Last week I talked about why I didn't work at camp this year. However, we did decide to go up for visit day, which was Tuesday. The entire trip ended up being about eighteen hours of travel for about four hours of visiting, but it was a great trip. In that short time, I was able to visit with several of my friends, meet a few of the new campers, and even go on the new zip line they had this year. I'm thankful that it worked out and that my dad especially was willing to do so much driving in a short time period.
Between Iowa and Indianapolis, IN, where camp is now held, there is not much other than farm fields and small towns. Since 2003, I have made ten trips to CHAMP Camp, in Ohio and Indiana, one to Chicago to get my DPS, and one to Toronto to be best man in my best friend's wedding. Through these excursions, I have become familiar with traveling in the Midwest and the ubiquitous corn field, and uniqueness of certain areas.
I have lived in Iowa all my life, but when passing some small towns, I wonder what it would be like to live there. Let's take Danville, IN for an example, one of the towns we drove through. It had many nice looking older homes, along with some that weren't, and appeared to be a typical small Midwestern town. I liked that it had a train track going through it, but what differences does it have from my town, or how is it the same? Along this same road were several houses that peaked our interest and made us wonder how the inside looked.
Another town, or small city, we passed through was Peoria, IL. Driving through, it looks similar to Des Moines, but perhaps a little smaller. The three years I lived in Des Moines the city became very familiar to me and did not seem as big at first. From the interstate, all I could see were large buildings and parking garages, not anything that particular grabbed my interest. However, if living there, I wonder what it would feel like after a short time and if it would begin to feel like home.
My mind wonders while traveling, and if I had unlimited medical funds and could live anywhere I've seen, I consider my choices. In the end, I prefer my roots of small town Iowa, but getting to know a new community, and state, could be an interesting experience, at least for a short time.
Monday, June 30, 2014
Sunday, June 22, 2014
CHAMP Camp 2014
Today is the official start of CHAMP Camp 2014, and I'm missing it. Due to the insurance trouble and not knowing what would be going on this week, I let my application be withdrawn. Yesterday was counselor orientation and today marks camper arrival, likely as I'm typing this. It has been fun to at least see pictures on Facebook from camp friends. After 19 years of going to camp, seven years as a camper, you would think a break would be welcome.
As a child growing up and now an adult with a severe disability, you're unfortunately not seen as an equal to your peers. During school activities, let's say sports in P.E. class, you're made to be a referee or base manager. When you're the only person in class who uses a wheelchair, this is somewhat of a safety factor, kids running for a ball could easily run into you, or be ran over, and injure themselves. Whatever the reasoning, you don't feel part of the action. For activities in a class when you're told to work together, I often had to be assigned to a group to work on a project.
I would like to say it's different as an adult, but that's unfortunately not the case. People tend to address the person I'm with instead of me, especially medical personal, and you're not thought of as an individual that contributes to society. I work to change this stereotype, but only one person can reach so many people. At CHAMP Camp, the real world is a distant memory.
Kids participate in EVERY activity, no matter what their challenges are. I remember my first year of camp, the last evening, having a squirt gun fight between the boys' and girls' cabins. Before then, I had never done anything close to it, but it just takes people that know where the water can and can't go. Parts of the chest, and especially the head, are great targets, just stay clear of the trach and electronics, like the ventilator. Being treated as a normal kid that could do everything like everybody else was a great experience. Going back as an adult is similar as my camper years.
New counselors, especially those in school in health related fields, look to me for guidance and how to do things. My fellow long-term counselors know that I help in different ways and let me do what I can. I can't do the camper's medical cares, but I can help to occupy one, or more, while another is getting something done. For the kids that have similar needs to mine, we work on how to deal with regular life, bug nurses (a.k.a. assistants or personal care attendants), or just shoot the breeze. As the camp orientation packet says, isn't it too bad the real world isn't like this?
One of my camp friends, a fellow alumni camper turned counselor, says it's his favorite week of the year. With all the memories, friends, and unique experiences, I feel pretty close to the same. Hopefully next year things will straighten out so that I can continue to make memories and help kids.
