Jingle Bells
(Chorus]
Bi-polar, bipolar
Spell it as you may
A disease
that will not please
when sadness fills your day.
Dragged me to the mall
"See how nice and bright?"
People are so sad
anxiety and fright
Oh take me home right now
To my bed I fly
So silence please
I am diseased
Watched QVC
All night!
[Chorus]
And so I took my pills
and maybe took a bath
and through my flat I walked
through old clothes, kicked a path
I think I'm unemployed
but I don't really care
I am just fine
How 'bout more wine?
Soon be manic, don't despair!
We Four Kinds (We Three Kings)
We four kinds of bad MS are
Spines and brains we love to leave scars
Keep on cryin', MRI trying
There's no cure so far...
[Chorus]
Oh-oh Prednisone, Copaxone too
Veripred please help me through
Sad and tired
caffeine wired
I can pee but just can't poo
We remiss and then may come back
Pro-gressive, well that they'll just track
Donate money
Don't get funny
Just serve us and then hit the sack.
[Chorus]
Walking still - hey you're doing well
Pain and meds a personal hell
Five years stumbling
Down the steps tumbling
Watching my feet and legs swell
[Chorus]
Showing posts with label BiPolar. Show all posts
Showing posts with label BiPolar. Show all posts
Sunday, December 20, 2015
Saturday, April 11, 2015
HAWMC 4/11/15 Pet Pal.
I mentioned my dog some posts back, (OK, actually my sister's dog, but my sister was 17 when we finally brought the dog home and Barb was already her partying self, so Cookie moved on to me) and you can check that out. But this is the one where we are supposed talk about pet pals, so I will note two others, no longer with us, that made me smile and still do.
Summer afternoon 1972. It was pouring outside and I was just sitting at our dining room table, the one used for Thanksgiving and Christmas, putting a model car together ("Don't get any glue on the table!"). The transistor radio was playing the Top 40 songs. My father had just left for the night shift, and my mother would be home in two hours from her job, so it was me, Cookie, and this:
Summer afternoon 1972. It was pouring outside and I was just sitting at our dining room table, the one used for Thanksgiving and Christmas, putting a model car together ("Don't get any glue on the table!"). The transistor radio was playing the Top 40 songs. My father had just left for the night shift, and my mother would be home in two hours from her job, so it was me, Cookie, and this:
The above bird is a budgie. My grandmother had one for many years, and when Grandma died, we got the budgie. We fed it, cleaned it, and let it do its thing in the cage, and occasionally opened the cage door and let it fly around the house. The budgie, called Chico, found my father's bald head a nice resting place. Cookie would track Chico around the house, but aside from a bark and a lot of sniffing at the budgie by the dog, no violence ever happened. One day, though, I came home from school and, after dropping my bookbag, hunted around the house for Cookie. Especially when I saw the cage was open and no bird around. Twenty minutes later, the bird was found, intact and chattering under the dining room (used at Thanksgiving and Christmas only) table. Cookie was in the midst of her afternoon nap, and whatever had happened between dog and bird that day will never be known.
So it was this feeling of Nixon era detente that came over me at that moment and I can clearly remember telling myself what a great moment it was, that I should remember it. And I do. Memories fade from me now. But that one was, and remains, as clear as glass.
And so is this one...
My wife's family had a farm (e-i-e-i-oh) and on this farm they had a dog. Her name was Lily. She looked like this:
Golden Retriever. Away from the farmhouse, and on the expansive acres around, Lily could have a field day running, well, around the field. One Sunday in September, in the morning I was sitting on the outside couch (its a farm thing) such as this:
Breakfast was over and I was taking in the bright sun and blue skies. Lily would leap over the couch, over the wooden fence and into the tall grass. Running and running, tongue flapping like a pink rag out the side of her mouth. Now and then she'd run back and try to grab a coat sleeve or pant leg because she wanted to show me something. This was anything from bones (animal) to something I had no comprehension what she was barking and huffing about. We'd end up back at the couch until we did it all again.
They are gone now. The table, the couch, the animals. But they are right here in my head, and as MS plays its tricks with my brain, some parts refuse to leave me, but console me. They are my friends still, and I can be there with them anytime. It's the brain, people. Use it. Bipolar, MS, whatever your challenge, the brain needs to be stimulated. You live there, too.
Sunday, May 12, 2013
How Crazy Did Your Mother Make You?
May 12 is Mother's Day, as if Hallmark and its associates haven't reminded you enough. Since you are reading this, I'll go out on a limb and say it is May 12 2013 or beyond, and, if you note the day, as perhaps my myriad Russian readers do not, you've either thought about or were in contact with your female parental representative. I phrase it that way as Moms now come in all sizes, shapes and genders, biological or whimsical. Some of the best Moms I've met in my travels did not follow the "traditional" way.
My mother would not fit the mold either. Oh, it was a traditional husband-wife (male-female) bond with three children. She was a working mom from the early 1960s until the mid 1990s. She did office work, mostly, and saw the way things work in small offices - where being pals, golf buddies, good old boys worked with all the other males that were employed mostly assuredly kept that glass ceiling in place, no matter how much of a dunderhead the male in charge was.
Lesson for Tom: Since you're shy anyway, go where merit will do it. Take a civil service test. I did, and, after a few years, became a supervisor of staffs from 4 to 40, and was ready to take the place of previously hired dunderheads.
My mother was told she was smart by the teachers at her high school. This was 1941. She was told she could do well in college. Then she met my father, a handsome devil from South Troy, and other things got in the way. Pearl Harbor. My father was drafted, and my mother played Rosie the Riveter building the bombers that helped my father win the war all by himself. My Dad had some liberty time in 1944. and 9 months later my older brother was born. No more thoughts of college. I know she was sad she never made it. But she raised three kids. I was the surprise 1956 baby.
Lesson for Tom: You never know what can happen, so keep your eye on the prize, but adjust, adjust, and accept. I finished with a Master's degree, and handed both my mother and wife diplomas of gratitude also that day.
My mother's mom Frances died May 1961. I vaguely recall the day, probably because of the high emotion. Frances was a single mom who actually was divorced in the 1930s (scandal!) and raised her two children on her own, with a little help from her own parents. My uncle Jim was a Marine, was on Iwo Jima, came home and raised three kids with his wife Kay. The first home movies we have are of my parents and my aunt and uncle playing badminton, and having a great time. My mother thought her mom was a saint, and its hard to disagree.
Lesson for Tom: As Crosby, Stills, and Nash said "And you, of tender years, can't know the fears that your elders grew by." Be grateful for life and what your parents did for you. Pay them back by living a good life.
By 1970 both grandmothers were gone, and my mother's father was just a blip on a screen. I met him twice. He had another family in Ohio. I met a half cousin once. My father's father died in the 1930s, and he gets his own column sometime. So things moved on, and my brother and sister got married and moved out, and then my father got sick, and died. This is when I started seeing my mother in a different light. It took my own road to mental illness to see this light.
My mother was bi-polar, and this came from her Mom who suffered from depression. She was never necessarily diagnosed, except by her bipolar son, me. (There is no rule on this, but sometime we, as bipolar, can see "One of us"). It has made the last twenty years more understandable. My mother watched as her mother, husband and daughter died slowly. She saw herself moving from decent middle class life to someone who needed support from her two sons, and shut herself off emotionally except for anger at everyone. She cried, raged, and railed at the world, punishing God by not believing, and everyone else for not being who she wanted. She could, of course, be nice, kind and adored by little children and her great grandchildren and strangers in a store by sharing her sense of humor. She was and could be a great lady to be around. And she took to Jackie's sister's family as another Grandma.
My mother died on May 12, 2001. Today is May 12, 2013, Mother's Day. She never saw my mental decline, suicide attempt, diagnosis and rebirth. Nor the MS that would hit from my father's side of the family. She'd be angry that I was hit, but, I hope, proud of how I've handled it, using some of her cues. Her lessons were observed, noted, and followed or not.
But all is forgiven. That is the lesson. Patience, understanding, caring, doing the best you can. Good lessons. Happy Mother's Day, Mom, and all moms.
My mother would not fit the mold either. Oh, it was a traditional husband-wife (male-female) bond with three children. She was a working mom from the early 1960s until the mid 1990s. She did office work, mostly, and saw the way things work in small offices - where being pals, golf buddies, good old boys worked with all the other males that were employed mostly assuredly kept that glass ceiling in place, no matter how much of a dunderhead the male in charge was.
Lesson for Tom: Since you're shy anyway, go where merit will do it. Take a civil service test. I did, and, after a few years, became a supervisor of staffs from 4 to 40, and was ready to take the place of previously hired dunderheads.
My mother was told she was smart by the teachers at her high school. This was 1941. She was told she could do well in college. Then she met my father, a handsome devil from South Troy, and other things got in the way. Pearl Harbor. My father was drafted, and my mother played Rosie the Riveter building the bombers that helped my father win the war all by himself. My Dad had some liberty time in 1944. and 9 months later my older brother was born. No more thoughts of college. I know she was sad she never made it. But she raised three kids. I was the surprise 1956 baby.
