Tuesday, April 22, 2014

Thanks ~ but NO Thanks

Why do people see the advice from physicians and pharmaceuticals, as the GOLDEN rule.  I appreciate what they have to say, but if I chose not to go that route why is my decision of lesser value.  I've done my research and I'm not too comfortable forging ahead with what they recommend.  
I think the push for another MRI by my neurologist was a ploy or scare tactic to get me to consider going on a disease modify drug.  The 2.5 hr long MRI I had last week didn't turn out too well.  They took images of my head, neck, AND back this time that's why it took so long.  I wanted all done at the same time as I figured I was already there so just get it done. I was given a disk of the images to take home for my records and with my "untrained" eye I could see the progression of MS.  Unfortunately I received an email from my neurologist and in the text it confirmed my hunch.  Per Dr.  "MRI of your brain does look worse (MS) with 4 new enhancing lesions and one new in upper thoracic cord. Some progressive T1 lesions."  This is in addition to the lesions I already have.  "Enhancing" means they are new and active, when the contrast/dye is administered and an active lesion is "firing" it will turn a bright white so it's very visible.  Once my exacerbation/relapse goes away the lesion is still there, but it is grey in color.  The images also had shown that it has migrated down into my back, sigh.  SO I now have lesions in my brain, optic nerves, and Spinal cord in my neck and back. I kinda new things weren't right as I've had so many sensitivity issues along with lots of fatigue and vision problems.  Bummer, I hate it when I'm right sometimes.
She also stated that one of my liver functions is elevated, so I need to go in and have that rechecked in 1 month.  Not sure what that's all about, but I'm hoping it's nothing too worry about.  I have enough on my plate as it is.
Of course the PUSH is to go back on a disease modifying drug.  I have tried Copaxone which was a daily injection that left massive welts n bruises throughout my body, I was thankful that it didn't work.  With multiple relapses and more new lesions on Copaxone, they switched me to Tysabri, which is a once a month 3hr infusion done at the hospital.  I have to say I was scared to death of this one.  It's one that comes with possible serious life altering side effects.  BUT, I embraced my next challenge and much to my surprise......I worked!.....
On my MS.  
But what it was doing to my immune system was tragic.  I was diagnosed with Malignant Melanoma and multiple Atypical cells because it dropped my immunse system too well, so that was the end of Tysabri.  There are new drugs out there for MS and even ones that are in pill form so no more hour long infusions at the hospital and no more needles.  How cool is that?
Well I'm NOT sold on them.  
They are too new for me and the damage they could do..... I believe they haven't been out long enough to know what dangers lurk.  MS meds are nasty, damaging, drugs...ones to not take likely.  I have found that out more with my personal experiences along with the infinite side effect lists.  I had always thought that "I'll be ok, I won't have any side effect, it'll be fine" , but reality was the drugs were hurting me and possible more then the MS was.  
The new drug that they highly recommend for me is called Tecfidera Biogen Oral (Dimethyl Fumarate) formerly known as BG12.  I was/am leery of any of the MS meds so I do what I always do....Research.  It's so new that I don't think they know what all the side effects and damage is going to be, from being on it.  There are findings, in this article here showing people getting a serious brain infection called PML (progressive multifocal leukoencephalopathy) from being on this drug.  So what else will be coming out in the following months or years about this drug about what it does to a person after being on it.  I don't want to be a guinea pig!  I have to say the more research I do the more I'm opting out of going on it.  I know the neurologist is going to be very disappointed as that's all they know, "I've got a pill for that and if you have this or that side effect we can start you on x y z  pills too".  

UGH!!  

ENOUGH!!

