Stix n Brix, NC
Today is my one day off instead of the usual 7 days off. My new "work all the time" schedule starts tomorrow. I've worked the old schedule for so long that my body will physically have a hard time adjusting to a month of day shifts and then a month of night shifts. The old schedule went something like this; 4 nights, off 3, 3 days, off 1, 3 nights, off 3, 4 days and then off a glorious 7 days! These are all 12 hour shifts. It was alot of flipping back and forth but it was well worth it to get a week off every month without taking time off.
The new schedule is 2 on, 2 off, 3 on, 2 off, 2 on, 3 off, 2 on, 2 off, 3 on, 2 off, 2 on, 3 off. These are also 12 hour shifts. I'm not looking forward to a month of night shifts, but I don't like getting up real early for a month of day shifts either. So if you ever encounter a grumpy cop, just remember that they don't know if they are coming or going. Oh well, at least I'll only have to work it for a few months before I retire!
On this schedule, we won't be taking the MH to the beach or lake or anywhere other than the RV-Dreams Rally in April. We will use our time here at the house to get rid of stuff and put it on the market. That's looking on the bright side of things, isn't it. We try do see things in a positive light as often as possible. I have always thought that a person chooses to be happy. Life dishes out some tuff stuff sometimes, but it's all about how we handle it. Many years ago when Gin was diagnosed with MS and could no longer work, we chose to think positive. Sure we would have less money, but we would have more time together than most couples. I know many couples out there who barely see each other during their working lives and upon retirement, find that they hardly know one another. Throw in a totally incompatible work schedule, and it's no wonder that divorce is rampant with military and emergency personnel. Well time for me to do a few things before I go to work early tomorrow.
Thanks for dropping by, and enjoy each day of your life's journey by finding beauty in the ordinary.
Showing posts with label multiple sclerosis. Show all posts
Showing posts with label multiple sclerosis. Show all posts
Friday, January 14, 2011
Monday, October 11, 2010
Treatment and Regionalisms
Stix n Brix
Clayton, NC
Welcome to a whole slew of new followers - Kimberly & Jerry, Margie, Jessica, Msucheermom, and Emery. The blog family is expanding again.
Today was Gin's last day of the monthly IV treatment, Tysabri. She has taken it for about 3 years with a one year hiatus. There really is no information about it's long-term effects. She has gotten some benefits from it but she is afraid that the odds of serious side effects may catch up with her. She also is just plain tired of scheduling her life around medications and wants to cut back where she can. She will of course keep taking oral medications for spasticity and pain which are the main treatable symptoms of her MS.
While she is hooked up to the IV drip, it helps to have something to snack on like a pack of nabs. I didn't realize that the snack crackers were called anything other than "nabs" until we met some folks from Philly who had no clue what we were talking about. They can be peanut butter crackers or cheese crackers. It doesn't matter, they are still "nabs". Soft drinks are also referred to as "sodas" here in the South. I'm familiar with the terms "pop" and "cola" but they are usually spoken by transplants to the area. Raleigh has a lot of them. I met one today while Gin was in for treatment. He was a black man from New York and he had no idea what barbeque was.
A brief history about barbeque: Pigs have always been a staple in the Southern diet. There are still wild pigs in some rural areas in the South. The phrase "living high on the hog" has a literal basis. The good cuts of pork (ham, loins, etc) are located higher on the hog. The ribs and shoulders and other less desirable cuts of pork were leftovers that the slaves had while the plantation owners would eat "high on the hog" so the slaves developed a way of cooking these cuts to make a very delicious meal.
Anyway... this fella was in the waiting room watching the Travel Channel on tv along with myself and another couple. The show's topic was Southern barbeque. After cooking the pig they pulled out some meat and started chopping it with cleavers and this guy was so surprised by that. He just about shouted "What are they doing to that meat?" I gently said "That's how you make barbeque. You're not from here, are you?" Nope, he's from New York and has lived in the area for about a year. I told him where a local restaurant is where he can try some. He said it looked like it would be good on a hoagie with some cheese. I gave him a strange look and he knew that was not a good combo. It should be bbq and slaw...nothing else on your sandwich. I hope he tries it.