Lesson for Tom: You never know what can happen, so keep your eye on the prize, but adjust, adjust, and accept. I finished with a Master's degree, and handed both my mother and wife diplomas of gratitude also that day.
My mother's mom Frances died May 1961. I vaguely recall the day, probably because of the high emotion. Frances was a single mom who actually was divorced in the 1930s (scandal!) and raised her two children on her own, with a little help from her own parents. My uncle Jim was a Marine, was on Iwo Jima, came home and raised three kids with his wife Kay. The first home movies we have are of my parents and my aunt and uncle playing badminton, and having a great time. My mother thought her mom was a saint, and its hard to disagree.
Frances, me, and my father's mom Julia. I have no clue why I am ironing.
Lesson for Tom: As Crosby, Stills, and Nash said "And you, of tender years, can't know the fears that your elders grew by." Be grateful for life and what your parents did for you. Pay them back by living a good life.
By 1970 both grandmothers were gone, and my mother's father was just a blip on a screen. I met him twice. He had another family in Ohio. I met a half cousin once. My father's father died in the 1930s, and he gets his own column sometime. So things moved on, and my brother and sister got married and moved out, and then my father got sick, and died. This is when I started seeing my mother in a different light. It took my own road to mental illness to see this light.
My mother was bi-polar, and this came from her Mom who suffered from depression. She was never necessarily diagnosed, except by her bipolar son, me. (There is no rule on this, but sometime we, as bipolar, can see "One of us"). It has made the last twenty years more understandable. My mother watched as her mother, husband and daughter died slowly. She saw herself moving from decent middle class life to someone who needed support from her two sons, and shut herself off emotionally except for anger at everyone. She cried, raged, and railed at the world, punishing God by not believing, and everyone else for not being who she wanted. She could, of course, be nice, kind and adored by little children and her great grandchildren and strangers in a store by sharing her sense of humor. She was and could be a great lady to be around. And she took to Jackie's sister's family as another Grandma.
But all is forgiven. That is the lesson. Patience, understanding, caring, doing the best you can. Good lessons. Happy Mother's Day, Mom, and all moms.
Thank you, Mom.
Monday, December 10, 2012
We Are Not Alone, Charlie Brown
It happened today at the DBSA support group. I was sitting in my car getting a quick sip of latte from my Dunkin Donuts mug when I saw the door to the church where we meet swing open and a young lady I'll call Elise came out. She was running toward another young lady who was just getting out of her car, a trim young woman with long black hair, and I watched them hug. I'd never seen either of them before at group, but they were long time members, as I was the new kid.
The two young ladies took seats near me and we began the group with the usual reading of the rules (be nice, etc.) and introductions. The young woman with the skinny jeans (whom I'll call Michelle) was fourth on the list and she began to talk about problems with meds and doctors and shrinks, and pain in her legs, numbness in her hands. Getting the idea?
I had thought I might be the only person with bipolar, PTSD, and also have MS in the area. Turns out no. Michelle as well. There was a bonding immediately. Michelle has RRMS and different challenges than yours truly due to age, income, and past challenges. But we face the same demon every morning, determined to wrestle that demon down, even if its just for the day.
It was said in the group that more people show up as the days roll closer to The Holidays. Happy Hanukkah, by the way. You can understand it. We can sound like Charlie Brown very easily.
The fact that Snoopy is cowed into not being joyous by Lucy and Schroeder is more telling than most in the story. Snoopy has to hide his talents (animal mimicking, etc) because "it's not called for." He is threatened ("I oughta slug you"- Lucy) and remains slightly apart from the group through the whole special, even when he joins in the laughter at Charlie Brown and his tree, or in singing the carol at the end.
We need to dance and be as joyous as we can. We get so short a time on this planet that we have to celebrate ourselves, recognize our faults, and be open to new things (like Charlie Brown at the end, realizing the true meaning of Christmas [whatever that means to the reader]). Right now it seems like a time to celebrate a family, one long ago, and one established just this morning. I met a sister.
More holiday stuff to come. Almost to 2000 pageviews. Thanks for reading.
The two young ladies took seats near me and we began the group with the usual reading of the rules (be nice, etc.) and introductions. The young woman with the skinny jeans (whom I'll call Michelle) was fourth on the list and she began to talk about problems with meds and doctors and shrinks, and pain in her legs, numbness in her hands. Getting the idea?
I had thought I might be the only person with bipolar, PTSD, and also have MS in the area. Turns out no. Michelle as well. There was a bonding immediately. Michelle has RRMS and different challenges than yours truly due to age, income, and past challenges. But we face the same demon every morning, determined to wrestle that demon down, even if its just for the day.
It was said in the group that more people show up as the days roll closer to The Holidays. Happy Hanukkah, by the way. You can understand it. We can sound like Charlie Brown very easily.
Charlie Brown should be in our support group. He would find his answers without having to direct the play and find a role for the Christmas Queen. But we'd miss the Snoopy dance.
The fact that Snoopy is cowed into not being joyous by Lucy and Schroeder is more telling than most in the story. Snoopy has to hide his talents (animal mimicking, etc) because "it's not called for." He is threatened ("I oughta slug you"- Lucy) and remains slightly apart from the group through the whole special, even when he joins in the laughter at Charlie Brown and his tree, or in singing the carol at the end.
We need to dance and be as joyous as we can. We get so short a time on this planet that we have to celebrate ourselves, recognize our faults, and be open to new things (like Charlie Brown at the end, realizing the true meaning of Christmas [whatever that means to the reader]). Right now it seems like a time to celebrate a family, one long ago, and one established just this morning. I met a sister.
More holiday stuff to come. Almost to 2000 pageviews. Thanks for reading.
Tuesday, December 4, 2012
My Support Straps are Showing!
Wow, I seem to have disappeared for a bit. It seems that in Bloggerville you can disappear for months or years at a time and not be missed because there's always another blog someplace else to read. I gotta keep up the quantity, and you'll decide the quality.
The post Thanksgiving family-thon waned and so, strangely, did the screaming nightmares. It's not that the family themselves caused it, but the routine of our nights, and yes, bathroom use, had to be adjusted and while I was my usual quiet self, the thought of people not married to me being there all night freaked me out and sent my subconscious back to the years of my father wandering the house at three in the morning, banging furniture demanding to be dressed. All it takes is one little push, and down and down I go. Staying up here where I am just so much smoke and mirrors sometimes.
But talking about it helps, and that's a major thing I wanted to share today. Last Monday I attended my first DBSA (Depression & BiPolar Support Alliance) meeting at a local church. There were five people meeting in the church's choir room. I was the youngest. But the age dies not matter, in fact there are people who have had to deal with BP for over 40 years in this group, which shows that it can be done. You have bad days (and there are people in this group that are having bad days, I mean real bad) and you can come here and have a cookie and talk and no one will judge you. We proscribe no drugs, we provide reassurance - at least one of us has been there. (Yes, I see small objects at the side of my glasses. Yes, I can hear voices in an empty room). No one will say "Snap out of it" or "Get a job", except in jest, because we've all heard it from the "Normals".
This is the first group for Bipolar support group that I've ever attended, and it already feels like home. Discussions were made about psychiatrists, and psychologists, and where some of us may find a better fit. (More on my psychiatrist later).
My physical and water therapy have been extended through most of December, and we're trying things to work with specific muscles in various parts of my legs, with weights on in the pool. Looks like I'll be headed back to the pool in early 2013.
On Wednesday of last week I had a meeting with my neurologist who said my walking has improved, and that I seemed to be doing quite well, ahem, considering. I agree. A new MRI was ordered and completed that week. Further details on what it may show will be shared later this month. This one in Saratoga doesn't have music like the one in Troy. Here's another good reason for support groups. Everyone there has probably already had one.
Earlier that same day I had gotten a note from one of the Albany, NY's writers groups inviting me to join them. As my local group will soon be ending for a few months, it's a chance to change scope, and get a fresh look at what and how I write. Unless of course they don't like it, then the heck with them (kidding, kidding). This support group does judge your work, not you, and they do it because they want you as a writer to succeed.
I wrapped up the week with physical therapy, and new exercises that I can incorporate into just about anything whether I'm moving or not. One thing I have changed is that I'm writing this post at my kitchen table and not my desk, sitting in a wooden chair so that I am at 90 degrees for my back, my lower torso and with feet on the floor, limiting strain, and keeping me concentrated. My den chair allows me to slouch and that normally leads to zoning out and minutes fly by and I'm staring at useless web pages. Keeping focused is better. Slouching comes in still, but when I'm talking to you, slouching is not allowed.
