Monday, January 07, 2019

People who inspire me

One reason I try to stay on the positive side when I'm using any public forum is that I know many people who have a real reasons to complain, and yet they don't.  Lots of my Facebook friends have serious problems:  Some are lonely, and simply wish there was someone to help bear the load and care about them.  Others have lost loved ones.  And I'm sure many others have problems I don't even know about, because they keep them totally to themselves.  

One man I've followed in blogs and on Facebook for many years met a lady a few years ago: they fell in love, and were getting along great, happy as can be, until the guy's ex-wife died and he took his grown, autistic, non-verbal son into their home.  His bride just couldn't handle the tantrums and other problems, and left.  I can understand her struggle, and am not placing blame.  I'm just saying that my friend is having a rough time of things.  That's really all I know about their situation, but it reminds me daily there are so many with gigantic challenges to face: things that would, I'm afraid, break me.  

I have single friends who simply wish they had somebody to love them and help share the load, and I feel for them.  Others are in constant pain, yet seldom let on.  I don't think they would want me to call them heroes, because these situations aren't something they chose, like a soldier would sign up for a war.  But they inspire me to keep going on, against all odds.  I might someday face a problem like any of theirs, but if I do, perhaps I will remember to handle it with grace, because that's what I've seen them do.  They just keep putting one foot in front of the other, one day at a time, always looking ahead.  I asked a California friend to write about her situation.  I didn't tamper with the words at all, because it's her story to tell as she wanted.  Meet my friend, Nancy.

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On December 13, 2014 our lives were turned upside down. My husband Bill was taken to the hospital emergency room. He had not been feeling well for a few days with what we thought was a cold. He didn’t go to the doctor, as he felt like he was getting better. 
In the ER they started running tests to see what was causing, at that time, weakness in his legs etc. As tests went on his condition worsened. After hours in the ER, he was put on a ventilator. The tests finally lead to the initial diagnosis of Pneumococcal Meningitis . This later was change to the final diagnosis of Transverse Myelitis. 
Bill was on the ventilator in ICU for 12 days. When he was taken off the ventilator we were told he would be going to a Rehab Hospital in a few days for therapy to see if he would regain use of his legs, as he was paralyzed from mid-chest down. He was in that hospital for 30 days. He did not get any feeling back in his legs. He was discharged at that time.
We brought Bill home January 29, 2015. We had a physical therapist come to the house twice a week to work with him.  After a few sessions Medicare quit paying for the therapist. Bill’s neurologist recommended we go to Hanford, CA to a sports specialist for more therapy. Hanford is 45 miles from where we live so we drove there twice a week. For 16 sessions. Again, that’s all Medicare would pay for. Nothing helped. Doctors had warned us it might take 9  12 months before the nerves would ‘wake-up’. And sometimes they don’t ever come back.
A year went by and still no signs of improvement. After a year and a half, the neurologist told us that there was no more he could do in our situation. After that length of time the chances are it’s permanent. So here we are.
Bill has a motorized wheel chair, hospital bed, a Hoyer Lift and sling to transfer him from bed to chair etc.He has a catheter to deal with too. A nurse comes out once a month to change that for us.
We have a converted van to take him to Dr. appointments. (our daughter Valerie and son in love Charlie bought it for us) We have a CNA (Certified Nurse’s Assistant) that comes every other day to help with his bowel elimination needs. We pay out of pocket for this service. It really is frustrating that Medicare won’t do more to help us. We are blessed in so many ways and I’m not complaining, but it seems like after all we have paid into the system we can’t get more in home help. Bill is 74 now and I’m 71. I’m here with him 24/7. Our daughter Valerie comes on Wednesdays and helps me give Bill a shower. (Every day during the week we use cleansing body wipes for daily grooming etc.) Valerie comes back on Thursdays and stays all day so that I can go out and run what errands I need to for the week. We are so blessed to have her here in town. Our other daughter, Erin lives in Las Vegas, NV and comes about every two months for a few days visit. She works full time, is working on her degree in Social Work, and she’s mama to our 5 grandchildren.
Bill is able to feed himself , brush his teeth, shave, comb his hair. Put his shirt on and pull his pants up just above his knees. Then I finish pulling his pants up and put his compression socks and slippers on for him. He lifts a 5# weight every day to keep his arms strengthened. He also has a breathing machine (the kind they use in hospitals after a patient has surgery to keep the lungs strong and clear.) He uses that every day too. To keep his lungs clear. 
He is able to be up in his chair daily for about 4 hours. Because his paralysis is up high on his chest, it’s hard for him to breathe while he’s in his wheel chair and he tires easily after he’s been in it for a while. His upper body strength is also compromised so it’s hard for him to keep his balance while in the chair. The chair is motorized and has several position adjustments which help him to sit in it. But he is more comfortable in bed. He gets tired of being in bed by himself all day too, that’s why we get him up as often as we can.
We have wonderful neighbors who have lived next door for 41 years. They are like family and we would be lost without them. We have so much to be thankful for. I have not been sick one day since we brought Bill home. And I usually always get a cold or bronchitis every winter. God has been with us every step of this journey. Also, Bill is doing great health wise. He has no other issues other than the big one, that being, the not being able to walk etc. He gets frustrated at times. I do to. My biggest frustration is the not being able to travel like we were planning to do when he retired in 2015. We are pretty much held captive by this condition. Transverse Myelitis is very debilitating.
We are so thankful that through all of this Bill has not had to deal with pain because of the paralysis mid-chest down. On the other hand we have to be careful of how we move him around so as to not injure him in some way. Also, because of this condition his body regulates his temperature differently now. Even in the hot summer his right hand and arm always feels cold to him.  It’s frustrating to him at times.
We are so thankful that we have a network of friends and family that pray for us every day. Otherwise we would not make it day by day. We know God is able to heal and make whole that which illness and disease has destroyed. We trust in HIM. We lean on HIM. No matter what we face every day. HE is with us and will do what is best for us.
Going in to our 5th year on this journey called life. Facing all obstacles with God’s strength.
Thank you to ALL who love us and pray for us. Bill & Nancy Skaggs

4 comments:

Margaret said...

I admire people who can have such a positive attitude in spite of their hardships and challenges. I TRY to, but I often give in to bitter and negative thoughts, although I don't always air them on Facebook or my blog. I'm definitely more real on the blog though, as you already know. I'm only human. :)

Sister--Three said...

My problems are small!

GrowinOldGracelessly@blogspot.com said...

Painful to read. Our problems seem minuscule in comparison.

Margie's Musings said...

What a wonderful couple and what great kids! That is so tragic!