paralysis | Living Life

Life is Different Now

by dadams8105

It’s been over 3 years since the accident that caused me to be paralyzed. At first, I was so accepting of it all… I think the reason I could accept it so easily is that I KNEW I was going to be healed. And I still have faith for this. But I admit, some days it is easier than others. Some may think it was the phase of denial in adjusting to a disability. Maybe that was part of it, too. But when you go from being able to walk one minute to not being able to, there is no denying it! When you start to get up out of the bed only to realize you are stuck, reality has just hit you upside the head!

Life is different now… And each person with paralysis has their own unique experience, I’m sure. And it’s true that I still have some adjusting to do. The way I experience life in every avenue is different now. Here are some examples:

Going to the store: I have to carry my own shopping bag so I can put my items in it while I’m shopping. It probably looks like I’m shoplifting! I can only get as many items as will fit into the bag. I love stores like Brookshire’s that have the rolling carts with a long handle on them. And they don’t put them in the front where everyone will get them.

Getting Gas: I can pump my own gas, but it’s kinda tough. My biggest fear in doing this is that someone will (again) run over my ramp. I’ve learned to put it up AS SOON as I get out of the van! If I was not in a power chair there is no way I could do the gas thing independently. And even though gas stations have a “handicapped” procedure like honk your horn and someone will come out to you, it doesn’t work. The attendants are busy and they did not come out the one time I tried it.

Work: I work in a 5 story building. My office used to be on the 4th floor with the other consultants. My employer accommodated me with a large office on the 1st floor all to myself. It is awesome! Enough room for my wheelchair and my things. One of our custodians raised my desk to a good height for me. My work day is flexible. All of this is so appreciated. But I’m not allowed off the 1st floor unless I get permission. That way they can make sure there are enough people around to carry me out in case of a fire. I really appreciate the concern for my safety, but at the same time this is very isolating. I seldom get to see any of my coworkers. Sometimes a new hire is made and I don’t even know who they are until the staff meeting. And then I don’t see them enough to remember who they are when I do see them. There are a couple of them who are both thin and blonde that I can’t tell apart. I miss being able to be with the others. But it is what it is until it’s not. Travel is also a problem. I can’t go out of region to meetings. I don’t have anyone to help me with medical routines while I’m gone and I can’t afford to pay someone the extra it would cost. This is also very isolating because in my field we are a close-knit group. And I know so many people and miss seeing them.

Sleep: I sleep on one side or the other all night. My husband turns me every 2-3 hours all night long. This is necessary to prevent pressure sores. My arms get sore sometimes and keeps me awake. I try not to turn more often because I don’t want to wake him up before it’s time to turn the next time.

Daily life: We had to start having a care-giver come to help me in the mornings and night. So now, no matter what we hve to get up at the same time unless I call to get a later time on the weekends. But we like her a lot. She has been very helpful and I’ve gotten to know her over these pst few months. I don’t get to go anywhere at nigth unless I can be home by 7 or 8:30 every night. 7 some nights, 8:30 the others. It is very limiting. There are lots of ministry activities we can’t attend and other events, too.

Health: Some days are better than others, but the days when I feel anywhere as good as I did before paralysis are few and far between. I never know how I will feel until I wake up and get going. Sometimes I feel “fine” and other times I am either sleepy and can’t stay awake or I am in severe pain. UTIs are a constant threat and I usually end up taking about one antibiotic a month.

So all this sounds pretty dismal, right? But here’s the silver lining you’ve been hoping for!

Spiritually: Things have never been better! I’m not where I want to be, but I’m not where I used to be! Praise God! I am so much stronger because of all that has happened to me. The Lord IS near to me and I thank Him for that, because I could not make it if He wasn’t. That is no lie.

Friends: I have found out who my true friends are. They are the ones who come to see me or call and check on me, who help when they can. They are the ones who pray for us and hold us up. It is definitely true that you find out who your real firends are when something goes wrong.

So I have not given up on my healing. I know that what my God said is His Word is true. I know He will do what He said He will do. He is not a man that He should lie. So it is a matter of His timing and prevailing in prayer. Prayer is the key. God wants us His children to pray. That is how He partners with us to get things done on this earth! So if you want to help, then please PRAY without ceasing with us.

So life is diffeent now for the good as well as the challenges we face.