A few months back I told you of my first psychiatrist's legal problems, which are apparently still pending. The new psychiatrist has shown some enthusiasm but has chronic office staffing problems, such as the office manager oversleeping and keeping three patients waiting (me the longest) and not the hint of an "I'm sorry" because, after all, we don't work, what else do we have to do? Oh, and please wait on the co-pay until I get back from Dunkin' Donuts, OK? Just sit there. Sure, after all, what else did I have to do? I don't work. And they write the prescriptions.
Support can come from many areas, some you didn't even know you had. I've gotten good wishes from old high school friends I've not seen in years, until recently, and from folks on line. It's one of those George Bailey moments (you know, George Bailey[Jimmy Stewart], It's A Wonderful Life?) when George realizes who he touches as you go through life. In my DBSA support group, one lady told us that she had remembered something I had said, and that it had helped her accept her situation more. You just need to be your own Clarence sometime. Now Clarence was... oh, go watch the movie.
And when you're done with that, see if you can, whether you are Bipolar or have MS, or whatever your situation, think on the invisible lines that tie you to others. What you did or did not say that may have been a more positive response to any situation? You can't see the strings of support, but they are there. And for some of us, those strings can keep us upright, standing, or if loosened, falling into an abyss. And we have strings too. We can drag many down. But the vast majority of the challenged like me and others in support groups of all kinds look to hold those strings together with everyone.
For that is community, that is working towards peace.
More soon. Thanks for reading. Heading towards 2000 page views. Wow!
The post Thanksgiving family-thon waned and so, strangely, did the screaming nightmares. It's not that the family themselves caused it, but the routine of our nights, and yes, bathroom use, had to be adjusted and while I was my usual quiet self, the thought of people not married to me being there all night freaked me out and sent my subconscious back to the years of my father wandering the house at three in the morning, banging furniture demanding to be dressed. All it takes is one little push, and down and down I go. Staying up here where I am just so much smoke and mirrors sometimes.
But talking about it helps, and that's a major thing I wanted to share today. Last Monday I attended my first DBSA (Depression & BiPolar Support Alliance) meeting at a local church. There were five people meeting in the church's choir room. I was the youngest. But the age dies not matter, in fact there are people who have had to deal with BP for over 40 years in this group, which shows that it can be done. You have bad days (and there are people in this group that are having bad days, I mean real bad) and you can come here and have a cookie and talk and no one will judge you. We proscribe no drugs, we provide reassurance - at least one of us has been there. (Yes, I see small objects at the side of my glasses. Yes, I can hear voices in an empty room). No one will say "Snap out of it" or "Get a job", except in jest, because we've all heard it from the "Normals".
This is the first group for Bipolar support group that I've ever attended, and it already feels like home. Discussions were made about psychiatrists, and psychologists, and where some of us may find a better fit. (More on my psychiatrist later).
My physical and water therapy have been extended through most of December, and we're trying things to work with specific muscles in various parts of my legs, with weights on in the pool. Looks like I'll be headed back to the pool in early 2013.
On Wednesday of last week I had a meeting with my neurologist who said my walking has improved, and that I seemed to be doing quite well, ahem, considering. I agree. A new MRI was ordered and completed that week. Further details on what it may show will be shared later this month. This one in Saratoga doesn't have music like the one in Troy. Here's another good reason for support groups. Everyone there has probably already had one.
Earlier that same day I had gotten a note from one of the Albany, NY's writers groups inviting me to join them. As my local group will soon be ending for a few months, it's a chance to change scope, and get a fresh look at what and how I write. Unless of course they don't like it, then the heck with them (kidding, kidding). This support group does judge your work, not you, and they do it because they want you as a writer to succeed.
I wrapped up the week with physical therapy, and new exercises that I can incorporate into just about anything whether I'm moving or not. One thing I have changed is that I'm writing this post at my kitchen table and not my desk, sitting in a wooden chair so that I am at 90 degrees for my back, my lower torso and with feet on the floor, limiting strain, and keeping me concentrated. My den chair allows me to slouch and that normally leads to zoning out and minutes fly by and I'm staring at useless web pages. Keeping focused is better. Slouching comes in still, but when I'm talking to you, slouching is not allowed.
A few months back I told you of my first psychiatrist's legal problems, which are apparently still pending. The new psychiatrist has shown some enthusiasm but has chronic office staffing problems, such as the office manager oversleeping and keeping three patients waiting (me the longest) and not the hint of an "I'm sorry" because, after all, we don't work, what else do we have to do? Oh, and please wait on the co-pay until I get back from Dunkin' Donuts, OK? Just sit there. Sure, after all, what else did I have to do? I don't work. And they write the prescriptions.
Support can come from many areas, some you didn't even know you had. I've gotten good wishes from old high school friends I've not seen in years, until recently, and from folks on line. It's one of those George Bailey moments (you know, George Bailey[Jimmy Stewart], It's A Wonderful Life?) when George realizes who he touches as you go through life. In my DBSA support group, one lady told us that she had remembered something I had said, and that it had helped her accept her situation more. You just need to be your own Clarence sometime. Now Clarence was... oh, go watch the movie.
And when you're done with that, see if you can, whether you are Bipolar or have MS, or whatever your situation, think on the invisible lines that tie you to others. What you did or did not say that may have been a more positive response to any situation? You can't see the strings of support, but they are there. And for some of us, those strings can keep us upright, standing, or if loosened, falling into an abyss. And we have strings too. We can drag many down. But the vast majority of the challenged like me and others in support groups of all kinds look to hold those strings together with everyone.
For that is community, that is working towards peace.
More soon. Thanks for reading. Heading towards 2000 page views. Wow!
Friday, November 23, 2012
What's with Russia? Здравствуйте России! שלום ישראל!
Hello. For my American readers, hope your Thanksgiving day was enjoyable, with limited bloodletting and half way decent food. If you watched or were forced to watched any football games on TV, be grateful as well that while many people do not have the bounty we have in this land, they also did not have to watch the New York Jets.
Like I did, and have for over 40 years. And I thought MS pain was bad. Whew!
Anyway I was looking over the list of nations that peruse this blog and noticed that Russia, per blogger.com, has more readers of these words than any other nation, with the US second and Israel third.
So for my Russian readers....
Здравствуйте России!
Спасибо за ваш интерес. Мне интересно, если читатели есть заинтересованные в лечении рассеянного склероза или биполярное расстройство информации. Есть либо нарушения распространены в России? и где ты в этой большой, красивой нацией? Я хотел бы услышать от вас, но если вы предпочитаете только что прочитали, это хорошо, тоже. Мир вам.
And of course....
שלום ישראל!
תודה על ההתעניינות שלך. אני תוהה אם יש קוראים מעוניינים בטרשת נפוצה או מידע הפרעה דו קוטבי. הם או הפרעות נפוצות בישראל?ואיפה אתה שבאומה מדהימה? אני רוצה לשמוע ממך, אבל אם אתה מעדיף פשוט לקרוא, זה טוב ויפה, יותר מדי. שלום לך.
As we head in to the Holiday Season in the USA, I hope everyone finds a time of peace within themselves and offer it to others. But I've got doctors appointments and therapy next week, so back to the grind of battling disease that knows no season.
We're heading toward 2000 page views. I hope you do find this interesting. More soon.
Like I did, and have for over 40 years. And I thought MS pain was bad. Whew!
Anyway I was looking over the list of nations that peruse this blog and noticed that Russia, per blogger.com, has more readers of these words than any other nation, with the US second and Israel third.
So for my Russian readers....
Здравствуйте России!
Спасибо за ваш интерес. Мне интересно, если читатели есть заинтересованные в лечении рассеянного склероза или биполярное расстройство информации. Есть либо нарушения распространены в России? и где ты в этой большой, красивой нацией? Я хотел бы услышать от вас, но если вы предпочитаете только что прочитали, это хорошо, тоже. Мир вам.
And of course....
שלום ישראל!
תודה על ההתעניינות שלך. אני תוהה אם יש קוראים מעוניינים בטרשת נפוצה או מידע הפרעה דו קוטבי. הם או הפרעות נפוצות בישראל?ואיפה אתה שבאומה מדהימה? אני רוצה לשמוע ממך, אבל אם אתה מעדיף פשוט לקרוא, זה טוב ויפה, יותר מדי. שלום לך.
As we head in to the Holiday Season in the USA, I hope everyone finds a time of peace within themselves and offer it to others. But I've got doctors appointments and therapy next week, so back to the grind of battling disease that knows no season.
We're heading toward 2000 page views. I hope you do find this interesting. More soon.
Thursday, November 15, 2012
Should I invite the voices in my head to Thanksgiving?
One of my heroines is Marcia Purse. She's the voice of About.com's Bipolar Disorder Guide. The site is filled with info about bipolar, the various levels, treatments, and hope. But her November 13 issue struck a chord with me, in fact several. Marsha related that the voices she hears, her hallucinations, sing, or rather hum, to her. She heard everything from the Mexican Hat Dance to Perry Como being hummed solely into her right ear. Her psychiatrist has urged her to tell the hummers to shut up. Marcia is rallying and will get things right soon. Both she and her column are valuable resources.
