Get Me Out Of Here

songbirdgarden.com

songbirdgarden.com

I spent four consecutive hours yesterday watching, HGTV’s Beachfront Bargain Hunt.  For those of you who know better and spend your Sundays reading, writing or doing something productive, this particular segment on the HGTV network features people who are tired of renting and are looking for beachfront vacation properties to buy.  A realtor shows them several properties until they find the beachfront oasis of their dreams. 

After bombarding my brain with images of pristine aqua-blue waters framed by miles of golden sandy beaches, clear blue skies, thirst quenching tropical beverages and sling-shot bikinis, I felt even more depressed than I already was.

Really.

I am no different from the 1.3 million US residents living with Rheumatoid Arthritis. If you have RA, you will experience pain.  If you have RA and you live in a cold climate, you will most likely experience even more pain.  And stiffness.  And aches. And sadness.  And isolation. 

I know I do.

As a result (and just because) I am leaving tomorrow (weather permitting) for an almost 3 week hiatus, landing directly in the warm and comforting arms of my wonderful mother, who happens to live on the island of PUERTO  RICO.

 

Just what the doctor ordered.

NEGATIVE – Such A Beautiful Word

morguefiles

morguefiles

I am home, resting.

Another bullet dodged.

I have never been so scared in my life.

 Panic really set in last night and why wouldn’t it have?

After being told over and over how sick I was and then being told I most likely had another infection after what appears to now be false positive results…

I barely slept.  My heart would not stop racing and my back ached.

I listened to my body once again and went to the Emergency Room.

Although some levels are still elevated, results indicating signs of infection were:

NEGATIVE

NEGATIVE

N.E.G.A.T.I.V.E

Such a beautiful word.

I need to continue to monitor my body carefully and look for signs of abnormalities, as I am not completely out of the woods yet.

What a ride this has been.

I am sorry if I scared you all but I needed to express my feelings last night.  You have always been there for me and you were there for me again last night.  I felt your presence,  your love and your kindness.

Let’s hope and pray that, NEGATIVE  is a word I continue to hear throughout the weeks and months ahead.

Such a beautiful word.

I Cannot Sleep, I Am So Scared

It is 11:15 pm on Friday the 8th of August, 2014

I am laying in bed and cannot sleep. I am very afraid.  So scared.  So stressed.  Freaking out.

I cannot handle this.

I don’t know what to do.  How to feel.  What is real.  What is not.

It’s not funny anymore.

I am scared for my life.

The feelings occupying every inch of my body are sickening. Nauseating. Haunting.

They are raw.  Organic and Pure.

I need to write.  I have to write.  I cannot sleep.

I am so scared.

Maybe tomorrow I will feel better.  Maybe I will have answers.  Solutions.

I don’t want to feel this way.  It is too much to handle.

So scared.

It turns out my back pain is back.  Flank pain.  Kidneys.  It was bad today.

There are other signs of an active infection.  Shit.  

Is it the same infection?  Is my body rejecting the antibiotics I am still on?  Will I have sepsis again?

Oh my God.

So scared.

What is happening?

I was told by another doctor today that I am very lucky that I survived sepsis.  That I am too young to die.  That this is serious stuff.

That is some scary shit to hear.  I couldn’t find my humor today, I don’t know where it went.

But I was ready to make this the past.  I survived.  I was done blogging about it.  I was ready to move on.

Now what?  Another infection?  Are you kidding me?

I called the doctor on call this evening.  She was concerned.  I have to wait until tomorrow for more tests. More antibiotics.  Go to the ER tonight if things get worse, she said.

OMG, I am scared.  Should I be there right now?  Am I going to die tonight if I don’t go to the hospital?

I cannot sleep.

Who do I trust?  Not my body.  Not my doctor.  What do I do?

They say my body is compromised & suppressed.  They don’t know what caused me to be so sick.  The years of steroid treatments?  Having no spleen?  Both?

The very drugs that allow me to function on a daily basis may be killing me.

I am to wait until the morning to go for blood work at the hospital.  Another set of antibiotics will be waiting for me until they figure out this new infection.  Then I am to go home and wait for results.

But tomorrow we purchase our new car.  At 9:30 am, in a dealership one hour away. I am not canceling.  I am going.  I am signing the papers with my husband.  We have planned this, we have been waiting to pick it up.  I am not canceling.

I will go to the hospital on the way back.

