Ok folks, I know I don't have a stellar following yet, but who knows? I may become popular and famous someday! Now, it is late and I should be in bed, but I have been playing around with the settings on this blog thing, and I am not sure if the font size works best for people set at "Normal" or set at "Large." I know some people have an issue with vision (I know I have issues with my so-called 20/20 vision, especially when I am tired...hmmm), but perhaps Large is too large for some, in which case I should use Normal, because that is what looks best on the blog, and makes it easier to scroll through the posts... I am thinking there should be something in between... yet I have not found a solution... I will go with Normal for now, even though I have absolutely no clue what "Normal" means. There is no "Normal" in my life!
Ok... Bedtime for bonzo...
On the road... of life...
Always keep moving
Thursday, May 31, 2012
ANOTHER "LAZY" DAY
I was asked the other day at Costco how MS effects people. It seems like such a small question. It is certainly one that can be answered easily if one is talking about a cold, or even some diseases. But Multiple Sclerosis? I told the person asking that she could gather 100 people with MS, and each would have a different story to tell. There are similarities between us, sure, but no two people with MS experience it the same way.
After living with some of the effects of MS for years before the diagnosis, and now living with the diagnosis (dx) for almost a decade, and living on full disability for the past two plus years, asking me about how MS effects even just me is almost mind-blowing! I feel a need to hold a seminar, which was kind of what happened in Costco.
Slowly, people gathered around, listening to what I had to say about MS in general. Many asked questions. It was really nice to be so open about this disease and have so many interested. It is something I would like to do someday. Of course, when the little impromptu "session" was over (I was tired and people wanted to get back to their shopping), one hip had "locked up" on me, and I had to walk it out, pushing my cart, of course!
So, today is a lazy day because I decided I needed a few more days of rest. Yesterday was my nephew's tenth birthday, and I so I had a long day driving into the city, and running a couple of errands before meeting everyone for dinner. I can do that only about three times a month, if I don't want to wear myself out until I am basically bedridden for a week to a month. I didn't get my 12 + hours of sleep in last night, either, because the cats spent an hour this morning trying to convince me it was time to go out. They didn't win. :-)
I did have to make a call to MS Lifelines, though. It seems that since my Rebif is now covered by my insurance, I have to pay more for it than when it wasn't covered by insurance. Does that make sense to anyone??
Lots of thoughts today... Maybe tomorrow will be more focused.
After living with some of the effects of MS for years before the diagnosis, and now living with the diagnosis (dx) for almost a decade, and living on full disability for the past two plus years, asking me about how MS effects even just me is almost mind-blowing! I feel a need to hold a seminar, which was kind of what happened in Costco.
Slowly, people gathered around, listening to what I had to say about MS in general. Many asked questions. It was really nice to be so open about this disease and have so many interested. It is something I would like to do someday. Of course, when the little impromptu "session" was over (I was tired and people wanted to get back to their shopping), one hip had "locked up" on me, and I had to walk it out, pushing my cart, of course!
So, today is a lazy day because I decided I needed a few more days of rest. Yesterday was my nephew's tenth birthday, and I so I had a long day driving into the city, and running a couple of errands before meeting everyone for dinner. I can do that only about three times a month, if I don't want to wear myself out until I am basically bedridden for a week to a month. I didn't get my 12 + hours of sleep in last night, either, because the cats spent an hour this morning trying to convince me it was time to go out. They didn't win. :-)
I did have to make a call to MS Lifelines, though. It seems that since my Rebif is now covered by my insurance, I have to pay more for it than when it wasn't covered by insurance. Does that make sense to anyone??
Lots of thoughts today... Maybe tomorrow will be more focused.
Monday, May 28, 2012
More Bumps in the Road
Ok people. So everyone has a day... a week... a month... a year... or maybe even a decade, when the bumps in the road of life feel insurmountable. Yesterday, I was battling depression. As an intelligent human being with the ability to have "gone all the way" in my education, and snag a big, "important" job with a six figure income, I chose to move through life wherever and however the wind blew. I jumped from job to job as I learned about this or that, and until I was diagnosed with MS, I did not think I needed to worry too much about finances. As long as I could pay my bills now, what was the worry for later?
Then Multiple Sclerosis hit. Now, we can actually trace my MS symptoms back to 1980, but since my symptoms were not connected at that time to MS, they are still not recognized by medical professionals.
But back to depression. I cannot work anymore. I am bringing in only what Social Security Disability Insurance give me, and a little more from Long Term Disability Insurance through my last employer. It all equals about a third of what I was bringing home when I was working.