As a child growing up and now an adult with a severe disability, you're unfortunately not seen as an equal to your peers. During school activities, let's say sports in P.E. class, you're made to be a referee or base manager. When you're the only person in class who uses a wheelchair, this is somewhat of a safety factor, kids running for a ball could easily run into you, or be ran over, and injure themselves. Whatever the reasoning, you don't feel part of the action. For activities in a class when you're told to work together, I often had to be assigned to a group to work on a project.
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| Three counselors welcome a camper in 2013 |
Kids participate in EVERY activity, no matter what their challenges are. I remember my first year of camp, the last evening, having a squirt gun fight between the boys' and girls' cabins. Before then, I had never done anything close to it, but it just takes people that know where the water can and can't go. Parts of the chest, and especially the head, are great targets, just stay clear of the trach and electronics, like the ventilator. Being treated as a normal kid that could do everything like everybody else was a great experience. Going back as an adult is similar as my camper years.
New counselors, especially those in school in health related fields, look to me for guidance and how to do things. My fellow long-term counselors know that I help in different ways and let me do what I can. I can't do the camper's medical cares, but I can help to occupy one, or more, while another is getting something done. For the kids that have similar needs to mine, we work on how to deal with regular life, bug nurses (a.k.a. assistants or personal care attendants), or just shoot the breeze. As the camp orientation packet says, isn't it too bad the real world isn't like this?
One of my camp friends, a fellow alumni camper turned counselor, says it's his favorite week of the year. With all the memories, friends, and unique experiences, I feel pretty close to the same. Hopefully next year things will straighten out so that I can continue to make memories and help kids.
Monday, June 16, 2014
Father's Day 2014
Yesterday was the day marked to celebrate fathers. For several years, Father's Day was often the day that CHAMP Camp started, so dad either was able to get a week's vacation from me or stuck with me as my assistant. Fortunately, a change in schedule a few years ago meant we could observe it.
My father has been through a lot over the years. At 27, he suddenly had a young son with a severe disability. Since mom can't do all my needs, a lot is up to him when we don't have a nurse. He has also worked for many years, and paid a lot financially, at a high-stress job so I can have insurance. Many people I know with disabilities like mine, or fewer, don't have a father figure in their life.
I'm very thankful for mine and all that he has done for me. He learned how to take care of me at a time when there was no instant connection to people around the world in similar situations. He has done very well and I'm thankful to have him.
When I think of Father's Day, I also wonder I would have been like as a father. I would have loved to be able to bring up my own child(ren) and teach them about being a Christian and trusting in God's Word. Children that grow up with a parent with a disability tend to be more helpful to others and treat others with disabilities as any other person, at least from what I've read and seen. My kid(s) would also have little to do with footwear
Some nights after dad and I have had our boys' group at church, I could easily see taking one, or two, home and putting them to bed for the night. Other evenings, I can't wait to get them out the door back to their parents, as I know some parents feel. Unless the Lord has some major changes planned for me, I'll continue to teach kids through church and school and work with them as I'm given opportunity.
My father has been through a lot over the years. At 27, he suddenly had a young son with a severe disability. Since mom can't do all my needs, a lot is up to him when we don't have a nurse. He has also worked for many years, and paid a lot financially, at a high-stress job so I can have insurance. Many people I know with disabilities like mine, or fewer, don't have a father figure in their life.
I'm very thankful for mine and all that he has done for me. He learned how to take care of me at a time when there was no instant connection to people around the world in similar situations. He has done very well and I'm thankful to have him.
When I think of Father's Day, I also wonder I would have been like as a father. I would have loved to be able to bring up my own child(ren) and teach them about being a Christian and trusting in God's Word. Children that grow up with a parent with a disability tend to be more helpful to others and treat others with disabilities as any other person, at least from what I've read and seen. My kid(s) would also have little to do with footwear
Some nights after dad and I have had our boys' group at church, I could easily see taking one, or two, home and putting them to bed for the night. Other evenings, I can't wait to get them out the door back to their parents, as I know some parents feel. Unless the Lord has some major changes planned for me, I'll continue to teach kids through church and school and work with them as I'm given opportunity.
Monday, June 9, 2014
Flat, Sideways World
Trying to accommodate a body that I can't control or really feel can be a challenge, especially when dealing with major skin problems. However, it is something that comes with the quad life and must be done. A few weeks ago, I started getting a headache and very stiff muscles after sitting for a short time, so I took the clue that I need to try to get down even more.