For me, the singers start mostly during silence, like Marsha's, but also there are voices when the heat comes on. The voices, like a number of people talking, comes through the heat ducts and tell me stories but its so confusing I can't concentrate on what anyone, assuming there is anyone, is saying. I've never heard the lines you hear in the movies with hallucinations such as "Kill yourself!" or "Shoot the President!" or "Go on American Idol. Really! You're that talented!". Just mumbled stories.
Right now I've got the jazz station from Spotify on and the heat is whooshing around the kitchen but I'm fairly certain it's just me here this afternoon. But then I've got to get up and go stand under a heat duct to get the full effect, and I'm just trying to get this done. Maybe later.
Hallucinations can occur in folks with bipolar disorder when the depression or mania has psychotic features. Taking a look at what some contributors added to Marcia's site made me feel good because I'm always seeing black bugs flying around the house (I mostly thought I needed new glasses, but bugs in Northern Hemisphere winter? Nah.) and I regaled readers some months back about my being watched by the glass angel in our bedroom.
This angel....
For me, the singers start mostly during silence, like Marsha's, but also there are voices when the heat comes on. The voices, like a number of people talking, comes through the heat ducts and tell me stories but its so confusing I can't concentrate on what anyone, assuming there is anyone, is saying. I've never heard the lines you hear in the movies with hallucinations such as "Kill yourself!" or "Shoot the President!" or "Go on American Idol. Really! You're that talented!". Just mumbled stories.
Right now I've got the jazz station from Spotify on and the heat is whooshing around the kitchen but I'm fairly certain it's just me here this afternoon. But then I've got to get up and go stand under a heat duct to get the full effect, and I'm just trying to get this done. Maybe later.
Hallucinations can occur in folks with bipolar disorder when the depression or mania has psychotic features. Taking a look at what some contributors added to Marcia's site made me feel good because I'm always seeing black bugs flying around the house (I mostly thought I needed new glasses, but bugs in Northern Hemisphere winter? Nah.) and I regaled readers some months back about my being watched by the glass angel in our bedroom.
This angel....
which to me is like this Angel....
from Doctor Who.
So it sounds like as long as you're keeping the mind as engaged as you can on positive, pro active things, like moving your fingers over a keyboard, the singers/whisperers stay off where they belong. But no matter what, you should be sharing this with your doctors.
I don't think I really need to invite the whisperers in my head to Thanksgiving, as they'll come anyway. Just glad we don't have to feed them. Maybe they have their own version of the day. "These hallucinatory mashed potatoes are as miserable as you are! What? no green bean bundles? Okay that's it. Everyone, Bohemian Rhapsody! Ah, one, ah two..."
"Is this the whole meal?
Pass the dark meat to me,
How was the car ride?
Why'd you vote for Mitt Romney?"
More on Thanksgiving later. Thanks for reading. The voices in my head are telling me they need coffee. They should get their own car.
Thanks, Marcia, for keeping us informed.
Monday, October 29, 2012
Disney for the insane and home bound - Epilogue
And I did say it was great to be home, but I would like to get some sleep. But not tonight, thanks MS, so here I am near one in the morning at my desk and outside my window Sandy is whipping the trees and dropping rain on my leaf covered back yard. Or so I assume as it's dark outside.
Even with the wind wiggling trees and leaves tearing at the windshield, I still had a doctor's appointment today and made it down to Troy without hitting any media people standing around outdoors talking about how terrible it was to be standing around outdoors. The doctor recommended physical therapy for the quasi-perpetual back pain I've had, and we reviewed all the recent blood work. Doing fine there, anyway. Good to know the body (on its own) is working OK. The brain, well.....
I stopped in Lansingburgh and took some pictures of the homes I'd lived in, which I'll talk about some other time. Only mentioning it here as there is a group of Burghers on Facebook who reminisce about living in The Burgh over the last 50 years, and they are having a luncheon this Saturday which I may attend, depending on blah, blah, etc.
Okay, on to the Disney wrap up. I will admit that this time I walked a little too much. MSers out there might know the feeling in their legs (assuming you have feeling in your legs) of from your calves down to your toes...
Even with the wind wiggling trees and leaves tearing at the windshield, I still had a doctor's appointment today and made it down to Troy without hitting any media people standing around outdoors talking about how terrible it was to be standing around outdoors. The doctor recommended physical therapy for the quasi-perpetual back pain I've had, and we reviewed all the recent blood work. Doing fine there, anyway. Good to know the body (on its own) is working OK. The brain, well.....
I stopped in Lansingburgh and took some pictures of the homes I'd lived in, which I'll talk about some other time. Only mentioning it here as there is a group of Burghers on Facebook who reminisce about living in The Burgh over the last 50 years, and they are having a luncheon this Saturday which I may attend, depending on blah, blah, etc.
Okay, on to the Disney wrap up. I will admit that this time I walked a little too much. MSers out there might know the feeling in their legs (assuming you have feeling in your legs) of from your calves down to your toes...
that can only by me be described as "corn husks". Your legs, all the bone and muscles, have been replaced by stiff cornstalks and it's your responsibility to maneuver without falling over. So you tighten up every other muscle concerned with walking and try to get around, which causes problems elsewhere (see above lower back pain problems).
So the first thing is pacing yourself. Even with cutting back as we did, I was still near tears as we got out of EPCOT (which stands for Every Person Comes Out Tired [not mine, but I like it]). Next year, even slower. Whether I'll be using a cane full time, or something else, or nothing, the pace we set this year was just too much. It may be we can have a park day at the beginning and the end of the week, with down days in between. Since EPCOT is the real focus, and the Wine and Food Festival being why we go when we go, there will be more of a concentration on that, maybe even to extent of staying at Boardwalk and make getting to the park less of a chore.
Second, and I referred to this in the last post (#50!) the jacuzzi, or at least some other form of relaxation has to be part of your time. Yeah, this is a vacation, so act like it! This is more difficult when you're shepherding kids to get the proper shot with Donald D and Goofy, I'm sure, but moms and dads, take time for yourself. Getting down to Disney or any resort takes planning and if you're an MSer, it seems to take three times the energy to do half the fun. Down days are needed, because if you don't do it, MS will do it for you.
If you're in a wheelchair or using a walker, here's what I've noticed. Adults will step aside or try to not hinder your passing too much. Children may not, as they dash about being children. I was 8 once, and I dashed about too. But its more about the crowds here. The bipolar half of me absolutely hates crowds. The MS part sees hoards all going to Casey's for a hot dog the same time I am, meaning I have to stand in line with them. Standing means pain. So what do I do? Go to baseball games, vacation resorts, NYC, etc., and son of a gun there are those damn people again. I'm exhausted just typing about it. Can you get rid of the crowds? Well, you could have the media go on for days and days about a storm that is going to hit wherever you're going, and maybe it'll cut down on the group. But there's also acceptance of what is. Referring to Disney World, go to the early openings. Fast Pass rides to make sure you get what you'd like, especially the very popular Toy Story ride in Hollywood Studios.
Here's a good idea. Tell them. Disney, for all their flaws, does go out of their way to help their guests enjoy the resort. They can make suggestions for transport, and better ways to get around the Park maze. Play the MS card. You got handed this deal, you didn't ask for it. Got the handicapped sticker? You use that, right? I do. There are plenty of days when I park a bit of a ways away from where I'm going and hoof it, but just as many where I hone in on those slots like an 85 year old driving a El Dorado. It depends.
A reminder here that with PPMS, I'm missin' the remission. All crappy, all the time.
But they tell me I look great.
OK, that's it for Disney and vacation time. On to other things. Thanks for reading (1600 + page views!) and I'll talk to you soon. Bye Mickey!
Wednesday, October 24, 2012
Disney for the insane and the slow moving Day 3
Welcome to Wednesday. This will be very short. In the morning, which for me started at 4:30 AM, because MS wanted it to, and I sat in the early morning peace on our balcony. The only sounds were the burble of the swimming pool in the distance, the chirp of the crickets (the only bug allowed in Disney World, except bees but they're considered Cast Members for flower upkeep) and the grinding sound of trucks making things appear or disappear as needed. Clouds rolled across the early morning sky, threatening and then delivering rain but stopping before park openings. I dozed a bit more, and full morning came.
We had breakfast, shopped, and relaxed before lunch with friends and their enchanting three year old granddaughter. A boat ride back to Downtown Disney, farewells, and watching the World Series.
I'm using a different browser this time, so let's see if its any better. Maybe this picture will show:
We had breakfast, shopped, and relaxed before lunch with friends and their enchanting three year old granddaughter. A boat ride back to Downtown Disney, farewells, and watching the World Series.
I'm using a different browser this time, so let's see if its any better. Maybe this picture will show:
Okay, that's a start. We're hitting the parks tomorrow (Thursday).
Disney for the insane and disabled Day 2!