I'm looking forward to trying ribs in Memphis and beef brisket in Texas. There are so many other regional foods to try out there but I do have to watch my weight. I think the spicy Southwestern foods might be a challenge for my tender belly, but I'll try a milder version of it.
Thanks for dropping by, and enjoy each day of your life's journey by finding beauty in the ordinary.
Clayton, NC
Welcome to a whole slew of new followers - Kimberly & Jerry, Margie, Jessica, Msucheermom, and Emery. The blog family is expanding again.
Today was Gin's last day of the monthly IV treatment, Tysabri. She has taken it for about 3 years with a one year hiatus. There really is no information about it's long-term effects. She has gotten some benefits from it but she is afraid that the odds of serious side effects may catch up with her. She also is just plain tired of scheduling her life around medications and wants to cut back where she can. She will of course keep taking oral medications for spasticity and pain which are the main treatable symptoms of her MS.
A brief history about barbeque: Pigs have always been a staple in the Southern diet. There are still wild pigs in some rural areas in the South. The phrase "living high on the hog" has a literal basis. The good cuts of pork (ham, loins, etc) are located higher on the hog. The ribs and shoulders and other less desirable cuts of pork were leftovers that the slaves had while the plantation owners would eat "high on the hog" so the slaves developed a way of cooking these cuts to make a very delicious meal.
Anyway... this fella was in the waiting room watching the Travel Channel on tv along with myself and another couple. The show's topic was Southern barbeque. After cooking the pig they pulled out some meat and started chopping it with cleavers and this guy was so surprised by that. He just about shouted "What are they doing to that meat?" I gently said "That's how you make barbeque. You're not from here, are you?" Nope, he's from New York and has lived in the area for about a year. I told him where a local restaurant is where he can try some. He said it looked like it would be good on a hoagie with some cheese. I gave him a strange look and he knew that was not a good combo. It should be bbq and slaw...nothing else on your sandwich. I hope he tries it.
I'm looking forward to trying ribs in Memphis and beef brisket in Texas. There are so many other regional foods to try out there but I do have to watch my weight. I think the spicy Southwestern foods might be a challenge for my tender belly, but I'll try a milder version of it.
Thanks for dropping by, and enjoy each day of your life's journey by finding beauty in the ordinary.
Wednesday, June 16, 2010
Where's the Cape?
Stix n Brix, NC
It's been pretty much the same stuff, different day for me here. While I've been working night shift the past few nights, Gin has been helping her folks. They had a huge yard sale Saturday (100 degrees) and have been clearing things out of the backyard office building in order to turn it in to a small apartment for Nick and Becca (the grandson and his girlfriend). Their baby is due in a couple of weeks so there seems to be a deadline. It'll be nice for Gin's folks to have a small apartment there for later in life should they find a reliable person to maintain the yard and help out a little when they have a hard time taking care of things. Can you say workcamping location?
Gin amazes me. She really pushed herself while we were in the mountains and she pushed herself even more while helping her folks. When she came home, I could tell that she was truly exhausted. Her MS has pushed her around a bit but she has pushed it right back. I've been looking for her cape for the past several years but can't find it. What cape? Her Wonder Woman cape, of course. :) She may go back to help her folks again this week end while I work day shift. It depends how much the plumber gets done.
It's been so hot and humid here that I hate to go outside, but I've got some errands to run. Check back later.
It's been pretty much the same stuff, different day for me here. While I've been working night shift the past few nights, Gin has been helping her folks. They had a huge yard sale Saturday (100 degrees) and have been clearing things out of the backyard office building in order to turn it in to a small apartment for Nick and Becca (the grandson and his girlfriend). Their baby is due in a couple of weeks so there seems to be a deadline. It'll be nice for Gin's folks to have a small apartment there for later in life should they find a reliable person to maintain the yard and help out a little when they have a hard time taking care of things. Can you say workcamping location?
Gin amazes me. She really pushed herself while we were in the mountains and she pushed herself even more while helping her folks. When she came home, I could tell that she was truly exhausted. Her MS has pushed her around a bit but she has pushed it right back. I've been looking for her cape for the past several years but can't find it. What cape? Her Wonder Woman cape, of course. :) She may go back to help her folks again this week end while I work day shift. It depends how much the plumber gets done.
