The Good, The Bad, and Me

Today kicks off the halfway mark for the year. It's hard to believe I've been writing weekly for over six months now; I thought I would have run out of things to say. The insurance issues have helped to add material this year.

Speaking of insurance, I received an indirect update from them a few days ago. Since we were appealing their decision, coverage for nursing was first extended to May 18 and then to June 7. This has helped to ease the transition to the new system and allowed the 60 days to go another month since it hasn't been used. Another nurse has also been found to cover my nights and lives close by, so it looks like June will be nearly covered. That's the good news, now for the update.

I contacted both Iowa senators and my representative about this situation to see if their influence could help. One of them, Senator Grassley, sent me a letter containing a reply from Wellmark Blue Cross Blue Shield, my insurance, on their decision. Since I no longer use a ventilator, all nursing coverage will be stopped on June 7. All other items will remain to be covered as long as it is deemed necessary by Wellmark. Even if I did go back on the vent, they would only provide coverage while I recovered and worked back off of it. Also, the nursing home in Des Moines I was working with decided I was too much work and would not take me. I have started giving my information to a facility in Waterloo, but the last I heard from them the answer was "not yes, but not no yet."

So despite letters from various doctors showing that diaphragm pacing is the same as a traditional ventilator, known to have problems like a vent, and that if it malfunctions I can't breathe, the decision is unchanged. One of my caregivers asked if the place in Waterloo says no and the exception to policy doesn't continue, what am I supposed to do? The short answer, I don't know.

My parents would cover everything as long as they could, but that couldn't last long. We had several nights not covered in May and those got to be pretty exhausting, especially for my mom. It's possible that I could get about ten hours a day covered through Medicaid, I have a fellow quad friend that has this situation. When we would choose to use those hours, night or day, and what to do about the remaining fourteen hours is unclear. If that doesn't get approved, I'm not sure what's left. My father's employer is switching insurance companies since Wellmark is very expensive and isn't covering our needs, but we already know that company won't cover nursing as needed.

As time continues, the future looks unsure, but that has been the case since January and we have been taken care of through half the year already. God's timing is not our timing, but He does have a plan for us all.

Memorial Day 2014

Memorial Day is the day set aside to remember those who have gone, especially our veterans that have fought and died for the freedoms we have. This is the first year that I have lost someone close that I remember well.

My grandfather served in the Korean War. His main job was managing a type of general goods store. The requirement for the position was someone that didn't drink alcohol, since that fit grandpa, he got the job. If any beer was missing at the end of a shift that hadn't been sold, the person on duty had to pay for it. Knowing grandpa, I highly doubt he ever had to pay a cent.

Like many veterans, grandpa didn't talk much about his experiences in war. One thing he did say is that he was in boot camp with Elvis Presley. However, nobody liked having him around because he kept playing his guitar all the time.

There were several occasions where my grandparents would help watch me for various reasons. Unfortunately, grandpa didn't like to sit, so I taught him how to play solitaire on the computer during down times. He said that "the guys" played solitaire on the ship back from Korea, but he didn't know how to play. It's the only thing he ever learned to do on the computer, and I had to help him get it going every time, but it gave him something to pass the time when they were here.

The ultimate sacrifice though was 2000 years ago. Through Christ's death and resurrection there is a freedom that is not bound by a country's borders or laws. If we believe in Him as our Lord and Savior and are truly repentant of our sins, we will have the freedom to live with Him for eternity.

As we remember those who have gone before us, we look forward to the day when death the enemy has been conquered and all wars and suffering will cease.

Feeling

Our bodies were designed very well. Robots have been made to simulate, or replace, lost limbs and the entire body, but can't quite master every aspect of God's design. With the curse of sin though, we get problems like spinal cord injuries that totally redo how a body works. One of the quirks is the sense of touch, or feeling.

For me, I have full feeling from neck on up and some sensation on about the top inch of my chest. Everything else below that point doesn't give me any feedback. If someone touches my hand and I don't see it, I wouldn't know it happened. However, just because I don't feel below my shoulders, it does not mean feeling is gone. All the nerves are still in my body, their signals just don't make it to my head. One way my body reacts to being touched, or feeling something, is through muscle spasms.

I can be driving down a sidewalk, or riding in a car, and hit a bump and my arms and legs will flail in every direction, that's why they're strapped down. If I'm getting a shot or having blood taken for a test, my arm may react to the poke, but I don't feel a thing. I have been asked a few times, if I can't feel my feet, why do I go barefoot all the time. The answer, because my body still feels.

