Thursday, July 21, 2016

Hearing so many references to God Bless America makes me think........

maybe if we spent more time actually living out 

(more kid friendly)

We would have a more BLESSED AMERICA!!

Monday, July 11, 2016

just a quick note .....yes, I am still alive...and her ITP dropped again!

Well, this week has been nothing to write home about but definitely something to cry about.  And yes, actually I have found my emotions to be all over the place which causes the tears to flow when I start talking about e.v.e.r.y.t.h.i.n.g. that has happened these past 12 days or so.

I cried alone.

I cried at church.  A lot.  I didn't share this before but Sunday was the final day that my FAVORITE PASTOR EVER would be preaching.  As it goes pastors get called to new churches, venues, promotions, services.  I don't know the percentage of how many "accept" or "decline" the call but, after weeks of "Prayerfully considering" by Pastor Bob and thinking about his age, his responsibilities, the new adventure, etc....he chose to accept the call.


Pastor Bob had been our Senior Pastor for 8 years and yes, I grew to LOVE his sermons, his way of sharing the bible, and his way of connecting the message to every day life.

The final service was complete with HIS favorite songs and a final farewell song sung by the adult choir.  "The A Team of singers if you will".  ;-)  Oh, my gosh that song was sooo touching!! And those lyrics along with the stressors of MY week proved to be a recipe for an emotional release.

Once the tears started I kind of couldn't stop them.  So I did what I like to think most would do in that same situation..................**Think about the lights...are they dusty? do they change those light bulbs way up there?...Think about any thing else....Don't look at Pastor Bob (more tears)....Look at the kids (they are goofing around and have no idea what is happening)....its' hot....time to fan myself....Is this song over yet??? Is any one else crying like this?  Is anyone else looking at me?  Hey Makenzie do I have red blotches all over my nose?  Around my eyes?  Really is this song over yet?? *** ...................Whew! Made it......

Next it was time for his reception brunch.   We ate a light meal, heard a few short and very heartwarming stories about Pastor Bob, and he shared his final thoughts.  More tears. More fanning.  More appreciation for the man and the fact that he seemed to make an impact on everyone  just as he had made an impact on me.

By that evening I called my mom to tell her about my weekend. 

Yep, I cried again!!

I didn't look at my eyes but by morning they were kind of puffy and I thought they had "the look" of someone who had been crying.  Oh well, off to the hospital with Nicole for a blood draw because by Sunday night HER bruising AND Petechia (small pin point rash) came back!!!!

ITP ...ugh!  Platelets down to 8,000 on a scale of 150,000-400,000. 

We met with the doctor...and guess what?????

 I CRIED!!!! (are you seeing this pattern?)

Life has taken its toll on me.   But, at this very minute I feel better.  ;-)

We are starting a new plan of attack on this ITP with Nicole.  80 mg. of Prednisone for 3 weeks....yikes!  I feel for her but it has to be done at this point.  We will ween off after that, more blood tests, and reevaluate again....

**What's ironic about the drop in her platelets is that each time it has happened it has been on day 2 of her menstrual cycle.**Hmmm, coincidence????  I like to think there could be a relationship there that we are missing....we will continue to take notes and watch it.

Until then we are just trying to survive until Friday.....when we get our new air conditioning system.

Right now its 87 degrees in our house ...

hot is an understatement ....

sweaty is the new black!

Saturday, July 9, 2016

My flashback yesterday was to 2015 ...but I guess I should have went all the way to 2010...

Funny (as in coincidence funny not ha! ha! funny)...but just the other day I asked hubby how long it had been since HE was in the hospital and had not days but weeks of steroids, tests, and blood transfusions while the doctors tried to figure out what was the root of the hemolytic anemia causing HIS immune system to act like a person's body who has AIDS.  (or so that is what the doctors said then.....)

