Last night was a night filled with emotion. It was the MS Rock Cabaret. We were in a room surrounded by friends, family and strangers to raise money for a cause that has become so important to me.
I was overwhelmed with the good emotions. I saw first hand what it means to be loved and be of significance to others. My friends and family helped out so much last night to make the night a huge success.
I still remember less than 8 weeks ago when I was diagnosed with MS and even more recently decided to participate in the 2011 MS Walk I set my goal at $1,000.00.
I am beyond excited that we have shattered my initial goal and even surpassed the $10,000.00 goal that I set just to appease my husband. Never did I think we would hit that mark. Am I happy to be proven wrong.
Tomorrow morning is likely going to be another day filled with emotion, but I know I will not be alone.
Having been diagnosed with MS has been hard, but knowing I am not alone and being shown there is hope makes it a little easier.
Saturday, April 30, 2011
Sunday, April 24, 2011
Funk
Today was Easter. It was supposed to be a day filled with family, fun and happiness. Instead because it was the day after my needle I was sick and nauseous. I struggled to feel good and try to make the day special. I planned a special meal for the family. The Easter bunny brought new bikes for the kids to ride.
I found out today that when my needle makes me sick my body doesn't deal with it that well. My hand didn't work well today. I was very grouchy about the fact that the medication that is supposed to help me live with MS is also making my life hard.
I managed to cut my hand, burn my finger, break a canister and gouge the hardwood floor all in one morning.
I need to dig deep and find some positives in my life today. I am feeling nothing but an overwhelming sense of hopelessness. I've spent time today trying to imagine what my life is going to be like in the next 5 or 10 years. I do not like some of the thoughts I've had. My life could be a lot like it is right now, but it could also be a lot different. A lot worse.
I'm very thankful that tomorrow is my Good day. I so need a good day!!
I found out today that when my needle makes me sick my body doesn't deal with it that well. My hand didn't work well today. I was very grouchy about the fact that the medication that is supposed to help me live with MS is also making my life hard.
I managed to cut my hand, burn my finger, break a canister and gouge the hardwood floor all in one morning.
I need to dig deep and find some positives in my life today. I am feeling nothing but an overwhelming sense of hopelessness. I've spent time today trying to imagine what my life is going to be like in the next 5 or 10 years. I do not like some of the thoughts I've had. My life could be a lot like it is right now, but it could also be a lot different. A lot worse.
I'm very thankful that tomorrow is my Good day. I so need a good day!!
Friday, April 22, 2011
MRI results
I've spent hours reading through my MRI results. I have googled all the 'buzz' words and scared the crap out of myself.
I'm ready to share my results so here it is, this is what my MS looks like through an MRI machine.
MRI Consultation
Head findings: sagittal midline anatomy is normal
There are multiple periventricular, corpus callosal and sub/juxtacortical T2/FLAIR hyper intensities. The largest is adjacent to the anterior horn of the right lateral ventricle measuring 7mm in maximal dimension. There are approximately 30 supratentorial T2 signal abnormalities. A small punctate hyperintense focus is also seen within the left middle cerebral peduncle. Increased T2 signal is seen along the callosal septal interface, slightly more prominent on the left. There are also small signal abnormalities within the body of the corpus callosum itself, just to the left of the midline.
No region of restricted diffusion was evident.
Cervical spine findings:
There are two areas of definite cord signal abnormality. The first is seen along the lower aspect of the C2 vertebral body level, measuring up to 13mm in craniocaudad dimension; this is eccentric, posterior and to the right of midline within the spinal cord. A second smaller focus is seen at the mid-C3 level, measuring just under 1cm in craniocaudad dimension. This is posterior and left lateral in location. No other convincing cord signal abnormalities.
There is a slight straightening at the normal cervical lordosis. There are small posterior disc-osteophyte complexes at C5-6 and C6-7. These minimally indent the anterior thecal sac without causing any spinal or neural foramina impingement.
There is an additional possible cord signal abnormality seen to the right of midline within the white matter at C6 level, although this is quite a bit fainter in signal intensity the the two previous described lesions.
I'm ready to share my results so here it is, this is what my MS looks like through an MRI machine.
