In junior high I remember diagramming sentences. My teacher took us through what he called the three headed monster of the process. I didn't like facing the monster then and lately it seems like the creature has returned.
The last few months have very busy for work and it seems like I can never get ahead. Today for instance, most of my sitting time was spent getting billing out for last month's work. That is now finished, but as I type this at 7:30 in the evening, I have yet to touch my regular Monday morning assignments. When I sit up in another hour, I will finally be able to get it started. However, the ongoing projects that need work likely won't get touched, again, today. This is the first head of the monster.
Second is the head of funding frustration. Last week I talked about the wisdom of government funded insurance. In talking with my county DHS worker, she advised it would be better if I didn't work, at least not for pay. Yes, work can be frustrating (see head 1), but I would much rather be too busy than not doing anything. I do know other people with disabilities that only do some volunteer work, but I know some would much rather be working for a living. I'm thankful for what I can do and I cannot see myself sitting and laying around all day playing games.
My final head is just regular life with a major disability. Mom is once again spending her evening doing paperwork so my day caregivers can get funded. Earlier this evening my parents were discussing who had to do what and who could come with me during my council meeting at church tomorrow night. The last ten days or so have also needed a lot of suctioning to keep my lungs clear requiring more work from my parents at times we don't have help.
Rolling back though and looking at everything as one beast to tackle can seem like too much to handle. However, a slight glance elsewhere reveals the problems aren't bad. Bringing each and every item to God in prayer starts to tame the dragon.
None of my clients are getting too frustrated with my lack of speed in processing requests. I know I'm doing the tasks God has given me and have been for years. Political schemes change, but the king of kings is Lord of all. I've also been given a family that is very caring and willing to do what's needed to make our situation work.
It took the entire school year to tackle the diagramming monster, and this one will take time as well. In the last two months, two campers and one counselor from CHAMP Camp have been released from earthly cares. I can be thankful for the quad life I've been given and continue to run the race before me, being sure to jump the hurdles. Another week can bring a new set of circumstances and they will be tackled as they come.
Monday, November 2, 2015
Sunday, October 25, 2015
Wrapping up October
Today starts the last week of the month, and it has been a busy month. Tuesday will be my fourth school visit and finish what is currently planned. With more blessings than I can count, there have also been a few struggles.
For the most part, I'm liking the new trach button. I like having a free neck and the smaller profile of the button versus the trach. However, I've had a lot of drainage around it and we're cleaning around the area four times a day. With the trach, we only had to do once a day. The last few days have required a lot of suctioning (clearing out my lungs) due to a cold or something I have bugging me. It does work with the button, but not quite as easily and it does hurt my throat more. Hopefully the suctioning will return to normal soon.
Some good news, I am approved for Medicaid again. However, they added a stipulation that I need to pay over $200 per month in order to keep it. My main income is still Social Security with a little from working on web sites. September was my busiest month this year, and therefore I had more income from work. I pay myself a low rate and with it being busy, I still only had 25 hours for the entire month.
Even though my monthly average is well below last month's earnings, Medicaid based my monthly income solely on the last month. So as it currently stands, I will need to use a third of my income to pay for insurance that is for people like me that can't afford insurance. Using needs based income to cover needs based insurance just doesn't make sense. Now with monthly rent and uncovered medical expenses, it's going to be very difficult not to spend more than I receive. I'm well aware this what most people need to watch, but it still seems wrong.
As I tried to tell the kids in children's service today, we need to do things as God tells us, including not to worry. I know I say it often, but it's a hard one to do for me. I pray that next month will be calmer in the quad life, but I'm guessing it won't be a big change.
For the most part, I'm liking the new trach button. I like having a free neck and the smaller profile of the button versus the trach. However, I've had a lot of drainage around it and we're cleaning around the area four times a day. With the trach, we only had to do once a day. The last few days have required a lot of suctioning (clearing out my lungs) due to a cold or something I have bugging me. It does work with the button, but not quite as easily and it does hurt my throat more. Hopefully the suctioning will return to normal soon.
Some good news, I am approved for Medicaid again. However, they added a stipulation that I need to pay over $200 per month in order to keep it. My main income is still Social Security with a little from working on web sites. September was my busiest month this year, and therefore I had more income from work. I pay myself a low rate and with it being busy, I still only had 25 hours for the entire month.
Even though my monthly average is well below last month's earnings, Medicaid based my monthly income solely on the last month. So as it currently stands, I will need to use a third of my income to pay for insurance that is for people like me that can't afford insurance. Using needs based income to cover needs based insurance just doesn't make sense. Now with monthly rent and uncovered medical expenses, it's going to be very difficult not to spend more than I receive. I'm well aware this what most people need to watch, but it still seems wrong.
