Tuesday, September 28, 2010

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?

105 comments:

Taylor @ The Undomestic Momma said...

Im so sorry that your having to go through this Jewels..I have been in those shoes before and know its so miserable Im praying that you get better soon! Your in my thoughts and prayers daily just keep pushing through because things can only get better from here!

Crystal said...

I am just now learning of your suffering, and I just want to say how sorry I am that you have to go through all of this. There was period earlier this year that I was bed ridden for 2 weeks because I couldn't breathe, and I was so weak, so I can relate to a small portion of what you are going through. I know how frustrating it is to feel like you're dying and for the drs not to be able to tell you what's wrong. I pray that they will find the answer, and that you will be healed. Hang in there, your family loves you and needs you. And someday (hoepfully soon) you'll be able to take care of them again.

Sarah Ann said...

I am praying for you! I am so sorry that you are going through this! I wish I could give you a hug!

LeighAnn said...

Sending you our love and calling on Perfect Love to heal and comfort you, dear Jewels. Hang tough, sweetie.

Mere said...

Jewels!
I am still praying for you and I can't even still believe this is all happening to you...it's crazy....Keep going girl....things will get better SOON!!!

xoxo
Mere

Dollface said...

i agree, where did summer go? I feel like life in general is moving way too fast. I am so sorry for everything you are going through!! hugs.. xxxoo

Sydney_bitless said...

Keep on keeping on girl. I hope for a speedy recovery soon.

just call me jo said...

It's hard to think of you down in the dumps and sick and miserable and disillusioned. I, along with all the others, will pray that you get this behind you and move on to the good things in life. I want you to sparkle again.

Jamee said...

You have definitely been in my thoughts. As someone with chronic illness, I can sympathize with what you are feeling in the times that I feel helpless to be a parent to my daughter because I'm bedridden with pain. Its so frustrating and overwhelming, especially when there doesn't seem to be an end in sight or an answer to be found. I have had very many of the same thoughts and it is hope as well as the love and support of my husband and daughter that keep me pushing forward. I hope that you find relief soon and the doctors can find some answers SOON! If you ever need to chat, feel free to send me an email! You are in my thoughts and prayers!

Robin said...

I was so happy to see that you had posted something. I thought that maybe the doctors had finally diagnosed you and things were highly improved. Turns out that slightly improved and no diagnosis yet is where you are living. Although it does sound like they have narrowed this down to a neurological problem if it is your brain sounding out the wrong signals to your body. I suppose that is some sort of progress. I am still praying for you. In fact, you have been on my mind a lot recently. I hope it all turns around for you soon. xoxoxo Robin

undomestic chica said...

I'm so sorry this is so hard on you. I wish that you didn't have to go through this but I'm amazed at how strong you are. A much lesser person would have given up, but you are not and I admire that.

Lee-Ann said...

Lost more hugs & thoughts. I hope things are figured out for you soon & you are feeling better.

Birdie said...

I can't even imagine! I hope they figure this our in a hurry so you can get back to your life.

Ashley said...

I'm so sorry that you are hurting! Do you know what is wrong?

That One Mom said...

Continued prayers for wosdom and knowledge for your doctors. You're such a trooper! My thoughts are with you!

Susannah said...

I am so sorry for you and your family. I have been blogging and tweeting about you, wondering if anyone knew how you were. I am REALLy hoping you get better soon to take care of you little boy. I cannot imagine how hard that must be for you. Again, I am sorry and hope they find some answers soon!

purseblogger said...

Oh girl. I am thinking of you and praying you recover soon. I cannot even imagine what you are going through. We are here for you. {{{HUGS}}}

Janie B said...

God bless you with health and happiness. I'm sending you cyber hugs.

reagan said...

Glad to see you back on! Keep on keepin' on. And YAY! God for this awesome fall in the Mountain West!

Scott Teel said...

What happened with the Mayo clinic? Did you not go for some reason?

That line about being poisoned made me think of "The Sixth Sense" where the little girls are sick and one dies and no one knows what it could be and it turns out their mother is putting drano or something in their food to get them sick. Not that YOUR mom would do anything like that, no way. I doubt you'd have any enemies that devoted to something like that, either.

The Shepherdess said...

