Thursday, March 27, 2014

Spring Break

Well Spring Break definitely didn't go as planned for us, but we are together and that's whats important.  Part of me is sad that we didn't go to Texas as I was looking forward to warmer weather and sight seeing.  But the other part is so glad we didn't go because it would have been a very stressful "vacation".  It's nice to not have to be crazy busy....On Monday I had thought to myself what do we have in store for us today, and then I realized we were suppose to be on vacation so there is NOTHING planned for the day.  No Dr appts, no therapies, no NOTHING :)
For the most part it's been pretty lazy around here.  Danny's still trying to recover and heal from his cold/virus thing.  He's been sleeping ALOT.  We are lucky if we see the whites of his eyes for more then 3-4 hrs a day.  As long as he is getting better, that's ok.  He didn't need to be inpatient so I count my blessings and lucky stars.
Avrianna had a sleepover on Sunday nite, But other then that you can find her watching some tv show or movie.  Now that she is home she was excited that she was going to be able to Milwaukee for Dive practice twice this week.  They made for long evenings for her as they left around 345 and didn't return till about 930.  She doesn't care she loves it!
I have been somewhat of a couch potato.  Reading my book and watching movies.  This 3.5 week headache is really taking a toll on my ambition.  Sucks, but whatcha going to do.
Dan is .... well Dan.  He's busy all the time, there is always something for him to do.  Seeing we didn't go to TX he now can finish up the additions to the Oshkosh Laundry.  He is adding more dryers to the store.  About 2 weeks ago he added more washers there also.  The store should be plum full with machines.  It's nice to see how busy that place is ALL THE TIME.  He has managed to find himself on the couch to watch a movie here n there so that in it self is a vacation for him.
Tomorrow early AM I am off to Wisconsin Dells to the Kalahari indoor Water and Theme park with Avrianna and my nephew Tyler.  They should have a blast!  I am going to bring a book find a chair and relax.  We are going to spend the night in the dells and then do some sight seeing and shopping on Saturday.  So Dan is on Danny duty for the evening...wish them luck.
Thanks for checking in on us.  I hope you all had a wonderful Spring Break!  Back to reality on Monday :)

Wednesday, March 26, 2014

Why does EVERYTHING have to be so damn difficult?

My head is just spinning....
on top of aching, as I've had a headache that has been going on for 3.5 weeks straight now.  When you are in pain for that long it starts to take a toll.  Nothing is working :(  I go to bed with a headache, wake up with a headache, and its there ALL DAY.  It's exhausting and frustrating to say the least.
I have been reading my new book Wahl's Protocol about changing my diet to improve my over all health and wellness.  I have to say there are a few good points in there, but nothing I really didn't know already from my functional medicine Dr....stay away from gluten, dairy, processed food, and sugars.  Stick with the hunter-gatherer time period of food.  Whole raw foods off the land ~ nuts, berries, fruits, veggies, seeds, and protein.  In the book she gives a good idea of how much of each food to eat and what food gives you what vitamins.  Unlike the functional medicine side which does ALOT of supplements, Dr Wahls gives you the tools to show you what foods can do the same instead of popping 20+ supplements 2-3 times a day.  Which is very exciting.  In the book there are 3 different "diets" to chose from...there is a basic, moderate, and then the extreme (which is suppose to be the best therapeutically).  I pretty much was already doing the basic so I'm going to go with the moderate one.  It still isn't going to be easy, but I have more options.   If I'm going to make this work I have to be honest with myself on what I can do.  I'm flying solo on this as my family isn't going to go without their "comfort" foods so that alone has me on a losing battle.  It's not that they don't support me, it's just that they are not going to be changing with me.  It'll be hard but I'm going to give it my best shot. It's never easy to hear do want a piece of cheese, how bout some garlic bread with that, should we stop for ice cream....AHhhhhh!! It has gotten alil easier now that I have found some substitutes that I CAN HAVE and we have some local restaurants that have gluten free menus.  I'm transitioning so I might "slip" or "treat"  once in awhile, but not at a cost to myself believe me so they will be few and far between.
I have put my foot down as to buying all this "junk" food.  In reading my book it just reminds me of the higher chances Avrianna could be in my same shoes, down the road and I'm not going to contribute to that.  So I'll be buying more fruits n veggies, Gluten free snackies and foods, less processed foods, and foods without all the crap in it.  If the ingredients are things I can't even pronounce or is a mile long then it will not be in my cart!!  If Ms picky pants doesn't like them she can go without.  She really does need to eat better.  If it's not pasta of some sort, rice, pizza, pretzels, chips, crackers, full of sugars, etc she turns her nose up.  I've resorted to buying her protein bars and water (I know that they are not the best) as she doesn't eat much of meat, no nuts, once in awhile an egg.  It never used to be an issue with her but the last couple of years she's really dwindled down her menu options.  I guess alot of that has to due with me allowing her to chose what she is or isn't going to eat.....not sure how that happened as I was brought up that you ate what your mom made and you sat there till it was gone.  Some how I lost that battle, but I WILL get win it back.  We'll be eating more salads at dinner, more raw fruits n veggies, and she will eat at least 1 pc of meat, poultry, fish (whatever it may be that day).
The book also says it's a good idea to write a daily journal.  You all know I like to write, but I'm not sure if daily I would be able to do.  I write here and that to me is good enough.  I get all off my chest here...the good, the bad, and the ugly.  You are my support system and for that I am forever grateful.

