This past month I was thrown another curve ball. You'd think I'd learn to duck once in a while. This one came from left field and I didn't see it coming. I didn't even expect it. So it knocked me down and I decided to stay there for a while. By myself. I didn't want my friends around. Obviously I can't escape my husband but I haven't said anything to our children and I don't intend to.
Sometimes, when you get knocked off your feet, it feels good to just lay there for a while looking up at the sky and saying 'Enough. I'm done.' That is exactly what I have been doing. Just hanging around in the dirt, wanting to be left alone while I feel sorry for myself.
A few weeks ago, my doctor told me that my cmp has progressed faster than he thought it would. There is nothing that can be done about it. There is no treatment because myofascia has it's own nervous system and it is not fully understood but what is understood is that when the damage is severe enough, it not only does not heal but when you add fibro to it - with fibro doing it's daily damage - the myofascia damage spreads. It is spreading faster than we thought it would and he said something to me that turned out to be a fast curve from left field. 'You may as well get used to the idea that you are disabled and it will only progress as you get older.' BAM! He said I am disabled.
Other people have said that word to me before and I politely ignored them because I AM NOT DAMNIT! But when my doctor, who has been a great doctor to me, said that word and used it in a way that he was trying to convey to me that it is time to accept the inevitable, well, I like looking up at the sky for now.
At first, I felt sorry for myself. I know there are a lot of things that I could do a year ago but no longer have the strength to do but I am determined to regain that strength if I have to spend two hours a day in the gym. I am only 40 years old for crying out loud!
Then I got angry and started looking for someone to blame. I took a hell of a lot of beatings as a child and that is what damaged my myofascia in the first place. The Fibro was passed down the line from my Grandmother to my Mother to me and I pray often that I did not pass it to my daughters.
It wasn't long before I realized that I can't change the past and this is just something I have to face now, so I decided to face it alone. I didn't want my friends pitying me or telling me it would all be ok because I hate pity and it is not going to be ok. I am not ok with it at all.
I am now at a place of tenuous acceptance. I accept that I have these two autoimmune diseases. I accept that there is no conventional cure. I do not accept that there is nothing I can do about it and I do not accept that I am disabled. There are still plenty of things that I can do and I will do whatever it takes to regain some of what I have lost.
First I need to get my happy back. I need to start doing the things that I love again, so tomorrow I'm going to do just that. Mostly though, I have to get rid of this anger. I am still angry that my Mothers' poor choices in husbands has had life long effects for me. It can't be changed, I know, but it still makes me angry and that makes me hard to be around right now. I don't like how I have been feeling. It's toxic and it has to stop. Enough is enough.
I guess sometimes, your past really does come back to bite you. You just have to learn to let it go and that is the hard part. I think it's time to open the door and let the people I love back in instead of pushing them away. Maybe we are not meant to deal with the really hard stuff all alone.
Tomorrow, I'm closing the door to the anger and self pity and opening it to happiness and forgiveness. Maybe that is how we learn to duck those curve balls. Through the joy of those that God has placed in our lives. The sky is pretty but the ground is too hard to stay down for too long.
Sunday, April 7, 2013
Thursday, April 4, 2013
The Fibro Fairy and I Don't Get Along
I have been asked many times what it is like to have fibromyalgia. I have lots of analogies to help people understand in a nutshell but it's different for everyone. I think you first have to understand the very basics about the disease.
Fibromyalgia is an autoimmune disease that lives in your spinal fluid. Living there gives it access to you entire nerve network as well as your muscles and your immune system. It's also a bully. It never shows up alone. It always brings a friend. For some it's IBS. For others it's migraine or another autoimmune disease. It actually has around 90 different friends it can team up with to kick your butt on a daily basis. With me, it brought cmp - chronic myofascial pain. CMP is a tough opponent all by itself and in my case I think I was diagnosed backward. CMP is not an immune response initially. CMP comes from repeated physical trauma. Fibromyalgia is hereditary, passed from Mother to child. Usually Mother to daughter.