Six years ago, with the economy plummeting, my housemate tried to sell her house while buying land and building a house in which we could both live. Her old house sold at about half the original value. The house we now live in is worth less than what we owe after five or six years of paying.
I told you earlier about my medical insurance, now covering my Rebif at 50%, which leaves me with possibly several months without medication, as I cannot afford 50%, or even $50 more per month if I want to eat or put fuel in my car once in a while.
All of this self pitying has a purpose here. I have struggled with depression and anxiety all of my life, and I have come up with some coping mechanisms which may help anyone interested in suggestions.
First, when I cannot face the energy it takes to do anything, and I just want to get away from it, perhaps hide under the covers on my bed, I will read a book. We're not talking about education here. We're talking escape. It just so happens, my most favorite books to read are fictional mysteries. A good genre to take my mind off of anything! I don't even go for the more complicated mysteries. Nancy Drew or the Hardy Boys would do it for me. I am currently reading Carol Higgins Clark books and I am almost completely done with the Mary Higgins Clark books. Not hard. Just enough to get me out of my own shell and into someone else's for a while. I also enjoy James Patterson, Sue Henry, Dick Francis, and several others.
If I have a little energy, enough to face life as far as getting up and getting some coffee... I may look for ways to bring my mood up a bit. I can listen to Deepak Chopra's Creating Affluence, which is a quick book on cd that gets me feeling like a part of the whole world, in a good way. It helps me lift the load off of my shoulders and give it back to the universe (God, or whatever you may believe).
I also like to look for good quotes. I used to sit in our local Hallmark for hours, going through card after card, writing down the quotes I liked. I saved them in a three-ring binder I still have, thirty years later.
Now that everything is all about the internet and smart phones and tablets, I searched last night for quotes to put on my phone. I read several and fell asleep with one on my mind.
"Let no feeling of discouragement prey upon you,
and in the end you are sure to succeed."
-- Abraham Lincoln
Wow. How appropriate for that time. For many times when we are discouraged because things are not going our way. We don't have enough time or energy or money or whatever... A bump in the road. It may seem a mountain; insurmountable at the time, but we all face them. Bumps in the road. Once we bring ourselves back into focus, we can all succeed.
Then Multiple Sclerosis hit. Now, we can actually trace my MS symptoms back to 1980, but since my symptoms were not connected at that time to MS, they are still not recognized by medical professionals.
But back to depression. I cannot work anymore. I am bringing in only what Social Security Disability Insurance give me, and a little more from Long Term Disability Insurance through my last employer. It all equals about a third of what I was bringing home when I was working.
Six years ago, with the economy plummeting, my housemate tried to sell her house while buying land and building a house in which we could both live. Her old house sold at about half the original value. The house we now live in is worth less than what we owe after five or six years of paying.
I told you earlier about my medical insurance, now covering my Rebif at 50%, which leaves me with possibly several months without medication, as I cannot afford 50%, or even $50 more per month if I want to eat or put fuel in my car once in a while.
All of this self pitying has a purpose here. I have struggled with depression and anxiety all of my life, and I have come up with some coping mechanisms which may help anyone interested in suggestions.
First, when I cannot face the energy it takes to do anything, and I just want to get away from it, perhaps hide under the covers on my bed, I will read a book. We're not talking about education here. We're talking escape. It just so happens, my most favorite books to read are fictional mysteries. A good genre to take my mind off of anything! I don't even go for the more complicated mysteries. Nancy Drew or the Hardy Boys would do it for me. I am currently reading Carol Higgins Clark books and I am almost completely done with the Mary Higgins Clark books. Not hard. Just enough to get me out of my own shell and into someone else's for a while. I also enjoy James Patterson, Sue Henry, Dick Francis, and several others.
If I have a little energy, enough to face life as far as getting up and getting some coffee... I may look for ways to bring my mood up a bit. I can listen to Deepak Chopra's Creating Affluence, which is a quick book on cd that gets me feeling like a part of the whole world, in a good way. It helps me lift the load off of my shoulders and give it back to the universe (God, or whatever you may believe).
I also like to look for good quotes. I used to sit in our local Hallmark for hours, going through card after card, writing down the quotes I liked. I saved them in a three-ring binder I still have, thirty years later.
Now that everything is all about the internet and smart phones and tablets, I searched last night for quotes to put on my phone. I read several and fell asleep with one on my mind.
"Let no feeling of discouragement prey upon you,
and in the end you are sure to succeed."
-- Abraham Lincoln
Wow. How appropriate for that time. For many times when we are discouraged because things are not going our way. We don't have enough time or energy or money or whatever... A bump in the road. It may seem a mountain; insurmountable at the time, but we all face them. Bumps in the road. Once we bring ourselves back into focus, we can all succeed.