What a snowball effect, One that will not make my MS go away and one that potentially could make me even sicker.  SIGH!  I've been down that road before and it's NOT pretty.
Back onto my research......Dimethyl Fumarate aka Tecfidera after I looked into it more is also the same crap they put in those drying packages that are put in with shoes, leather goods, and such to keep away moisture and mold.  UM......seriously you want me to pop a pill that also does what?!?!  I found this article where there is a lawsuit out for people having severe allergic reactions to the stuff just by coming in contact with products that had this chemical/drug shipped with it.  
Scary shit!!  
No wonder the side effects MOST people are complaining about on the MS Tecfidera forum groups is ~ severe flushing/itching/burning of the skin, nausea, vomiting, diarrhea, hair loss, major stomach pain and cramping, and heartburn.  This drug can also destroy Liver functions (remember my numbers are already off), Kidney function, and drop the white blood count so fighting off infections are much more difficult (didn't I already go through this and ending up with cancer).  
COME ON PEOPLE ~It's your body trying to fight off this poison you are putting in your body.  Maybe it's just me but, thanks NO thanks.... I'm going to pass!  I'll take my chances.  Call me crazy but I'm more afraid of the drug then I am of MS right now.   
I'm suppose to try and be less stressed as stress is a HUGE trigger for MS and I don't think me feeling like total shit for months on end is going to help out.  YES ~ I've seen on the forums the majority of people are sick for months, some needing hospitalizations, and some even resorting to quitting the med as they couldn't tolerate the side effects any more.   I've also seen people say that they are SO SICK, but they are going to stick with it in hopes to make MS better.  That's just crazy!  I'm not so sure this is the yellow brick road on want to get on.  I'll stick with trying to eat right, exercise, and slowing down more to "smell the roses".  I don't know what I did or why I had to get MS, but I HAVE MS AND THERE IS NO CURE....... yet!  There is NO magic pill !!!  I will be determined and dedicated to making MYSELF healthy in hopes if I give my body the right tools it will do it's job and repair the damage.  When my time comes......my time comes.   
It is what it IS!
What a rebel ... right?!?  This goes back to my first statement...why is it that when I decide to be healthier I'm poopoo'd, but when the holy'r then MD wants to pump my body with poison and possibly make me sicker they are looked at as amazing.  
I say this with Danny all the time.....in the medical field there are MANY things that CAN be done, but are the being do to him or for him?  
BIG difference!!  
I want a quality of life not a quantity.  Hard as it is to except we ALL are terminal, we are ALL dieing with every day we are one day closer.....some have it harder and some have it shorter.  All I know is I have MS and someday I'm going to die, but until mt day is up I'm doing to enjoy my days as much as I can and hope for the best.  That's all I can do!  I'm not going to sit around and stress myself out with things that I can not control, as that is no good for anyone.  I got another crap hand and I have to play this one out too.  Maybe there will be a treatment out there that is right for me someday, but right now......I just don't see one.
I go in to talk again with the Neurologist in a few weeks, maybe she can shed light some light on this, but I always have the thinking that they are looking at it from a Dr's perspective and NOT the patients.  I wonder if I ask her if she'd do it if she was in my shoes...........
would I get a honest answer?

Thursday, April 10, 2014

Springing Ahead

Our Spring Break to WI Dells at the Kalahari Resort was a blast.  The kids had alot of fun. Here are some photos of the day ~
Wow have these two grown :)
 How cool is this!!
 First ride is the water roller coaster


 Then it was onto the next big ride.  This one they stand on a drop door in the floor and then all of sudden the door opens and wham you are free falling in this water tube, EEEEeeeek!  Avrianna LOVED it, of course

 I was able to sit back enjoy a couple drinks and read my book ~
 They had a tons of great things to eat :)
 It was back n forth from the indoor water park to the indoor theme park
Lazer tag....I think they did this about 5 times :)
 3D Lazer game
 They Placed
 She made it all the way to the top!!