He said it was the summer of he would never forget.  I, on the other hand, am not so good with remembering dates and years of past experiences and honestly, there have been times I have to pause to think which kids' birthday is the 20th, 23rd, or 27th....why all my kiddos had to be born in the 20's I will never know?? 

So lets have a little Saturday~ summer ~ shot ~ or time machine trip to THAT year.....a flash back if you will....because the CRuiSE NIGHT never happened last night.....

Owen, Kenzie, and Coley above and the girls with their cousin Ethan below.

Instead, hubby went to his yearly check up yesterday.  His oncologist that he had from 2010 has been routinely (yearly) visiting with him just to make sure all is well.  It had been.  Then, the fluke blood issues started up with Nicole this last year so when they (our family doctor) asked us if we had an oncologist we wanted to see or they would refer us to one; we immediately said we did, and to their surprise we started conversing with the same doctor for Nicole as hubby had years earlier.

Sorry simple rambling there.....back to hubby's appt. yesterday...and after blood tests were finished and the results were in HE TOO HAD LOW PLATELETS!!!! 

Seriously!  I would and could not make this stuff up!

All the other blood work came back great.  He has never had low platelets.  That is not part of the hemolytic anemia THAT is ITP....the other blood disorder....and NOW HE HAS THAT??? How is this possible?

He had a virus recently and she -doctor-thinks the virus caused his immune system to react this way....

Any way, the average numbers are 150, 000-400,000 his number was 2,000.  And with that you are awarded a hospital room, platelet transfusion and steroids!! 

So who is next in the family??? 

I hate to say it but I am kind of feeling left out of the loop here........I know it sounds horrible and I feel horrible even thinking it but, shortly after hubby left I went to the bathroom.  (you will see my point in sharing in a sec.....)

I flushed the toilet and water spouted everywhere.....NOOOOO, I CAN'T HANDLE THIS RIGHT NOW!!!

(Our a/c went out this past week too....we have until the 15th for the new one to be installed.  About 2 weeks ago our washing machine died....THEN add on the stress of Nicole's blood ups and downs ~ hubby heading to the hospital as I literally flush and now I have water flowing like Niagara Falls....really ???? I don't even want to ask .....What could be next???)

It's 2:30 on a Friday afternoon what plumber is going to be available?? ** I want to cry.  I want a beer.  I want ice cream...Yes, I am emotional let me be!**

Really I want to cry......

But, I handle it as always.  I call a plumber and he can be out between 3-5PM.  He says we need a new valve, tank plumbing and screws are rusted/leaky...the system is probably 20 years old and like many other appliances lately I guess 20 years is the max and its time to replace.  He will be back Monday afternoon to replace all for a mere $ is what it is...we are not plumbers so we pay what they say.  

I am feeling a little depressed....good thing the girls are out with friends enjoying cruise night downtown.  Good thing Owen happens to have a friend over and they have no idea what is going on around them.  

I know, I know.....its not about ME.  I just have to change my attitude...have an attitude of gratitude or something... but its hard sometimes.  I know I should look at all the positives...and there are many....but I feel the weight of every thing sometimes and I cannot do it all.  

In fact, I don't want to do it all....turn that frown upside happy...exercise will make you feel better (No, I want ice cream and then I want to be mad after I eat it because now I am bloated and feeling worse)....

I am trying...I know no one chooses to have low platelets.  No one says on a Friday morning when asked what they want to do this weekend, "I want to be admitted to a hospital so I can get an IV of steroids for hours!!"  I know.

Give me time .... 

this too shall pass.....

It has to.....

I have a swim meet to go to and laundry isn't going to get clean on its own.  ;-)

Like I have said before....this blog is my therapy, my open diary, my thoughts, my memories and in my weird way it lets me vent and/or get things off my chest that I would just stuff down inside otherwise....I don't mean to offend anyone in the process so please don't take it that way. 

Friday, July 8, 2016

Flashback Friday and a book I am loving....

First lets start with the book ~ why not right?  Flashbacks can be a bit freaky so to begin a new is freeing.  Freeing in the sense that when ever we start something new its fun, its exciting, its curious, its scary but its also daring.   