Thinking of you often and praying for you every time I do. It is so amazing that you are managing to post at all considering what you are going through.

~KS said...

That is all we can do...

My heart goes out to you- if I could make this all better, I would do whatever it took in a heartbeat. But I admire your outlook, and your honesty, and am sending all the loves and prayers I've got your way.

sprinkles said...

Oh Jules! I hate that you're going through this. Please know that I pray for you every day and I light candles for you sometimes too.

I totally get what you mean about mourning the life you didn't have. I often feel the same way even though I'm in a totally different situation. When I talk to friends, they'll mention the movies they've seen, the places they went to dinner or the great things they bought when they went shopping. I sit at home all day every day because I can't afford to do any of those things. And I'm missing out on life. Life is going on without both of us.

I hope those darn drs. figure out what's wrong with you soon and get you well! And that I get a job. And that we both can begin LIVING again!

Shelby Bukhenik said...

I'm pretty sure nothing I say can and will help you, but I hope you know you're in my thoughts and prayers and hope and wish for you to magically go back to normal. I can not fathom the mental and physical place you are in right now, but I know (even though I have never meant you) that you are a strong and beautiful person who cam fight off anything.

Rebecca said...

God, this is horrible. Have they come up with a diagnosis yet? It sounds like an unbearable form of lupus or something autoimmune where you're attacking yourself. You are a strong person for continuing to fight even if your body gives up. You're right about the depression and isolation too...that's the worst part and hardly anyone gets that part. ((Hugs))

Truthful Mommy said...

Sweet Julianna, I hope you feel like your old self soon. I can;t imagine how hard it has been to be confined to your bed and not be able to play and hold Johnny at your leisure as most mothers take for granted. God bless! Big HUGS!

Chic 'n Cheap Living said...

Just hugs, prayers, and love. Lots of us are keeping you in our thoughts. xoxo

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jhartburnett said...

Sending you as much love as I can pack into a prayer. Here's praying that this lifts and that you get the answers and the treatment you need to be back up to your old tricks and with your family. I watch for your posts, hoping that you are OK. Focus on your family and their love as much as you can when you feel blue. We are all pulling for you!

Lauren said...

Oh my gosh I cannot imagine what you are going through. I'll keep you in my thoughts and prayers--keep us updated!

Wombat Central said...

Hoping you're able to get out and enjoy those leaves in person soon, lady. Lots of positive thoughts headed your way...

Chantel said...

I couldn't imagine being in this situation. Hopefully you're healed soon. You are in my thoughts.

Melissa Blake said...

I got tears in my eyes reading this, juliana! you are far stronger than you know. i'm so sorry you're having to go through this. i'm thinking of you and your family every single day.

hang in there, friend!

Toemailer said...

Hope it all goes well for you!

Susan said...

Oh my sweet Jewels...I am so so sorry you have to go through this... of course none of us know the pain you are feeling right now.. but please know that as I type this I am placing you at Jesus' feet and asking Him to give you complete healing... we may never know why or understand why we must go through valleys here on Earth but He Is with you, all the time...

I will continue to pray for your recovery and check your blog for updates. You will have Joy again!

Ginger said...

You are so strong and so amazing. Sending up prayers for you

kittypolishnbags said...

Jewels, I've been keeping you in my thoughts. I am glad that you posted. I will keep you in my thoughts and prayers. You will fight this because you have a life you want to live on with, with people that you love. hang in there.

Ashley Stone said...

so sorry you're going through this all. I've been thinking of you and hopefully someday soon it will all get better! xoxo

Raine said...

So nice to hear from you! I hope you feel better soon so you can take your boy to the park and enjoy the sunshine :)

Mama Dub said...

So glad that you were able to post. I have been praying nonstop for you and your family. I sent you a quick email from my uncle who is a Dr. Not sure if you got it.
I know what you mean about the thoughts... those happy ones get your through and then the pain starts talking. You use everything you have left to envision walking again, seeing the sunshine, playing wiht your son, sitting on the phone with a good friend. I remember too vividly those same exact things. Bless your heart. I wish that I lived closer. I would do anything to help out. Still praying!

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Phoenix said...

Sending you lots of love and logs of hugs, Juliana. You are so strong and brave and so very, very loved.

gayle said...