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It’s Fair Time!

by dadams8105

The weather is cooling off and the leaves are falling from the trees. And we are beginning to see the trees changing colors to shades of autumn. Towns both large and small are ringing in the fall with fall festivals and fairs. I used to be a regular attendee at our local county fair. The girls and I would go and ride the ferris wheel and all sorts of other rides. Oh and the games we would play trying to win the biggest stuffed animal! Tokens, tokens, and more tokens….

On Saturday Richard and I with our friend Harriet went to the Titus County Fair, the same one I’ve gone to for years, but have not been to since the fair of 2012, the last one me and the girls attended together. I wasn’t sure how it would be…. bringing back all those fond memories…. but it was good, in fact it was great! Of course I thought about them and which rides they loved. But you know, the Lord gave me an extra amount of grace for the day. Of course I missed them being there with us, but it was not a sad time.

I had a new wheelchair experience… getting across the hoses that ran all across the ground supplying electricity to all the rides. Wobble, wobble, bump, bump! But I managed to get over them, although it shook me around a little! Before long I was caught up in the sights of brightly colored banners and signs, the smell of local flairs including Mexican food, barbecue, cotton candy, and funnel cakes! Refreshing lemonade was a welcomed treat even though the Texas heat was kind of mild – thank goodness!

But this time at the fair was different in more than just one way. We went in to the civic center to scope out the vendor booths and to see the exhibits. There are all kinds of contests each year for people of all ages to compete in, including the art contests (photography, painting, etc.), horticulture (growing large fruits and vegetables, canning various produce, etc.), quilt contests, crafts, paper crafts, and so much more! I had never before taken time to really see the art exhibits and the others. What a treat I missed! And not only that, had I visited them with a more careful eye, I would have know that there were art contests for children even at their young ages. Richard, Harriet and I spent quality time admiring the various arts versus standing in lines waiting to ride rides.

Our last stop before leaving was for funnel cake. There simply can’t be anything more greasy and calorie-laiden than funnel cake! But it is OH SO GOOD! Well and when you only eat one a year, is it really that bad? I think not!! I must say that I was intrigued by seeing things such as fried Snickers, Oreos, etc. Wow, I might have to try one of those next year!

Below are some pictures of the girls at the 2012 Titus County Fair. What a great time they had. One picture is of Chloe steering a pink car, one of Emmarie steering a bus of some sort, and then one of them at the car with all their winnings, including Emmarie wearing a big red squid hat! They are smiling from ear to ear and that puts a smile in my heart. I can only imagine the sights they are seeing from Heaven.

Richard, me, and Harriet at the Titus County Fair.

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Ups and Downs and Turn Arounds

by dadams8105

The title of this post is just what popped into my brain as I began to type!
The content may or may not have much to do with the title.
Last week was one of the best weeks I’ve had in a very long time. It was also one of the most tiring weeks. So there are some new laws in the land of visual impairment. Well new and not so new.
One of my roles as a consultant is to present timely information to our teachers so they can have the latest information on teaching students with visual impairments and stay legal and all that “stuff”. I’m actually doing about 3 jobs, which equal more that one full-time job and I’m only able to work a little less than half-time. Anyway I had been planning for this training on Friday for over a month. I got my PowerPoint slides ready, gathered all the many handouts, put together the agenda, etc. I could not have done this without the support of my awesome secretary. One of the other things I love about this job is getting to give lots of stuff to my teachers. On the day of the training we were loading them up with lots of stuff for them and their students… and I love to give stuff to them… I love to give! But that meant that on top of the workshop preparation we also had a ton of things to sort out and group by school district.

I usually go into the office or to a school district in the afternoons. It is difficult for me to get places in the mornings because it takes so long to get dressed and do my medical stuff. But I scheduled the session to begin at 9 AM. And yes, I made it to work on time – early actually – and then taught all day until about 3, except for lunch! My colleague helped me present, and we had lots of good dialogue from the teachers. It was awesome! They were thrilled with all the goodies they got to ale home – most of which were tools they can use to teach kids skills related to the new laws. It was such a full day and I even worked late – about an hour or so.
I went home and still had things to do, and ended up going to bed at my regular time.
At the end of the week I totaled up my hours and I had worked more than half time, about 23 hours in all. And I survived! But barely.

Thank goodness the next day was Saturday. I was so tired! And I slept until almost noon. And at the same time the weather was changing as the first day of fall was approaching. Weather changes are never good for me. It doesn’t matter if it’s going from hot to cold or vice versa. It makes me hurt. The pain I experienced the next 3 days was almost unbearable. By yesterday I was starting to get depressed. But thank God, His mercies are new every morning! I woke up today and felt much better. However I finally slept in some. I think I needed sleep and for the weather to be still.
I can’t sleep late everyday because I DO want to get to work. After all, I have a great job that I love and wonderful co-workers!