MRI Consultation
Head findings: sagittal midline anatomy is normal
There are multiple periventricular, corpus callosal and sub/juxtacortical T2/FLAIR hyper intensities. The largest is adjacent to the anterior horn of the right lateral ventricle measuring 7mm in maximal dimension. There are approximately 30 supratentorial T2 signal abnormalities. A small punctate hyperintense focus is also seen within the left middle cerebral peduncle. Increased T2 signal is seen along the callosal septal interface, slightly more prominent on the left. There are also small signal abnormalities within the body of the corpus callosum itself, just to the left of the midline.
No region of restricted diffusion was evident.
Cervical spine findings:
There are two areas of definite cord signal abnormality. The first is seen along the lower aspect of the C2 vertebral body level, measuring up to 13mm in craniocaudad dimension; this is eccentric, posterior and to the right of midline within the spinal cord. A second smaller focus is seen at the mid-C3 level, measuring just under 1cm in craniocaudad dimension. This is posterior and left lateral in location. No other convincing cord signal abnormalities.
There is a slight straightening at the normal cervical lordosis. There are small posterior disc-osteophyte complexes at C5-6 and C6-7. These minimally indent the anterior thecal sac without causing any spinal or neural foramina impingement.
There is an additional possible cord signal abnormality seen to the right of midline within the white matter at C6 level, although this is quite a bit fainter in signal intensity the the two previous described lesions.
CCSVI
Last night Bob and I attended a seminar on CCSVI. That is the liberation treatment for MS that you hear so much about. Chronic cerebrospinal venous insufficiency.
Here is a little CCSVI 101 for those who are interested:
Italian Dr. Paolo Zamboni has put forward the idea that many types of MS are actually caused by a blockage of the pathways that remove excess iron from the brain - and by simply clearing out a couple of major veins to reopen the blood flow, the root cause of the disease can be eliminated.Dr. Zamboni's revelations came as part of a very personal mission - to cure his wife as she began a downward spiral after diagnosis. Reading everything he could on the subject, Dr. Zamboni found a number of century-old sources citing excess iron as a possible cause of MS. It happened to dovetail with some research he had been doing previously on how a buildup of iron can damage blood vessels in the legs - could it be that a buildup of iron was somehow damaging blood vessels in the brain?
He immediately took to the ultrasound machine to see if the idea had any merit - and made a staggering discovery. More than 90% of people with MS have some sort of malformation or blockage in the veins that drain blood from the brain. Including, as it turned out, his wife.
He formed a hypothesis on how this could lead to MS: iron builds up in the brain, blocking and damaging these crucial blood vessels. As the vessels rupture, they allow both the iron itself, and immune cells from the bloodstream, to cross the blood-brain barrier into the cerebro-spinal fluid. Once the immune cells have direct access to the immune system, they begin to attack the myelin sheathing of the cerebral nerves - Multiple Sclerosis develops.
I thought the seminar, put on by a medical facility from California would be a sales pitch. It wasnt at all. He was very thorough in informing about the steps they take to complete the CCSVI as well as the history abnd background of the whole procedure.
The doctor also answered questions from people in the audience and he said time and time again that this is a personal choice each person has to make. He said he is not offering a cure but the possibility of improving the quality of your life.
I was lucky, another recently diagnosed MS patient asked what I wanted to know. Is there a benefit to having this done early in your diagnosis before your symptoms get worse. He could not answer that as there is too early to have studies on the procedure. He did talk about iron deposits in the brain caused from the veins that are narrowed. He said many in the medical field feel that low the iron could be the cause of the lesions as the body is trying to fight the iron. This was a lot to digest and absorb. I have researching to do yet.
I want to explore this avenue further though, as many of the patients that have lived with MS for years said they wish they could have had the choice years ago that I am faced with right now. What if this procedure is something that could help me fight this disease? The risk is very minimal for the actual procedure, but the cost is enormous. I know many people will say you cannot put a price on your health. I agree that is true, but making a choice to spend that amount of money doesn't just cost me, it costs my whole family. How can I make that sacrifice that would ultimately be felt by all of them, and it turns out all for nothing? But then I imagine just for a moment that this would change the course of my life. What if this really does make a difference?
