those moments.  43 days in bed, 6 911 calls, 38 needle pokes, 27 different medications and a ton of days spent in the ER.  I am now at home on oxygen, with a heart monitor and need a wheel chair just to get me into the hospital/appointments.

Yesterday we went to the hospital for more blood work and to see one of my specialists and I was too sick to sit in the wheelchair.  The afternoon was better and I was able to at least write. I never thought that I would be too sick to get online...not have enough energy to read emails or be in too much pain to text message. (Note, I have not checked any emails pertaining to blogging in 4 weeks and it will be awhile before I do so).  Now it's taken me 3 days to write this post.

I am in severe pain and my hands are numb. I'm legally blind in my left eye from all of this and hoping it's not permanent.  My body is burning and when I was in the sunlight from the house to the car/car to ER I was screaming because it felt like I was on fire. Kinda like a vampire but without all the cool sparkling...just pure hell.  Misery.  My body has been through more than anyone I have ever met before all this happened and the past 43 days have been the hardest of my entire life. Everything from neurological problems, to relentless nausea vomiting, headaches, numbness, tingling, burning, nerve pain, low temperatures, fevers, chills, blurred vision, pain...lots and lots of pain.  I have orthostatic intolerance...so even just getting to a sitting position my heart rate soars.  If I am upright for a longer period of time like going to the hospital I start to get very lightheaded, nauseated, sweating, my pulses are weak, heart is racing and I am about to pass out. I am working on building strength, but even lifting my legs in bed is a challenge. 

I can't even begin to explain the emotional toll being in bed takes on your mind.  Most of you know I was on bedrest most of my pregnancy...but it sure is different now being a mom and not being able to do anything. I feel helpless.  Hopeful.  Jealous. Very jealous of everyone who is able to go about their business. I have never been one to take life for granted, but now even more I realize how much we all really do take for granted. Just waking to the fridge, being healthy enough to pick your child up to change his diaper, being able to walk outside, drive a car, function...





The doctors still do not know what is causing all of this, but we are waiting on more test results.  If I don't make more progress/and or we get a diagnosis we will be going to the Mayo Clinic.  I am completely out of commission and  I want my life back.

It's heartbreaking to hear my son cry in his room and not be able to get him.  Have him beg for me to get out of bed to play, and have to tell him that I cannot.  I can't explain how hard it has been on me not being able to care for him at all...I can't even take care of myself.  We have had to hire help to take care of me and Johnny and have had family put their lives on hold to help us out.  I have always been a tough cookie and have pushed through anything and everything that has come my way in life...and I am doing the same now. I am getting breaks mainly in the afternoon when I feel crappy instead of awful, and I am thankful for those times.  I had about 1 1/2 weeks that were the worst of my entire life.  Think back to a time when you were really sick and you thought, "oh, I am SO sick, I just want to die...this is awful."  I usually don't get there.  I always tell myself...it could be worse and it will get better. However, there have been so many times were I just didn't think I could possibly survive through the night. 

I don't even know what to really say right now...but that I am here and I am sorry for not writing.  It takes so much energy to get online and many days I was too sick to even watch TV.  These days are better, but I am still going through a hell that I cannot believe. 

Tuesday is our anniversary and I cannot put into words how much I love my husband and how proud I am of him keeping our family together.  Not only is he exhausted, overworked, stressed but we got some really upsetting news on Saturday as well that is turning our lives upside down even more.  We just will take this all one day at a time and hope for the best.

Some of these days I just slept 17-18 hours a day. Now, I am up for about 2 hours before the debilitating exhaustion sinks in...but I am finding it harder and harder to sleep.  I am a wreck and it is taking everything in me to keep it together.  Being able to see Johnny even if it's only 15 minutes on a particular day keeps me going.  All the love and support from everyone has helped immensely...we have gotten so much support it's just incredible. 

It's just frustrating.  You think you go to the hospital and they fix you.  They are trained to fix you, but they haven't been able to fix me. I keep hoping that one doctor in these dozens that I have met will be my Dr. House...but I'm just passed on to the next doctor. At this point, I don't care what it is I just want someone to care enough to figure out WHAT is going on.