It's been so hot and humid here that I hate to go outside, but I've got some errands to run. Check back later.
Saturday, April 17, 2010
HMO's and being sick
Stix n Brix
Well it turned out that Gin didn't have her treatment. Her Medicaid coverage recently changed. For some governmental reason, she has to go to a new general practitioner before she can go to her treatments or see her neurologist that she has been going to for over 20 years. I guess it's a kind of HMO. So now she'll go to her new doc in the middle of May. Her last treatment was in early March and it should be done every four weeks. The doctor's offices couldn't just discuss this over the phone to make an exception. Sure hope she doesn't have to go through this every month. This new HMO set up has her stressing about our dream to go full-time next fall. Medicare is Federal coverage and shouldn't be much of a problem but Medicaid is State coverage. They pay what Medicare doesn't cover. Her treatments and prescriptions are expensive. We feel a little frustrated but what can you do.
So instead of treatment on Thursday, we spent the day doing yard work. Gin burned off a little bit of yard debris while I cut the grass, edged the driveway and sidewalk, moved a woodpile, put down some concrete blocks to park the mower on and laid out some new sod in the front yard so that it will hopefully look better next year when we put the house on the market. I was sore but it now looks like someone actually lives here. I had a very bad night Thursday night. I woke up about 1:30 very, very sick. I never throw up, well maybe once every 20 years or so. This time, it was both. I was up the rest of the night and I didn't know whether to sit on the toilet or hug it for dear life. I was so weak Friday that I even called out of work Friday night. I feel much better now but definitely not 100%. I plan to go to work tonight. Sometimes ya just gotta do it.
Well it turned out that Gin didn't have her treatment. Her Medicaid coverage recently changed. For some governmental reason, she has to go to a new general practitioner before she can go to her treatments or see her neurologist that she has been going to for over 20 years. I guess it's a kind of HMO. So now she'll go to her new doc in the middle of May. Her last treatment was in early March and it should be done every four weeks. The doctor's offices couldn't just discuss this over the phone to make an exception. Sure hope she doesn't have to go through this every month. This new HMO set up has her stressing about our dream to go full-time next fall. Medicare is Federal coverage and shouldn't be much of a problem but Medicaid is State coverage. They pay what Medicare doesn't cover. Her treatments and prescriptions are expensive. We feel a little frustrated but what can you do.
So instead of treatment on Thursday, we spent the day doing yard work. Gin burned off a little bit of yard debris while I cut the grass, edged the driveway and sidewalk, moved a woodpile, put down some concrete blocks to park the mower on and laid out some new sod in the front yard so that it will hopefully look better next year when we put the house on the market. I was sore but it now looks like someone actually lives here. I had a very bad night Thursday night. I woke up about 1:30 very, very sick. I never throw up, well maybe once every 20 years or so. This time, it was both. I was up the rest of the night and I didn't know whether to sit on the toilet or hug it for dear life. I was so weak Friday that I even called out of work Friday night. I feel much better now but definitely not 100%. I plan to go to work tonight. Sometimes ya just gotta do it.
Friday, March 5, 2010
...but the Main Reason
Stix n Brix
LIFE IS TOO SHORT!!
I've tried to compose this post in my head for a few days now but I'm not sure how well the words will come out. When I say that we try to take one day at a time because each good day is truly a blessing, I feel that we have had an earlier awakening to that fact than many people that we know. I have led a very blessed life and couldn't be happier with where my journey has taken me. Gin's MS has made for a bumpy ride at times. She is a very strong-willed person and has pushed through a lot. I want to share some of her journey.
She was going through life as any normal person does...taking tomorrow for granted...when suddenly one day, the left side of her body went completely numb and very weak. It was January 1990 and she was just 26 years old. It was as if she had a stroke. She was using a walker just to get around. She went to a neurologist and had some tests done. It was Multiple Sclerosis. It's an autoimmune disease which means that the body's immune system mistakenly attacks normal tissue. In the case of MS, that tissue is the myelin sheath which covers and insulates the nerve fibers of the central nervous system. The brain sends the signals to your body to do a certain thing, but the pathway is interrupted so that the signal is not received. There is no cure and the treatments have a varying amount of success on improving the quality of life.
