Monday, March 14, 2016

Just Tired

Matt has not had a good week.  He’s been pretty depressed.
Your words of encouragement and kindness really mean a lot to him. 
I asked him what was going on and he said “I’m just so tired.” 
He also said he’s tired of being tired and it’s “just this disease.”
He told me “everything about it is hard, it’s hard to carry on when you can’t do anything by yourself."
He went out to dinner recently with my sisters and aunt and he said it’s so hard when you need help to eat and he doesn’t want to “bother anyone.”  I told him I hope he knew we didn’t mind helping him and he said he knew that but he just really “doesn’t want to be a burden.”   He said he knows we don’t mind, he just really wishes he could do it himself.
Pictured Kellie and Matt on Christmas Day 2015

More than anything I wish I could wave a magic wand and make him better. 
Like anyone with a chronic illness, he has good days and bad days, but lately he’s had more bad than good. 

We talked about our Coffee Hour at church this week and he is really looking forward to that. He said “I’ll be at church, too.”   
Sunday March 20, 2016.
Church starts at 10 a.m.
Coffee Hour Following at:
Congregational UCC
205 Main Street
Castalia, OH  44824
(The white church by the duck pond)

If you are available, please rally around Matt and show him you care!
I think it will do him a world of good to get out and see people!

March is MS Awareness month and we wanted to share some of the symptoms of MS:

Pain areas: in the back or eyes
Pain circumstances: can occur in the back due to head nod or with eye movement
Tremor: can occur during precise movements, in the hands, or limbs
Muscular: cramping, difficulty walking, inability to rapidly change motions, involuntary movements, muscle paralysis, muscle rigidity, muscle weakness, problems with coordination, stiff muscles, clumsiness, muscle spasms, or overactive reflexes
Whole body: fatigue, dizziness, heat intolerance, poor balance, vertigo, or weakness
Urinary: excessive urination at night, leaking of urine, persistent urge to urinate, or urinary retention
Sensory: pins and needles, abnormality of taste, or uncomfortable tingling and burning
Visual: blurred vision, double vision, or vision loss
Mood: anxiety or mood swings
Speech: slurred speech or impaired voice
Also common: acute episodes, constipation, depression, difficulty swallowing, difficulty thinking and understanding, headache, heavy legs, numbness, numbness of face, rapid involuntary eye movement, sleep deprivation, tongue numbness, or difficulty raising the foot
Matt said it’s safe to say he’s experienced them all and it’s just so hard to explain. 
Please join us in walking for a cure - Walk MS in Sandusky CLICK HERE
If you haven’t joined our Facebook Page, a page to leave a note or thought: Click Here
Not everyone can leave a comment here and that is one of the reasons we made the Facebook page.
If you’d like to send a card to Matt - I know Cindy would read them to him:
Matt Orshoski
11311 Dining Road
Bellevue, OH   44811

Sunday, March 6, 2016

Breakfast of Champions

My weekly ritual on Saturday mornings is to meet my sister Robin and Cousin Sue, we go to Weight Watchers and then have (a healthy) breakfast after. This week we went to Berardi’s because it’s close to where the meeting is and we like it.  To our surprise we walked in to see Matt O. and his high school buddies!
Matt O. with (Left side) Mike Kuns, Larry Felske, Tom Barnes and Right side (Sue and Robin) Don Pfeil, James Schaufler, Jeff Warren) It was such a nice surprise and it’s so nice of them to do this for Matt!  Matt told me he loves getting together with them!

Then today, we celebrated our oldest brother Paul’s birthday and breakfast out again!
Pictured Matt O, Robin, (me)Kellie, Dorene and the birthday boy Paul. 
We went to Bay Bell, in Bay View, where we grew up and it’s like going to Cheers….where everybody knows your name!  Matt said he loves just sitting and talking and reminiscing.
We KNOW our mom would be so proud to see her kids together. Only missing Todd O. (He lives in Georgia) but Paul took care of that and photoshopped him in :)
Todd plans on being here for Walk MS and all six of us will be there to support Matt O.
Matt says “I can’t wait!”

Matt’s slowed down this week and the very real possibility of not being able to live at home is a reality that he is ready to face. He recognizes he needs more constant care than he can get at home. He said he can’t really explain it but “I’ve slowed down a lot”. He said notices it in his speech and his memory and he knows “I should remember things that I don’t.” 
Matt gets around ok in the wheelchair but the risk of falling is warranted since he’s fallen twice and broke a hip and an ankle in the last couple of years.  He also has lost a lot of his finger dexterity and trouble gripping things, even to eat.  We talked about that a bit and he said it’s ok, because he’d be around people and still “get to see everyone”.  
Matt loves this blog and his way of connecting to everyone and loves hearing the comments that everyone leaves!  
I was telling Matt about Pastor John’s sermon today and I’m sure it’s not the whole message but what I took away from it is about knowing your worth. When you’re young and vibrant you know what you have to offer the world but as you age or get sick you know longer have that same “worth”. Pastor John said “You don’t know your value, if nobody takes you seriously.” This really just resonated with me and I thought about Matt and how his body doesn’t do what it once did. John also compared it to a sports hero that everyone is cheering for - while they are winning- but when he starts to lose the cheering stops, sometimes even the boo-ing begins.  I told Matt I wanted him to know how much he is worth to me! Even though he can’t do the things he once did, he’s still here for a reason and I don’t know why God gave him this journey but He did and we need to learn from it and if even one person reading this blog gets something from it, then it’s all been worthwhile. 
He said “I know, Kell, I know.” I’m always here cheering for you Matt and TEAM O is ready to walk for you- raise awareness about MS and maybe just maybe someday they will find a cause and a cure!

Join US for the Walk! May 7th - Sign up HERE

You don’t have to buy a shirt but if you’d like to, you can do that HERE

Finally if you haven’t joined our Facebook Group…..Please do! Click HERE to do that.
Team O. is having a “Coffee Hour” at church on Sunday March 20, following worship at Congregational UCC - Worship at 10, Coffee Hour following (Around 11 a.m.)  Matt will be there for some real live chatter!

I can’t thank you all enough for the support, the comments and the prayers.