Wednesday, May 14, 2014

And then there was.........................

Life in The Osero household is ALWAYS interesting!!  It amazing me how much can change in a matter of a couple of weeks.

Danny once again was on a round of Antibiotics due to another UTI, poor bug.  Other then that, Danny has really been pretty good.  The allergies are starting to give him some grief, but nothing we can't handle.  It's always a bittersweet with the allergies....makes Danny miserable, but means things are growing and Spring is upon us.  The weather is almost up to normal temps for this time of year, we've seen some 60 and even a 70 here n there.  YAY!!  The grass is green and growing like mad along with all the flowers, trees and bushes.  The pool is open and ready to swim in.  It's such a pretty time of the year.  We've definitely gotten our fair share of rain, OMG!!  The retention ponds are over flowing and there are flash flood warnings out pretty much every time it rains due to everything being overly full and saturated already.
We are still looking to fill some nursing positions.  I've made a flyer to advertise nursing needed for Danny.  If you know anyone that maybe interested please send them our way.  I've contacted an agency to see what/if they can help us out in the time being.  Can't say I'm impressed with bring in agency on, but who knows I may be pleasantly surprised.

Avrianna is doing great!  6th grade is ending in a few week and I know she is going to be very emotional about it.  She absolutely loved 6th grade.....what a change in then the start of the year.  The fear of the unknown .... she was NOT looking forward to 6th grade and had a nice large attitude about it.  I'm so glad she's done amazing academically and socially this year.  I'd have to say it's probably her best year thus far all around.  I'm so proud of her....she's really growing up to be an amazing young lady.  I so can't wait to see what she grows up to be.
This year it's been dive meets a plenty for Ms Av.  She's doing fantastic.....WAY TO GO AV!!  She's already done 3 meets this year, she has a Regional meet in June and if she qualifies at that meet she will go to a Zone Meet in July.  Thankfully both meets are in Milwaukee so it's relatively close and a place she's familiar with the boards/platforms.  Then if she qualifies at Zones she will go onto Nationals which is held in Tennessee and last 4 days.  WOW!
This last meet she competed for the first time on the platforms.  She dove all her dives on the 5 meter platform.  She did great!  Only practicing once a week (I drive her down the milwaukee to practice) for 4 weeks and then competing against 8 other great divers she placed 4th.  Keep up the great work!!  On the 3M springboard she place 5th out of 11 divers and on the 1M springboard she placed 3rd out of 15 divers.  Watch out Olypmics Av is on her way :)  Here is a video of her dives from the last meet.
Last week I felt a tingly numb sensation that started in my left hip/bum area.  I was starting to feel "off" with each and everyday~ the numb tingling sensitivity feelings started to spread like wild fire.
Shit ~ANOTHER relapse, this makes 4 so far this year.  
Unfortunately this relapse as escalated into something more then the "normal" MS symptoms that I get.  In a weeks time I went from the feeling of numbness and tingling which is very normal for me, to not being about to walk and now it's moving into my hands.  I'm finding very hard to hold onto things and write.  I've never lost function before it's always been a headache, vision, and sensitivity issues.  This is the worst relapse I've ever had and it's scary the hell out of me.  It's AMAZING how fast my body is slipping away.  With everyday it getting worse in worse I've decided to throw in the towel, bow my head and start meds back up.  I'm really left with no other options.  What I've been doing isn't enough.  I am doing a 3 day IV infusion of steroids with the possibility of 5 days or switching to a different med called "ACTHAR".  Well see how things go.  I am now labeled as home bound which allows me to have therapist (PT and OT) come into the home to help me instead of me having to go to them.  That will be so much more convenient for us as now we are down to just Dan driving, meaning he's not only having to do his normal running around all over but now he has to get Av to all her things and me to mine :(  God forbid this loss of leg function is permanent (as I'm finding MS is taking more then it's giving) we'll have to look at adapting our vehicles for me to drive them, but my hope is with time I'll be back to somewhat of a "normal" state.  I also am going to be starting Copaxone injections as a disease modifying drug.  I had been on this med before when I was first dx and I was on it for about 1.5 yrs.  I had told my neuro about my concerns with it not working back then and why should I waste my time starting a med that didn't work before.  She went through all my MRI's from that time period and found that I only got 1 very small lesion on my brain while I was on it.  I guess it was working more then I had thought.  Even though I was still having mild symptoms the disease wasn't progressing while on it.  So seeing it's my only option right now, I will go back on it.  So much for swim suits and tanks tops as at the injection sites it leaves serious red, hot welts and bruising.  Well I guess now I can't even get in the pool ~ so here goes nothing.
First day of Infusion steriods
 My new means of transportation ~ a walker n wheelchairs :(  
Just me ~ med port walker and all, but I'm alive and MS can bring it on as it chose the wrong women to mess with 

 Yesterday was a very difficult day for me emotionally.  Overwhelmed was on understatement.  Feeling lost, scared, and out of control.  I'm not one that does will with not being in control and right now I'm far from it, being told I HAVE to do something ~ I'm not too cool about either.  I really didn't want to go back on meds, but MS isn't playing fair and I'm out of options.  I NEED to calm this down.  I'm scared not only what the meds will do, but also with what my body isn't able to do now, and I'm terrified that I can't be what I need to be for my family.  I'm not used to needing or asking for help, I'm the one helping ~ when I fell 2 days ago just getting my pants on and yesterday needing Dan to help dress me.....well I'm feeling shattered and feel as I've hit an all time low.  I don't cry often, but yesterday I just couldn't help the tears fall.  To feel so helpless and out of my comfort with the tears just falling, well it's unsettling.  Prayers are much appreciated.  I will get through this, it's not going to be easy, I'm going to have to do some serious sole searching, and except more help.  Once again Life altering and I'll adapt to whatever gets thrown my way.  It's just a blow right now.  Hard to except and hard to believe.  I've always known what MS can do and what I should expect but I never could have believed that it would happen to me.  
What a cliche' isn't?!?'ll never happen to me
Until it does!!

Mother's Day was pretty relaxing.  There wasn't much I could do.  I got out on the patio to sit in the sun and read a book.  So peaceful :)  We went over to my mom's for dinner to not only celebrate Mother's day but also my nephew Tylers 12th bday and my Uncle Tom's bday too.  My niece was there with Baby E and I got some serious baby fix time.  He's doing AMAZING!  He even managed to pee, poop, and throw up on me in a matter of 20's a tryfecta baby!!
I got beautiful colorful daisies 
And Gluten free Delicious cupcakes.  How awesome is that!  Don't they look good 

1 comment:

Marie said...

I'm so sorry to hear about your setback. You are such an amazing person and doing so many amazing things. My family and I will all be praying for you. You are overdue for some good health news - I hope the new meds beat the MS back and get you are feeling much better soon!