I m going to email Dr.Hubbard, who has a clinic in San Diego. He is a neurologist that has a son that was diagnosed with MS in 2009. He has dedicated his life's work to finding a cure for MS and extensive study of CCSVI. I know he is passionate about it because of his son. Next week I hope to have further answers to these really hard questions.
The hardest part of this seminar was seeing so many people diagnosed with MS in one room. Some were visibly disabled while others you would never guess suffered from the disease. There people that had had the procedure that spoke of relief from the symptoms, that talked about taking charge of your health care. I got to listen to a long list of scary symptoms that I have been fortunate not to have to deal with yet. Its the yet part that kept me awake last night. I am a fortunate person in that my symptoms are not a long list nor do they greatly effect my quality of life, but what if that isnt the case in 5 years?
A lot is weighing heavily on my mind.
Here is a little CCSVI 101 for those who are interested:
Italian Dr. Paolo Zamboni has put forward the idea that many types of MS are actually caused by a blockage of the pathways that remove excess iron from the brain - and by simply clearing out a couple of major veins to reopen the blood flow, the root cause of the disease can be eliminated.Dr. Zamboni's revelations came as part of a very personal mission - to cure his wife as she began a downward spiral after diagnosis. Reading everything he could on the subject, Dr. Zamboni found a number of century-old sources citing excess iron as a possible cause of MS. It happened to dovetail with some research he had been doing previously on how a buildup of iron can damage blood vessels in the legs - could it be that a buildup of iron was somehow damaging blood vessels in the brain?
He immediately took to the ultrasound machine to see if the idea had any merit - and made a staggering discovery. More than 90% of people with MS have some sort of malformation or blockage in the veins that drain blood from the brain. Including, as it turned out, his wife.
He formed a hypothesis on how this could lead to MS: iron builds up in the brain, blocking and damaging these crucial blood vessels. As the vessels rupture, they allow both the iron itself, and immune cells from the bloodstream, to cross the blood-brain barrier into the cerebro-spinal fluid. Once the immune cells have direct access to the immune system, they begin to attack the myelin sheathing of the cerebral nerves - Multiple Sclerosis develops.
I thought the seminar, put on by a medical facility from California would be a sales pitch. It wasnt at all. He was very thorough in informing about the steps they take to complete the CCSVI as well as the history abnd background of the whole procedure.
The doctor also answered questions from people in the audience and he said time and time again that this is a personal choice each person has to make. He said he is not offering a cure but the possibility of improving the quality of your life.
I was lucky, another recently diagnosed MS patient asked what I wanted to know. Is there a benefit to having this done early in your diagnosis before your symptoms get worse. He could not answer that as there is too early to have studies on the procedure. He did talk about iron deposits in the brain caused from the veins that are narrowed. He said many in the medical field feel that low the iron could be the cause of the lesions as the body is trying to fight the iron. This was a lot to digest and absorb. I have researching to do yet.
I want to explore this avenue further though, as many of the patients that have lived with MS for years said they wish they could have had the choice years ago that I am faced with right now. What if this procedure is something that could help me fight this disease? The risk is very minimal for the actual procedure, but the cost is enormous. I know many people will say you cannot put a price on your health. I agree that is true, but making a choice to spend that amount of money doesn't just cost me, it costs my whole family. How can I make that sacrifice that would ultimately be felt by all of them, and it turns out all for nothing? But then I imagine just for a moment that this would change the course of my life. What if this really does make a difference?
I m going to email Dr.Hubbard, who has a clinic in San Diego. He is a neurologist that has a son that was diagnosed with MS in 2009. He has dedicated his life's work to finding a cure for MS and extensive study of CCSVI. I know he is passionate about it because of his son. Next week I hope to have further answers to these really hard questions.
The hardest part of this seminar was seeing so many people diagnosed with MS in one room. Some were visibly disabled while others you would never guess suffered from the disease. There people that had had the procedure that spoke of relief from the symptoms, that talked about taking charge of your health care. I got to listen to a long list of scary symptoms that I have been fortunate not to have to deal with yet. Its the yet part that kept me awake last night. I am a fortunate person in that my symptoms are not a long list nor do they greatly effect my quality of life, but what if that isnt the case in 5 years?
