A beautiful title to a song by Mumford and Sons (thanks nephew!). Today the title of the song really struck me - my soul is waking. Waking to what life is really about, what pain I have been hiding, struggles I have made it through and the beauty of life itself. This leg of my journey through life has brought me to search my soul.
The struggles and pain of life are not meant to make you suffer, but to make you stronger and help you to differentiate between crappy and happy! Life is not about perfection, in fact, it is about imperfection. It is about finding the little things to make your soul happy. For me it is my little ones running up and throwing their arms around me...just because. It's about having a horrible day, coming home and Big Daddy giving me a hug - no words, no advice, no lecture, just a hug to let me know he always has my back. It's about finding that one last flower in the fall - even though it only has 3 petals left and wilting, it still makes me smile. It's about appreciating that when I have trouble walking, I know it could be worse. It's about finding love and true happiness - no matter what age, shape, size or otherwise. It's about going though hell and making it out alive to tell your tale so others may learn from your mistakes. It's about NOT hiding who you are - show your TRUE soul to the world and screw anyone who doesn't want to see you as you are. People want you to put on the "normal" mask, just to make themselves feel more comfortable. I know that I make people uncomfortable when they can SEE the MS, and some are uncomfortable just knowing. The MS is a part of me, part of who I am, part of what has sculpted me into who I have become. Yes, MS is a part of my soul...and I am OK with that.
Monday, December 6, 2010
Wednesday, November 17, 2010
Children are Psychic...Just to Make You Crazy
Why, on days you can sleep in, do the children wake up at least 30 minutes earlier than you normally would on a busy day? Why is it that when you are in a great mood they listen and behave perfectly, yet when you are having a horrible day and need them to behave, they act like they were raised by a pack of wolves? Because they are psychic...or they are secretly plotting against you!
Being a person with a chronic illness makes the above scenario even more frustrating. I have to admit...I admire, and send my deepest sympathies, to all those working parents out there! When my daughter was born I was lucky enough to work from home, because of the MS. When I was pregnant with my son I was laid-off. Yes, the company laid me off when I was 6 months pregnant so they could give my job to the General Manager's son who could not find a job in the failing economy...but that's a story for another day. Back to my point - I have a hard time taking care of all the household duties as well as the kids and their schedules without working a full-time job. To me it is unimaginable, even physically impossible, how working parents manage to get everything done in a 24 hour period AND manage to get at least 1 hour of sleep per night, even when having to deal with "psychic" episodes! And come to think of it, I swore one time when I woke in the middle of the night I heard the two of them talking in Mayhem's room...maybe it's time to buy that video Barbie...
Being a person with a chronic illness makes the above scenario even more frustrating. I have to admit...I admire, and send my deepest sympathies, to all those working parents out there! When my daughter was born I was lucky enough to work from home, because of the MS. When I was pregnant with my son I was laid-off. Yes, the company laid me off when I was 6 months pregnant so they could give my job to the General Manager's son who could not find a job in the failing economy...but that's a story for another day. Back to my point - I have a hard time taking care of all the household duties as well as the kids and their schedules without working a full-time job. To me it is unimaginable, even physically impossible, how working parents manage to get everything done in a 24 hour period AND manage to get at least 1 hour of sleep per night, even when having to deal with "psychic" episodes! And come to think of it, I swore one time when I woke in the middle of the night I heard the two of them talking in Mayhem's room...maybe it's time to buy that video Barbie...
Monday, November 8, 2010
Disease for Sale!
I have come to the conclusion that you must become a salesperson when you have a chronic illness. Example: Friend: "Hey! How are you?"
You: "Good! I'm feeling OK!"
Reality - You are in excruciating pain, are so tired you can't see straight and can't even remember your own name.
See, this is not the information others want to hear for a number of reasons. First of all, it makes them feel horrible to know that someone they care about is going through something so awful. Second, they feel even worse because they can't do anything to make it better - that's what we as humans are programmed to do when something is wrong, we fix it and make it better. Lastly, we (those of us "blessed" with illness) remind people of their own mortality, how fragile life is and how your world can be turned upside-down in a heartbeat.
I have known many great "salesman"...my father is a great salesman, both in reality as well as illness-wise. One of our conversations went a little something like this...
Dad: "Hi honey! How are you?"
Me: "You know, hangin' in there. Kids are doing good, hubby is doing good. How are you?"
Dad: "Oh, how is Princess' school going?"
Me: "It's good! She loves it...wait...how are YOU doing?"
Dad: "So, she really likes it, huh? Is she making new friends?"
Me: "Dad, how are YOU doing? You didn't answer my question."