Now, don't go thinking my husband beats me. He doesn't. My childhood was a slow walk through a special part of hell and I was badly injured while working in a nursing home in my early 20's. CMP and Fibro work hand in hand to knock me down daily. They didn't realize how stubborn I am. I keep getting back up.
This past winter the getting up has been harder. Pain with fibro varies from being stabbed all over with an ice pick to intense muscle spasms that stop you in your tracks to feeling like someone poured a layer of gasoline in the space between your muscles and skin, all over your entire body and then lit it on fire.
The longer it goes uncontrolled, the more hyper-sensitive to pain you become. The other day, I very lightly stubbed my pinkie toe. It should not have hurt at all but it dropped me. Pain shot straight up my leg, into my stomach making me nauseous and I just sat on the floor clenching my teeth until it passed. It really made me mad because that just should not have hurt at all! I often think it's stupid to hurt this badly. I bruise easily, which irritates my husband because he knows that each bruise was agony initially and I didn't tell him about it and let him hug me like a child. It's a really irritating disease.
Those of us with chronic pain have become experts in medications and nutrition. It becomes a quest to find ways to drastically minimize the effects so we can live semi-normal lives. I have become a clean eating proponent because I know how much it helps me. I refuse the new medications because they are dangerous. I go old school. But sometimes, like tonight, it doesn't matter what medications you have in your arsenal or how well you are eating or exercising, sometimes your the windshield. Tonight I'm the bug. No sleep for me. The pain is too great. Sleep is a battle with fibro anyway. I can not fall asleep without help. No sleep means no R.E.M. No R.E.M. sleep means no healing from today's assault on my body which means tomorrows assault will have a cumulative effect and the pain will be worse and then I will hurt too much to sleep tomorrow night and the cycle will continue until I finally just pass out from exhaustion. Then the worst part of it will ensue....fibrofog. I HATE fibrofog. That is when you can not remember what you were supposed to be doing, where you put your coffee cup (knowing you just set it down), feeling like you are sleep walking through your day. My family often tells me that I will tell them the same thing two or three times a day during fibrofog. Well, that's because something important popped into my head that you needed to know and I honestly don't remember telling you the last two times. And hey, if I'm saying the same thing over and over and can't remember doing it, at least you know I'm not lying to you! :)
Fibrofog and fibromyalgia mess with your short term memory. You transfer short term memories to long term memories during R.E.M. sleep. Without sleep and then add fibrofog, you lose those short term memories. I can only remember major events from my childhood and I have lost much of my children's childhoods. That is why we take so many pictures so I can trigger those memories and they won't be forever lost to me.
I am extremely fortunate in that I have a husband and children who understand what is happening to me and help without offending me. They don't treat me as an invalid. We handle it with humor and they gently guide me to help me remember things like where did I put my list of things to do today? I am a list maker. I sit down at night while my mind is clear and write down all that I need to do the next day. My big challenge is not losing that list!
Fibrofog comes and goes. It's awful during a flare, which I am currently going through. But while I may not be able to get out of bed because of pain in the morning, I know that it will subside and life will keep moving. Most of all, I know that no matter how bad the flare ups get, I am one blessed woman because I have a family who understands and loves me. My son said 'God Mom. It must suck to be you." Ummm not so much. Some things suck and I would like to punch the fibro fairy in the throat but other than that, I'm good. I consider myself to be one of the lucky ones.
Too many people with this disease are not understood even in their own households. They are left feeling desperately alone. It's an awful thing to hear about. Like I said, I am blessed. I might be in a daily battle and I might get knocked down. But by God's good grace, a loving family and the extra large dose of stubbornness that I was born with, I'll get through this and I will enjoy my life in the process.
There is a whole lot more to fibro and cmp but now you have a solid view of what daily life is like. So if you know someone with fibromyalgia or any autoimmune disease, cut them some slack. They didn't ask for this and they are doing combat every single day just to stay on their feet. They are not their disease. In fact, they are probably the strongest people you will ever meet. I know. A lot of them are my friends and I am awed by them.