Daring Greatly by Brene' Brown is the book that is all that AND a bag of chips.  (Chocolate chips in my case ~ I am not a huge chip chip kind of gal.....unless, its accompanied by a margarita and salsa then fill my bowl please!) 

Lately I feel like I have been on overload with anxiety and stress but like a typical female I tend to keep most of it inside and its been wrecking havoc on my nerves.  I started Googling books and happen to come across this has been awesome!!

I am about 3/4 the way through it now.  Its becoming full of underlined and "starred" phrases that I want to go back and reread once I am done.  Actually I may just read the entire book again because its that good, helpful and some parts that really "hit home" need to be swallowed up by my brain so I can use the information to its utmost potential!!!!

Friday Flashback....this kind of scares me....tonight is "Cruise Night" in our city.  It's actually been our week of Pan-O-Prog / water carnival / city fun ...what ever YOUR city may call it its the time to bring out the old cars, baby crawl-a-thons, Beer-brats and Bingo, softball tournaments, bowling tournaments, art and craft shows and a parade complete with candy being tossed at your feet to finish it off.  (What could be greater than squished tootsie rolls?? ha!)

So here we are last year.

Some cars are awesome....some are loud...and some are from many years past...
"The Good ol' Days if you will"
After the 2-hour parade of cars and or trucks most park their vehicle on main street (the street closes until 11 pm I think) and it gives the kids and old alike a chance to peak inside some of the classics.
speaking of classics......

What makes me laugh most about these pictures is that we look exactly like this still!! I guess that's good right??? Haven't aged too much, haven't gained that much weight, and we can still drink win!!

Have a great weekend.
The weather is suppose to be 78 and a light breeze today...perfect for being out and about so I better get ready and get out there!! 


Thursday, July 7, 2016

LETTING GO is different to many but HARD FOR ALL....

Some quotes to think about if ever having a moment of sadness when letting go of a loved one, a pet, a family heirloom, or memories.....
because often we are just wanting to FEEL the SAD emotions it brings up
rather than....
 BEING MAD at the result of something out of our control.

*inattentive drivers
*senseless shootings happening every where
*weather tragedies
*past decisions

Monday, July 4, 2016

It's Independence Day!! longish post thoughts from my morning walk...

After over indulging last night on ice cream while watching 100,000 Pyramid and Match Game...btw, Match Game is hosted by Alec Baldwin and he and the celebrity panel were hilarious.  I rather enjoyed the "old game show" and stayed up way past my normal bedtime.  (I think lights were turned out about 10:30 last night which is an hour later than usual)  I decided that I would get up this ~ July 4th morning and walk early because it is predicted to get hot later in the day.....

First goal accomplished!  I actually walked/ran 5.6 miles! Boom! (that's as close to a firework as I will be getting tonight..ha!) As I was taking in the quiet morning, I specifically left my music at home, I thought a lot about my ups and downs, my anxiety, and my independence hence Independence are some Ah~ Ha ~ Moments in no specific order:

1.  I like to have a little control over my family, house, and life in general....but that is not always the case.  As the kids get older we are ALL changing in our dependence and thus independence.  I feel while I try to let some things go  other things tend to bug me a lot more.  I am trying to step back from adding my "two cents".

Just because I have been there, I am older,  I maybe wiser, or because I don't want to see what I perceive may be a negative outcome to a decision ~ I am letting family members make those decisions and deal with the results.  I am not responsible.

I need to take control of my decisions: whether its the food I eat, exercise or not,  what am I passionate about, what do I want most out of life right now at 47?

2.  I have anxiety over a lot of the issues in #1 so lets deal with that head on!! I cannot keep all my anxiety locked up in my head any more.  It's definitely a domino effect.  Things happen, my mind goes wonky, I stuff it inside, I eat, I have no energy, I am feeling so much pain through out my body thus, I am seeing how it has been affecting my health and well being.