As I tried to tell the kids in children's service today, we need to do things as God tells us, including not to worry. I know I say it often, but it's a hard one to do for me. I pray that next month will be calmer in the quad life, but I'm guessing it won't be a big change.
Wednesday, October 21, 2015
Paperwork
We live in a world that has an ever increasing amount of resources online. Information can be transferred in an instant and with automation, approvals given automatically. Unfortunately, not everything works as quickly, and that is where problems can occur.
About a month ago, I received my annual form from Medicaid wanting my information and making sure I still qualify to receive it. I know the US Post Office (snail mail) can be slow, so I try to get it filled out quickly and sent back so I meet the deadlines. Sometimes they require more detailed information on my income, but not always.
Two weeks later, I received another letter requesting copies of my latest bank statement and income from work. This letter had a stamp of October 6 on the envelope when it went through the Des Moines Post Office. My information was copied and sent as requested. I received another letter, with a date of October 5, saying my Medicaid had been denied for not giving all paperwork.
Therefore, I was denied for not providing paperwork I hadn't been asked to provide. It's one of the wonderful results of snail mail and living in a state that is trying to save money by reducing Medicaid expenses and ship the governance of the program to another state.
Without Medicaid, I won't have funding for my day nurses, dentist, and several other medical expenses. I have it until November 1, so I'm praying my case will be reviewed before then and everything will continue as is. Unfortunately, basically the same thing happened last year, but I was re-enrolled already before receiving my denial letter. Fun with funding never seems to cease.
As I said last week, I have enjoyed many blessings lately and am thankful for them. God knows what I need, well before I even ask for it. In this matter, I know it isn't any different and will work out in due time. A large part of the quad life is relying on God's plan and timing, especially with annoying politics.
About a month ago, I received my annual form from Medicaid wanting my information and making sure I still qualify to receive it. I know the US Post Office (snail mail) can be slow, so I try to get it filled out quickly and sent back so I meet the deadlines. Sometimes they require more detailed information on my income, but not always.
Two weeks later, I received another letter requesting copies of my latest bank statement and income from work. This letter had a stamp of October 6 on the envelope when it went through the Des Moines Post Office. My information was copied and sent as requested. I received another letter, with a date of October 5, saying my Medicaid had been denied for not giving all paperwork.
Therefore, I was denied for not providing paperwork I hadn't been asked to provide. It's one of the wonderful results of snail mail and living in a state that is trying to save money by reducing Medicaid expenses and ship the governance of the program to another state.
Without Medicaid, I won't have funding for my day nurses, dentist, and several other medical expenses. I have it until November 1, so I'm praying my case will be reviewed before then and everything will continue as is. Unfortunately, basically the same thing happened last year, but I was re-enrolled already before receiving my denial letter. Fun with funding never seems to cease.
As I said last week, I have enjoyed many blessings lately and am thankful for them. God knows what I need, well before I even ask for it. In this matter, I know it isn't any different and will work out in due time. A large part of the quad life is relying on God's plan and timing, especially with annoying politics.
Tuesday, October 13, 2015
Going Strapless
For over 30 years, I have had a tracheostomy (trach) and ties around my neck to keep it in place. When you use a traditional ventilator for breathing, this is your primary option for getting air into your lungs comfortably. However, I have now gone strapless.
Since I started using the diaphragm pacemaker system in 2010, I have capped off my trach and breathed through my nose and mouth. Since I was still using the vent part-time, this worked well. It has now been about two years since I used the vent and other than clearing my lungs by suctioning, the trach has stayed capped.
One of the problems with having a trach long-term is that it can rub the inside of the throat. There is also a major artery nearby that can be rubbed through causing major, to total, blood loss in a very short amount of time. I've been feeling a lot rubbing the past few months and was causing a sore throat. With this in mind, I made a switch this past Friday.
After a short doctor's visit, he replaced the trach with a trach button. The button is similar to what I had in that it's capped off and allows me to breath normally. We can also uncap it in order to clear out my lungs. The main differences are that it is about a quarter of the length of the trach and it keeps itself in place.
It has felt great getting rid of the rubbing in my throat, but I'm still getting used to having a bare neck. Shirt collars rubbing feel really strange and it sometimes makes me feel like the trach is going to pop out without the ties in place. I've had a lifetime of getting used to the old method and four days for the new, so I think it will take time to adjust. I mainly keep it under my shirt as well, so not many others notice the change.
Through the last few months, I have had several large blessings; getting a new chair after several years work, seeing my very good friend for the first time in many years, and now this. I'm thankful for the good things God has given me, but wonder what trials await.
I'm scheduled to see my doctor again in November and we'll see if the button stays or the trach returns. Until then, I enjoy the new freedom in the quad life.