If you want to know more, there is plenty on the web and I will be talking about it from time to time as it aggravates the tar out of me. But if you have questions, feel free to ask. I do not mind a bit. In the meantime, I hope you are all sound asleep! :)
Fibromyalgia is an autoimmune disease that lives in your spinal fluid. Living there gives it access to you entire nerve network as well as your muscles and your immune system. It's also a bully. It never shows up alone. It always brings a friend. For some it's IBS. For others it's migraine or another autoimmune disease. It actually has around 90 different friends it can team up with to kick your butt on a daily basis. With me, it brought cmp - chronic myofascial pain. CMP is a tough opponent all by itself and in my case I think I was diagnosed backward. CMP is not an immune response initially. CMP comes from repeated physical trauma. Fibromyalgia is hereditary, passed from Mother to child. Usually Mother to daughter.
Now, don't go thinking my husband beats me. He doesn't. My childhood was a slow walk through a special part of hell and I was badly injured while working in a nursing home in my early 20's. CMP and Fibro work hand in hand to knock me down daily. They didn't realize how stubborn I am. I keep getting back up.
This past winter the getting up has been harder. Pain with fibro varies from being stabbed all over with an ice pick to intense muscle spasms that stop you in your tracks to feeling like someone poured a layer of gasoline in the space between your muscles and skin, all over your entire body and then lit it on fire.
The longer it goes uncontrolled, the more hyper-sensitive to pain you become. The other day, I very lightly stubbed my pinkie toe. It should not have hurt at all but it dropped me. Pain shot straight up my leg, into my stomach making me nauseous and I just sat on the floor clenching my teeth until it passed. It really made me mad because that just should not have hurt at all! I often think it's stupid to hurt this badly. I bruise easily, which irritates my husband because he knows that each bruise was agony initially and I didn't tell him about it and let him hug me like a child. It's a really irritating disease.
Those of us with chronic pain have become experts in medications and nutrition. It becomes a quest to find ways to drastically minimize the effects so we can live semi-normal lives. I have become a clean eating proponent because I know how much it helps me. I refuse the new medications because they are dangerous. I go old school. But sometimes, like tonight, it doesn't matter what medications you have in your arsenal or how well you are eating or exercising, sometimes your the windshield. Tonight I'm the bug. No sleep for me. The pain is too great. Sleep is a battle with fibro anyway. I can not fall asleep without help. No sleep means no R.E.M. No R.E.M. sleep means no healing from today's assault on my body which means tomorrows assault will have a cumulative effect and the pain will be worse and then I will hurt too much to sleep tomorrow night and the cycle will continue until I finally just pass out from exhaustion. Then the worst part of it will ensue....fibrofog. I HATE fibrofog. That is when you can not remember what you were supposed to be doing, where you put your coffee cup (knowing you just set it down), feeling like you are sleep walking through your day. My family often tells me that I will tell them the same thing two or three times a day during fibrofog. Well, that's because something important popped into my head that you needed to know and I honestly don't remember telling you the last two times. And hey, if I'm saying the same thing over and over and can't remember doing it, at least you know I'm not lying to you! :)
Fibrofog and fibromyalgia mess with your short term memory. You transfer short term memories to long term memories during R.E.M. sleep. Without sleep and then add fibrofog, you lose those short term memories. I can only remember major events from my childhood and I have lost much of my children's childhoods. That is why we take so many pictures so I can trigger those memories and they won't be forever lost to me.
I am extremely fortunate in that I have a husband and children who understand what is happening to me and help without offending me. They don't treat me as an invalid. We handle it with humor and they gently guide me to help me remember things like where did I put my list of things to do today? I am a list maker. I sit down at night while my mind is clear and write down all that I need to do the next day. My big challenge is not losing that list!