3.  These past two months have pulled the rug out from under me.  Last year when Nicole was "diagnosed" with ITP it didn't seem like a big deal.  I didn't read much about it and we weren't told much about it in all honesty.  Life went on and over the winter I kind of forgot about it.

Sometime in March? she started getting bloody noses again.  Again I didn't really think about her blood disorder and after all it is drier indoors during MN winters.  Then May came~ she was SO pale, she fainted in front of me TWICE, we went to the ER immediately.  Wake up calls can be brutal.

I have read a lot about ITP but I forget a lot too.  This is all so new and mind-blowing.  

Why can't blood cells, platelets, and immune systems just be called that? Simple ~ easy to pronounce and understand?  Well, every blood cell tends to be a new word about 15 letters long....every definition leads to another definition and possibility.  The platelets ~ WHOA! Who knew their importance and the fact that their job leads to another page of information which leads to more pages of "What ifs".  What if the cell counts come back high? low? or her IRON?  Do we continue with steroids?  Spleen surgery?  Rituxin? More blood draws...and now fasting because B12 looks low along with folic acid?  Why?

My head is exploding with all this information.  Why doesn't  everyone around me read up on it too?  We all need to be educated more.  We all need to share this stress that I am feeling.  Or is it just my anxiety ridden point of view?  She is 19.  Does a 19 year old get how scary this can and could be?  Maybe she does and yet she doesn't want to really believe it is happening.

I don't want to believe this is happening...but it is. 

4 weeks later and her platelet count took a nose dive again.  She is bruising more and developed "the RASH".  More steroids.  What can we try to do on our own to change this even just a little?  My suggestions don't seem to mean any thing so I have to let go and just wait.

Then, we went to church and they played that damn funeral song "How Great thou Art"....seriously, EVERY.TIME. I cry when I hear it....sitting next to her in church the tears started again...I can't do anything besides let go and let God.

She is becoming more independent.

4.  I don't have control over much.  This anxiety is getting the best of me.  I need to find a better balance between independence, dependence, and well being to be a better version of ME as they need ME.

If feels good to cry and it feels good to write out these thoughts here.  It's kind of like my therapy without having to pay for it.

On this independence day, as I say good bye to my daughter who is on her way to work and text my family whom are up north, I will take a moment to reflect on all the July 4th's celebrated before me.

So many have fought harder battles to get where we are today. 

We are lucky.       We have an amazing life.    
We are blessed and we have independence within our country with out being controlled by a dictator type of government .  No one likes to be controlled thus, I am seeing things a little different right now.

Enjoy your day.  Take time to reflect in your own way..... to feel and release a little DEpendence to embrace this Independence.

Sunday, July 3, 2016

How to lessen your anxiety....spray paint furniture and laugh at silly t-shirts...

 Saturday morning....because who doesn't want to see what Menards parking lot looks like ~TWICE! The top photo was taken at 6:45am...they open at 6:30 so I was surprised to see ANY car there besides mine....and then because I needed more spray paint I made a second trip about 9:30AM...

The furniture was spread nicely throughout  the backyard and the paint cans are waiting patiently...

Let the fun begin...

Orange and blue ...

 The photo on the right was taken before I moved them back to the patio...note the lovely grass that will be discolored until it grows out and can be cut.  ;-)  I sprayed the table tan to match some other wooden chairs we have.  (Not that that matters since I am not really going for a matchy kind of look..ha!)

 After that was done I ran to Walmart and just a little FYI....don't plan on doing any thing with your fingers after spray painting about  6 cans worth of paint.  My fingers were numb and kind of shaky when I would try to type or write for about an hour or two after I finished.

Who knew my fingers would be the only thing getting a work out in yesterday!  And then at Walmart I saw these shirts.....


Come on ~ you know you have either said it or thought it at some point in your life!!

Happy Sunday...time for lunch at Olive Garden with Coley!