Glad you posted to give us an update. I email you a few days ago but you many not have gotten it.......I seem to be emailing myself lately. Hope that you will feel much better soon!!

Anonymous said...

lov eu jewels, please keep fighting through this. i am hoping this new dr has some answers and can relieve some pain. stay strong. u are amazing, we love u! tam

SouthernBelleJM said...

Hope you get better soon:)

hollyh said...

I am so sorry it is taking so long for you to get better, but you are covered in lots of prayer!

mml said...

I would be the last person to tell you that "everything will be ok," or to "just put on a smile." You know as well as anyone that those are just sugar-coatings from people who do not know how to deal with a difficult situation.

But the fact is that you have to decide every morning how you are going to get through that day. Please know that Amanda and I know (however tangentially) the difficulties you face and the sorrow you feel at not being able to take care of your family like you want to. Love from Illinois, dear...

Brahm (alfred lives here) said...

Hi - just reading your post after not being here for awhile.

What to say, other than sending warm thoughts your way. Take this as an online hug!

That one girl said...

Hey girl, read this on my phone and never had the chance to comment. GET BETTER MAMMA!

And I'll send you some pics of the Aspens here, GORGEOUS!

Aritza, Goddess of .. said...

Hey Jewels, thinking of you very much and I am sending you all the positive vibes I can :) Take care sweetie xoxo HUGS xoxo

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JDaniel4's Mom said...

I am so sorry you have to go through this. I am praying.

kittypolishnbags said...

Jewels, I hope you're doing good. I keep you in my thoughts every now and then. Hang in there.

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Just wanted to send some positive thoughts your way... :)

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Anonymous said...

I just signed up to your blogs rss feed. Will you post more on this subject?

Emily said...

Sending positive thoughts and prayers from Seattle. Hope to see a post from you soon.

Mandy said...

Thinking of you this week. Hope you are feeling better!

Janine said...

Jewels, I am so sorry to read what you are going through. I cannot even imagine what you are feeling and having to process right now. I want you to know that I am praying for you, your hubby, sweet little boy and family as they stand with you. Sending you all my love and support. Janine

Willy said...

Willy's thoughts are with you.
10-4 Willy

Phoenix said...

Hey sweetie, I hope you are doing well and feeling okay. Thinking about you a lot lately and praying for your recovery.

Lots of love,
Tracy

gayle said...

Thinking of you!!

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Keeping you in my prayers until your next post.

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jhartburnett said...

Thinking about you every time I sign onto my blog. I hope your silence is because you are so busy running around and being healthy that you have not had time to post!

jhartburnett said...

Thinking of you every time I sign onto my blog. I hope that you have not had time to post because you are too busy being healthy and running around like crazy catching up on life!

Debbie said...

Juliana, I was coming over here to get an update on you. I had taken a break from blogging, however I had read you are not well. I do hope today is better and you are recovering. Update when you can, I have a feeling lots of us want to know and are concerned. You are in my thoughts and prayers. Debbie

Toyin O. said...

I am praying fro you:) You are going to be alright.

Jojo said...

Still keeping you in our prayers and hoping that with each day you grow stronger and healthier.

Tamara Nicole said...

I hope things are getting better for you! Sure do miss you:-) Hugs through blog land for you!

Presh said...

So sorry that you are going through this. I wish you all the health and happiness in the world, and pull through!

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determined2fly said...

I really hope you feel better soon, I'm sure when you don't feel well it's hard to think of anything else. Keep resting up and I'll be praying for you.

kittypolishnbags said...

Jewels, hope you're doing okay. I keep checking back on your blog for any news. Stay strong.

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melifaif said...

Juliana...I have been thinking about you a lot lately. And praying. I am so sorry you are sick. Do you know any other news yet? Please don't give up...and I won't stop praying. Deal????

My Life in Purple said...

I've been thinking of you...

I hope you're healthy.

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Raine said...

I was just sitting here wondering if you are okay. I hope so <3

Holly Diane said...

Wow, I have really fallen behind in reading blogs..has it really been 2 months since I have looked at this?
I am sending out positive thoughs and many prayers that things have become better for you.

Blessings,
Holly

Jacoba said...

Dear Juliana,

I hope you will be feeling better soon and that you will have a nice Christmas with all around you.
All the best for the new year!
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