Result Musings

The day before my 36th birthday this past week I was back at my neurologists office to go over some results.  It's summer so the kids were in tow.

Here is the visit briefing.

Got to office blessedly on time despite ridiculous traffic.  Sat kids down and told them to BEHAVE!  Trent proceeds to drop raspberries all over the white tile floor in the waiting room.  ''Mommmmmmy! I drop a berries!''

Luckily, I'd brought some new toys to distract the kids.  This game is GOLD, the original hand held game and my kids think I hung the moon with this.  Note: Old Navy has these for $2 a piece right now, great game for the car or plane on summer vacay.

The nurse put us in a room pretty quickly.  And we waited and waited and waited.  Then Dr. Alahi walked in and Nora busts out with ''We waited for you a really long time!''  I think he might of been taken back by her precocious outburst.  Oops.

Ummm, yeah back to the reason I'm there.  And I quote, ''So the EEG shows that you were sleep deprived.  It's pretty easy to fall asleep in a test like this.  And that you have quite a bit of anxiety running across your brain.''

Let me explain my mood towards medical testing.  I. Don't. Like. It.  I don't sleep the night before so yeah, that sleep deprivation is an honest assessment of my brain that morning.  And WHO wouldn't be a little nervous with a swimmers cap on their head that has 16 electrodes attached to the scalp my glue.  By the way, the glue gives you a fabulous after doo reminiscent of Cameron Diaz in ''There's Something About Mary''.

Good news, the damage spots are not impairing communications across my cerebellum.

''Your MRI looks pretty much the same as a year ago, very little growth on any of the damage spots. So this is really good news.  At this point, I think we've determined that the spots are most likely caused by silent migraines.''

Silent migraines come with no pain, just auras and visual disturbance.  This is the kind I get, but they are doing some damage on my brain.

If they wanted to see anxiety combining the EEG and the MRI would have been quite amusing.  It was torturous tube MRI that causes me sweats just looking at the machine.

This is not me, but a great example of the Man in the Iron Mask cage that goes around your head.  Complete with
immobilizing foam ear pads, great for anyone with claustrophobia.  Then, THEN you get stuffed in the tube.(see below)

Again, not me.  That little leg wedge to make you more comfortable, complete lie.  LIE.
The try to con you into thinking this is some sort of crazy spa relaxation exercise.

Ok.  Now to address this crazy burning on my arms that gets more intense with higher temps.  His eyebrows flew up folks.  ''Wow, that's really something we see with our MS patients.  The increase in symptoms with the heat index.  We can certainly redo the spinal tap to make sure they didn't mess up results in Atlanta.''  (I like that he remembers where I moved from)

I was conflicted on this idea.  Ultimately, I don't think all the tests I went through in Atlanta could be wrong or been botched in the lab.  The burning and itching arms is also seen in fibromyalgia so I'm pretty comfortable with that idea.

''It is seen in fibro patients as well and Dr. Reuda did list that as a developing auto-immune.  Fibromyalgia can cause damage to your nerve endings and heat is like holding a match to them.  I do agree that this looks like fibro but wanted to give you the option of a second test.  Sort of like getting a second opinion.  Now, if these symptoms get worse or intensify you call me immediately and we will get you in for the test."

I think I thanked him for the confidence.  I've been released back to the Rheumo for my follow up appt. this fall, barring any ridiculous symptoms.

No more doctors for now, it feels incredible to say that after over a year of specialists, blood draws, and days of testing.

And as Dr. Alahi left he said, 'Bye Trent.  Bye Nora.  Be good for mom.'  

Lying Here Looking Up

It's not every day you get to view your world from a horizontal position.

All. Day. Long.

Yesterday was a challenge.  It was spinal tap day, up early and to the hospital for what will hopefully be the LAST major medical test.

I found myself sublimely calm about this one, even Rich admitted that yesterday was the least stressful and emotionally taxing  of the whole diagnosis ordeal.  And by the way, he talked to a guy at work who's daughter in law was diagnosed with MS in 3 hours at Piedmont Hospital.....ummm, I've been doing this for almost 5 months.  But at least I've learned some patience during that time.

All the doctors were female again which I tend to find comforting. So, I spent 2 hrs hooked up to a EKG and IV fluids to monitor me beforehand.

The procedure was in an xray room that I'm pretty sure I had my HSG procedure in almost exactly 6 yrs ago.  I'll let you all look up HSG if you are curious what that is.  Once again being in the same room, oddly comforting.

I had to lay on my stomach with my right leg out to make a '4', supposedly this opens the spinal gaps.  Dr. Wendy, the physicians assistant walked me through the whole thing.  REALLY cold betadine rubbed on my back three times.  Bee sting like prick and burn with the numbing meds.  I jumped both times she stabbed me.

Now time for the needle.  Pressure, pressure and a small pop.  ''We are in, you did great''.  Take an xray of the needle placement.