My brain and spinal cord are under fire, they are being attacked my my own immune cells.   I'm hoping with the power of food I can reclaim and maintain my health.  It is proven that excessive carbs toxins, and sugars in the "modern" diet leads to inflammation and I need to cool that inflammation down that I have within my body.  I can control what I powerful is that.  But Can I really cut out the foods that I have so learned to love and depend on?  I need to restore my own health as no doctor or pill can do that for me.  Nothing out there can cure my disease it can only possibly ease my symptoms and up till now they have done nothing for me but make me sicker.
The days of me feeling good, feeling like myself, free of pain are far behind me.  The medical model has failed.  The only thing left for me to turn my life around is....ME.  The body CAN heal itself given the right tools.  I've only been fulling the fire and depriving my already tired and sick body of what it needs with all the crap, that they call food, that is out in the markets today.  I'm going to make healthier choices in hopes to turn off the war that is going on inside me.  I can't live like this anymore, day in and day out in pain, weak, and tired.  THIS IS NOT ME!!  The old saying You are what you eat....believe it or not, it is so true.
I can no longer put on this mask and say "I'm OK".   I'm not OK!!  I'm getting sicker, weaker, and the pain is just unbearable most days.  I can't go on any longer thinking that MS doesn't have a hold on's a HUGE part of my life now.  I am so disappointed and frustrated.  I need to take action.  I can't sit back and let MS win the war.  I'm not ready to give up.  I'm not ready to BE MS.  I am going to fight like a girl and try my damnest to get MY LIFE back.  I don't want to settle.  I have too much at stake ~ 2 wonderful kids that need their mom to be ALL THAT SHE CAN BE.  They are my strength and my drive.  Everyone that has MS has a story and I'm not ready for my story to end.  I have way too many chapters that I want to write about.  In the beginning I had never thought in my wildest of nightmares that these "episodes" would lead to MS.  I had just chalked it up to being a full time parent to a preemie with a blood disorder and a severely handicapped child that has all the stressers that come with that, along with all the other distractions of life, but as I know now it was the ticking time bomb Multiple Sclerosis.  Man I wish I would have listened to my body, but no use crying over spilled milk.  It is what it is....and I need to start thinking about ME, taking care of ME, so I can be around for many more years to come.  Hopefully pain free or as much as possible, push off being in a wheelchair as long as I can, keep my eye sight, and remain cognitive.
MS may be strong ......But NOT AS strong as ME!!!

Thursday, March 20, 2014

And So it Will Be

 Danny's runner, Annie, ran in her first 2014 race in honor of Danny this last weekend.  We are SO PROUD of Annie!  She ran a PR (personal best) at this race.  WOW ~ how cool that on the first race she is already breaking records.  She's AMAZING!  We are so blessed that our paths crossed and she is apart of Danny's Life.  Run Annie Run ... we will be there cheering you on ALL THE WAY!

 Yay ~ My book came in the mail.  I can't wait to dive in and get some ideas n direction to help control my MS with diet.  I am so glad I am done with the steroids, now sit and wait to see if they helped.  As of yet, I haven't seen an improvement and might even say I'm worse as I have had a headache now for over 2 weeks right along with all the same relapse symptoms I've had.  Boy I hope this book has some good insight.

Happy St Patrick's Day From The Osero's Kiddos and Fur Babies

Yes it snowed again.  Thankfully most of the snow has been melting around here.  You can actually see more grass then snow now....Maybe
Spring will is be here soon.  This next week its suppose to still be below normal temps.  We are going to be seeing 20-30 instead of the 40's we should be seeing :(

We were ready for our Spring Break trip to San Antonio TX, all that was left was to put all the piles of stuff, that we had laying around the house, into the RV and then we were OFF.  Well that was the plan until I happened to check the forecast one more time and found the weather to be NOT in our favor with rain and cold temps the whole week.  UGH!!!  So Dan and I decided to change our plans and go somewhere else.  It's so nice to be able to change our plans just like that.  We looked and looked but it looked as if the front was going to go right through the southern states and bring cooler temps along with rain most of the week, sigh.  Maybe we should just keep the schedule we had....we'd sleep on it as we still had a day before we were to leave.  Yeap 1 day left and we still weren't sure where we were going, that's how we roll.  
Yesterday morning started VERY early for me as Danny must have gotten word that we were leaving for vacation as he .... 
you guessed it
After much debating we decided to cancel our trip.  So chalk another cancelled Osero vacation in the books.  So disappointing, but definitely the right decision as today Danny continues to struggle even more with this cold.  Avrianna too has had a cold.  So for Spring Break fun we get to have 2 sick kids staying home, trying to get better.  Tis the season for COLDS and there is a surplus of junk going around the community.  
Dan stopped at the wine store and now we have a stocked wine rack once again.  Just in time for our in home Spring Break fun :)  Well Mom is ALL SET!!