A lot is weighing heavily on my mind.
Thursday, April 21, 2011
Good thoughts
I was at the pharmacy picking up my medication today and there was an elderly man in front of me at the counter. He reminded me of my Dad....from the way he looked even to the way he spoke.
A few months ago I may have gotten upset and saddened by this similarity, but today I realize it is a good thought.
I miss my Dad and wish he was here to help me through this. My Dad was always one of my biggest supporters. I can still remember when I became a single Mom with two young children. My Mom's first comment when I broke the news to her was that I have to fix this because I can't do this on my own. My Dad, always the silent man of few words did not judge or make me feel bad. But in his own 'Dad' way he taught me things. And without realizing it he not only taught me how to maintain my home or change a flat tire, he taught me independence, self confidence and courage.
Those skills have come in handy the past few months and I want to say Thank you Dad! And thank you to the man that reminded me of my Dad and all those good thoughts today.
A few months ago I may have gotten upset and saddened by this similarity, but today I realize it is a good thought.
I miss my Dad and wish he was here to help me through this. My Dad was always one of my biggest supporters. I can still remember when I became a single Mom with two young children. My Mom's first comment when I broke the news to her was that I have to fix this because I can't do this on my own. My Dad, always the silent man of few words did not judge or make me feel bad. But in his own 'Dad' way he taught me things. And without realizing it he not only taught me how to maintain my home or change a flat tire, he taught me independence, self confidence and courage.
Those skills have come in handy the past few months and I want to say Thank you Dad! And thank you to the man that reminded me of my Dad and all those good thoughts today.
Wednesday, April 20, 2011
100%
Last night was my first 100% dose of betaseron. The injection went better than I had expected. The side effects were bad, but not as bad as last weeks increase to 75%.
I feel a sense of accomplishment reaching the full dose of my medication. This is the amount that my body needs to hopefully slow the progress of my disease.
It is a positive because it means my body is getting used to the betaseron. The two can coexist and I can still have a somewhat normal life.
Today is filled with all sorts of reasons to celebrate. Not only did I reach the 100% for my injections, I braided my daughters hair last night. It wasn't quick or easy and didn't look as good as it used to, but I did it. My fingers were able to manipulate those three sections of hair into a braid. That means my body is that much closer to my 100% recovery.
I am hoping for a full recovery with no lingering effects from my attack. If that doesn't happen then I will work with whatever my body can give me and make the best of it.
I feel a sense of accomplishment reaching the full dose of my medication. This is the amount that my body needs to hopefully slow the progress of my disease.
It is a positive because it means my body is getting used to the betaseron. The two can coexist and I can still have a somewhat normal life.
Today is filled with all sorts of reasons to celebrate. Not only did I reach the 100% for my injections, I braided my daughters hair last night. It wasn't quick or easy and didn't look as good as it used to, but I did it. My fingers were able to manipulate those three sections of hair into a braid. That means my body is that much closer to my 100% recovery.
I am hoping for a full recovery with no lingering effects from my attack. If that doesn't happen then I will work with whatever my body can give me and make the best of it.
Saturday, April 16, 2011
Prayers
If I could do something to get my wayward son back on the right track, I would do it in a heartbeat. If only he could see for himself these mistakes he is making.
My 17 year old has been living with his Dad now for a year. In that year he has managed to manipulate his father and refused to live by the rules of their home. Simply put Austin has not changed. It saddens me to see how bad things are and how hard they are on my exhusband. What saddens me the most is that everyone can clearly see, everyone except Austin.
Nuckter informed me yesterday that he is dropping classes at school. He knows full well that this will make it impossible for him to graduate. He refused to try different medication that was suggested for his ADD, even though all of those around him can see his meds are not working. He is dishonest and disrespectful.
Whenever someone asks me how Austin is doing I usually say "good" or "ok". I dont want to have to tell others that I am scared to death that he is going to continue to make the wrong choices in his life and it is going to negatively affect his future. I dont want to admit that he is self centered and rarely thinks of others in his life. I dont want people to know just how upset and troubled I am thinking about him.
After talking to Nuckter yesterday I realize he is close to the end of his rope. He is where we were last year before Austin moved out of our home.