 The rope climb....scary!!
 Back in the pool ~ Can you find them?  I'm sitting at our table so I had a great view of the Wave pool
 Again back to the theme Park ~
Doing a Lazer maze.  They had to get from one side of the room without touching any of the lazer beams



My niece Whitney had her baby boy on ..... April 1st.  At first I didn't believe my sister when she texted me a photo of a baby at 5:30am.  I don't care what time it is, your not pulling the wool over my eyes, HA!  Well she got me as it was real.  Ethan Matthew Griffin was born at 2:43am weighing in at 4lbs 11oz and 17.5".  He's adorable!  I haven't been able to "SEE" him in person as he is in the NICU and with the bugs going around they are not allowing anyone to visit but the parents n grandparents.  So I have to wait, impatiently I might add, to meet this lil sweetheart.  He is doing amazing and it looks like he's going to be going home possibly this Friday which is awesome as his due date wasn't till May 12th.  Way to GO, Ethan!


It the year of boys around here as Danny's Nurse just found out she's having a boy too :)

Sunday we celebrated my Grandma's 80th bday.  I had the honor of making the cake.  She was the one that got me started in making cakes back when I was a kid.  We were able to get some updated generation photos at the party.
The BIG ONE ~ 6th generations, unfortunately Danny wasn't at the party so he is missing but there in spirit and Baby Ethan will replace the baby doll that Great Great Great Grandma NaGreen (101) is holding.  How amazing is that!!  Age range 101 - 1 week
 Me and Grandma Bev with her cake :)
 Here is the 5 generations of ladies on my side
 and 5 generations of ladies on my sisters

Avrianna completed her 1st year of Brigade.  She really enjoyed being there :)  At the awards banquet she was awarded many patches due to hard work throughout the season.  Now onto next year.  She is still going to be at in the building 2x a week till the end of the month as she is taking a Hunters Safety course.  Plus she is going to the week long Camp for Brigade this summer.
Award Nite!


Gunner got his Spring "Do" ....looks like a whole new dog ~


Here is Avrianna's first real practice at the platforms with Coach Todd at Schroeder in Brown Deer, WI.  She absolutely LOVES it.  So I am trying to get down to Milwaukee (Brown Deer) once a week to get her some practice.  Avrianna plans on competing in her next meet in May on the platforms :)

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 eat...how 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 me.....it'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
JUST
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
IS SICK :(
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 about....it 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 things....it 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.

Tuesday, February 25, 2014

Perspective

3 more days of this subzero Antarctica like days and the record of Coldest Days will be set to the 2013-14 winter.  YUCK!!!  Brutal has not even began to hit what this winter has been like.  It's so cold ...
How cold is it?
Well it's so cold I believe Hell might have frozen over!!
With this weeks temps I don't see the cold ending any time soon.  I am looking forward to a vacation to .... anywhere that it is warm.  We did manage to have 2 days that were in the mid 30's and let me tell you, here in WI we all thought that was a heat wave.  People driving with their windows down and walking around with no coats on.  There was a time when mid 30's wasn't that appealing, but now.........
I say BRING IT ON!!

I believe Danny is out of the woods for any UTI's or C Diff, but there is something that is still ailing.  He's just not himself.  He is back to either sleeping or up crabby n crying.  Man that takes a toll on everyone, to watch him be so miserable.
Yesterday, in the frigid cold, we took him to see the Dr.  Yes I brought him to see a different Dr, as Dr K is out of town AND there is a nasty cold/flu epidemic going on around here, so he obviously has us worried for me to bring him into to see someone new AND into a germ infested playhouse.  Of course nothing just jumps out at us as to what is wrong  so a large blood panel was done, and now we  WAIT!

I hate waiting!!

Not that I am looking for something to be wrong with my Lil Man, but I hope we do find something.  Something we can fix and make him feel better.   Not only has the weather this winter been brutal but Danny being sick has to be topping the charts also.  He also has an appt this Friday with urology along with a renal ultrasound to get a better game plan to Danny's newest trick of no peeing and getting UTI's.  It will be nice to see if his kidney stones have changed or moved at all, which could be a source to some of his issues.

NEVER

EVER

A DULL MOMENT!

