I am sorry it has been so long since my last blog. Life is going by me in a flash. So much has happened in a short period of time.
I have been fortunate and found another job. I am working in a collision shop in the front office, answering the phone and doing some computer work. I like the job very much and the other people who work there are very nice to me. Again I am astounded by my good fortune.
Overall my health has been very good. I went to my youngest son’s football game the other night and a friend commented about my not using a cane. I really have not had to use it very often in the last 3 months.
Life has at times put me in difficult situations. I can laugh about them now but at times I want to cry. Laughing is easier. I had a very bad kidney infection a month ago. I was in so much pain that a few times I went down to the floor because my back hurt so badly; very different prospective from down there. I finally got to the doctor and got some medication. I went to work on Monday when I probably should have stayed home. Monday night I had taken the medication and the two different types of pain medications. I went to the rest room during the night and after washing my hands I felt light headed so I sat down at the vanity in the bathroom. Putting your head between your legs is probably not the best idea when you are on medications but more importantly putting your head between your knees is not a good idea when you have balance issues.
Before I could stop myself or even realize how stupid I was going to look, I fell forward off the stool and hit my head on the cabinets below my sink. Being the quick contortionist that I am, I caught myself. You may start laughing!!!!!!!!! I now have the back of my head up against the bathroom cabinets, my palms on the floor; I am still on my feet so my backside is sticking straight out. My husband calls from the bedroom and asks if I am alright and I say yes. What else am I supposed to say? The only thought running through my head is, “there is no way I can get up from this position.” A few quick ideas went in and out of my mind but I knew that going down to the floor was the only way out for me. I tipped over sideways on the rug making sure not to go back and hit my head on the stool. This brought my husband into the bathroom to see what all the noise was.
Now I am lying on the floor in a fetal position pouring sweat. He asks if he can help me up and I tell him, “ no, I am sweating too much and just want to stay there for a while.” I guess he has learned to leave me alone in those situations and I was fine after a while. I eventually stopped sweating and returned to bed. Thankfully I was off on Tuesday and spent most of the day in bed sleeping. By Wednesday I was well on my way to a full recovery with the exception of the visual image I had in my head of being stuck up against the cabinet with my backside in the air.
I enjoyed telling the boys about my late night adventure and how I scared their father. My sister got a good laugh out of my adventure, but she is used to me falling a lot.
One of my funny children put a sign on my iPod-touch that says, “It takes skill to trip on flat surfaces.” Well I must be one of the most skilled people around. I use my gifts to the fullest of my abilities. Next time I will tell you about being trapped under a chair at work. Please laugh with me so I have company!
See you in the funny pages,
Joy
Sunday, September 27, 2009
Monday, July 20, 2009
Bad Turned GREAT!!!!
I was “let go” at my job recently. It hurt my feelings to think that they did not need me. How could they survive without me? More importantly, where would I ever find a job in my condition? Sounds like a cry-baby to me and, that is exactly what I was doing. But that all changed really quickly.
I went to the doctor a few days later and got some very encouraging news. The Dr. told me that he would not change anything I was doing or medications I was taking. I have now been over a year without a major exacerbation, my balance has improved, and my coordination is not getting worse. My mild vertigo seems to have faded away. WHAT GREAT NEWS! To me this was almost like getting a clean bill of health. I am not cured but it is not progressing at a fast rate. Again, I am blessed.
After the doctor left, I spoke with his wonderful nurse about what he said to me during the appointment. She told me that I was so positive about my MS, and she thought that is where I was making the biggest difference in my own treatment. I left the office on cloud nine and finally felt a small bit of proof that my hard work was paying off. I can do this and I will win!
My day got even better. I know you are having a hard time believing I could have gotten more good news in one day. On the way home from the doctor’s office, I received a call from the veterinarian our family pets use. I won a drawing for a free year of Sentinel, heart worm preventative. Voicing concern that she must have called the wrong person, I was quickly reassured that I had registered and won. I told her that I always register and never win but I would pick it up before she changed her mind.
I recently visited my sister in another state and stayed 3 days longer than planned since my schedule is flexible now. I have also revisited my “project” list here at home, and I have plenty of things to keep me busy for a long while. My renewed belief in my exercise and physical therapy efforts will also take some additional time since I know that it is one of my top priorities.