Good morning from the happiest so forth and so on. A decent night's sleep in a king size bed after watching the Giants thrash the Cardinals ( and the non-baseball fans out there would think that that is what would happen - the Giants being giants and the cardinals being about what six inches tall? Unless you had a whole lot of birds and did the whole Tippi Hedren thing).
I was able to get the picture from the welcome home center in place, but the bottom of yesterday's
Post did not come out as well as I'd hoped. We'll try and do better today.
And, as the Joker said, here.. we..go.
We began the day with a nice breakfast on the porch, and then Jackie went to work out. I thought about doors.
I was able to get the picture from the welcome home center in place, but the bottom of yesterday's
Post did not come out as well as I'd hoped. We'll try and do better today.
And, as the Joker said, here.. we..go.
We began the day with a nice breakfast on the porch, and then Jackie went to work out. I thought about doors.
Monday, October 22, 2012
Saturday, October 20, 2012
My pants were falling off.
It was when my pants started to come down as we entered the restaurant that I realized what day it was.
Should probably explain that, I guess.
Since I retired I've dropped anywhere from 12-15 pounds, depending on what day it is. Fewer lattes, perhaps. Anyway, my waist has remained, according to pant size, a 34. The pounds are leaving from other places. But there must be some waist removal as I now need to wear a belt, sometimes, not all the time, just sometimes.
Like today. Just ran an errand or two and then met my wife at an Italian restaurant she wanted to try. I opened the door to the SUV, and swung my legs out to the left (slowly), and then dropped to the ground. My jeans, buttoned and zipped, kept going. I grabbed a belt loop, and pulled back, making sure no one, including my wife, saw it. I walked stiffly to the door, but I do that now anyway.
As we waited for our food, I reminded myself that someone else had the same problem. My father Lou had to deal with this same mess, but that poor guy, thirty plus years back, had no idea what hit him. I remember seeing.him walking around our house, looking out windows, dressed in his fur hat and heavy jacket in June. He had the"shuffle" and his jeans were hanging off his skinny butt, like a flag at half mast. We'd stop him, adjust him, and he'd go on his way or sit in the kitchen and shake.
We don't share the heavy duty shaking - yet - but it's starting to get tougher to pick up an English muffin.
My father died on October 19, 1979.
Now the bipolar part of me wants equal time, so let's hop exactly 25 years into the future to October 19 2004. A dear friend at my job was leaving the Department of Social Services for a position with New York State. There was going to be a small farewell party for her at a certain time during the day. I promised to be there. But I wasn't. I was in another county listening to some fool talk about his excellent employment programs for welfare recipients. He went on and on and I kept looking at my watch, hoping he would have a stroke or something. And on and on he went. Finally we were freed from bondage and I dashed back to work, but the party was done, and my friend gone. Great.
The next morning I found a message on my voicemail from my friend saying a tearful goodbye. It touched me like few things ever have. Having recently learned that another person I was close to was retiring very soon, and with this message, and the bleakness of a job that I disliked and that despite 300 other employees in the building I was alone, well, my bipolar brothers and sisters, you may know what's coming. Yep. Freak out.
Yelling, throwing objects, tears steaming down my face, the worst depression I ever felt, and it went on for months until Christmas Eve when a few too many pills and a little too much wine, and my wife came home from visiting family to see her husband unresponsive on the couch. Fortunately a lot of yelling and shaking of my arm on my wife's part stirred me awake. Was it deliberate? I'm not sure, maybe not, but something in me wanted to go, but a lot more wanted to stay.
Glad I did. I got into therapy, got the help I needed, and the right drugs, and tried to relax some. Meditation, Qi Gong, and Buddhism studies gave me the ability to understand, and handle life, which came in quite handy a few years later when MS moved in, and my pants started to fall off.
I've seen my friends from DSS a few times since they left, and they are doing well. I'm happy for them, and I've good memories of those days. October 19 will always have meaning for me, how can it not? But we need the past to show how far we've come, then be in this moment, and then be in the next.
And, of course, when possible, be in the moment with a belt around your jeans. Because like the man said "Look like a fool, with your pants on the ground."
Thanks for reading. Next one's from Disney World.
Should probably explain that, I guess.
Since I retired I've dropped anywhere from 12-15 pounds, depending on what day it is. Fewer lattes, perhaps. Anyway, my waist has remained, according to pant size, a 34. The pounds are leaving from other places. But there must be some waist removal as I now need to wear a belt, sometimes, not all the time, just sometimes.
Like today. Just ran an errand or two and then met my wife at an Italian restaurant she wanted to try. I opened the door to the SUV, and swung my legs out to the left (slowly), and then dropped to the ground. My jeans, buttoned and zipped, kept going. I grabbed a belt loop, and pulled back, making sure no one, including my wife, saw it. I walked stiffly to the door, but I do that now anyway.
As we waited for our food, I reminded myself that someone else had the same problem. My father Lou had to deal with this same mess, but that poor guy, thirty plus years back, had no idea what hit him. I remember seeing.him walking around our house, looking out windows, dressed in his fur hat and heavy jacket in June. He had the"shuffle" and his jeans were hanging off his skinny butt, like a flag at half mast. We'd stop him, adjust him, and he'd go on his way or sit in the kitchen and shake.
We don't share the heavy duty shaking - yet - but it's starting to get tougher to pick up an English muffin.
My father died on October 19, 1979.
Now the bipolar part of me wants equal time, so let's hop exactly 25 years into the future to October 19 2004. A dear friend at my job was leaving the Department of Social Services for a position with New York State. There was going to be a small farewell party for her at a certain time during the day. I promised to be there. But I wasn't. I was in another county listening to some fool talk about his excellent employment programs for welfare recipients. He went on and on and I kept looking at my watch, hoping he would have a stroke or something. And on and on he went. Finally we were freed from bondage and I dashed back to work, but the party was done, and my friend gone. Great.
The next morning I found a message on my voicemail from my friend saying a tearful goodbye. It touched me like few things ever have. Having recently learned that another person I was close to was retiring very soon, and with this message, and the bleakness of a job that I disliked and that despite 300 other employees in the building I was alone, well, my bipolar brothers and sisters, you may know what's coming. Yep. Freak out.
Yelling, throwing objects, tears steaming down my face, the worst depression I ever felt, and it went on for months until Christmas Eve when a few too many pills and a little too much wine, and my wife came home from visiting family to see her husband unresponsive on the couch. Fortunately a lot of yelling and shaking of my arm on my wife's part stirred me awake. Was it deliberate? I'm not sure, maybe not, but something in me wanted to go, but a lot more wanted to stay.
Glad I did. I got into therapy, got the help I needed, and the right drugs, and tried to relax some. Meditation, Qi Gong, and Buddhism studies gave me the ability to understand, and handle life, which came in quite handy a few years later when MS moved in, and my pants started to fall off.
I've seen my friends from DSS a few times since they left, and they are doing well. I'm happy for them, and I've good memories of those days. October 19 will always have meaning for me, how can it not? But we need the past to show how far we've come, then be in this moment, and then be in the next.
And, of course, when possible, be in the moment with a belt around your jeans. Because like the man said "Look like a fool, with your pants on the ground."
Thanks for reading. Next one's from Disney World.
Friday, September 28, 2012
Angels in the Swimming Pool
I'm sitting here with a home made ice pack on my left shoulder. The pain and discomfort on my left side has grown over the last few weeks to the extent that what was an occassional tingling is now a constant, albeit not cringing, throb with tingling down the arm to my left hand, dancing all tingly like in my ring and middle fingers. The ring finger is bopping to its own music even now. Lucky I don't need it to type.
So today is water therapy day. I was hesitant to make the drive today as the Mets' R. A. Dickey was going for his 20th win and with the pain in my arm, etc. etc. But I put on the big boy pants and went down the road to Seton Health anyway. And, as usual, was glad I did. The therapist had a few moments before splash in time and we talked about the arm pain.
"Maybe you can ice it," she said. "Tone down the exercise. See how it goes. The shoulder could just be inflamed. If you find its not changed by Tuesday (our next session), then maybe its inflammation not from exercise, but is being pushed by MS."
Maybe. Always maybe with this thing.
So into the routine, and into the water, bobbing around like an apple in a Halloween tub, in five feet of warm water. I'm the youngest guy in the pool, sometimes the only guy, some times just the youngest, and I stay in my little corner moving arms and legs, using water weights lighter than I've used before. Damn, this hurts. Okay, not Spanish inquisition pain, but that's not my MS. I have the nibbled into a wheelchair by ducks version. Longer breaks between stints of work. Later, the therapist turns on water jets and the soothing spray numbs my back and arm throbbing for ten minutes or so. I gab with the ladies on good places for dinner.
The hour passes and its time to head out. Just before I leave the pool, a beautiful young lady of about ten years of age, and her mom, stepped into the water therapy room. The girl's body was skin and bones. She had the look of a child who has seen perilous times, but has come through it all with an amazing smile.
