Friday, June 13, 2014

Ever Bending Never Breaking

Yeap this post title pretty much sums it up.  Change is something our lives are used to.  It's ongoing around here but also can Change take us by surprise.  It's taken me awhile to figure out how to write this post.  So here it goes the good, the bad, AND the ugly.

Av is OFFICIALLY an 7th Grader!!  Watch out Shattuck Middle School here she comes.  She passed 6th grade with straight A's for the whole year, WOW!!  She is even skipping 7th grade math and going right into 8th grade.  She's AMAZING!!
 Getting her 6th grade recognition award from her Enterprise House teachers ~ Ms Galica and Mr Sollitto.  They were wonderful teachers.  I know she misses them already :)
 Me n my smart beautiful wonderful young lady :)
 This weekend Av is at her first Diving Regional meet.  She placed 6th out of 18 in her 1M springboard advancing her to Zones in July, and she automatically advances to Zones on the platform.  Tomorrow she dives the 3M and Sunday she dives off the platform.
I am hanging out with Danny this morning as I don't have nursing hours until later this afternoon so Dan is with Av at Regionals today, I'm bummed as I've never missed a Dive meet until today and it was one of the biggest meets for her to date.  I will be there tomorrow and Sunday so it's not a complete loss on my part.  I LOVE to watch her I'm in awe of her and how well she can dive.  I'm so Proud of you Baby girl!!

I started the Disease modifying drug Copaxone last week.  It's an injection that I do every other day.  Here is the autojector  and syringe that I use.
 The actual injection doesn't hurt, but about a minute later......WOWzers.  I stings like crazy and then the red hot welts show up and usually stick around for about 4-6 days. I have hard knots under the skin even from the first injection 10 days ago ~  NOT COOL!!

My legs are starting to work better, and my walking is looking normal.  They still fatigue easy and have alot of sensation issues but I'm better and that's all that matters.  I'm not planning on being back to my old self, so any improvement is exciting. I would have to say the worst for me right now is my left hand/arm.  That too has better functioning, but the nerve pain is unbearable at times.  It has a constant needle n pins feeling and if it gets touched it goes to feeling as if razor blades are slicing my's PAINFUL!!  Mental note when nerve pain meds are nearing the end of there therapeutic NOT go and get nails done.  Man I was about to come out of my skin when it came to my left hand.  
I went from being on NO MEDS to being on 1 disease modifying med, 1 for headaches, 1 for walking, 1 for nerve pain, and 1 for spasticity.  I had a very hard time with it all.....was I failing as I couldn't control it naturally or was a failing as I had be on these meds.  I felt as if I looked like MS :(  It hurt!  I didn't and don't want people to look at me and say awe she has MS, I want to be the one that when looked at they say Can you believe SHE has MS.  I'm still trying to wrap my brain around all of this and how fast things can turn.  For a person who likes to be in control its a hard "pill" to swallow when I have NO CONTROL over this disease no matter how much I say I do.  MS is a nasty painful debilitating disease...I wish this on NO ONE.

I had gotten the results back from my CT scan that was done to check out the "cysts" that were found on my last MRI.  I was told everything looked good, but my liver showed "some" enhancement so I need to redo the scan in 6 months.  BUT ~ once I finally was able to read the radiologist report.....which I believe is the same as the Dr's read, right?!?  The one thing that WAS found is that I have Gallstones (no wonder I'm having issues), but NOT 1 of the 2 Dr's I talked about the scan too had mentioned this to me.  WTH?!?!  This is very disappointing!!  Now to figure out what to do.  I'm sure if one of them decide to go on the move I'll not only get really sick, but I can bet it will throw me into a BIG MS flare up, UGH!  A ticking time bomb once again :(

Dan was able to finally get his race car to the race track last weekend.  The car and driver did well :)  But the weather didn't hold off long enough for the day/nite to finish.
Last Sunday Dan and I were able to plant the 2014 Garden, we planted 24 Roma tomato, 3 pickling cuks, 3 regular cuks, 3 zucchini, 1 row of beans, 5 mounds of acorn Squash, 5 mounds of yellow squash, 6 jalapeno pepper, 6 green pepper, 1 Tabasco pepper, 1 Habenaro pepper, 1 red chili pepper and lets not forget my strawberries.  Some of the strawberries are already ready to eat, and boy are they yummy!!.  I know I had said we weren't going to have another garden this year, but we hired someone to help out around the house so I'm hoping we can stay on top of the garden better.  I should say Dan planted the garden and I supervised as after planting about 1.5 rows it was all I could handle :(  Here's to a good garden!!

Danny is doing well.  I have to say it's probably his best spring ever.  Usually he is a junky mess of allergies, but for whatever reason he wasn't bad this year.  I'm not complaining... I'll take it!!  I think whenever I'm in rough shape he's good and visaversa.  
It's with a heavy heart that I have to say Ms Gail is leaving us.  I KNOW!!  She's been with us for over 4 years and not only has taken great care of Danny, but has become my best friend.  I had always thought she'd be here forever, so shocked doesn't even describe it.    She'll be missed dearly!!  Gail is getting out of the private duty nursing and going to work for an insurance agency to help with workers comp claims.  I wish her all the her best friend, but as her boss I hope she comes back....LOL!!

Gail is our primary nurse working Mon - Thurs (and also Fri since Ms Krista left, yes I'm starting to get a complex with the nurses leaving) 8-4, with the lack of Private Duty Nurses around here it left me no choice but to have a nursing agency come into the home to help.  I have said it before, but the agency stories I've heard have me very leery.  I had called an agency before and their lack of communication and interest just confirmed all my fears.  UGH!!!  I tried one more agency, ResCare, and so far so good.  They came out right away to start the process, they allowed me to interview the nurses that will be coming out to the house as I said only approved nurses will be allowed out to work with Danny, and they haven't asked for any over the top paperwork.  I'm cautiously optimistic.  I've met some very nice and capable nurses, so things might just work out.  Change isn't easy, but it doesn't always have to be awful, I just have to change my way of thinking about it.  Ms Gail leaving is difficult and I wish it wasn't so, but it is what it is and I'm positive we'll adjust.....We always do!!

"The ONLY thing we can control is the way we think and what we do"

My niece Whitney came over last week and brought Baby E.  I was in 7th heaven!!!  What a doll!  What a good boy!  What a cutie!!  I could eat him up.  I still got it ~ he was sleeping in no time :)  Can you believe he is 2 months old and 8 lbs 12 oz?  What a peanut!!  Danny was bigger then that when he came out :)

My cousin John is beating all the odds.  Don't get me wrong there has been some scary times and there will be some difficult days ahead of him, but he is alive and fighting!!  He is now opening his eyes, tracking, understanding, blinking to answer questions, squeezing hands, and wiggling toes.  WOW!!  Once again just proves doctors don't know what the end result is, they only have an educated guess.  Keep Healing John!!

Thanks for stopping by to check up on us!!  More exciting things ahead.....I'll keep you posted!

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