There wasn't much treatment available back then and she pushed her way through a lot. Since her symptoms manifested so severely, she was able to get disability. Everyone with MS has different symptoms, and each day is different for the individual patient. As a reminder of that, she woke up blind in one eye in 1997. She went to the hospital for a very high dose steroid treatment. She walked in with complete ease of mobility but rolled out in a wheelchair. MS hit her very hard for several months. She used the wheelchair for about 6 months. We got rid of a fishing boat and a pair of waverunners at that time. We knew that "home" was important to us so we made plans to have a more accessible house built. In 2000, while under the stress of dealing with a contractor, she relapsed and went to the hospital some and spent more time in her wheelchair. She has been on several different treatments since 1997 and the one that she is on now is Tysabri. She gets an IV treatment once a month. It's hard on her for a couple of days but that wheelchair is getting dusty in the closet. Currently, her symptoms aren't that noticeable to most people, and she get's the most she can from every day.
We know it may be hard for people to understand, but we tend to look at Gin's MS as a blessing in disguise. It has made us aware how precious life is at an earlier age. We have also been able to spend more time together since Gin hasn't had to try to battle with a job and the disease. Fatigue is one of the hardest symptoms for her to deal with.
We have been able to evaluate our life with open minds and we realize that "home" is very important to us yet we like to be on the go when we can. The best way to have a condo at the beach, mountains, and lake is to have a home on wheels. At times, it may be an up hill battle but we've been through a lot. Gin is a rock and I guess I'm a pebble. So you see, we really mean it when we say that life is too short!!
LIFE IS TOO SHORT!!
I've tried to compose this post in my head for a few days now but I'm not sure how well the words will come out. When I say that we try to take one day at a time because each good day is truly a blessing, I feel that we have had an earlier awakening to that fact than many people that we know. I have led a very blessed life and couldn't be happier with where my journey has taken me. Gin's MS has made for a bumpy ride at times. She is a very strong-willed person and has pushed through a lot. I want to share some of her journey.
She was going through life as any normal person does...taking tomorrow for granted...when suddenly one day, the left side of her body went completely numb and very weak. It was January 1990 and she was just 26 years old. It was as if she had a stroke. She was using a walker just to get around. She went to a neurologist and had some tests done. It was Multiple Sclerosis. It's an autoimmune disease which means that the body's immune system mistakenly attacks normal tissue. In the case of MS, that tissue is the myelin sheath which covers and insulates the nerve fibers of the central nervous system. The brain sends the signals to your body to do a certain thing, but the pathway is interrupted so that the signal is not received. There is no cure and the treatments have a varying amount of success on improving the quality of life.
There wasn't much treatment available back then and she pushed her way through a lot. Since her symptoms manifested so severely, she was able to get disability. Everyone with MS has different symptoms, and each day is different for the individual patient. As a reminder of that, she woke up blind in one eye in 1997. She went to the hospital for a very high dose steroid treatment. She walked in with complete ease of mobility but rolled out in a wheelchair. MS hit her very hard for several months. She used the wheelchair for about 6 months. We got rid of a fishing boat and a pair of waverunners at that time. We knew that "home" was important to us so we made plans to have a more accessible house built. In 2000, while under the stress of dealing with a contractor, she relapsed and went to the hospital some and spent more time in her wheelchair. She has been on several different treatments since 1997 and the one that she is on now is Tysabri. She gets an IV treatment once a month. It's hard on her for a couple of days but that wheelchair is getting dusty in the closet. Currently, her symptoms aren't that noticeable to most people, and she get's the most she can from every day.
We know it may be hard for people to understand, but we tend to look at Gin's MS as a blessing in disguise. It has made us aware how precious life is at an earlier age. We have also been able to spend more time together since Gin hasn't had to try to battle with a job and the disease. Fatigue is one of the hardest symptoms for her to deal with.