Will I regret this?  I don’t know.

I am scared.  And I am angry.

I cannot sleep.

These feelings are so frightening.  They are foreign to me.  To be scared for my life is just not right.

Maybe by the time you read this, I will have more answers.

Please do not worry, I just needed to express my feelings right here right now.

I am in no way seeking sympathy and for this reason the comment section will be closed.

I will update as I hear more.

So scared.

Dear Body of Mine

morguefiles

morguefiles

Dear Body of Mine:

You sure are a lemon.

I have known this for a long time but damn girl, you just keep on breaking down on me as I coast along trying to live my life the best I can.

Some brickhouse you are.

After all I do for you.  I take all the medications you require, I allow you to rest a lot  and I keep you hydrated, mostly.  Ok, so I stuff you with delicious food and libations, maybe more than I should, but I do it out of love (for you and the food).

Better  to have a full tank than keeping you on empty which is not good for the engine, anyway.

Why do you keep betraying me?  What have I ever done to you?  I am getting so I really cannot trust you.  I am afraid to rely on you to keep me safe.

This past weekend you allowed an infection to enter my bloodstream.

 WTF?

We have talked about this and I though I made it clear that I am not to get infections and definitely NEVER in my blood.

I know I cannot blame it all on you.  I realize that without a spleen you have to work even harder to keep me alive.  But as I recall, it was you who rejected my spleen and allowed it to attack my platelets.  It is  called an autoimmune response.  Whatever the name, it is not very nice.

You did warn me on Friday by giving me excruciating back pain and making me shiver with an awful case of chills.  I’ll give you that.  I suppose the fever was a pretty clear warning that things were going downhill fast.  I thank you for that but why did you allow the infection to go sepsis in the first place?

You landed me in the ER having to have a spinal tap.  That was not fun was it?  It was a huge needle and it had to go into my back which was already in pain.  That was definitely cruel.

Not to mention the oceans of blood taken from my veins to help figure out what was happening.  Oh, and the hospital food.  How could you make me have to look at it, smell it and taste it?  For that, it may take even longer than expected, to forgive you.

I am home now.  You are behaving at the moment and letting me rest.  I am exhausted and weak.

I have a lot to do, like getting my son launched in his new apartment in college and getting my daughter ready for her freshmen year.  Not to mention enjoy the rest of summer.

So I beg you, body of mine, to step it up –ASAP!

Grow some cojones, will ya?

Do what you were hired to do and fight the invaders trying to hurt me.  Remember that you are my security team.  My first line of defense.

As angry as I am at you for screwing up big time, I cannot help but feel somewhat grateful.    The fact that I am alive means that you responded as you should have to the antibiotics and allowed me to live.  For that, I thank  you.

But the real thanks goes to God for giving me another chance.

I thank Him for blessing me and letting me be here for my family.

I thank Him for giving me the opportunity to continue to enjoy life and be the silly happy person I am.

Respectfully Angry at You,

Me

Health Update: I was closer to death than I realized

Hello my great friends,

I am still at the hospital and the mystery infection has been solved.  First they thought I had meningitis so they did a spinal tap.  Then they thought I had a tick-borne infection but were waiting for results of many tests.  Then they checked my kidneys via an ultrasound.

After massive headaches, back pain and fevers, they have determined that a bacterial infection made it to my blood stream and was going septic.  Had I not come to the emergency room when I did, the doctor said I would have died, particularly because I have no spleen.

Wow, how do you process that kind of information?

She told me how glad she was that I came in when I did.

So am I.

Maybe they will release me tomorrow if all blood work comes back ok.  The good news is that my fever is gone.

BTW, I did enjoy my vacation immensely and luckily didn’t get sick until this Friday.

Off to sleep off more of my morphine and to feel grateful that I am alive.

xo Brickhouse

 

 

 

 

From Mussels to Morphine

My weeklong vacation went something like this:

From:
Beach chairs to back aches
Jugs of sangria to bags of saline

S’mores to sores
Crispy chips to numbing chills

Sandy dunes to swelling joints
Family time to fever spikes

Hermit crabs to headaches
Savory lobster rolls to spinal taps

Ultraviolet to ultrasound
Inventions to infections

Exotics to antibiotics
Enchanting room to Emergency room

And hospital rooms, where I write this from.

I am in good hands and feeling better. They want to keep me for one more night stay at which point I will run, far, far away.