Since I started using the diaphragm pacemaker system in 2010, I have capped off my trach and breathed through my nose and mouth. Since I was still using the vent part-time, this worked well. It has now been about two years since I used the vent and other than clearing my lungs by suctioning, the trach has stayed capped.
After a short doctor's visit, he replaced the trach with a trach button. The button is similar to what I had in that it's capped off and allows me to breath normally. We can also uncap it in order to clear out my lungs. The main differences are that it is about a quarter of the length of the trach and it keeps itself in place.
It has felt great getting rid of the rubbing in my throat, but I'm still getting used to having a bare neck. Shirt collars rubbing feel really strange and it sometimes makes me feel like the trach is going to pop out without the ties in place. I've had a lifetime of getting used to the old method and four days for the new, so I think it will take time to adjust. I mainly keep it under my shirt as well, so not many others notice the change.
Through the last few months, I have had several large blessings; getting a new chair after several years work, seeing my very good friend for the first time in many years, and now this. I'm thankful for the good things God has given me, but wonder what trials await.
I'm scheduled to see my doctor again in November and we'll see if the button stays or the trach returns. Until then, I enjoy the new freedom in the quad life.
Monday, October 5, 2015
Chilling Down
The last few days have had a definite decrease in temp across Iowa, and I don't like. Thursday was a day to ride bike in Des Moines, and shorts are required in order to get the electrodes placed. The morning was just in the 50's, but it didn't feel bad if I stayed in the sun.
As I rolled up to the hospital entrance, a man wearing jeans and a sweatshirt walks out. He looks at me, wearing a jacket and nothing from knees down, and just slowly shakes his head as he walks off. Unfortunately, I'm guilty of similar treatment of others.
There have been several times over the years that I have seen people wearing shorts in what I considered cold weather (30° or less). I've wondered in my head how they could stay warm in such an outfit. Not knowing the reasoning for my choice of wardrobe, the sweatshirt man at the hospital was likely wondering the same. I think there's a lesson to be learned from this experience.
Friday was my first school talk for the year and it was another chilly start to the day. This school was two classes of second graders, about 10-11 per class. The first one had won a party day and everyone got to wear their pajamas for school. I can't say I've ever spoken to a class in pajamas before, but it was fun. Both classes were pretty calm compared to some I've had, but they still asked good questions and seemed to be catching on.
With being out on cool days Thursday and Friday, I was cold even in the house Saturday. Going to church Sunday didn't help with waking up to 42° on my outdoor thermostats. I kept the sheet and blanket on all afternoon yesterday and this morning as well. I finally warmed up about lunch time today, but am starting to feel the chill again, even at 75° in my room.
Every year is an adjustment period as the weather changes from warm summer to cold winter. Temps in the 50°-60° range feel chilly now, but will feel nice and warm come March next year. I'm thankful to be living in a warm house though and able to remain active in the community, even if this quad body complains.
As I rolled up to the hospital entrance, a man wearing jeans and a sweatshirt walks out. He looks at me, wearing a jacket and nothing from knees down, and just slowly shakes his head as he walks off. Unfortunately, I'm guilty of similar treatment of others.
There have been several times over the years that I have seen people wearing shorts in what I considered cold weather (30° or less). I've wondered in my head how they could stay warm in such an outfit. Not knowing the reasoning for my choice of wardrobe, the sweatshirt man at the hospital was likely wondering the same. I think there's a lesson to be learned from this experience.
Friday was my first school talk for the year and it was another chilly start to the day. This school was two classes of second graders, about 10-11 per class. The first one had won a party day and everyone got to wear their pajamas for school. I can't say I've ever spoken to a class in pajamas before, but it was fun. Both classes were pretty calm compared to some I've had, but they still asked good questions and seemed to be catching on.
With being out on cool days Thursday and Friday, I was cold even in the house Saturday. Going to church Sunday didn't help with waking up to 42° on my outdoor thermostats. I kept the sheet and blanket on all afternoon yesterday and this morning as well. I finally warmed up about lunch time today, but am starting to feel the chill again, even at 75° in my room.
Every year is an adjustment period as the weather changes from warm summer to cold winter. Temps in the 50°-60° range feel chilly now, but will feel nice and warm come March next year. I'm thankful to be living in a warm house though and able to remain active in the community, even if this quad body complains.
Tuesday, September 29, 2015
Committment
It's rare that I take more than one vacation er year, but it happened this past weekend. In June I was able to visit the Creation Museum and CHAMP Camp and this most recent to northern Indiana. A friend of mine, Jeff, had a commitment ceremony.
Jeff does not have a spinal cord injury like me, but he does have similar needs. He is unable to use his arms or legs, requires mechanical breathing, and uses Medicaid for funding. If he, or I, got married officially according to the state, he would no longer qualify for Medicaid and couldn't receive medical funding. Therefore, this ceremony was the same as a wedding in that the couple vows lifelong commitment to each other, but without the state paperwork.