Like I said Danny is struggling with this "virus".   I was worried this morning as his numbers weren't bouncing back like they should after all his cares and treatments.  Thankfully we have the most awesome pediatrician and he came into the clinic on his day off to check his lil friend out.  The xrays looked clean,  labs looked good, and we were on our way home with more of a peace of mind that he just needs alil more support to get through this illness and we are doing everything right.  His system is slowing down (bring on the dysautonmia) as he's recovering so his gut is slower to digest and his GI is slower to push things out.  We've seen more dysautonomic storms today which is no surprising, but just wish he'd didn't have to go through them.  The storm look just like grand mall seizures :(  I think he's poor lil body is going through enough that he doesn't have to deal with those too. 

Just SICK :(
My hope is Av will feel better soon and we can do some fun stuff during Break.  My plan is to take her to Wisconsin Dells at one of the indoor water parks and then to the mall that is there.  We did do some pampering last nite as Av and I went and got our toes done.  
First Day of Spring.....Thinking happy thoughts.  Wising all a healthy spring.  Thanks for following us!

Friday, March 7, 2014

What's in store

Well I jinxed Danny.  I KNOW BETTER!!  We found that Danny DID indeed have ANOTHER bout of C Diff and then we found more bacteria growth in his trache in addition to his bladder.  WTH is going on here ~ Can you say petri dish!!  Once I was able to talk with Dr Kasper I was feeling alil better.  I found out that bacteria found in his trache has been there since the last culture....would have been nice to tell MOM, so I don't freak out about it.  So we are not treating his trache issues as he isn't symptomatic.  It is starting to get alil unnerving with seeing Danny having bouts of infections back to back now.  I can only hope that this time around once he's clear he will be infection free for awhile.
He's urology Ultrasound has good reports as his one stone/diverticulitis has not grown.  It will not "move" around in his kidney as it has grown within the kidney tissue so that's one thing we don't have to worry just to make sure it doesn't grow.  With the more common bouts of UTI's that Danny is continuing to have we had to get more aggressive with Cathing him and emptying his bladder more.  Even though I HATE having to cath him I have seen Danny to be more comfortable with having an empty bladder so I need to get beyond the issues I have with it, if Danny does better.  He now has a foley cath in over nite and seeing that is in for about 12-13 hours, then we only have to straight cath him once in the middle of the day.  So I guess it works out for the better as that's less cathing during the day.
I think the antibiotics and cathing are working ... he has been more alert, in less discomfort and look at this SMILE.  He definitely can turn a day around with the smile.  Look even some teeth!!  He's even helping by holding his feeding his syringe ~ Way to go!!
Maybe he'll even enjoy our up coming vacation.......Shhhhhhh he doesn't know about it yet.  I am "armed" this time around and we are bring one of our nurses along.  Poor Gail is going to be SO SICK of us after being cooped up in the RV with The Osero's for 10 days.  I'm actually looking forward to it.  We are going to be heading south to Texas to enjoy some warm weather.  Lets just hope it doesn't snow like it did last year when we went to Texas.  LOL

How Ironic....It's MS Awareness Month/Week

And I had to start BIG Dog IV Steriods to try and calm down the relapse I've found myself in.  UGH!  So it looks like I have a bumble bee on my chest.  This is how they access my med port.  A needle that goes into the port from in my chest.  The port lines run internally and is threaded up with the vein right by my heart.  Easy access usually one poke and it has a great blood return.  YAY!
I have to go into the hospital outpatient clinic for about 1.5 for 5 days to get my infusion. 

My meds......holy hell no wonder my system is all over the place  1000mg of steroids running in my veins each day for 5 days!!  This is a HUGE dose!!  Once off the IV I will start an oral steroid tapper.  I hope I get this MS crap in check for our vacation.  As of right now unfortunately I haven't seen ANY benefit, sigh.  Fingers crossed!!  

 It's scary seeing MS popping up more back to back and not going away completely once it showed up.  Hmmmmm ~ I hope it doesn't progress into a different stage of MS.

Today I was multitasking.  While getting my infusion I went up to visit my niece on the birth floor.  She is only 30 weeks along with a lil baby boy and yesterday she started pre term labor. EEEEEP!  She's on bed rest and they are doing everything to stop the progression in hopes he stays inside and bakes alil more.  I brought her up some food, movies, and health n beauty was nice to visit with her.  I hope my experiences with Avrianna being a preemie and Danny....well being Danny I can give her some insight when she wants it.   Praying for them!  It was an honor and SO COOL that she let me go to the ultrasound with her today.  That was amazing ~ Boy have things changed since my last u/s when Danny was in the womb.
Look at this cute lil thing....of course she would be the lil cute pregnant one of the family.  30 weeks and she doesn't even look pregnant.  NOT FAIR!!  LOL
Tomorrow I get to go back to visit :)  while I get my last day (I hope it will be) of IV steroids.