Prayers needed!

Hi,

I haven't been on my blog since my last post, conjuring up the energy to do anything is really hard.  I just want to sleep...all the time.  I am home from the hospital and although I am not as horribly sick as I was, I am still very ill.  John took me to the ER at 1am the night before to confirm what I thought was going on...a blood clot in my left arm.  It doesn't end.  I am exhausted, in pain, uncomfortable, sore, lonely, anxious, sleepy, dissapointed, confused, hopeful, nauseated, and weak. 

I have so many stories and maybe I will even blog about them while stuck here in bed.  Everything from an ambulance literally taking me 100 feet to the hospital (that bill will sting). To having a heart episode, pressing the nurse button and having medical staff come in...GASP and run out.  NO one helped me, it was one of the scariest experiences in my life and why I will never ever go back to the ER.  To having my mom's brand new car egged when we left the hospital, to the frustration of so many unanswered questions.  It has been an ordeal to say the least.

I have been totally overwhelmed with all the love and support.  I am REALLY bad at asking for help but am trying to be better especially now that I have Johnny.  Not being able to take care of him has been a big component of my depressed mood.  I hate that I am sick and cannot even tuck him in at night.  I have been beyond emotional.  Friends have offered a zillion meals and I was so hesitant and my friend Gina just basically told me it was happening.  Our neighorhood is bringing three meals + a toddler meal every night for the next couple weeks.  Johnny goes to daycare a couple hours a week and they have taken him on full time for next week.  Either my parents or John's parents have been watching Johnny and/or taking care of me every minute. The cards, the flowers, the care packages, emails, texts...everything has been lifting my spirits.

Three ambulance rides, 5 ER visits and a long hospital stay on a high risk floor is going to be outrageously expensive.  Our friends and family have even come to together to figure out how to help us out with that.  I am not sure how much it is all going to cost but at this point I would imagine it's up to $60,OOO dollars and we just need to see how much insurance will cover.

I am still a mystery and they released me from the hospital with higher white blood count than I had the day before---but still not too high.  They were convinced I had all these scary aliments and that caused me a lot of anxiety.  They have ruled out a lot, but frustrating that they don't still understand it all.  I really appreciate so many blogger's trying to diagnois me and help me.  I am pretty much open to anything and everything at this point, so here goes:

I have pneumonia and was coughing up blood and all the horrible things were ruled out.  I need the nebulizer breathing treatments, but had adverse cardiac reactions to all of the treatments they attempted to give me.  I have had 4 chest x-rays, three cat scans and a high resolution cat scan.


My thyroid levels are out of whack, but not enough to medicate.


My blood pressure went dangerously high and paramedics couldn't not get pulse.  Since then blood pressure has been fine but heart rate just random really high sinus tachycardia...even when sleeping. 


Oxygen all over the place.


I have thrush and am hoping a lot of my symptoms are from the Candida


Blood clot left arm.


Extreme sinus pressure that comes and goes...sinuses are congested but no infection.


They were convinced I had an adrenal tumor, but I was tested for that last year.  My pituitary was under active so I will get an MRI when I am feeling a tad better.


Never had a fever with any of this, but I get really flushed and feel cold and shake.


Night sweats, painful joints, exhaustion, coughing, burns when I breathe sometimes, nausea, vomiting, occasional headache, bad sinus pressure, blocked Eustachian tubes, negative ear pressure, extreme thirst and urination.

I am really hoping that I just was getting over that sinus infection that wasn't treated for so long...then had pneumonia for awhile not realizing it.  That my tubes are blocked and most of these other symptoms are from all these medications mainly the antibiotics and the Candida.  So many of you without medical problems have told me stories about spending WEEKS in bed with pneumonia.  Maybe my heart just freaked out being so sick and dealing with all of this and I am just pretty darn sick and need to rest and will get better soon.

I feel so silly writing out my symptoms, but enough people asked/emailed I actually thought it was a good idea. You never know who can help you sometimes.