Preference is definitely part of the reason as well. I have read for many years about the benefits of Parents for Barefoot Children, the Barefoot Book, the Society for Barefoot Living (SBL), or the section on my site. The advantage for me skipping footwear, is that my body is much calmer, and has fewer muscle spasms. It also allows my caregivers to make sure I don't have any curled toes or anything causing pressure points.

There are many advantages to going barefoot, especially for kids, but those benefits are mainly for walking. I could easily write a few posts on the advantages of skipping footwear, but for now I'll refer any readers to the websites above.

Every day I can see my legs out in front of me, but I don't know if they're hot or cold, or possibly laying wrong. In many ways, it's like I'm attached to another person. I can see reactions, but don't get told why or what's going on. However, it does allow for some ways to take care of life's necessities. Since I can't feel, I get my bath at night while I sleep, one less thing to worry about during the day. I also can't feel the pressure sores that are likely very painful. You could also say though that I may not have gotten them in the first place if I could have felt problems forming.

Living as a quadriplegic is a unique life, but one that I've been given and will continue as God's plan continues.

One Nation under God, or is it?

With all the funding issues going on the past few months, I've stated several times that I will follow God's will, wherever it leads me. This nation was founded on Christian beliefs, according to God's word, as one nation under God. Unfortunately, that is quickly becoming far from the truth, especially under the current administration.

A few weeks ago, an editor of a newspaper of a nearby town publicly said that gay organizations are trying to reword the Bible to make their sinful nature right with God. Unfortunately, he's right, but the paper didn't want to hear it and relieved him of his duties.

On April 22, a book titled God and the Gay Christian, by Matthew Vines, was released. It attempts to explain that God didn't mean for man and women to be together, but anyone a person feels as a companion. Vines tries to redetermine the need for creation of Adam and Eve as just a need for companionship, nothing more. You can read an analysis the book to see how far from the true word this book goes. A plain reading of scripture easily shows that homosexuality is a sin. Passages like 1 Corinthians 6:9-10, and Romans 1:26-27 are plainly against such behavior.

The United States is much like the nation of Israel that rebelled against God. In public schools, and even with the agreement of some churches, molecules to man evolution is being taught as fact. Students are being taught that life isn't special, we're just here by accident and are just pond scum. After you die, that's it, you won't know anything happened and after everyone else dies then they won't know anyone ever existed. We're seeing an increase of the result of this teaching on the news almost weekly.

More random violence of people being killed, especially in schools and college campuses. The life of an infant, a human being made by God, isn't anything special, just throw it away. A New Jersey woman released a video that she took while having an abortion. She was pleased that she could make a life and end it as she wanted.

I'm wonder if it's getting to be too late for this country to turn around and see the error of our ways. All authorities, or government, is put in place by God. That means we're what's being described in Romans 1, and it's unfortunately not hard to see. The religion of humanism, or atheism, is becoming more prevalent, and its followers more vocal and harsh against anything that doesn't agree with them, such as Christian teaching. What the future holds is in God's hands, but I'm afraid to see what is to come.

Cracked Door

When a door is open just a crack, I can sometimes still get through it. If it opens away from me, it's a simple matter of just giving it a push and it swings open. If it opens toward me though, it depends on how far open it is, how much space I have, and a few more factors if I can get it open. That's how I feel right now with this insurance situation, the door is now open a crack, but I'm not on the easy side for pushing it all the way clear.

Friday morning, we were notified that the one program my DHS case worker was trying for had been approved. My private hired caregivers and parents are now basically self-employed as what's called a CDAC provider and five nights a week of care through the nursing agency is covered. So, that means every Friday and Saturday night are not covered and my day people will have A LOT more paperwork. Since the funding is through Medicaid, it has some restrictions.

Each month, I can go out five times for personal needs, such as going to the grocery store or Wal-Mart. Thankfully, my case manager said this can also include walks on the bike path by the dam close to town as it helps maintain a healthy mental state, or something similar to that. Unfortunately, it doesn't include as long of an outing as going to watch trains, so we'll see how to get that in. Having Saturdays with wonderful weather and a caregiver and not getting to the tracks would be irritating, so maybe I can get it as part of maintaining good mental health. As I currently understand it, everything is up for somewhat of a review, so that could be an item to discuss. This doesn't sound bad, but it comes with a time limit.

All of this is only in place for 60 days, which I believe starts this Wednesday, May 7, when insurance cuts off nursing care. During these next two months, I am supposed to find an alternative for funding my care. What that alternative is, nobody has an idea at this point. Therefore, I could be back to looking at a nursing home in early July again.