Dad: "Well, I have to go in for surgery...but it's outpatient, you know, no big deal."
Me: "Holy cow! Dad, what are you having done?!"
Dad: "Just some skin cancer, nothing big. It's not the bad kind, just snip a few pieces and then I'm home!"
As you can see, I have been trained by the best.
It's easier to tell the people you love only a part of what is really happening and how you are feeling rather than hear the hurt in their voice and see the agony through the tears in their eyes. So...other than the crippling pain, debilitating fatigue and dementia-like memory problems..I FEEL GREAT!!!
You: "Good! I'm feeling OK!"
Reality - You are in excruciating pain, are so tired you can't see straight and can't even remember your own name.
See, this is not the information others want to hear for a number of reasons. First of all, it makes them feel horrible to know that someone they care about is going through something so awful. Second, they feel even worse because they can't do anything to make it better - that's what we as humans are programmed to do when something is wrong, we fix it and make it better. Lastly, we (those of us "blessed" with illness) remind people of their own mortality, how fragile life is and how your world can be turned upside-down in a heartbeat.
I have known many great "salesman"...my father is a great salesman, both in reality as well as illness-wise. One of our conversations went a little something like this...
Dad: "Hi honey! How are you?"
Me: "You know, hangin' in there. Kids are doing good, hubby is doing good. How are you?"
Dad: "Oh, how is Princess' school going?"
Me: "It's good! She loves it...wait...how are YOU doing?"
Dad: "So, she really likes it, huh? Is she making new friends?"
Me: "Dad, how are YOU doing? You didn't answer my question."
Dad: "Well, I have to go in for surgery...but it's outpatient, you know, no big deal."
Me: "Holy cow! Dad, what are you having done?!"
Dad: "Just some skin cancer, nothing big. It's not the bad kind, just snip a few pieces and then I'm home!"
As you can see, I have been trained by the best.
It's easier to tell the people you love only a part of what is really happening and how you are feeling rather than hear the hurt in their voice and see the agony through the tears in their eyes. So...other than the crippling pain, debilitating fatigue and dementia-like memory problems..I FEEL GREAT!!!
Thursday, October 28, 2010
Breathe Damn It...Breathe!!!
OK, so I have realized that I am not breathing. Obviously not in the general sense of the term with the whole "air in, air out" thing. I am referring to the fact that I do not take deep breaths...almost never. I am a shallow breather (not to be confused with a prank caller just known as a "breather"). Have I really been spending my entire life holding my breath? Not breathing how I should...just enough to keep the ol' ticker pumping? The only time I seem to take a deep breath is if I am about to cough or I'm exercising - even then I am always reminded by the instructor that I need to breathe. I also find that most people do not take full breaths, you know the kind that when you inhale the air fulls your lungs and your belly rises too. Why is this such a hard concept to grasp?
I don't exactly know why I don't belly breathe. I know that when I am conscious of it and try to do this I feel better, happier and calmer. My shoulders drop and any tension slowly slips away. Why is it that my body will not do this on it's own? I shouldn't have to remind my body to breathe properly, right? It's not like I have to stick to an air budget so I don't go over my allotted amount of air. Why is my body rebelling against air? Or is it rebelling against me? What did I ever do to it? Well, there was the time when I was a kid and fell on the playground and split my chin open. There was also the time I gave myself a spiral fracture in my toe (turning it around 45 degrees, mind you) when I was chasing Sherman around the house, then there was the time I....OK, well maybe I did a few things to make my body angry. Maybe body is trying to suffocate the MS? Oooh...I got it! Maybe my body is slowly training so I can become a free diver! Hmm...maybe not.
The fact of the matter is that none of us breathe properly. We all need to get the oxygen in our systems to help our bodies function like well-oiled machines. We need to also metaphorically breathe by pushing out the stagnant things in our lives that are slowly strangling us and bring in freshness, clarity and perspective. We need to take deep breaths to clear our hearts, minds and bodies. Air is free and we need to take advantage of the benefits..before they starting taxing that too. I am making a pledge to myself that I will fervorously attempt to breathe deep at all times and, if not...there's always free diving.
I don't exactly know why I don't belly breathe. I know that when I am conscious of it and try to do this I feel better, happier and calmer. My shoulders drop and any tension slowly slips away. Why is it that my body will not do this on it's own? I shouldn't have to remind my body to breathe properly, right? It's not like I have to stick to an air budget so I don't go over my allotted amount of air. Why is my body rebelling against air? Or is it rebelling against me? What did I ever do to it? Well, there was the time when I was a kid and fell on the playground and split my chin open. There was also the time I gave myself a spiral fracture in my toe (turning it around 45 degrees, mind you) when I was chasing Sherman around the house, then there was the time I....OK, well maybe I did a few things to make my body angry. Maybe body is trying to suffocate the MS? Oooh...I got it! Maybe my body is slowly training so I can become a free diver! Hmm...maybe not.