Ok, we are going to tilt the table to help the spinal fluid flow out.  Mechanical sounds and the table tilts to about 30 degrees.   Dr. Wendy takes the first 2 cc sample...drip, drip into a little vial.

I lay there thinking that I have so many people watching over me during this.  If this is MS, I have two aunts looking down on me, protecting me and blessing my journey.  I know I have grandparents that are doing the same.  I am blessed.

Procedure all done. ....16 cc's of spinal fluid.  Rich tells me this is just short of a tablespoon.  My math genius had to do the conversion.  (Smile)

Lay on my back for another two hours to make sure I don't have excess bleeding.  If I'm vertical too much in the next 24 hrs I could get a spinal headache, of which no meds will touch the pain of.  Sounds awesome.  I'm staying still, laying like broccoli, but Richard Gere is no where around....not the same. (If you don't get the reference, you aren't a chick)

Head home to become mommy immobilized for the rest of the day.  Rich has to go to work for a telecon with the people in California.

Hmmmm.  So here I am.  Mommy on the floor.  Ready to test how well behaved my children really are, how strongly are they under my thumb?

Lay on the toy room floor and play puzzles upside down, blocks, and cards.  Send Nora to get diapers, juice, and snacks.  Watch the kids pop all the balloons from Nora's party with a tooth pick.  Fantastic entertainment for 10 minutes.

I've been told that I can only get up for 5 minutes every hour.  Those 5 minutes better count! Bathroom, drink, snack....assume the plank position again.  This would be easier if I actually FELT sick. 

Should I count the splotches on my ceiling?  Nah, can't be as fun as counting ceiling tiles in the MRI room.

Lay on our bed and watch movie with Nora while Trent naps.  Doze in and out since nervousness woke me up at 4am.  At this point, I'm pretty sure the achiness is from being horizontal all day and not moving.  Ironic, since I normally hurt from moving around too much.

Oh look, wow that fan is dusty.  I need to do something.  Damn, the internet is down.   This has got to be a sanity check.  It sounded sort of fun at first, a day off.  Now it's just torture.

Lay on the bean bag in the toy room and watch cartoons, do lacing cards and play airplanes with Trent.  Talk to friends and family on my cellphone.  Intermittently worry about the disaster my house is becoming in one day!  Then forget about that when Trent snuggles in, ahhh content.

Daddy's home with dinner!  He feeds the kids.  Daddy has to do dishes.  Mommy to the bedroom to lay on much comfy bed.  Internet is back!  Netflix to the rescue of my boredom.  Daddy, plays with kids, baths them, and has to put them to bed.  This is actually painful for me to watch and listen too, I want to help!!!

Go to sleep, tomorrow you get to walk around again.

And here I am this morning, up and sore, ordered to ''take it easy''.  Today, I'm thankful to be mommy again.  Blessed that I can help my kids and hold them.

Thankfully Reminded

I apologize for the blog taking a turn into my diagnosis and thoughts for a while, but I need to process all of this.

This week, I am reminded to be thankful. 

Thankful that whatever this is, while serious is not eminently life threatening.  I am praying for a young mother and friend in my home town.  She is 5 mths pregnant with her third child and was just diagnosed with breast cancer.  My battle feels small next to the mountain she will have to climb.

Thankful for two kiddos that understand mommy is tired and needs to rest.  Snuggled against me and half on top of me they watched a movie in our bedroom while mommy dozed.  There is something so calming about your kiddos snuggled into you on a windy day.

Thankful for a night out with old friends filled with laughter before we leave on this grand adventure.  They helped me remember all the crazy things we have done in the last 11 years.

Thankful for modern medicine.  Even though this is scary at times we a blessed to be in a country where I can be treated.

I am mostly thankful for my husband, family and friends that keep encouraging me to move forward.  My sister says, ''you are a priority, do not forget that''.  So easy to forget when raising children, and so easy to think of it as being selfish.  Lesson, I need to chose when to be selfish for my health, rest, take meds, so I can be unselfish and giving of myself  with renewed energy and better health.

These Hands

Lately, I've been thinking a lot about the scene in Neverending Story when the big rock creature starts talking....''these hands, these hands, used to be so strong.''  He has this confusion about how they could have failed him.

I understand this.

For a couple years now, I've noticed a clumsiness when grabbing things.  Either I miss judge a distance and end up knocking things over or I go to put something down my hands seem to let go before I want to.  Many, many cups of coffee have been spilled and/or broken in this way.  I always credited it with sleep deprivation after having Trent almost two years ago, but that's not such an issue these days.

Then came me being tired every afternoon,  no matter how much sleep I get.

After that was the depression and anxiety of last year which came out of no where.

And now,  there is a weakness in my legs and arms.  I can only describe it as the feeling after a really big workout when muscle fatigue has set in.  If I vacuum, my biceps feel it, if I go up the stairs my thighs and calves are aching at the top.

Something is definitely going on.  We have multiple sclerosis(MS) on both sides of the family so if I were a betting person that is where I'd place my money.

Oddly, we are calm about this.