What will happen if Nuckter gets to the end of that rope ? Austin cannot move back here. Given everything that is going on in my life and how stress can affect MS I cannot risk living through what we did.
Where does that leave Austin? And the more important question is WHY cant Austin learn from his life lessons? What is it going to take for him to 'get it'?
My 17 year old has been living with his Dad now for a year. In that year he has managed to manipulate his father and refused to live by the rules of their home. Simply put Austin has not changed. It saddens me to see how bad things are and how hard they are on my exhusband. What saddens me the most is that everyone can clearly see, everyone except Austin.
Nuckter informed me yesterday that he is dropping classes at school. He knows full well that this will make it impossible for him to graduate. He refused to try different medication that was suggested for his ADD, even though all of those around him can see his meds are not working. He is dishonest and disrespectful.
Whenever someone asks me how Austin is doing I usually say "good" or "ok". I dont want to have to tell others that I am scared to death that he is going to continue to make the wrong choices in his life and it is going to negatively affect his future. I dont want to admit that he is self centered and rarely thinks of others in his life. I dont want people to know just how upset and troubled I am thinking about him.
After talking to Nuckter yesterday I realize he is close to the end of his rope. He is where we were last year before Austin moved out of our home.
What will happen if Nuckter gets to the end of that rope ? Austin cannot move back here. Given everything that is going on in my life and how stress can affect MS I cannot risk living through what we did.
Where does that leave Austin? And the more important question is WHY cant Austin learn from his life lessons? What is it going to take for him to 'get it'?
Friday, April 15, 2011
TGIF
It's surreal how normal and ordinary my life seems sometimes.
I'm wondering if my life is going to be forever changed as what I used to consider normal is gone, never to return?
An example of this change is my needles. If I was told a few months ago that I would be injecting myself with medication every other day for the rest of my life hopefully, I would have laughed in your face. Years ago I actually fainted while getting blood taken. Now, just two nights ago it took me maybe 5 minutes tops to mix and prep and inject my needle. I'm willing to accept this as normal as it will help me fight this disease and slow my progression.
Another change that has become my normal is my adaptation to becoming left handed. I don't even think twice about holding a utensil or cup with my left hand. I remember early on in my attack where I couldn't spoon liquid without a huge mess. I'm still not as gifted or talented as my girls who are both left handed, but it is easier and feels a little more normal.
There are things I can accept as the normal part of my life now. But there are things that I am not willing to accept yet. I will not accept that I cannot write as being normal. I will not resign myself to the fear that sometimes takes a hold of me when I think about the fact that I have an incurable disease.
I will not accept that because there is no cure for MS there is no hope. I have hope. Hope that one day there will be a cure, that my family will no longer be affected by this disease.
I'm wondering if my life is going to be forever changed as what I used to consider normal is gone, never to return?
An example of this change is my needles. If I was told a few months ago that I would be injecting myself with medication every other day for the rest of my life hopefully, I would have laughed in your face. Years ago I actually fainted while getting blood taken. Now, just two nights ago it took me maybe 5 minutes tops to mix and prep and inject my needle. I'm willing to accept this as normal as it will help me fight this disease and slow my progression.
Another change that has become my normal is my adaptation to becoming left handed. I don't even think twice about holding a utensil or cup with my left hand. I remember early on in my attack where I couldn't spoon liquid without a huge mess. I'm still not as gifted or talented as my girls who are both left handed, but it is easier and feels a little more normal.
There are things I can accept as the normal part of my life now. But there are things that I am not willing to accept yet. I will not accept that I cannot write as being normal. I will not resign myself to the fear that sometimes takes a hold of me when I think about the fact that I have an incurable disease.
I will not accept that because there is no cure for MS there is no hope. I have hope. Hope that one day there will be a cure, that my family will no longer be affected by this disease.
Wednesday, April 13, 2011
Needle Night
Tonight is another needle night. Two nights ago I had my worst night, that also stretched into the next day from my injection. It was my first dose of 75% and obviously my body did not do well with the dose. I was in bed with sweats, aches, nausea, headache and chills until after lunch.. To make things even more fun Im also suffering from injection site reactions so my legs and stomach are covered with red swollen bruises.