Thursday, May 24, 2012
Regence Medical Insurance
Well, I just found out that my Regence Evolve Plus medical insurance, which I started out paying $150 per month for and has now gone up to a whopping $336 per month, now "covers" Rebif. What this means is that I am now "allowed" to get my Rebif with 50% coverage. 50% of $2400???? And that helps me how?? MS Lifelines, which is a great organization, was helping me get my Rebif for a reasonable amount, considering my less-than-stellar income. Now, MS Lifelines has a program to help, but because of the so-called insurance coverage, the program is not as helpful as when I have no coverage. I still have several months to go before I am eligible for Medicare, and I have no idea what that means.
Wednesday, May 23, 2012
Thoughts on my Cognitive Evaluation
Last April, I was able to go in for a cognitive evaluation. I wanted to know where I am at. I know I have difficulties I did not have years ago, and although people say things are age-related, I am not one of those people. I think if you think about age, and what is "supposed to happen," it will. If age does not matter to you, and you continue life as though you are "young," you will always be younger than you are. I am 43, have maybe a couple of gray hairs, and was carded when entering the casino just a couple of years ago.
At any rate, the cognitive evaluation... I wanted to see what they would say. After two grueling days of simple tasks, I was exhausted. Add this, repeat that, figure out the pattern... As a perpetual student of psychology, I found it all fascinating. A week later, we met with the doc about the results. It turns out, I am not going crazy. It turns out, I am intelligent. It also turns out that I have lost some cognitive function that is considered as directly related to the Multiple Sclerosis.
Multi-tasking is hard for me. I used to be one of the best, but now, not so much. When I am fatigued, concentration and other mental functions fly out the window. I am like a zombie! I'm not sure I look any better, either!
One task I never fully completed in the evaluation was repeating back 12 easy words. I thought it was 20 words, and I never got all of them. I could remember pairs of words, but not single words. They were simple words, too, like "bus" or "tree." It made me think of all the times I walk into a room only to wonder why I am in that room. Sometimes, I figure out that I am not even in the room I had originally set out to enter!
Well, I am still wiped out, after four or five hours of "napping," so I am going away again. More rest for the weary...
At any rate, the cognitive evaluation... I wanted to see what they would say. After two grueling days of simple tasks, I was exhausted. Add this, repeat that, figure out the pattern... As a perpetual student of psychology, I found it all fascinating. A week later, we met with the doc about the results. It turns out, I am not going crazy. It turns out, I am intelligent. It also turns out that I have lost some cognitive function that is considered as directly related to the Multiple Sclerosis.
Multi-tasking is hard for me. I used to be one of the best, but now, not so much. When I am fatigued, concentration and other mental functions fly out the window. I am like a zombie! I'm not sure I look any better, either!
One task I never fully completed in the evaluation was repeating back 12 easy words. I thought it was 20 words, and I never got all of them. I could remember pairs of words, but not single words. They were simple words, too, like "bus" or "tree." It made me think of all the times I walk into a room only to wonder why I am in that room. Sometimes, I figure out that I am not even in the room I had originally set out to enter!
Well, I am still wiped out, after four or five hours of "napping," so I am going away again. More rest for the weary...
Thoughts about fatigue etc.
I thought I would write more about how fatigue is a process. Too bad I am too tired to think of much to say. I used to work long hours, then come home and work on the house, the yard, whatever. Now, going to town (three miles away) seems too hard most days. I have the drive to move forward, to do more and contribute more to my life, but this MS fatigue is something you can't just "push through." I am used to just pushing through adversities.. I guess for me, one of the processes involved in this kind of fatigue is learning to allow myself to sit, to be quiet, to nap, and worst of all, learn to let things be.
Fatigue also effects my thinking and my speech. I forget where I put things, what I am supposed to do, and why I am in one room when I just had the purpose in mind. For others, this is something that happens. It is something that everyone can relate to, in their own way. "I hate it when I do that!" or "I know exactly how that feels!" are reactions I get. It's part of getting older, is another good theory. But with MS, it is different. It is more constant. The brain is in there, but the neurons just aren't connecting in the same way.
I am going to nap now. Maybe on my way I will remember I have to find a phone and make a phone call... maybe not.
Fatigue also effects my thinking and my speech. I forget where I put things, what I am supposed to do, and why I am in one room when I just had the purpose in mind. For others, this is something that happens. It is something that everyone can relate to, in their own way. "I hate it when I do that!" or "I know exactly how that feels!" are reactions I get. It's part of getting older, is another good theory. But with MS, it is different. It is more constant. The brain is in there, but the neurons just aren't connecting in the same way.