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Rant

by dadams8105

For years now I have worked in a career of helping others; helping children who are blind or visually impaired to learn, helping families find resources, and have even been on the receiving end of these same services myself as a child and adult. Texas has an excellent entity called the Division of Blind Services under an agency called DARS. The Blind Children’s Program and the transition program offer a huge amount of support to qualifying consumers. As an adult the Vocational Rehabilitation program has been a huge help to me personally. I wear biopics for driving. These are glasses that help me see the details like reading signs through telescopic lenses. They are very costly and the VR program has purchased these glasses for me on 3 different occasions over the pat 20 years. For this I am extremely grateful! I have never had a single problem with the Division for Blind Services. I cannot, however, say the same for the Division for Rehabilitation under DARS.

You see, the rehab division has a waiting list for services. I remember a few years ago the state was going to impose a waiting list for the blind children’s program and the visual impairment field fought it heavily – and we won! Hmmm… wonder what happened on the rehab side? When I was in Baylor still in Rehab, I was told I needed to call DARS rehab division as soon as possible to apply and get on the waiting list for the comprehensive rehab program. I did this. That was in April. By August I think I finally got on the waiting list. But by that time almost all that the comprehensive rehab program would have paid for was already done – through a ton of donations and volunteers. This included things like my home modifications including the addition of an accessible bathroom and closet and purchasing a wheelchair accessible van that I can drive. But at least I was on the waiting list and that would pay for additional physical therapy. But then one day my counselor calls me and asks me if I think I would rather apply for vocational rehab services since I was already back to work part time. The point is I DON”T KNOW! That is what they are for… to inform me! Unfortunately, I couldn’t get to the phone the day she called, so she left a message. And since then I have been unable to reach her – I’ve left her messages.

So also back in August I applied for other services through an agency called DADS – Division of Aging and Disability Services. They have a program called Community Based Alternatives. I understand they would pay for someone to come in and help with household chores and getting me dressed. They would approve so many hours a week. In August they told me that in a couple of weeks someone would call to arrange an evaluation. No one called until November! Then the person, who was really nice, just wanted to know if I was still interested in the program. I said “yes”. She said services would be available in December and someone would be calling me to set up an evaluation. It’s January and no one has called.

A few weeks ago when Richard hurt his back and we could not cook, clean, and get me dressed, it all came to a head. Stress levels were high. Our friends came to our rescue, coming in to get me up in the mornings, help me to bd at night, bringing food, doing the dishes, taking out the trash, etc. But I got on the bandwagon of trying to rouse up some services. My friend who is a social worker gave me the phone number for the local DADS office and my interest list number – that’s like my account number, essentially. I called the number and the first option was to apply for services. That’s not what I needed. The second option was for people who already had services, and none of the other options applied to me. I ended up calling back numerous times and trying eat option. But i never once got through to a person. It would tell me to call somewhere else “for information” – no doubt more pre-recorded messages.

Sorry for the rambling… but here’s my point at last….

I’m now paralyzed, my husband is blind, and we can’t get help. But there are plenty of other people much better off than we are physically, and they get help. They have people coming in to do the very things we need done. But i can’t even get someone on the phone! This is ridiculous! I’m not down on people who get services they NEED, food stamps, all of it. But when we had to fight like crazy just to have our mail delivered to a mailbox at the end of our driveway instead of the community mail box location, which is totally inaccessible, and now we can’t even get an evaluation…. REALLY?

This situation makes me understand what parents go through sometimes when they have children with multiple disabilities. They have to learn to navigate “the system” and what a disjointed “system” it is. So many acronyms, people, programs, guidelines, etc. Helps me understand what they go through and their frustrations.