Fibrofog comes and goes. It's awful during a flare, which I am currently going through. But while I may not be able to get out of bed because of pain in the morning, I know that it will subside and life will keep moving. Most of all, I know that no matter how bad the flare ups get, I am one blessed woman because I have a family who understands and loves me. My son said 'God Mom. It must suck to be you." Ummm not so much. Some things suck and I would like to punch the fibro fairy in the throat but other than that, I'm good. I consider myself to be one of the lucky ones.
Too many people with this disease are not understood even in their own households. They are left feeling desperately alone. It's an awful thing to hear about. Like I said, I am blessed. I might be in a daily battle and I might get knocked down. But by God's good grace, a loving family and the extra large dose of stubbornness that I was born with, I'll get through this and I will enjoy my life in the process.
There is a whole lot more to fibro and cmp but now you have a solid view of what daily life is like. So if you know someone with fibromyalgia or any autoimmune disease, cut them some slack. They didn't ask for this and they are doing combat every single day just to stay on their feet. They are not their disease. In fact, they are probably the strongest people you will ever meet. I know. A lot of them are my friends and I am awed by them.
If you want to know more, there is plenty on the web and I will be talking about it from time to time as it aggravates the tar out of me. But if you have questions, feel free to ask. I do not mind a bit. In the meantime, I hope you are all sound asleep! :)
Wednesday, April 3, 2013
The Moral Compass
I am grateful for my family. I am grateful that I have been blessed to be a Mother and raise the amazing people that my children have become. Yesterday I realized that my job is far from finished. Two of my children may be considered legal adults but they are still children. They are still naïve and have difficulty in trying to see the bigger picture rather than only focusing on what is right in front of them.
Yesterday I had to open my oldest daughter's eyes a bit wider and she didn't like it. At all. But in the end, she understood and I'm hoping she will take that lesson into the future and draw on it when it happens again. It will happen again.
It got me thinking; most of the population sees the world the way my daughter does. 'Sure bad things happen. But it isn't my fault and I can't stop it and as long as it doesn't happen in my little world, I'll be sad for the people for a whole minute and move on. That's just the way the world is.'
WRONG! When did I fail to teach her this stuff? Fail on my part! It irritated the crap out of me!
It started with her telling me how sad and unexpected Shain Gandee's death is. The star of some show called Buckwild - I actually had to Google it and read about the show and the players to understand what she was talking about. Basically, yet another reality show star gone wrong.
My daughter thought it was so very sad that this boy had died and she talked about how it was so unexpected and awful. She did not expect my reaction.
Yes it is sad. Yes it is awful. But unexpected? Nope. Should have seen it coming. And guess what? Everyone who watched that show is partially responsible for what happened to him.
We used to prize wisdom, goodness and wholesomeness. We used to promote family values and having a strong sense of right from wrong. Not anymore.
Now we tell 20 somethings that they are invincible and that if they will get sloppy drunk, use drugs, party like idiots, get D.U.I.'s, cop assault charges, have sex with random people, get pregnant and not know who the daddy is - and allow America to watch you do these things on T.V., we will not only pay you big money for it, you will be rich and famous!
Look at the cast of Jersey Shore. Look at Honey Booboo's family. Read the news reports on these idiots. And yes, if you are watching these shows to get a laugh, you are directly responsible for it when they get so drunk that they don't realize the cab of their truck is filling with carbon monoxide and they die. When they overdose, when they act like they have no common decency whatsoever, it is your fault for watching and sending the message that it is perfectly all right to destroy yourself because as long as we are entertained, you get paid.
If there was no big payday for you to act that way, you most likely would not take it to extremes to entertain the masses. Even if you acted that way on your own, you might have the hope of coming to your senses one day and growing up. Sadly, a lot of these kids never get to grow up because they kill themselves trying to top the last idiotic thing they did so the next episode will get good ratings.
Their poor Mothers. To lose a child that way is unthinkable to me. To know it was encouraged by thousands of people must tear away a part of your soul as a parent.