The ceremony was definitely unique for weddings I have previously attended. This was much more laid back and "play it by ear" than I've experienced. I was the best man for Jeff and his younger brother stood with us as well, when he wasn't tending the music. I'm glad I was able to support Jeff in his milestone of his life and pray for many happy years ahead for he and his wife.
Last week, I wrote about Ken and the unexpected turn of events he had. Unfortunately, he is still in the hospital in Iowa City, so we stopped to visit him on our way home. Thankfully, he is able to somewhat speak again, but it looks like their will be a long road to recovery yet. My experience required two weeks in the hospital and I'm guessing it may be similar for Ken.
Unfortunately, I have a lot of experience of not having many friends outside of family. When you live with a severe disability, it is hard for people to understand the challenges of daily living and often shy away. Past birthday parties have mainly been relatives with one to two friends able to come. For these two friends, I'm glad that I have been given the ability to sit alongside them in times of celebration and struggle.
In the quad life, and every life, we need to be thankful for those God has put around us. May we all have someone to turn to for all occasions in life.
Jeff does not have a spinal cord injury like me, but he does have similar needs. He is unable to use his arms or legs, requires mechanical breathing, and uses Medicaid for funding. If he, or I, got married officially according to the state, he would no longer qualify for Medicaid and couldn't receive medical funding. Therefore, this ceremony was the same as a wedding in that the couple vows lifelong commitment to each other, but without the state paperwork.
 |
| Groom and I waiting to roll in. |
Last week, I wrote about Ken and the unexpected turn of events he had. Unfortunately, he is still in the hospital in Iowa City, so we stopped to visit him on our way home. Thankfully, he is able to somewhat speak again, but it looks like their will be a long road to recovery yet. My experience required two weeks in the hospital and I'm guessing it may be similar for Ken.
Unfortunately, I have a lot of experience of not having many friends outside of family. When you live with a severe disability, it is hard for people to understand the challenges of daily living and often shy away. Past birthday parties have mainly been relatives with one to two friends able to come. For these two friends, I'm glad that I have been given the ability to sit alongside them in times of celebration and struggle.
In the quad life, and every life, we need to be thankful for those God has put around us. May we all have someone to turn to for all occasions in life.
Tuesday, September 22, 2015
Schedule Change
I had on my calendar for today a trip north to Waterloo. Ken is a friend and has been a fellow quadriplegic for about 25 years. For the past 15 years, he has been forced to live in a nursing home in Waterloo.
About two years ago, a church started visiting him regular and today we were going to see Ken's baptism. This was an answer to prayer and I was glad to be able to see this milestone in his life. Unfortunately, another one of the unexpected times popped up last week, but not for me.
Last week Ken was rushed for emergency surgery for colon trouble and is still in the hospital today. In 2010, I had similar problems while working at CHAMP Camp in Ohio.
My belly looked like I had swallowed a watermelon whole. The head medical people sent me off to the hospital where I had surgery for a kinked bowel at 1:00 in the morning. For nearly the next two weeks I stayed in the hospital with an NG tube in my nose and unable to eat, but still watch TV with food commercials.
Since he has been in the hospital, I haven't been able to speak with Ken, but have communicated through friends and relatives. I'm praying he'll have a shorter stay than I did, but I'm guessing he's in a similar situation.
In Matthew 6 we're told not to worry about tomorrow, for today has enough trouble of its own. I see that pretty well every day, but especially when times like this arise. We will most likely plan another day for baptism, but that will be some time in the future.
Whether you're living the quad life or not, live each day to the most you've been given, for you don't know what tomorrow will bring.
About two years ago, a church started visiting him regular and today we were going to see Ken's baptism. This was an answer to prayer and I was glad to be able to see this milestone in his life. Unfortunately, another one of the unexpected times popped up last week, but not for me.
Last week Ken was rushed for emergency surgery for colon trouble and is still in the hospital today. In 2010, I had similar problems while working at CHAMP Camp in Ohio.
My belly looked like I had swallowed a watermelon whole. The head medical people sent me off to the hospital where I had surgery for a kinked bowel at 1:00 in the morning. For nearly the next two weeks I stayed in the hospital with an NG tube in my nose and unable to eat, but still watch TV with food commercials.
Since he has been in the hospital, I haven't been able to speak with Ken, but have communicated through friends and relatives. I'm praying he'll have a shorter stay than I did, but I'm guessing he's in a similar situation.
In Matthew 6 we're told not to worry about tomorrow, for today has enough trouble of its own. I see that pretty well every day, but especially when times like this arise. We will most likely plan another day for baptism, but that will be some time in the future.
Whether you're living the quad life or not, live each day to the most you've been given, for you don't know what tomorrow will bring.
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