We have been able to evaluate our life with open minds and we realize that "home" is very important to us yet we like to be on the go when we can. The best way to have a condo at the beach, mountains, and lake is to have a home on wheels. At times, it may be an up hill battle but we've been through a lot. Gin is a rock and I guess I'm a pebble. So you see, we really mean it when we say that life is too short!!
Monday, March 1, 2010
Present day and some reasons...
Stix n Brix NC
We enjoyed looking back at last years travels and hope it was a nice trip for you too. As you can tell, we enjoy the natural settings offered by the CGs where we stayed. It helps us to find beauty in the ordinary. All totaled, we spent 62 nights RVing and enjoyed every one of them. Wish it could be more.
When I tell folks that we plan to sell everything and travel in a MH when I retire, I sometimes don't think they quite understand our choice. There are many reasons, and I want to touch on a few of them now. Life can get to be a bit of a rut, and having a different back yard, so to speak, eliminates any ruts. We'll be more active physically and mentally. Gin's MS can act up at any time but fulltiming will keep her more active and healthier. We can follow the weather.
One aspect that's important to me is the interaction with fellow rvers. They are generally a nice friendly bunch of folks with a positive outlook on life. I think we fall into that category also. We would like to do some volunteer activities while we're on the road. A couple of them that interests us are Habitat for Humanity and Escapees CARE. Sure a person can get involved with a volunteer organization while living in a stix n brix, but it can sometimes feel like you are obligated to continue even if your heart isn't in it.
We enjoyed looking back at last years travels and hope it was a nice trip for you too. As you can tell, we enjoy the natural settings offered by the CGs where we stayed. It helps us to find beauty in the ordinary. All totaled, we spent 62 nights RVing and enjoyed every one of them. Wish it could be more.
When I tell folks that we plan to sell everything and travel in a MH when I retire, I sometimes don't think they quite understand our choice. There are many reasons, and I want to touch on a few of them now. Life can get to be a bit of a rut, and having a different back yard, so to speak, eliminates any ruts. We'll be more active physically and mentally. Gin's MS can act up at any time but fulltiming will keep her more active and healthier. We can follow the weather.
One aspect that's important to me is the interaction with fellow rvers. They are generally a nice friendly bunch of folks with a positive outlook on life. I think we fall into that category also. We would like to do some volunteer activities while we're on the road. A couple of them that interests us are Habitat for Humanity and Escapees CARE. Sure a person can get involved with a volunteer organization while living in a stix n brix, but it can sometimes feel like you are obligated to continue even if your heart isn't in it.
Sunday, February 7, 2010
In the beginning...
Stix n Brix; Clayton NC
We are starting this blog a little early to keep up with our progress towards our goal of fulltime RVing. We know that there will be days and even weeks when it seems so far away. We also know that it is closer now than it was when we decided this would be the ideal lifestyle for us.
I will be doing most of the posts but Gin will speak up occasionally. She is definitely the tech support in all we do. I am Syl and plan to retire in the Fall of 2011. Many people are strong enough to quit their stressful jobs and travel fulltime in their RV. We aren't brave enough to do that on a wing and a prayer. I will be 50 upon retirement so we figure that should give us a couple of good decades.
Gin has a different life story than many people. She was diagnosed with Multiple Sclerosis (MS) while in her mid 20's and has her ups and downs with that disease. She has been on disability for 20 years due to MS. We've been together our entire adult life.
We are starting this blog a little early to keep up with our progress towards our goal of fulltime RVing. We know that there will be days and even weeks when it seems so far away. We also know that it is closer now than it was when we decided this would be the ideal lifestyle for us.
I will be doing most of the posts but Gin will speak up occasionally. She is definitely the tech support in all we do. I am Syl and plan to retire in the Fall of 2011. Many people are strong enough to quit their stressful jobs and travel fulltime in their RV. We aren't brave enough to do that on a wing and a prayer. I will be 50 upon retirement so we figure that should give us a couple of good decades.
Gin has a different life story than many people. She was diagnosed with Multiple Sclerosis (MS) while in her mid 20's and has her ups and downs with that disease. She has been on disability for 20 years due to MS. We've been together our entire adult life.
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