Fortunately, last month was very slow for work, only totaling nine-hours, but I still had things to do. Laying flat on my back or on my side for a couple hours is a great opportunity to nap, but I can only do that so much. With necessity being the mother of invention, I have learned that old quads can learn new tricks.
While laying on my side, my nurses and I have worked it so that I can read a magazine, book, or run a Kindle with a special mouth stick. I have never been much of a reader, but these last few months have seen me doing a lot. A magazine I subscribe to comes quarterly, and I used to barely finish one before the next one came. With the latest issue, I finished it well over a month before the next one comes and have started on a few books I've had for a few years but haven't touched. Learning to read at an angle took time, but I'm pretty used to it now. Maybe pressure sores are the key to finally getting me to read. Laying flat has also produced new tricks.
When on my computer, like right now, I'm usually sitting in my bed or my chair. However, I'm now also working on it while flat. I started out by just watching episodes of Macgyver and having the keyboard within reach to change episodes when one finished. That developed into adding my wireless mouse in the mix and learning how to work it while flat. I try to do as much as possible via keyboard and have learned a few more keyboard shortcuts, but it does work. Instead of just watching TV episodes or movies I can also play a few games and email people.
The only remaining problem is being able to see what I'm doing. When I'm flat, the computer screen is past my feet, so at least five feet away from my face, further away than my nearsightedness lets me read. In bed, I'm usually fine without my glasses, but they may become an addition to the laying flat routine. I've learned even if you can't move or lay in a good position, you can still do things if you really want.
Fortunately, last month was very slow for work, only totaling nine-hours, but I still had things to do. Laying flat on my back or on my side for a couple hours is a great opportunity to nap, but I can only do that so much. With necessity being the mother of invention, I have learned that old quads can learn new tricks.
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| Reading a Magazine |
When on my computer, like right now, I'm usually sitting in my bed or my chair. However, I'm now also working on it while flat. I started out by just watching episodes of Macgyver and having the keyboard within reach to change episodes when one finished. That developed into adding my wireless mouse in the mix and learning how to work it while flat. I try to do as much as possible via keyboard and have learned a few more keyboard shortcuts, but it does work. Instead of just watching TV episodes or movies I can also play a few games and email people.
The only remaining problem is being able to see what I'm doing. When I'm flat, the computer screen is past my feet, so at least five feet away from my face, further away than my nearsightedness lets me read. In bed, I'm usually fine without my glasses, but they may become an addition to the laying flat routine. I've learned even if you can't move or lay in a good position, you can still do things if you really want.
Saturday, June 7, 2014
Help from Friends
No, this isn't my regular blog day, but I wanted to give an update on this week's insurance progress. Through guidance from a friend at the Christopher Reeve Foundation, we sent another letter to Senator Harkin late Tuesday. By Wednesday morning, his staff called that they needed some information from me and would be talking with insurance that day.
Friday morning, I was told that an outside doctor would be reviewing my case to evaluate my needs. During the appeal process, my coverage would again be extended. It isn't certain, but the extension could be as long as another month.
Close to the end of the day Friday, I received a call from insurance confirming what I had been told. They also wanted the name of the doctor I wanted the reviewer to work with. That was an easy choice, so the information was given and they will schedule an interview time, likely next week.
I'm thankful that we again have another extension with insurance. However, now it will be up to this next round of evaluation to see what happens. God has surrounded me with friends and family all my life that I can't begin to thank enough. Through all this process, they have shown to be even more valuable. I just hope I can return the favor some day.
Friday morning, I was told that an outside doctor would be reviewing my case to evaluate my needs. During the appeal process, my coverage would again be extended. It isn't certain, but the extension could be as long as another month.
Close to the end of the day Friday, I received a call from insurance confirming what I had been told. They also wanted the name of the doctor I wanted the reviewer to work with. That was an easy choice, so the information was given and they will schedule an interview time, likely next week.
I'm thankful that we again have another extension with insurance. However, now it will be up to this next round of evaluation to see what happens. God has surrounded me with friends and family all my life that I can't begin to thank enough. Through all this process, they have shown to be even more valuable. I just hope I can return the favor some day.
Sunday, June 1, 2014
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.
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.
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