Thursday, June 5, 2014

accepting what is and just being real.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.

That prayer basically sums up everything.  Whoever wrote it deserves some kind of major award.  They've captured the voices of millions.

I can barely type.  That's the truth.  My fingers ache and my left wrist spasms every few minutes.  

I catheterize myself daily; as I've lost most sensation to use the bathroom.

I'm struggling with depression.

I have fatigue like I can barely describe.  It's debilitating.  It's knocking me out.  I have never experienced anything like it.

 My left side spasms (specifically my back) and becomes painful at 2 AM, which has sent me to the ER about 6 times since January.  Each time, I thought surely, this is a kidney stone or something to do with my kidney.  I think I'm just coming to terms with the fact that this entire time- every ache- every bladder issue- everything- has been MS.  

I've lost a lot of fight. I'm tired of chasing doctors and answers.

Yesterday my urologist called (my specialist- who is supposed to be on MY team.. MY side) and said my urine specimen had been contaminated and therefore I needed to go to the ER to have everything worked up again.  All afternoon yesterday, it was a battle back and forth- "But can I just make an appointment and come in?  I can't afford to go to the ER one more time!"  

"We're sorry- no appointments."  


So my options were this:  Wait until next week to see my urologist, risking that the infection spread into my kidneys and do God knows what else kind of damage.  Or going into the ER for the 2nd time this week.   I chose the ER.  Stupid, stupid me.

The infection has been managed.  I had IV antibiotics.  I also had a doctor come in and talk to me about how he won't prescribe me narcotics anymore because of my history.  Ha.  

Ryan was there and all I could do was look at him and cry.  

I know ER docs aren't "my" doctors, but the shame... oh my GOD the shame.  After he left the room, I lost it.

"Ryan I have full bottles of that stupid crap at home- that's the ER's answer to everything- and I don't take them because they make me itch and unable to drive.  And they seriously think I'm coming in here to get drugs????  I cath myself everyday, have blood in my urine, back/kidney spasms and my urologist TELLS me to come into the ER and I get a lecture about narcotic use?  Narcotics that I'm not even using???"  I was furious.

The nurse handed me my discharge papers with a "non narcotic" something... and I ripped them up and threw them away in the trash outside the ER. 

Ryan texted me this morning to see how things were..

In all honesty?  I'm ticked.  I'm mad that this is happening.  I'm mad that I have specialists who are supposed to be putting this puzzle together that refer me to the ER because they can't fit me into their schedule.  I'm mad because I am dead tired and I don't have a definitive reason why.  I'm mad because my kids want me to play and I can't get off the couch.  I'm mad because I'm thirty years old and my body hurts and spasms, and I can't pee on my own. I'm embarrassed because I have to call my mother daily to ask her to help me drive, or get the kids. I'm upset because I can't get my hands to work, to buckle my kids shoes. I'm scared because my entire left leg went out on me a couple of weeks ago while trying to get Stella into her car seat. I'm annoyed and terrified that my left eye goes in and out; static and black.  

I'm scared.  I'm angry.

That's how I feel.

That's what me, "being real" is right now.

Will I get through this?  Yeah.

But today, I'm mad.  And just let me be mad.

No messages of pity or "you can do it," blah, blah, blah.  

I just wanted to update with what's been going on.  

The serenity prayer is on repeat in my head.  I do feel blessed.  I do know that ultimately all this will pass and I'll come to terms with it. 

 But right now, let me hurt, grieve with what I've lost and be mad.


Becky M said...

Nothing fair about this. Fear, anger--perfectly understandable. Frustration, too, with medical people who are seeing a case and not the person. We will be mad along with you.

Joy Bukowski said...

GGGGGGGGGGGrrrrrrrrrrrrrrrrrr!! I mean like GGrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!
Those impersonal jerks. I am mad for you with you and crying too but seriously about to go up in there and start bi*&$%$^ slapping some folks. What the ..?????? ggggrrrrrr! Anti-biotics? Didn't the specialist say no more!?!?!!!!

Yvette Banner said...

Read this, sorry so long..... A psychologist walked around a room while teaching stress management to an audience. As she raised a glass of water, everyone expected they'd be asked the "half empty or half full" question. Instead, with a smile on her face, she enquired: "How heavy is this glass of water?"Answers called out ranged from 8 oz. to 20 oz.She replied, "The absolute weight doesn't matter. It depends on how long I hold it. If I hold it for a minute, it's not a problem. If I hold it for an hour, I'll have an ache in my arm. If I hold it for a day, my arm will feel numb and paralyzed. In each case, the weight of the glass doesn't change, but the longer I hold it, the heavier it becomes." She continued, "The stresses and worries in life are like that glass of water. Think about them for a while and nothing happens. Think about them a bit longer and they begin to hurt. And if you think about them all day long, you will feel paralyzed – incapable of doing anything."Remember to put the glass down.