Saturday, May 17, 2014

MS (or not) Updates.

So..... last Friday I had my MRI. 

It was God-awful.  Like I knew it wasn't going to be fun or anything, but I mean it was REALLY not fun.  Putting your head in a cage and being strapped down for 45 minutes with constant banging and rattling is incredibly unpleasant.  It makes me sad to think kids have to do that... I hope they sedate them?

Anyways very quickly after the MRI I got a phone call from my doc saying "it was clear!"  HALLELUJAH!  It was a celebratory weekend because I didn't know any better.  We didn't know any better.

Monday morning I woke up with a fever and severe bladder pain.  I mean... severe.  I had to call my mom and ask her to take me to the doctor.  I was in "retention mode" again.  (retaining urine).  I couldn't sit up, so I laid on the table and my mom just stood over me and cried, petting my hair.  I was vomiting and every time I'd start to heave she'd get all freaked out.  I think I told her a thousand times to leave the room.  She'd leave for a minute and come back in.  I was getting so annoyed.  And then I reminded myself how hard it must be to see your child in pain.  No matter the age; or that the child has 4 children of her own and a husband.  It just sucks.  I cried with her.

The doctor came in and immediately cathed me;  ready for this?  They got over a 860 ml of urine out of me.  Where it all was?  I have no idea.  It had built up for two days.  The nurse and doctor both said, "I have no idea how you walked in here."  After I had been drained, I felt better.  Still crappy... but better.  My mom asked, "So I thought her MRI was normal?  Why is this still happening?" 

It turns out one MRI means nothing.  I felt a drop in my gut.

Apparently you can go years and years without lesions on your MRI and STILL have MS symptoms, such as urinary retention....  So the next step is meeting with neuro and getting an MRI with contrast.  Ugh.

Thursday, during the kids nap time, my vision went out in my left eye.  Again.  It's always my left eye.  It was white static; kind of like lightening.  I knew I'd need to tell the doctors, but strangely enough, I wasn't all panicky.  I just closed both eyes and waited it out.   Thankfully the kids were sleeping and I was able to lie down.  Tears squeezed out both eyes, as I waited for the "static" to subside, but as I've been reminded several times over the past few weeks, its good to cry.

Yesterday (Friday) we saw the urologist (the good one- who I love.. not "Dr. Mengle" from the  Mayo Clinic)  and he kind of gave it to us (Ryan was there) straight.  He said something along the lines of "Honestly, at your age, with this kind of retention, and your vision issue, MS is what's on my radar."   For one I didn't  cry. Ha! But Ryan did... and it felt really funny to tell him it was okay.  So much strangeness going on these days!

In the car, I asked him why he was so upset... (dumb question... I mean, its upsetting to be told your wife more than likely has the beginning stages of MS).  And he said, "Ash it's a degenerative disease.  This is going to get worse."   I know that.  I knew that the whole time.  But the numbness that's taking over my thumbs (oh yeah, did I mention that pleasant new one?  My left thumb is numb...) must be spreading.  Because while I'm upset, scared, angry, etc.  I'm also tired.   My head hurts from the exhaustion of thinking and crying and grieving.  And I don't even have a real diagnosis yet.  Ha!  I'm just so tired...worn.

I feel so weak. Unworthy of my kids love; as STUPID and self loathing as that sounds... its how I feel and I have the right to write it because its my blog.  They're too good for this craptastic of a situation.  And that's a fact.

So that's where we're at today.

Next week I go through some super pleasant urodynamic stuff...  the following week is all neuro.

When all is said and done, if I'm still retaining urine this badly by the end of June, I might have a device put in that stimulates my bladder to empty itself. 

My MIND.IS.SPINNING.  How did this happen so fast?

I have no idea.

My brother called to tell me his good friend has MS and although he's in a wheelchair, he functions really well.  I can't get that thought out of my head.


Yet as the left side of my body (it seems as though its my left side) continues to do wacko things, I can't push that thought completely aside.  It's hitting too close to home right now.

Anyways, I really, REALLY appreciated your kind messages- one of my favorites started, "I am sending you prayers- NOT pity." 

I'm hesitant to blog at all about this because I don't want anything to change;  I don't want it to be "oh that poor girl who can't pee."  It's still me.  I'm still here.  I have enough pitiful thoughts for myself; please don't have any for me.  Seriously.  That's what I can't deal with; my mom and dad- their looks, their calls.  The hurt it's causing them.  And Ryan.

That's my weekly update :)

 Tomorrow I want to blog about my beautiful children;  maybe we'll go to the beach.  A beach day seems much needed right now :)

1 comment:

Tina said...

I am so sorry you are going through all of his, prayers coming your way. But what I see in you, although I have never met you, is a strong, determined woman, and I hope to learn from you.

You see, I was once told by a Doctor, "what you are going through, sounds like the very beginning stages of MS". You need to see neuro. I went home and privately, cried my eyes out!! I had one MRI and got the all clear. I was ecstatic!

I still get the strangest things happen, a numbness on the left side of my head, tingling, I had 2 episodes that sent me to the ER....stroke symptoms, my entire left side went numb, eventually speech so slurred I just stopped talking...negative ct scan. Hospitalized for three days. The other time, my left arm woke me up in the middle of he night, I went to roll over and to my horror, my arm was orally paralyzed!! diagnosis.

A times I feel like my body is attacking itself. Other times, I feel great. Wondering if you go through the same.

Back to you, stay strong and keep going!! <3

Tina K.