Once I explained it to my daughter and she got over being mad at me, she actually thought about what I said and told me that I was right. She just never would have thought of things that way.
Let me tell you something: Everything you do affects someone else in some way. Whether it is a T.V. show or smiling at a stranger in the grocery store. Try to affect someone else in a positive manner. Do unto others what you would have them do unto you. If you want someone to root on your childs' destruction, go on and watch those types of shows.
This world is what people want it to be. Nothing is going to change until we change it. Turning the channel will eventually stop the death of another Mother's child. Lesson learned.
Ya'll have a good night and if you are a parent, hold your children tight. We only have them for a little while.
Yesterday I had to open my oldest daughter's eyes a bit wider and she didn't like it. At all. But in the end, she understood and I'm hoping she will take that lesson into the future and draw on it when it happens again. It will happen again.
It got me thinking; most of the population sees the world the way my daughter does. 'Sure bad things happen. But it isn't my fault and I can't stop it and as long as it doesn't happen in my little world, I'll be sad for the people for a whole minute and move on. That's just the way the world is.'
WRONG! When did I fail to teach her this stuff? Fail on my part! It irritated the crap out of me!
It started with her telling me how sad and unexpected Shain Gandee's death is. The star of some show called Buckwild - I actually had to Google it and read about the show and the players to understand what she was talking about. Basically, yet another reality show star gone wrong.
My daughter thought it was so very sad that this boy had died and she talked about how it was so unexpected and awful. She did not expect my reaction.
Yes it is sad. Yes it is awful. But unexpected? Nope. Should have seen it coming. And guess what? Everyone who watched that show is partially responsible for what happened to him.
We used to prize wisdom, goodness and wholesomeness. We used to promote family values and having a strong sense of right from wrong. Not anymore.
Now we tell 20 somethings that they are invincible and that if they will get sloppy drunk, use drugs, party like idiots, get D.U.I.'s, cop assault charges, have sex with random people, get pregnant and not know who the daddy is - and allow America to watch you do these things on T.V., we will not only pay you big money for it, you will be rich and famous!
Look at the cast of Jersey Shore. Look at Honey Booboo's family. Read the news reports on these idiots. And yes, if you are watching these shows to get a laugh, you are directly responsible for it when they get so drunk that they don't realize the cab of their truck is filling with carbon monoxide and they die. When they overdose, when they act like they have no common decency whatsoever, it is your fault for watching and sending the message that it is perfectly all right to destroy yourself because as long as we are entertained, you get paid.
If there was no big payday for you to act that way, you most likely would not take it to extremes to entertain the masses. Even if you acted that way on your own, you might have the hope of coming to your senses one day and growing up. Sadly, a lot of these kids never get to grow up because they kill themselves trying to top the last idiotic thing they did so the next episode will get good ratings.
Their poor Mothers. To lose a child that way is unthinkable to me. To know it was encouraged by thousands of people must tear away a part of your soul as a parent.
Once I explained it to my daughter and she got over being mad at me, she actually thought about what I said and told me that I was right. She just never would have thought of things that way.
Let me tell you something: Everything you do affects someone else in some way. Whether it is a T.V. show or smiling at a stranger in the grocery store. Try to affect someone else in a positive manner. Do unto others what you would have them do unto you. If you want someone to root on your childs' destruction, go on and watch those types of shows.
This world is what people want it to be. Nothing is going to change until we change it. Turning the channel will eventually stop the death of another Mother's child. Lesson learned.
Ya'll have a good night and if you are a parent, hold your children tight. We only have them for a little while.
Monday, April 1, 2013
Was That Funny?
So....it's April Fool's Day and I thought I might be able to fool my children. I knew my husband wasn't going to fall for anything but my kids are gullible enough. :)
I told them I had gone to the doctor today because I had been feeling strange and guess what??? We're pregnant!