And a limp. But take her from land and place her in the water, and she floated with wide eyes and a radiant grin.
"This is like walking on the moon!" she said as she moved serenely from one edge of the pool to the other. Her mom smiled wanly and excused herself. Her child was in safe hands.
I hope she does walk on the moon.
So, another week of doctor's visits and changes in prescriptions. We doubled the Nuvigil to 200 Mgs and MY AREN'T WE UP AND PEPPY! Time to do the laundry! Again! Done? Go next door and get the neighbors! Do theirs! Finished that novel? Great, write the next! Use exclamation points!
Quoting my psychiatrist:
So today is water therapy day. I was hesitant to make the drive today as the Mets' R. A. Dickey was going for his 20th win and with the pain in my arm, etc. etc. But I put on the big boy pants and went down the road to Seton Health anyway. And, as usual, was glad I did. The therapist had a few moments before splash in time and we talked about the arm pain.
"Maybe you can ice it," she said. "Tone down the exercise. See how it goes. The shoulder could just be inflamed. If you find its not changed by Tuesday (our next session), then maybe its inflammation not from exercise, but is being pushed by MS."
Maybe. Always maybe with this thing.
So into the routine, and into the water, bobbing around like an apple in a Halloween tub, in five feet of warm water. I'm the youngest guy in the pool, sometimes the only guy, some times just the youngest, and I stay in my little corner moving arms and legs, using water weights lighter than I've used before. Damn, this hurts. Okay, not Spanish inquisition pain, but that's not my MS. I have the nibbled into a wheelchair by ducks version. Longer breaks between stints of work. Later, the therapist turns on water jets and the soothing spray numbs my back and arm throbbing for ten minutes or so. I gab with the ladies on good places for dinner.
The hour passes and its time to head out. Just before I leave the pool, a beautiful young lady of about ten years of age, and her mom, stepped into the water therapy room. The girl's body was skin and bones. She had the look of a child who has seen perilous times, but has come through it all with an amazing smile.
And a limp. But take her from land and place her in the water, and she floated with wide eyes and a radiant grin.
"This is like walking on the moon!" she said as she moved serenely from one edge of the pool to the other. Her mom smiled wanly and excused herself. Her child was in safe hands.
I hope she does walk on the moon.
So, another week of doctor's visits and changes in prescriptions. We doubled the Nuvigil to 200 Mgs and MY AREN'T WE UP AND PEPPY! Time to do the laundry! Again! Done? Go next door and get the neighbors! Do theirs! Finished that novel? Great, write the next! Use exclamation points!
Quoting my psychiatrist:
"You've got MS and are bipolar. There's nothing you can do about the MS,
so looking at your bipolar status, you can be depressed or manic. Personally,
I recommend manic. Within reason."
I'm reasoning as manically as I can. But then I think of that sweet child moving about the pool, feeling weightless and free, if for only a short time in her busy life. Tis well.
All of us in that pool are damaged, looking to hold on to the side or feel free to float and dance. Like angels dancing in the morning sun. I see them there in that water every Tuesday and Thursday, whether helping or being helped. There is no hope in my disease. But there is amazing peace. Like walking on the moon.
Wednesday, September 26, 2012
My 47 Percent Worth
Damn, I knew I couldn't do it. I knew that sooner or later I'd get around to blogging about national affairs, when I told myself, and you, beloved reader, that I wouldn't. We'd talk about MS and being bipolar and how that affects me, and maybe you, and families. But isn't the big world view also about families and the decisions made that affects them? Or it should be? Instead of wealth and power and domination?
Which brings me to Mitt Romney's 47% comments at a fundraiser. He said, according to Mother Jones site:
Which brings me to Mitt Romney's 47% comments at a fundraiser. He said, according to Mother Jones site:
[T]here are 47 percent who are with him [President Obama], who are dependent upon government, who believe that they are victims, who believe the government has a responsibility to care for them, who believe that they are entitled to health care, to food, to housing, to you-name-it -- that that's an entitlement. And the government should give it to them.
Now I am retired after putting in near 30 years in the Social Services world. I handled it all from Food Stamps, when they were actually coupons in a book and not an ATM card, to Medicaid, Cash Assistance (call it AFDC, TANF, whatever) with a trip to Employment programs. These were and are the entitlement programs that are popularly(?) known as "Welfare." The majority of the benefits go to seniors and the disabled who can not work, with a good chunk helping to support the working poor. Yes, poor people actually do have jobs. In 1996 Congress added a serious work requirement to AFDC (which became TANF - Temporary Assistance to Needy Families), and turned the program more into a block grant (this means: here's the money, here's your goal, you figure it out from there). We adjusted. Soon there were fewer people on cash assistance. It was kind of a self fulfilling prophecy since there was a five year time limit on being eligible for TANF.
I don't think I'd be going out on a limb too far if I said that Welfare, in any of its forms, has ever been popular with the taxpayers. Hell, if you walked around the building(s) where I worked, we weren't all that thrilled with it, despite the paychecks we got on Thursday. We had the clearness to see 2nd and 3rd generation AFDC/TANF recipients. Something was clearly not working, and it wasn't just the recipients. Frustration for those of us working in the system was reflected by empty desks (and hiring freezes), and piled up work so when recipients contacted the agency that phone may just ring and ring, adding to their frustration and on and on. The assistance system as it stands now is fundamentally flawed, means testing the poor for minimal assistance, and Congress was considering more cuts in Food Stamps but fortunately(?) Congress did what it does best in the summer. Nothing. Sorry, farmers, looking for help.
I recently read a post from a former local supervisor at my agency noting his frustration when he left the DSS building in Albany seeing recipients outside smoking and using cellphones. Of course, county employees such as him and myself merely went to the back of the building to smoke. We could use our phones at our desks, but only during lunch hour (Note to present administration: How's that working for ya?). I too would feel odd when I left the building and see this same situation. And I think that's one of the things that makes it so easy to dump on these assistance programs.
You can see it. You can drive around cities in I would guess the entire country and find areas of poverty. People are standing around the welfare building. A semi-hobby of mine is when I was traveling to find the welfare department for that city/county. And there you are driving by, going to work or something important to you, and those people (sorry, "those people" - if you have any racist tendencies, please fill in the group you don't like of your choice) are standing there in front of those buildings. Why don't they get a job? I mean, money for nothing and kicks for free (we'd provide the kicks, or security would. Ah, power.).
Poverty is real. Drive through the same cities I did and thousands more I won't be able to. There are areas that just don't make the video. I live down the road from posh Saratoga Springs which brings tourists galore every summer. Right near the swell homes and mansions and race tracks are dilapidated homes that people still live in. Glad to provide a tour. Infested public housing visits a speciality.
I hope, and I think there may be some validity, that that gut "Get a job!" reaction is one that hides the more serious thought of concern for people in serious trouble, or thinking of the fact that you yourself are living paycheck to paycheck, and are not that far from not being able to feed your family.
We think in two ways - love and fear.
All right, I'm supposed to be dealing with MS and BP here. And here's how I barely connect the conditions and my Department of Social Services years (aside from the stress from my DSS years, which you might detect in the writing, added to MS and BP symptoms). My wife Jackie and I attended a presentation at the local MS Society last week. These are informative little get togethers, this one dealing with the yucky details of wills, living wills, funeral preplanning and the like, but always good pizzas and subs to nosh while meeting other folks dealing with MS. One gentleman, older and using an oxygen tank, asked about a supplemental needs trust. Click to the left if you want to know what it is. Anyway, what did get me was his comment:
"Those people in Medicaid in Albany County don't know nothing. That place is a joke!"
My wife and I shared a look of knowing. But here was a man trying to find help and stated that he was being blocked. Long ago and far away, his concerns would have ended up on my desk as I was the supervisor of that unit. A couple of folks who knew my background at the meeting looked over at me and smiled at my smile. DSS a joke? I don't know. I'm not there (and admit there are days I wish I could be, for even in my dreams I am there just helping out) and have little contact with staff there now, except for old friends. Could I have solved the gentleman's problem if I was still in the chair? Dunno, and never will.
This man, as far as I could tell, is part of Mr. Romney's 47%. Looking to the government for assistance and, oddly, asking the government to not count at least part of his income (a pension of some sort) so he could qualify for more assistance. I would hazard a guess this guy pays no income tax, but does his part with other local taxes such as sales tax. I do pay income taxes on my government pension (New York State - County employee) but I doubt I'd get much of a break with any proposals. However, I am DEPENDENT on that income (granted I worked for it in the past), and also DEPENDENT for my health insurance, which doles out to pay for the many doctors and prescriptions. I could try working but those of you who know with both MS and BP I'm not very helpful most of the day. But now and then...
Like the country song goes: I'm not as good as I once was, but I'm good once as I ever was.