Bragging time ~ Avrianna got straight A's once again this quarter.  2 quarters of straight A's, 6th Grade is her year, it's definitely going to be a difficult year to beat!!  I hope she continues to enjoy school and thrive academically as the years go on.   I am so PROUD of her.
Summer camp schedule that I had planned,  needed to be changed so it was back to the drawing board with different dates and some different camps that I put her in.   I guess that is the disadvantage of "planning" ahead, but if I don't have a plan I start to go alil crazy..........can you say OCD :)  I hope everything is now a go and there is no more changing needed.  Wishful thinking I know, but a girl hope.

I sit here typing this post while my brain is spinning...... I once again find myself in another MS relapse.  At least I had a couple good weeks before this one decided to come out and play.
Frustrating to say the least.
I found out yesterday that it is attacking my eyes as well, can you say pissed off!!  What the hell am I going to do if I can't see?  Seriously?  I was ok or came to terms with knowing that some day I would probably end up in a wheelchair, but my vision........
ENOUGH ALREADY!!
MS doesn't know I have a son that is severely hanidcapped and medically fragile, A daughter that is a social butterfly and excelling in everything that she does, and a Husband that just can't sit still.  I thought I was doing MS as well as I could, but
I was sadly wrong!
I definitely question myself in many ways with each n every blow.  Here is what I get to deal with daily.....I have an astigmatism that mimics the symptoms of my optic nerves being swollen thanks to MS.  I have hypothyroidism that mimics the symptoms of my MS.  I have MS that mimics the symptoms of my fibromyalgia.  I wonder, at each and every spot I find, if that is another melanoma, as 2 weeks ago I had 2 more moles removed and 1 of them came back with A typical cells.  That makes 7 moles in the last 1.5 years removed 1 malignant melanoma, 4 A Typical (1 needed more cell removal) and 2 that were ok.  You can say I keep the medical field very busy.
What the hell happened to me?  Why did this all happen?  WHY? WHAT? HOW COME? and the list goes on and on.  I put a smile on my face, I get up, and I fight through the day as if I am not broken.   I am broken!!  When is enough enough?  I am consumed!!
I guess with the new vision scare it has prompted me to look into other treatments and MS stories.  Do I let MS win, as I now know I can't beat this OR do I give it the fight of it's life?  Do I fight for MY LIFE?  Oddly enough the pain and the crippling effects of MS didn't have a hold on me until I found out I might lose my vision.  I will be lost without it.  I'd rather be deaf, then blind.  To not be able to see my kids and participate in all that I do with them........it's devastating!
I have the tools and the resources to try and beat this.  I've read countless testimonies of people that have improved their quality of life, but still I sit here resisting.  And it's as simple as .....
FOOD
When did doing right, feel so wrong?   I've already cut out so much out of my diet.  I've worked VERY HARD to be where I am today.  But it wasn't enough :(  How much more do I "give up", how much more do I fight?
WOW!!
How selfish and petty, right?  How can it be that I have a problem with choosing "toxic" food over my life?  It's a difficult choice to make in today's society and food choices.  Why is that?  Could you do it?
I find it disturbing that I am ok with pumping my body full of toxins and poisons that the medical field deem therapeutic for my diagnosis' but I'm hesitant in eating healthier.  What is wrong with me?
I AM GOING TO FIGHT!
WHAT DO I HAVE TO LOSE?  A stronger healthier body, well I can live with that.
Ironically yesterday as I was browsing through FB and I found a Tedx Talk on a woman, Dr Terry Wahls, about reversing her progressive MS just with her diet.
Guess I was in the right place at the right time.   Was this a sign?  Whatever it is I am going to roll with it.  There were many other Tedx talks with her about her life with MS.  She just wrote a book that is coming out March 13 on the Wahls Protocol about her "hunter" diet.  Going back to the old ways with only eating greens, seeds, nuts, berries, fruit, veggies, meat, and fish.  It's going to be hard work I'm not going to lie.  Especially as I have a husband that is pretty much set in his ways and a daughter who is Ms picky pants with food.  I foresee at least 2 if not 3 different meals that will have to made :(
I'm worth fighting for and I'm going to give it a try.
Wish me luck and much success!!