I am crossing my fingers that tomorrow isnt a total write off and my body is starting to get used to this medication. They are going to be dealing with each other for hopefully many many years, so its time they played nice dont you think?
I am crossing my fingers that tomorrow isnt a total write off and my body is starting to get used to this medication. They are going to be dealing with each other for hopefully many many years, so its time they played nice dont you think?
Sunday, April 10, 2011
Pity
I had another first experience in my life last week that left me confused and speechless. And if you know me you know there are very few times where I am speechless.
An old friend, a coworker, saw me for the first time since I shared the news of my diagnosis. She was the first person who got visibly upset and cried for me. She hugged me and then after offering me encouraging words she left as she was too emotional and upset.
I was left not knowing how to handle what just happened.
I have had several days to ponder what went on. I was uncomfortable as I knew I was the reason for her sorrow, but I pray it was not pity she felt for me. I want her to know I am strong and that while I am thankful for her loving thoughts and prayers, I want her to celebrate all the good things that are still in my life. I welcome so many feelings from others in my life; love, support, compassion, concern, hope, faith. But please don't feel pity for me.
An old friend, a coworker, saw me for the first time since I shared the news of my diagnosis. She was the first person who got visibly upset and cried for me. She hugged me and then after offering me encouraging words she left as she was too emotional and upset.
I was left not knowing how to handle what just happened.
I have had several days to ponder what went on. I was uncomfortable as I knew I was the reason for her sorrow, but I pray it was not pity she felt for me. I want her to know I am strong and that while I am thankful for her loving thoughts and prayers, I want her to celebrate all the good things that are still in my life. I welcome so many feelings from others in my life; love, support, compassion, concern, hope, faith. But please don't feel pity for me.
Friday, April 8, 2011
One Month
I realized last night that it has been a month since I was diagnosed withMS. It doesn't feel like it's been that long. I compare it to the two months I lived through prior to the diagnosis. Those two months felt like a lifetime. I shed so many tears, had many sleepless nights and felt complete hopelessness.
This month, my first month knowing I have MS has been easier. Knowing is so much easier than the dark thoughts of the unknown for those two months.
It would have been easier if it was something curable and preventable, but it is what it is and I have to accept the cards I have been dealt. I still find that in this month, because I have my diagnosis, a wonderful family doctor and great support system I can handle it. I no longer feel complete hopelessness. I still on occasion shed a few tears, but its no longer overwhelming sadness. I have sleepless nights, but not because I am terrified and thinking about the dark thoughts. The sleeplessness comes from the medication my body is getting used to. The medication that is going to length the time I have in my life that is free from disability.
Unfortunately along with the flu symptoms that keep me up every other night, the medication is also making the symptoms of my attack worsen. Luckily I have talked to the wonderful RN at the MS Clinic who prepared me for this. My right hand has a little less feeling than last week, and the numbness is my left hand is increasing.
I was prepared and expected this, but its still hard to have it happen.
Luckily I have so much positive to focus on. Our Steak Night is tomorrow night and the support is overwhelming. We have sold over 100 tickets and have been given so many donations for wonderful raffle prizes.
I am so fortunate to be contributing towards to the hope of one day ending MS. This has been a good month, I have helped raise almost $2,000.00. I am hopeful the next month will bring even more good things.
This month, my first month knowing I have MS has been easier. Knowing is so much easier than the dark thoughts of the unknown for those two months.
It would have been easier if it was something curable and preventable, but it is what it is and I have to accept the cards I have been dealt. I still find that in this month, because I have my diagnosis, a wonderful family doctor and great support system I can handle it. I no longer feel complete hopelessness. I still on occasion shed a few tears, but its no longer overwhelming sadness. I have sleepless nights, but not because I am terrified and thinking about the dark thoughts. The sleeplessness comes from the medication my body is getting used to. The medication that is going to length the time I have in my life that is free from disability.
Unfortunately along with the flu symptoms that keep me up every other night, the medication is also making the symptoms of my attack worsen. Luckily I have talked to the wonderful RN at the MS Clinic who prepared me for this. My right hand has a little less feeling than last week, and the numbness is my left hand is increasing.