So yes, Mr. Romney, I am dependent on that, and I do have an entitlement feeling. I worked hard for these public benefits, at least I think I did, and now as these disorders take greater control of my life, I will be dependent upon the health care system to keep me going for as long as I can. Whoever is in charge over the next four years may affect that health care system, assuming Congress does anything else except send me postcards telling me what a great job they're doing. So I am watching.
One last thing. We spend at the federal level approximately 13 billion dollars a year on TANF. We have spent approximately 1.376 TRILLION dollars on the Afghan and Iraq wars in the past ten years (or 125 billion dollars a year). I'm fairly sure that no one on my staff killed any of the recipients we worked with, though there were days when rocket launchers were requested. I kept mine locked up.
You don't see the war. Maybe the coffins. But you can't tell the coffin to get a job. It's got one.
More later. Thanks for reading.
Wednesday, September 19, 2012
Wedding Anniversary
Jackie and I were married September 21, 1985 in a chapel at my alma mater, Siena
College Loudonville ,
New York
And we lived happily ever after.
The end.
The beginning.
When we met in 1982, I was bipolar. When we married, I was bipolar. And now, 27 years later, I still am. It’s just that no one told me (us) that I was
bipolar until 2005.
So why I am what I am has a name.
And yet she married me.
In our early days, I told her about the strange disease my
father died of, and how he changed and the damage that did to the family. I told her I thought I might, might, get it too.
And then I told her that I felt it best I not have children,
seeing how bipolar and whatever my father had can be passed along. This must have concerned her then, as it does
now.
And yet she married me.
She saw me depressed, manic, and everything in-between. She saw my anger, my battles internal and
external, how my job affected me. How my
bipolar mother and I stood at odds and yet I had to save her time and again. My wife saw how it was.
And yet she stayed.
We dealt with the losses of family and friends, being there when
we could be, cheering from afar when that was all we could do. And we stayed together, holding each other close
as the world we knew tumbled down.
And then I stumbled too much, and got help. And she was there, making sure pills were
taken, and celebrating a quieter Tom.
But still a laugh riot on occasion.
Then my legs started acting up, that is, going their own way
now and then.. Doctor upon doctor, then the diagnosis. I called her from my car (using Onstar, of
course, and I was parked) and I told her over the airwaves. I have MS, which is what my father had She did exactly what I thought she
would. She looked it up. When I got home, the conversation began, and
it continues.
And she stays. Tonight we go to a MS Society presentation on living life to the fullest.
My partner, and my best friend. We go on together.
I treasure the anniversaries more now. No parties or any of
that. Just the two of us sharing a meal,
talking baseball. Time is our friend and
enemy. She holds me up, I make her laugh, we know its all precious.
More to come. Thanks for reading.
Friday, September 14, 2012
Meet your mind! or mine, actually...
Hi, Before we start just a big thank you to the now over 1000 hits on the blog. Glad you stop by.
Okay, now take a look at this:
This is my brain, or the back half anyway, courtesy of my most recent MRI at Samaritan Hospital in Troy, NY (props for the hometown!). In the previous blog I wrote about using reiki to help some of my bipolar symptoms, and to dig around at the sadness tearing me apart. I said that I'd stopped using reiki as a treatment once the MS made itself known, as the person helping me at that time touched the back of my head in a normal reiki matter, that generated nights of terror in my brain. The reason I have got the picture here is to show you the physical reasons. Look about one inch to the right of center of the picture. See that little white dot? That's an MS lesion. Also looking down toward the right hand corner of the picture, you see a small .indentation in the outline of the head. See that? (You know I wish Blogger had more little tools to use, like a pointer, or an arrow.) That's where a reiki user places his or her fingers to send healing through that area. Reiki + lesion = Bad thing. At least for me.
My neuro as noted told me I had 50-100 lesions in my brain. One of them just showed up right there in the picture (at the very tip of the occipital lobe), and perhaps there's another near where my eyes take in light and sight (also in the occipital lobe) and that ones playing around, too, whiuch may be why light is so bright and color so brilliant.
Here's a brain diagram so you can see the whole thing:
Okay, now take a look at this:
This is my brain, or the back half anyway, courtesy of my most recent MRI at Samaritan Hospital in Troy, NY (props for the hometown!). In the previous blog I wrote about using reiki to help some of my bipolar symptoms, and to dig around at the sadness tearing me apart. I said that I'd stopped using reiki as a treatment once the MS made itself known, as the person helping me at that time touched the back of my head in a normal reiki matter, that generated nights of terror in my brain. The reason I have got the picture here is to show you the physical reasons. Look about one inch to the right of center of the picture. See that little white dot? That's an MS lesion. Also looking down toward the right hand corner of the picture, you see a small .indentation in the outline of the head. See that? (You know I wish Blogger had more little tools to use, like a pointer, or an arrow.) That's where a reiki user places his or her fingers to send healing through that area. Reiki + lesion = Bad thing. At least for me.
My neuro as noted told me I had 50-100 lesions in my brain. One of them just showed up right there in the picture (at the very tip of the occipital lobe), and perhaps there's another near where my eyes take in light and sight (also in the occipital lobe) and that ones playing around, too, whiuch may be why light is so bright and color so brilliant.
Here's a brain diagram so you can see the whole thing:
Brains are normally not this colorful. Ask any zombie, though that's hard as they don't say much except "naaaaaghhhhhhh", and if you're close enough to ask, you're close enough to be eaten.
I'm not a doctor, I just got the disease(s), and I'm just trying to deal with them. But it did get me thinking. If a person is trying to help heal your body by laying her/his hands on you, using prayer or not, or just being open to the universe to bring that energy to you, and you think this will help you as you take that energy in, no matter what you think of it, doesn't get one to ponder that there is Something Else?
My body is breaking down. My brain is full of lesions and chemical imbalances that only handfuls of pills can keep straight. My mind, however, the real me, is having a great time taking this all in, watching this, writing it down and sharing it with you. As long as the hands keep working, of course.
So there's me (Tom the guy), and there's Me. Want to try it yourself? Think of a favorite movie, or TV show. Now close your eyes and watch it in your private movie theater. Your order goes out to the hippocampus in the brain where "memories" are stored and the movie starts, and it seems like you can see it on the inside of the middle of your forehead. That's where you go to see the film. Your private movie theater. Popcorn?
What we're dealing with is a three way battle. Your body, the brain, and You (what a Buddhist might call your mind, or others faiths call your soul). The three of you have to get along for about 70-75 years or more if you're lucky. Then the body dies, the brain stops functioning, and You, well, that's up to whatever belief system you may ascribe to. But you are seperate from your brain and body. You can receive, from Some Source, healing. Perhaps you become that healing energy. I don't know.
You would think that once the body is attacked by disease, that the three parts (body,brain and Me) would rally, and this happens sometimes. There's a lady in my physical therapy class whose come back from stage 4 cancer...twice. But with diseases like MS and bipolar disorder, the brain kind of flies off by itself and plots with the diseases against the body, and all You can do is remain vigilant as you watch yourself do dumb things, or do nothing at all.
It always will come down to the Me in You. Pills help, therapy helps, support networks help. But it's still up to the Me in You. That's who takes command. Stand up. Move. Therapy. Laugh. Hug. Live.
You can spread that energy (whatever you got left) from (whatever) Some Source to others. You don't need reiki, a smile will do for a start.
More to come. Thanks for reading.
Monday, August 13, 2012
DWMS (Dancing with MS)
We Martins are a partying lot, and dance like the Jacksons. Mostly Andrew and Mahalia Jackson, but Jacksons nonetheless. All seriousness aside, my parents could cut a rug back in the day, and my sister was pictured in her high school yearbook as a Shindig go-go dancer. If you have no idea what a go-go dancer is, and certainly, no idea at all what Shindig is or was, find your local baby boomer. We're the ones sitting in the mall drinking coffee (none of that Barstucks crap for me, buddy) in the food court and complaining.
One of my favorite memories of my siblings was them dancing at a wedding, I don't remember whose, and twisting the night away. Soon my sister would be gone and the dancing would stop.
I'd have to carry on on my own. Easy, of course, because, contrary to popular thought, Michael Jackson is not dead.
He lives on...
in me....
Okay, there's no video here of my fancy moves because, well, I'm not quite ready to show that yet. Here's the story. It was the union holiday party in 2009, and Jackie and I attended along with my staff. Normally I wouldn't attend these kind of things, because, well, maybe I just wanted to keep a distance between myself and other county workers, not that I felt better than them, but my world was just different. Sit around and watch them drink? Listen to them complain about significant others? Kids? Significant others' kids? Nah. Okay, so maybe there was some superiority in there.
Until I started my unit and I became involved in the lives of these four women, my staff. We were in our own world, separate from the actual agency, different address, and dealing with a specific group of clients. As the months went by we got to know each other better, and since I was right on the floor with them, and not sitting in an office, I could hear the banter, the questions and concerns, and even when they needed each other to deal with a difficult situation. I became more and more delighted with what I saw, and grew in respect for my staff and what they accomplished. My kids.