The fact of the matter is that none of us breathe properly. We all need to get the oxygen in our systems to help our bodies function like well-oiled machines. We need to also metaphorically breathe by pushing out the stagnant things in our lives that are slowly strangling us and bring in freshness, clarity and perspective. We need to take deep breaths to clear our hearts, minds and bodies. Air is free and we need to take advantage of the benefits..before they starting taxing that too. I am making a pledge to myself that I will fervorously attempt to breathe deep at all times and, if not...there's always free diving.
Tuesday, October 26, 2010
La, la , la, la...blah, blah, blah blah
Why is it that once a child hits age 5 they can no longer go without making a sound for longer than 30 seconds? Princess Punky, the 5 year old, will make noise from the time she gets up until the time she goes to bed. She will sing or hum or talk. Now, there don't have to be actual words, songs or phrases. She will make up words, hum or repeat a sound or two word phrase...over and over and over.
Why is it that we have difficulty finding comfort in silence? What is so wrong about the stillness that makes us feel the need to fill the void? As a child the quiet is the reminder that there is no one to play with...or simply a chance to get attention. But, as an adult why is it that the moment we wake up we turn on the "news", or when we get in the car we immediately turn on the radio - even when someone is with us? Why must the silence be filled with background noise or music? We try to fill the empty spaces even when we speak - how many times do you say "well", "um", "er" or "like" in a sentence when you are thinking of the next thing to say or when there should normally be a pause?
Silence gives us time to reflect - on the things that have happened, should happen or what we want to happen. It makes us take stock of our lives and actually take the time to FEEL and process the world around us instead of mindlessly running on auto pilot. The stillness even forces you to be aware of things that sometimes you are trying to ignore. You know, the giant pink gorilla in the corner of the room? It is becoming increasingly harder and harder to find some "peace and quiet" with cell phones, laptops, wi-fi, iPhones, iPads, iPods - we all have some electronic device permanently attached to our face! Modern day living has removed the "peace and quiet" from our lives - so much so that when we DO find it, we haven't a clue what to do.
We all must learn to embrace the silence. FEEL what it is like in the silence and stillness. Look that pink gorilla in the face...and shake hands.
"In the attitude of silence the soul finds the path in a clearer light and what is elusive and deceptive resolves itself into crystal clearness." Mahatma Gandhi
Why is it that we have difficulty finding comfort in silence? What is so wrong about the stillness that makes us feel the need to fill the void? As a child the quiet is the reminder that there is no one to play with...or simply a chance to get attention. But, as an adult why is it that the moment we wake up we turn on the "news", or when we get in the car we immediately turn on the radio - even when someone is with us? Why must the silence be filled with background noise or music? We try to fill the empty spaces even when we speak - how many times do you say "well", "um", "er" or "like" in a sentence when you are thinking of the next thing to say or when there should normally be a pause?
Silence gives us time to reflect - on the things that have happened, should happen or what we want to happen. It makes us take stock of our lives and actually take the time to FEEL and process the world around us instead of mindlessly running on auto pilot. The stillness even forces you to be aware of things that sometimes you are trying to ignore. You know, the giant pink gorilla in the corner of the room? It is becoming increasingly harder and harder to find some "peace and quiet" with cell phones, laptops, wi-fi, iPhones, iPads, iPods - we all have some electronic device permanently attached to our face! Modern day living has removed the "peace and quiet" from our lives - so much so that when we DO find it, we haven't a clue what to do.
We all must learn to embrace the silence. FEEL what it is like in the silence and stillness. Look that pink gorilla in the face...and shake hands.
"In the attitude of silence the soul finds the path in a clearer light and what is elusive and deceptive resolves itself into crystal clearness." Mahatma Gandhi
Monday, October 25, 2010
Holy Goose!
OK, well, today was a WEIRD day. I was driving and had to slam on my brakes to avoid being hit by a gaggle of geese! Yes, you read it correctly. No I did not almost hit the geese... they almost hit ME! I had to slam on my brakes as they decided at that very moment in time to fly directly across the street!!! Actually they half of them ran into the street in front of my car and the other half flew AT my car! Were they the part of the Life and Death Brigade?! Death wish maybe? Hmm...maybe the suburbs are no longer safe.