I was prepared and expected this, but its still hard to have it happen.
Luckily I have so much positive to focus on. Our Steak Night is tomorrow night and the support is overwhelming. We have sold over 100 tickets and have been given so many donations for wonderful raffle prizes.
I am so fortunate to be contributing towards to the hope of one day ending MS. This has been a good month, I have helped raise almost $2,000.00. I am hopeful the next month will bring even more good things.
Wednesday, April 6, 2011
Before it gets better
It has to get worse. I've always wondered why that is? Why is it sometimes things have to not only get bad, but REALLY bad before they get better?
I'm in the midst of the really bad right now, with the parathesia on the right side getting a little worse, and the horrible flu like symptoms that come in the middle of injection nights. I know the reason why it's bad, and I understand that my body has to get used to the injection of Betaseron. The part that gets me through the 5 hours of sleeplessness when I am shivering and aching in bed is knowing that all of this is for a greater good.
The ideal outcome after all the symptoms of the injections have subsided and my body has regained the feeling I have lost would be for me not to suffer another attack. Ever.
Like I said, that is the ideal, best case scenario. Is it likely? Who knows, but I am going to live like it is. When there is hope all things seem possible.
Sometimes I have dark moments in my day where I wonder if perhaps this is as good as the numbness is going to get. What if this is all my body can do to repair the damage? I try not to get ahead of myself. I know I will cross that bridge if and when the time comes, but for now the bridge Im crossing is the worse before better, which means right on the other side of this bridge is better. I just have to get across the bridge, and hopefully it isnt a hard and long trip.
I'm in the midst of the really bad right now, with the parathesia on the right side getting a little worse, and the horrible flu like symptoms that come in the middle of injection nights. I know the reason why it's bad, and I understand that my body has to get used to the injection of Betaseron. The part that gets me through the 5 hours of sleeplessness when I am shivering and aching in bed is knowing that all of this is for a greater good.
The ideal outcome after all the symptoms of the injections have subsided and my body has regained the feeling I have lost would be for me not to suffer another attack. Ever.
Like I said, that is the ideal, best case scenario. Is it likely? Who knows, but I am going to live like it is. When there is hope all things seem possible.
Sometimes I have dark moments in my day where I wonder if perhaps this is as good as the numbness is going to get. What if this is all my body can do to repair the damage? I try not to get ahead of myself. I know I will cross that bridge if and when the time comes, but for now the bridge Im crossing is the worse before better, which means right on the other side of this bridge is better. I just have to get across the bridge, and hopefully it isnt a hard and long trip.
Monday, April 4, 2011
Woo Hoo!!
In the middle of all these hard and trying times I was given wonderful news. One of my dearest and closest friends got some great news today.
This friend has been one of my rocks through my illness and diagnosis. She was the one that shared the wise words, "You are the same person walking out of the doctors office as you were walking in". With those words she helped pick me up after I got the diagnosis of MS. And I believed her because she is a cancer SURVIVOR! She is one of the strongest and bravest women I know. She has fought and conquered one of life's monsters.
And today the news has confirmed that she is still winning that battle. It has also given me a much needed boost in my faith.
This friend has been one of my rocks through my illness and diagnosis. She was the one that shared the wise words, "You are the same person walking out of the doctors office as you were walking in". With those words she helped pick me up after I got the diagnosis of MS. And I believed her because she is a cancer SURVIVOR! She is one of the strongest and bravest women I know. She has fought and conquered one of life's monsters.
And today the news has confirmed that she is still winning that battle. It has also given me a much needed boost in my faith.
Small minded
I have recently figured out that not everyone shares my thoughts on good in this world. Luckily these small minded people are the minority. In my efforts to raise money to help find a cure for MS it has been brought to my attention the different reasons why some people do not give to charity's.
I am not ignorant and I know financially there are those who just cannot. I also know that others give to causes in different ways, volunteering on a board, donating of their time, or even doing their part by giving blood.
All of those actions warm my heart and it reaffirms there is still so much good in this world.