My youngest daughter got crazy happy! She was laughing and asking when the baby would be here and how did this happen - which just got me laughing because I'm sarcastic and I thought of about fifty ways to answer that little question!
My oldest daughter got doe eyed and started crying. She was just so happy for me because she knows how badly I have wanted another baby for the past 14 years. The big alligator tears rolled down her face and she was honestly over joyed for me!
My son, however, went into protection mode; 'Mom! This is a bad idea. You are 40. You have had a heart attack. You have fibromyalgia and cmp and you hurt all the time and you've had a lot of miscarriages. How are you gonna get through this?'
WOW! ummm...April fools?
My youngest daughter was disappointed that she wasn't getting a younger sibling. My oldest daughter got mad and threw the newspaper on the ground and my son says, 'Oh! Thank God!'
Ok, so now we know...pregnancy is not a joke with my kids! Think I'll skip the April fools next year! Geeze!
I am hoping this flare goes away soon. I still have my daughters' graduation to deal with. I haven't even found the invitations that I want and she graduates in a month! I'm not procrastinating. I just can not find the design I was looking for. I have to get on the ball and plan her party, get the invites out and get ready for her to head off to college.
I am not looking forward to it. I have two children leaving home this summer. I will have one child in the house and that time will fly by too. In four years, there will be no children in the house and that makes me sad. I am happy to see them start their lives but I have been a full time Mother for so long, it will be a huge change for me. We shall see how well I handle it.
I hope everyone has had a nice April 1st. It was a beautiful day here. I think spring has finally sprung. God bless you all and a special blessing to a special little girl who turned 18 today. If you are reading this sweetheart, Happy Birthday. I love you and I am proud of the young woman you are becoming. Now, go snuggle with your Mama. 18 is grand for you but for us Mama's, 18 is a hard pill to swallow. Let her know you love her. She has loved you with her whole being for your whole life and that is never going to change. You will always be her baby no matter how old you are! Happy Birthday Darlin!
I told them I had gone to the doctor today because I had been feeling strange and guess what??? We're pregnant!
My youngest daughter got crazy happy! She was laughing and asking when the baby would be here and how did this happen - which just got me laughing because I'm sarcastic and I thought of about fifty ways to answer that little question!
My oldest daughter got doe eyed and started crying. She was just so happy for me because she knows how badly I have wanted another baby for the past 14 years. The big alligator tears rolled down her face and she was honestly over joyed for me!
My son, however, went into protection mode; 'Mom! This is a bad idea. You are 40. You have had a heart attack. You have fibromyalgia and cmp and you hurt all the time and you've had a lot of miscarriages. How are you gonna get through this?'
WOW! ummm...April fools?
My youngest daughter was disappointed that she wasn't getting a younger sibling. My oldest daughter got mad and threw the newspaper on the ground and my son says, 'Oh! Thank God!'
Ok, so now we know...pregnancy is not a joke with my kids! Think I'll skip the April fools next year! Geeze!
I am hoping this flare goes away soon. I still have my daughters' graduation to deal with. I haven't even found the invitations that I want and she graduates in a month! I'm not procrastinating. I just can not find the design I was looking for. I have to get on the ball and plan her party, get the invites out and get ready for her to head off to college.
I am not looking forward to it. I have two children leaving home this summer. I will have one child in the house and that time will fly by too. In four years, there will be no children in the house and that makes me sad. I am happy to see them start their lives but I have been a full time Mother for so long, it will be a huge change for me. We shall see how well I handle it.
I hope everyone has had a nice April 1st. It was a beautiful day here. I think spring has finally sprung. God bless you all and a special blessing to a special little girl who turned 18 today. If you are reading this sweetheart, Happy Birthday. I love you and I am proud of the young woman you are becoming. Now, go snuggle with your Mama. 18 is grand for you but for us Mama's, 18 is a hard pill to swallow. Let her know you love her. She has loved you with her whole being for your whole life and that is never going to change. You will always be her baby no matter how old you are! Happy Birthday Darlin!
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