After I came to grips that I may have wronged a goose sometime in my past and now have a "hit" put on me by the G-Mob, I began to think about the "signs" people always talk about. Signs from the universe, God or whatever you believe in. You are supposed to view the world with an open heart and open mind to really see the signs and should heed the advice in their hidden messages. Maybe the universe was trying to tell me something...but what?! Don't drive so fast? I was on a side street going 30 mph. Don't cross the street before looking both ways? Look before you leap? Don't trust feathered animals? Maybe the universe was telling me to be more spontaneous, but careful. Or that I should learn to spread my wings and soar so I can rise above the oncoming troubles of life...or maybe they were just a bunch of crazy birds.
After I came to grips that I may have wronged a goose sometime in my past and now have a "hit" put on me by the G-Mob, I began to think about the "signs" people always talk about. Signs from the universe, God or whatever you believe in. You are supposed to view the world with an open heart and open mind to really see the signs and should heed the advice in their hidden messages. Maybe the universe was trying to tell me something...but what?! Don't drive so fast? I was on a side street going 30 mph. Don't cross the street before looking both ways? Look before you leap? Don't trust feathered animals? Maybe the universe was telling me to be more spontaneous, but careful. Or that I should learn to spread my wings and soar so I can rise above the oncoming troubles of life...or maybe they were just a bunch of crazy birds.
Sunday, October 24, 2010
Welcome to my Secret Lair...
Greetings and welcome to my blog. The part of my family will be played by Gimparella as me, Big Daddy as my husband, Princess Punky as my daughter and Little Mayhem (a/k/a Boo Boo) as my son, and last, but not least, Sherman as our loyal and faithful Boxer. But seriously, I will probably refer to my family as the names above to help protect their privacy...and mine.
A little background on me and my "situation" (no I don't have sick-pack abs...though I wish I did). Big Daddy and I met 3 months before he went into boot camp. We decided to be crazy and actually try a long distance relationship...we were married 3 years later and I moved in with him 500 miles from home where he was stationed. We stayed there for a while after he was done with his 4 years serving this country. Strange things started to happen to me. After a trip to Florida and 5 days straight baking in the sun to a nice crispy brown color for my brother's wedding...I started to feel sick.
It was coming off the plane from Florida that the first of many major symptoms began. I felt like I was going through turbulance...even a week after we were home! Many tests and doctor visits later...I was told I may have Multiple Sclerosis. May?! Is that kinda like when my friend said she's "kinda" pregnant? Is there really such a thing?! Well, that doctor's hesitation was a blessing in disguise. We decided it was too hard for the two of us to deal with the bizarre symptoms plaguing my health being so far from home. We decided to move back to the old stomping grounds to be close to our family and dear friends for support.
Three months after we arrived home, when the ever important insurance kicked in, I made an appointment with a Neurologist. His exact words were, "Well, my dear, it looks like you have a mild case of MS."...Again back to the "kinda pregnant" reference...is there really such a thing as MILD MS?
Well, I am here to tell you...there is no MILD case of MS. It is what it is...an auto-immune disease that slowly (or quickly in some cases) robs you of the things you normally take for granted. No, kind sir...I do NOT have a MILD case of MS. But then again, this was the doctor who would always tell me that I should get pregnant and keep myself pregnant because MS goes into remission in the majority of MS patients...thanks Dr. Chauvinist, but I think I would like to get pregnant when Big Daddy and I decide to.
Friends and family asked us the "children" question over and over and some eventually gave up, thinking our standard answer of "we want children someday, but not now" was a polite was of saying "no children, no way". We did eventually decide to try for a family. It was 9 years after we got married that we had our daughter, Prnicess Punky. We wouldn't have had it any other way. We had time to enjoy each others company, especially considering our entire time together before marriage was apart. It gave us time to try to live with the MS diagnosis..key word is TRY.
I decided it was time for a new neurologist when left me writhing in pain on the floor, refusing to give me any kind of pain killer when I called the office because he was giving me steroids which would stop the episode...in 3-5 days! I said "How am I supposed to take care of my 11 month old daughter when I can't get off the floor?!" The reply...ready?...wait for it...."Too bad. You will just have to wait for the steroids to kick in". Those words will haunt me forever...TOO BAD. I never went back to that office again. I found a new Neurologist who is fantastic...when I can get someone from the office to call me back, but that's a story for another time.
We decided to try for child number 2 when Princess Punky was 3 years old. I have to say that we are blessed that at least we never had any problems getting pregnant. Little Mayhem came a month early and I was on bed rest for the whole last trimester because of contractions. Both of my children were born with cord issues - Princess's cord was too short and wrapped around her neck and Mayhem's was super long and wrapped around him numerous times and in knots. As my Mom says "Children are gifts...you just like to wrap yours!". Both are healthy and causing trouble wherever they go.