As I have said before, we read in Jeremiah 29:11, "I know the plans I have for you, declares the Lord..." With this development, my dad's employer can now drop the expensive insurance and go with another company. That also meas my parents no longer have to pay out of pocket to help cover that extra expense. Through these past few months though, I am very thankful for the parents I've been given.

They went through a lot of work and frustration to try and find alternative funding solutions and to get all the needed paperwork complete. Mom said at some points it felt like we were on trial, being asked what care I really need, when do I need it, and why different skill levels of care are needed at different times.

Through the next several weeks, it's likely that we'll experience more of it. God's direction through all the people He has put around me continues to be evident and will be as the quad life continues.

Yes, but No, or Maybe

Do you ever feel like you go forward one step, or wheel length, just to go backward further? I think we all do at some point, but some days more than others. Unfortunately, that's still the case with the insurance issues.

Last week, my doctor had a conference call with another doctor and a couple nurses at my insurance company. They agreed I need to have care in order to prevent, and take care of, pressure sores and other needs. However, since I am not on the ventilator, just the diaphragm pacemaker, it doesn't need to be skilled care. However, that kind of care is considered comfort care, which isn't covered by my, or apparently any, plan.

The nursing home I'm planning to go to if nothing else works out also doesn't know if they can take me. I gave them my care needs, which I have in detail in a 30 page book, a few weeks ago. Now, they're unsure if they can take me with their other vent patients as I could be too much work for them. My caregivers laugh at that, but at least it shows they are making sure everyone gets adequate care. However, that means I may have to look at a facility much farther away from home, with just over a week to go.

At this point, all I have is that I do indeed need care, but can't find a way to get it. We are told in Matthew 6 to not worry about tomorrow, for today has enough worries of its own. That is definitely true, but increasingly difficult to remember. With trying to make sure to get ample time off my pressure sores, it's hard to get work done. When that work includes trying to stay at home, prioritizing is a real challenge.

It seems the main issue I keep running into is that the Diaphragmatic Pacemaker System (DPS) isn't understood. Yes, it allows me to be off the ventilator, but I'm still not breathing on my own. If my arm hits the wires just right, I'm not breathing unless it can be fixed or I'm put back on the vent. In the three years I've been using the DPS, that has happened several times. Therefore, I need caregivers skilled in the DPS and ventilator use. I still also need suctioned regularly, more than when I was on the vent, and continued chest treatment. No, the DPS doesn't have tubes that become disconnected, but it still has its own trouble.

By the next post, I need to have a solution, but unfortunately I won't be holding my breath. In order to do that, I would need the DPS turned off!

Ceilings

As a quadriplegic, I end up laying flat in bed a lot. While my caregivers do various cares, I don't have much more to look at other than the ceiling. Therefore, I get rather familiar with the ceiling of wherever I'm at for an amount of time.

I remember the bunks of Recreation Unlimited in Ohio, where CHAMP Camp used to be held, very well. They were made to resemble an unfinished structure with wood beams and plywood left exposed. Through the many years I attended camp in Ohio, I almost looked forward to the familiar ceiling view. I can easily remember the different knots and filled wholes with small differences in color from the surrounding wood. As I lay getting ready for bed, or getting up in the morning, I could listen to the campers getting their cares done while my familiar view of wood became burned in my memory.

Hospitals have entirely different ceilings depending on where you're at. Some are just plain drop ceilings with a smorgasbord of stuff sticking through the tiles. Ceiling vents are full of small wholes from one end to the other making for a great way to take up time by counting every dot. Hallways are lined with lights and tiles with the operating room being consumed by huge lights that can move at all angles.

Too many years ago, when I was in my mid-teens, I was Craig Hospital near Denver, CO. They are one of the top hospitals for spinal cord injuries in the country, and I was there to evaluate the seat on my wheelchair. Unfortunately, they didn't do some of my cares as I needed and I ended up with a collapsed lung. That meant I had to move from my friendly, apartment style room with bright, friendly tiled ceiling, to the general hospital in a room with four other patients. This was a dark room with tracks for curtains blocking wondering eyes. Directly across from me was a kid a couple years younger than me who had just been injured. He didn't know what to expect in this new life and was flat in bed frequently. One time when he was gone somewhere, friends came and taped a poster above his bed. When he returned, I could see him grin from ear to ear at the new scenery he had been given.

Of course, the most familiar ceiling of all for me is my room at home. I can quickly spot the shapes in the popcorn texture and know each scratch, and frequent spider webs, in the track for my lift. In the two decades I've lived here, it is definitely home. With just over two weeks left, it's still uncertain where I will be living after May 7. If I will get familiar with a new ceiling, I don't know. The unique perspective that God has given me wherever I'm at will continue.