I am going to nap now. Maybe on my way I will remember I have to find a phone and make a phone call... maybe not.
Wednesday, May 16, 2012
Building a Business with Multiple Sclerosis
I have been, over a year, trying to start a business online. I am on Social Security Disability Insurance (SSDI) and have been unable to work a regular job due to complications that arise from and that contribute to the MS fatigue. It is this fatigue that keeps me down. It is this fatigue that inspires me to find an hour here, an hour there, when I can, with the help of medication, do something to earn my keep instead of just living off a small government check.
Next post, I hope to have FATIGUE AS A PROCESS, PART II.
Next post, I hope to have FATIGUE AS A PROCESS, PART II.
Gone so long, but back now...
It has been a very long time since I have written on my blog. I am sorry. The last several months have been very trying. I have a cat, Sampson, who has made it his business to be my service animal. When I am too tired to get around, he lies on my legs, and refuses to let me up. The funny thing is, he hates being on anyone's lap. He checks my shower before I get in, then lies just outside the tub until I get out. He greets at the door me when I get home from appointments and such, and if my housemate "lets" me go out alone, he gets mad at her, as though he realizes I do not have anyone watching me.
Well, in January, Sampson began vomiting almost constantly, and couldn't eat anything. We took him to the vet several times, and to the vet emergency hospital. He was scheduled for an ultrasound on a Tuesday, and by the preceding Friday, when we took him in again, his regular doctor looked at him (he had lost about 25% of his body weight in ten days), and told us he didn't think Sam would last the weekend. We got Sam in to an emergency referral veterinary clinic in another city, and the internist who does ultrasounds waited for us. After the ultrasound, they admitted him overnight and we stayed, sleeping on the concrete floor in the waiting room. After making sure he was stabilized, they had us take him home until Tuesday, when he was scheduled for an appointment with the internist who would look at the ultrasound and most likely take a biopsy. Our regular vet had let us know he was afraid Sam might have intestinal lymphoma, a cancer for which there is no cure.
Tuesday came and we were back at the emergency referral veterinary clinic, and the internist recommended surgery and several kinds of biopsies. Sampson was cut almost stem to stern, and six biopsies were taken of his liver, pancreas, a lymph node on his small intestine, and three along his intestine. No lymphoma, but he has "triaditis" which basically means intestinal bowl disease, pancreatitis, and something to do with his liver. He has to be on a special diet and has medications we give him every evening. On top of that, we have to watch for signs of diabetes.
On the good side, he is slowly gaining weight, has been getting to go outside a few hours a day, and seems to be gaining his strength and stamina slowly.
This has all been very tiring for me, with my fatigue. The stress alone has brought my energy level down, and the months of round-the-clock care for this very special member of our family has tested the bounds of my abilities in ways I would never have thought I could endure. With that said, the months of recovery with which I continue to struggle are worth every moment of time I have to spend with my friend, Sampson. He and I are regaining our health together.
Well, in January, Sampson began vomiting almost constantly, and couldn't eat anything. We took him to the vet several times, and to the vet emergency hospital. He was scheduled for an ultrasound on a Tuesday, and by the preceding Friday, when we took him in again, his regular doctor looked at him (he had lost about 25% of his body weight in ten days), and told us he didn't think Sam would last the weekend. We got Sam in to an emergency referral veterinary clinic in another city, and the internist who does ultrasounds waited for us. After the ultrasound, they admitted him overnight and we stayed, sleeping on the concrete floor in the waiting room. After making sure he was stabilized, they had us take him home until Tuesday, when he was scheduled for an appointment with the internist who would look at the ultrasound and most likely take a biopsy. Our regular vet had let us know he was afraid Sam might have intestinal lymphoma, a cancer for which there is no cure.
Tuesday came and we were back at the emergency referral veterinary clinic, and the internist recommended surgery and several kinds of biopsies. Sampson was cut almost stem to stern, and six biopsies were taken of his liver, pancreas, a lymph node on his small intestine, and three along his intestine. No lymphoma, but he has "triaditis" which basically means intestinal bowl disease, pancreatitis, and something to do with his liver. He has to be on a special diet and has medications we give him every evening. On top of that, we have to watch for signs of diabetes.
On the good side, he is slowly gaining weight, has been getting to go outside a few hours a day, and seems to be gaining his strength and stamina slowly.
This has all been very tiring for me, with my fatigue. The stress alone has brought my energy level down, and the months of round-the-clock care for this very special member of our family has tested the bounds of my abilities in ways I would never have thought I could endure. With that said, the months of recovery with which I continue to struggle are worth every moment of time I have to spend with my friend, Sampson. He and I are regaining our health together.
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