Having said all of that, I know we are very blessed. It’s just frustrating and a little scary because if something really happened to Richard to where he was unable permanently to do the things he does, The devil tries to make me think I’m going to end up in a nursing home… even though I have a van and am able and do drive myself to work, grocery store, etc. This has been a real fear of mine. So yesterday when he re-injured his back, this fear came on me again. And I almost let it get ahold of me. But as I drove off to go get some lunch for us, I was like, “Nursing home – my behind! I am not going to end up there!” And after that I have felt more peace about the situation. But we still do need help. Time to get back on the phone…

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Why Does Everything Have to Be So Hard?

by dadams8105

So here we are. Richard hurt his back a week ago. And since he is my primary caregiver, this is a huge deal. Being paraplegic, I have to be turned at least twice during the night not to mention help with dressing, and minimal help transferring in and out of my wheelchair. God has been awesome to provide people to step in to help. One of our neighbors walked across the street at 1 a.m. and again at 5 a.m. for several nights to turn me. My friends have come in the mornings to help me dress. Fortunately, Richard’s back is getting better (slowly). He is now able to turn me at night. Thank you Lord. But I’m still needing help with dressing and transferring. But now, my friend’s children have the viral stomach flu that is going around. Not only that but Richard’s tummy hasn’t felt too good today either. Putting all that aside…

Even little things are so hard to do. LIke plugging in the Christmas tree, like buckling my seatbelt in the van, opening and closing doors, just sitting up! I always need to have one hand anchored on something so I don’t fall over forward. I am thankful to move my arms and hands and to have that control. It could be much worse!! Nonetheless, paralysis has made routine tasks either impossible or much more difficult than they should be.

Without going into detail, I have to do a bowel program every other night. This really interferes with my life because I have to be home every other night. Because of the equipment I use that is too big to go in my van, I have to literally be home to do the bowel program. That means no going to evening events (even if I could drive at night, now) if they fall on one of “those” nights. It means I can’t go to conferences that are out of town. They are all too far away (Austin, San Antonio, etc). for me to get there, participate, and get home in time. This freaks me out because that is part of my job as a consultant is to go to these kinds of training events and bring back information. Tonight I could have gone to the Homeschool Mom’s Christmas party, but it’s one of “those” nights. Not to mention I’m pretty sure my wheelchair would never be ale to get into the house where it’s held each year.

The family has decided it’s easier for them to come here for Christmas this year instead of us doing in Nacogdoches where we’ve always done it forever. I want to go “home” and see everyone. Not all of them will come to Mt. Pleasant. If I had the strength to drive there, it would be no big deal. But I don’t.

I’ve honestly cried way more than I ever thought possible for one person. I know our girls are with jesus in heaven and they are eternally blessed and everyday is one day closer to seeing them. But Christmas, life, is just not the same without them. It is bad enough to cope with all those emotions but then to have to constantly deal with this paralysis is sometimes more than I can bare, or at least think I can bare.

The cry of my heart tonight is, “Why does it have to be so hard all the time?” I may very well never know the answer to that question. Whether I ever do find out or not, I try to encourage myself with these verses….

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand” – Isaiah 41:10

“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid” – John 14:27

“I have set the LORD always before me. Because he is at my right hand, I will not be shaken.” – Psalm 16:8

AND FINALLY…

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” – John 16:33

Lord,

You know all that goes through my mind. You know all my worries, fears, hopes, and dreams. You see all I go through on a daily basis. You see how I sometimes question You, but never Your sovereignty. You know I don’t understand why all this has happened, but I won’t go there because I know that takes my mind down the wrong path. Even though things are hard, i know there are people who have it much worse than we do. More than that I know that You are ALWAYS here. I know that You are for me, and so no one can stand against me. You know that I believe in Your ability to heal me and that I know it is your will to heal. Yet you know that I’m human and doubt. Lord, I believe, but please help my unbelief! I’m going to lean on your Word. We will get through this! We will!

Thanks for reading my rants… Some of my friends say I need to be more transparent, so here it is, LOL! Hope these verses will encourage you in the areas of your life where you are asking, “why does it have to be so hard.” God bless you all!

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WELCOME!!

by dadams8105

welcome Hi! I’m glad you came for a look! This is my new blog. Sometimes I have more to say than I care to put into my FB status. I thought this would be a better way for me to share what’s going on with us. I’ll still use FB though. Can’t go too long without it, right?!

The title of the blog, “Living Life – Jesus, Me, and the Kitchen Table” kind of tells everyone that the blog will contain posts of all kinds of topics. Inspirational – what God is teaching me and/or things I’d just like to share. Also there will be education-related posts and just about anything else, LOL!

To learn more about me please click on the “About” tab and read my story – at least the latest part of my story. I dedicate this to our two sweet angels, Emmarie and Chloe , who are in heaven.

Be sure to click the “Follow” button so you can get updates when I post. Thank you for stopping in and I hope you’ll be a frequent visitor!

Dawn

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