Life is crazy but good. I was laid off from my job when I was 6 months pregnant with Little Mayhem - I was there for 6 years. The MS is getting harder to live with so on the suggestion (OK...insistance) of my neurologist, I am applying for disability.
As for Big Daddy...he is my rock. Lesser men would have left me upon the diagnosis of MS. He has stuck with me. Our saying is that we have been through hell and back so many times we have frequent flier miles! Oh, the hell we have made it through...together.
That's what this blog is about...love, life, family and fun. This isn't about MS...it's about relishing the good times and making through the hard times and what attitude and path you decide to take. Life is too short to take things too seriously! So with that I say, good night...and big balls!
A little background on me and my "situation" (no I don't have sick-pack abs...though I wish I did). Big Daddy and I met 3 months before he went into boot camp. We decided to be crazy and actually try a long distance relationship...we were married 3 years later and I moved in with him 500 miles from home where he was stationed. We stayed there for a while after he was done with his 4 years serving this country. Strange things started to happen to me. After a trip to Florida and 5 days straight baking in the sun to a nice crispy brown color for my brother's wedding...I started to feel sick.
It was coming off the plane from Florida that the first of many major symptoms began. I felt like I was going through turbulance...even a week after we were home! Many tests and doctor visits later...I was told I may have Multiple Sclerosis. May?! Is that kinda like when my friend said she's "kinda" pregnant? Is there really such a thing?! Well, that doctor's hesitation was a blessing in disguise. We decided it was too hard for the two of us to deal with the bizarre symptoms plaguing my health being so far from home. We decided to move back to the old stomping grounds to be close to our family and dear friends for support.
Three months after we arrived home, when the ever important insurance kicked in, I made an appointment with a Neurologist. His exact words were, "Well, my dear, it looks like you have a mild case of MS."...Again back to the "kinda pregnant" reference...is there really such a thing as MILD MS?
Well, I am here to tell you...there is no MILD case of MS. It is what it is...an auto-immune disease that slowly (or quickly in some cases) robs you of the things you normally take for granted. No, kind sir...I do NOT have a MILD case of MS. But then again, this was the doctor who would always tell me that I should get pregnant and keep myself pregnant because MS goes into remission in the majority of MS patients...thanks Dr. Chauvinist, but I think I would like to get pregnant when Big Daddy and I decide to.
Friends and family asked us the "children" question over and over and some eventually gave up, thinking our standard answer of "we want children someday, but not now" was a polite was of saying "no children, no way". We did eventually decide to try for a family. It was 9 years after we got married that we had our daughter, Prnicess Punky. We wouldn't have had it any other way. We had time to enjoy each others company, especially considering our entire time together before marriage was apart. It gave us time to try to live with the MS diagnosis..key word is TRY.
I decided it was time for a new neurologist when left me writhing in pain on the floor, refusing to give me any kind of pain killer when I called the office because he was giving me steroids which would stop the episode...in 3-5 days! I said "How am I supposed to take care of my 11 month old daughter when I can't get off the floor?!" The reply...ready?...wait for it...."Too bad. You will just have to wait for the steroids to kick in". Those words will haunt me forever...TOO BAD. I never went back to that office again. I found a new Neurologist who is fantastic...when I can get someone from the office to call me back, but that's a story for another time.
We decided to try for child number 2 when Princess Punky was 3 years old. I have to say that we are blessed that at least we never had any problems getting pregnant. Little Mayhem came a month early and I was on bed rest for the whole last trimester because of contractions. Both of my children were born with cord issues - Princess's cord was too short and wrapped around her neck and Mayhem's was super long and wrapped around him numerous times and in knots. As my Mom says "Children are gifts...you just like to wrap yours!". Both are healthy and causing trouble wherever they go.
Life is crazy but good. I was laid off from my job when I was 6 months pregnant with Little Mayhem - I was there for 6 years. The MS is getting harder to live with so on the suggestion (OK...insistance) of my neurologist, I am applying for disability.
As for Big Daddy...he is my rock. Lesser men would have left me upon the diagnosis of MS. He has stuck with me. Our saying is that we have been through hell and back so many times we have frequent flier miles! Oh, the hell we have made it through...together.
That's what this blog is about...love, life, family and fun. This isn't about MS...it's about relishing the good times and making through the hard times and what attitude and path you decide to take. Life is too short to take things too seriously! So with that I say, good night...and big balls!
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