There are a few people who I have come across in my life that don't have the hope and positiveness and share the thought that by working together we can make a difference. They feel that unless they can give a substantial amount of money, there is no point in the charitable donation. Luckily there are hundreds of hopeful people that do not share that opinion and they give and help out, even in the smallest of ways. It is no different if one man donates $5000.00 or 50 men donate $100.00.
I am holding on to the hope that there are more people that feel every little bit helps. Besides MS there are so many other good causes, we cannot lose hope that each one of us holds the power to make a difference.
I am not ignorant and I know financially there are those who just cannot. I also know that others give to causes in different ways, volunteering on a board, donating of their time, or even doing their part by giving blood.
All of those actions warm my heart and it reaffirms there is still so much good in this world.
There are a few people who I have come across in my life that don't have the hope and positiveness and share the thought that by working together we can make a difference. They feel that unless they can give a substantial amount of money, there is no point in the charitable donation. Luckily there are hundreds of hopeful people that do not share that opinion and they give and help out, even in the smallest of ways. It is no different if one man donates $5000.00 or 50 men donate $100.00.
I am holding on to the hope that there are more people that feel every little bit helps. Besides MS there are so many other good causes, we cannot lose hope that each one of us holds the power to make a difference.
Saturday, April 2, 2011
LOL
Laughter truly is the best medicine. We went over to good friends of ours last night for a long overdue visit. A lot has changed from years ago when we used to hang out. We now both have kids, we have added responsibilities, we are older and I have MS. But lots hasn't changed.
We still easily laughed and talked. It is nice to know that no matter what is going on in our lives that there are things that will always be a constant,something you can depend on. This friendship is one of those things.
I love that there are more and more moments where that little voice inside me is quieted. Its the voice that repeats over and over again " I have MS". It is a good quiet, because it isn't a denial of the disease, merely me living my life regardless of knowing I have something that can not be cured.
I am a huge believer that positive thinking affects the outcome of your life. Not only am I choosing the positive thinking, I am choosing the laughter and good times. The moments where that little voice is barely a whisper and I am making wonderful memories with wonderful people in my life.
We still easily laughed and talked. It is nice to know that no matter what is going on in our lives that there are things that will always be a constant,something you can depend on. This friendship is one of those things.
I love that there are more and more moments where that little voice inside me is quieted. Its the voice that repeats over and over again " I have MS". It is a good quiet, because it isn't a denial of the disease, merely me living my life regardless of knowing I have something that can not be cured.
I am a huge believer that positive thinking affects the outcome of your life. Not only am I choosing the positive thinking, I am choosing the laughter and good times. The moments where that little voice is barely a whisper and I am making wonderful memories with wonderful people in my life.
Friday, April 1, 2011
The Body
The Body is truly amazing. As I slowly regain the feeling in my body I am amazed but the ability it has to 'fix' things. MS has attacked my brain and spinal cord. The MRI shows over 30 lesions in my brain alone. It has stated the size of the lesions as up to 10 and 13mm.
There is no denying that MS has done damage. Between the black and white MRI consultation and the numbness in my right side it is easy to see what it has done to me. The fact that it has taken away things from me scares me as I know that it is capable of a lot more than what I have experienced with my attack. But just as I am amazed by all this disease has taken, I'm equally amazed by what my body is fighting to bring back.
I am fighting MS with my injections, my vitamins, exercise and diet, and Im not alone. My body, specifically my brain is fighting this as well. It has somehow managed to take the damaged parts and find a way to reroute the signals so that I can feel again. As my sense of touch is slowly coming back and the tingling subsides I remain in awe that no matter how much I do to fight this disease, my body is strong and fighting just as hard.
There is no denying that MS has done damage. Between the black and white MRI consultation and the numbness in my right side it is easy to see what it has done to me. The fact that it has taken away things from me scares me as I know that it is capable of a lot more than what I have experienced with my attack. But just as I am amazed by all this disease has taken, I'm equally amazed by what my body is fighting to bring back.
I am fighting MS with my injections, my vitamins, exercise and diet, and Im not alone. My body, specifically my brain is fighting this as well. It has somehow managed to take the damaged parts and find a way to reroute the signals so that I can feel again. As my sense of touch is slowly coming back and the tingling subsides I remain in awe that no matter how much I do to fight this disease, my body is strong and fighting just as hard.
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