So when the holiday party came up, they asked if Jackie and I would attend and we did. The evening was fine and we toasted our success, ate and danced. Naturally I hit the dance floor (I am a Martin, too) and dazzled the folks with my Michael Jackson moves to "Billie Jean". Yep this plus fifty slightly chubby bald guy can moonwalk, crotch grab, flip his hat, and everything you see Michael do above. Not near as well, of course. But I hold my own. So the crowd applauded, and were stunned that this guy who was all over the office, never said a word, but fixed your computer in two seconds, actually did other stuff.
I enjoyed the dance, and plopped down in my chair, and my legs went numb. That was the real beginning of MS, the real thought that something was wrong, that I'd better get a doctor, and here I am two and half years later looking at this:
One of my favorite memories of my siblings was them dancing at a wedding, I don't remember whose, and twisting the night away. Soon my sister would be gone and the dancing would stop.
I'd have to carry on on my own. Easy, of course, because, contrary to popular thought, Michael Jackson is not dead.
He lives on...
Okay, there's no video here of my fancy moves because, well, I'm not quite ready to show that yet. Here's the story. It was the union holiday party in 2009, and Jackie and I attended along with my staff. Normally I wouldn't attend these kind of things, because, well, maybe I just wanted to keep a distance between myself and other county workers, not that I felt better than them, but my world was just different. Sit around and watch them drink? Listen to them complain about significant others? Kids? Significant others' kids? Nah. Okay, so maybe there was some superiority in there.
Until I started my unit and I became involved in the lives of these four women, my staff. We were in our own world, separate from the actual agency, different address, and dealing with a specific group of clients. As the months went by we got to know each other better, and since I was right on the floor with them, and not sitting in an office, I could hear the banter, the questions and concerns, and even when they needed each other to deal with a difficult situation. I became more and more delighted with what I saw, and grew in respect for my staff and what they accomplished. My kids.
So when the holiday party came up, they asked if Jackie and I would attend and we did. The evening was fine and we toasted our success, ate and danced. Naturally I hit the dance floor (I am a Martin, too) and dazzled the folks with my Michael Jackson moves to "Billie Jean". Yep this plus fifty slightly chubby bald guy can moonwalk, crotch grab, flip his hat, and everything you see Michael do above. Not near as well, of course. But I hold my own. So the crowd applauded, and were stunned that this guy who was all over the office, never said a word, but fixed your computer in two seconds, actually did other stuff.
I enjoyed the dance, and plopped down in my chair, and my legs went numb. That was the real beginning of MS, the real thought that something was wrong, that I'd better get a doctor, and here I am two and half years later looking at this:
That's about as far as I got today, looking out my den window at the lawn and my tool shed because on Saturday, one of my staff got married, and we were invited to the wedding. We did what you do at weddings, ate, drank, pictures and pictures, hugged old friends, told stories and laughed. And danced. The true celebrations of life.
I was out on the dance floor bouncing around to "Sweet Caroline" (Red Sox fans-if we have nothing else, we have that) and then heard "Billie Jean" begin. My bipolar brain said "Do it again. Go ahead. I double dog dare you. Everyone will be looking at you and you can be the center of attention. Manic time. Here we go." The wiser but sadder MS part of the brain merely said "You can if you want, but you'll pay for it. You know that." The evil myelin eating monster merely growled like the Hulk and looked for more neurons to munch in my brain.
I said to my wife "This is where I came in." and headed for the door, and home.
But until I got off the dance floor, I moonwalked off, baby. People gawked, but their faces were unfamiliar. Most faces are now, but even the few who I still could recognize, clapped as we departed.
And I did pay for it. Man, Sunday I was slower than a turtle on Prozac. Sat and watched ball games, and the Olympics. Rallied for coffee, and then plop. And Monday morning, see above picture. I admit that its a nice scene, always cool and inviting even in the warmest weather. And I did actually mow that lawn. No moonwalking.
The moral of the story is that you still need to dance, even if its only in your head. I saw that old song-
and I hope you dance.
And that video of me is around someplace. Right now its my turn to go to the mall and grumble with other middle aged dudes.
More to come soon. Thank you, Johnny Pesky. I hope you and Ted Williams are fishing someplace.
The moral of the story is that you still need to dance, even if its only in your head. I saw that old song-
And that video of me is around someplace. Right now its my turn to go to the mall and grumble with other middle aged dudes.
More to come soon. Thank you, Johnny Pesky. I hope you and Ted Williams are fishing someplace.
Monday, July 16, 2012
Close to Home (and Hello Russia!)
Before I get to today's topic, I need to admit something. I do look at how many hits this blog gets, and right now we're closing in on 500. Now a good chunk of them are me checking spelling and doing edits when I need to, but I also look at where the hits come from, and naturally the USA is first, but what really surprised me is that Russia is third on the list. So for all my Russian readers:
Здравствуйте, дорогие друзья!
I hope that my Russian visitors aren't just hackers or porn trollers, but a hit is a hit. There are people in Eastern Europe with either MS or Bipolar or, lucky them, both. I'd be interested in how they are coping.
We're back to 90+ degree weather here in the Great Northeast so I am moving as well as I can in this type of environment, which is verrrrryyy slooowwly. Air conditioning, fans, the mall and the movies (This weeks flick: Salmon Fishing in Yemen). And using a bit of the air conditioning in the car - my car has over 100000 miles on it and I'm always a little cautious with it. And gee, this month I'll actually finish paying for the car.
I stayed close to home this week, except for the previous blogged trip to Cooperstown, but I did opt to sit outside for a evening with my kids, er, I mean my former staff from Albany County DSS. It was a retirement party for Linda, and the whole staff with significant others showed up
View Larger Map
I hope there's a picture up there. Anyway, we had the get together at Philly's in Latham NY, and oddly enough, the place, in its previous incarnation as The Lookout, was where my wife and I had our second date thirty years ago this coming December.
So it had significance to both my work group, and my home group, and its more that word "home" that I'd like to talk about. From some of the earlier posts in this series (and you've read them all, right?) it might have become clear that I don't have a great relationship with my family, in that, with the exception of one person, I'm sort of at the maybe you get a holiday card/maybe you don't level. And that is sad, but it is what it is. So the people that I've turned to since the diagnosises of bipolar and MS have been work associates, people with similar beliefs, and those that enjoy the written word. They have become home. Along with my house. In the years before I had to retire we'd worked to get the house just like we always wanted it, but then a flood turned everything upside down and, to our surprise, gave us a chance to rip up and lay it down, start over and do it right. We did. The house is comfy and welcoming. The yard is as green as I can make it, and after 20+ years, even that ain't much. But on a snowy day in February, or during the holidays, there are few places that mean more to me, in fact none. But in actuality....
My wife is my home. Where she is, is where I want to be. I've been homeless, lived in a 1976 Chevette with all my clothes, cleaned up where I could, found a cot to sleep on. And as long as Jackie was with me, it would have been just fine. Fortunately, she came into my life then. Ain't been homeless since.
The staff I had dinner with last week is home. We had just 18 months together, but all agree they were the best 18 months of all our careers, though I hope the younger staff gets a chance to do great things, as any proud poppa would want for his children. For now we get together and I hear the latest in their lives, we trade stories, laugh and raise a glass. It is good, and I am a fortunate one.
Lansingburgh is home. Over the last few years I've become the family geneaologist and have studied who we are and where we came from, finding the graves and putting the stories together. Through Facebook I've gone back to see the 'Burgh through the eyes of those who still live there, and those who once did. In early August, I'll be having a sit down with some of those folks to honor my sixth grade homeroom teacher. Yep. She's still around. I'm looking forward to it. Just from the pictures the Facebook group puts up, I'm already getting an ever deeper appreciation of that place I grew up in and, yes the world moves on and things change, but you keep the spirit within. For me it's always Summer 1967 and I'm ten years old. And everything is still possible.
Hey, for those of you who read the Five Keys to Mental Health, you may be seeing some of those keys in place here. Something to do. Someone to love. Something to look forward to. Mental health is about strong roots, roots given by family in however you determine it, but having the ability to sway with the winds of time. When the winds subside, you're still there. To run a metaphor smack dab into the ground, if your internal house is in a good state of repair, you can weather any storm.
Lyrics from a Billy Joel song:
Home can be the Pennsylvania Turnpike
Indiana's early morning dew
High up in the hills of California
Home is just another word for you.
You're My Home
So home is where the heart is, as someone said. For those of us with extra challenges, sometimes the doors to that home have been closed and locked, and we spend so much of our time banging on the windows begging to be let in that we forget or ignore the open door and warm hearth waiting for us just down the road.
And maybe that open hearth and home are there so that you can welcome another.
Stop on by, we've got room.
And to my Russian friends - До свидания!
More stories soon. And to whoever the 500th hit is on this site, thanks. If it's me, I'm welcome.
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| From Lisa at Brass and Ivory |
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