A secret hope of mine is that when my older son has his senior night for Basketball in 3 more years, I will be able to accompany him to mid-court without any trouble. Once I meet this first goal, then I will work on doing the same with my younger son 3 years after that. I will keep all of you posted on my progress.
Walking with a twinkle in my eye,
Joy
I went to the doctor a few days later and got some very encouraging news. The Dr. told me that he would not change anything I was doing or medications I was taking. I have now been over a year without a major exacerbation, my balance has improved, and my coordination is not getting worse. My mild vertigo seems to have faded away. WHAT GREAT NEWS! To me this was almost like getting a clean bill of health. I am not cured but it is not progressing at a fast rate. Again, I am blessed.
After the doctor left, I spoke with his wonderful nurse about what he said to me during the appointment. She told me that I was so positive about my MS, and she thought that is where I was making the biggest difference in my own treatment. I left the office on cloud nine and finally felt a small bit of proof that my hard work was paying off. I can do this and I will win!
My day got even better. I know you are having a hard time believing I could have gotten more good news in one day. On the way home from the doctor’s office, I received a call from the veterinarian our family pets use. I won a drawing for a free year of Sentinel, heart worm preventative. Voicing concern that she must have called the wrong person, I was quickly reassured that I had registered and won. I told her that I always register and never win but I would pick it up before she changed her mind.
I recently visited my sister in another state and stayed 3 days longer than planned since my schedule is flexible now. I have also revisited my “project” list here at home, and I have plenty of things to keep me busy for a long while. My renewed belief in my exercise and physical therapy efforts will also take some additional time since I know that it is one of my top priorities.
A secret hope of mine is that when my older son has his senior night for Basketball in 3 more years, I will be able to accompany him to mid-court without any trouble. Once I meet this first goal, then I will work on doing the same with my younger son 3 years after that. I will keep all of you posted on my progress.
Walking with a twinkle in my eye,
Joy
Tuesday, June 23, 2009
Life From a Different Perspective:
Because of some special circumstances, my oldest son has been able to feel first hand some of the effects I deal with having multiple sclerosis. Not that I wish my symptoms on anyone, but it is easier for him to understand some of my daily struggles. This is my oldest son who wrote the essay about his mom having MS. I would like to see a rewrite of it the same essay now to see if any of his views have changed.
Since it is summer vacation, my son is going to the gym with me early so he can work out. He has even gotten up extra early and opened up the gym with me at 5:00am so I am not alone. His new dedication to his physical condition has paid off and he is even working with a trainer for increased strength and endurance. The trainer and he worked especially hard one day on legs. Then next day my son said how much his legs hurt and how sore he was. He worked out again and could not stop commenting on how much it hurt to move or basically do anything.
While we were running errands later that day he once again commented on his legs and I said, “You are going to be sore from time to time.” He said, “But, Mom you don’t understand, my legs are so heavy.” Well, it did not take me long to tell him that is how I feel every day. I told him the same story I have shared with all of you about how I start off the day feeling normal and it changes as the day goes on. It feels like every hour another ankle weight is added to my legs and by the end of the day, it takes everything I have to walk, much less walk up steps or try to carry anything other than my own body weight. He said he understood a little more how I felt but I hope he will remember that in another few months while he is waiting on me to catch up with him while we are walking somewhere.
The next event was not funny but we take understanding where we can get it. This is an event I do not want to happen to him again, but he is young and I hope he does not feel the effects of this later in life.
Again this is my oldest son who is now almost 6’3” tall. Being that tall, your head is already a good length from the floor and add to that your vertical leap in a basketball game and the impact of falling to the floor after breaking your nose gives you a pretty bad concussion. I was already thinking that the fractured nose would be enough to make me retire from the sport but the concussion is what really put him out of commission for the next 4 weeks.
He experienced some very dramatic personality differences almost immediately. The next day he explained to me that he felt like he was in an “alternate reality”. It was later discussed that he sometimes knows someone is talking to him but he can’t understand if they are really talking to him. It was explained to me that he had cellophane on his head and it took longer for him to process everything and figure out what was being said. He even had some problems, very minor, with his vision. An x-ray and Cat scan later and it was determined that he did fracture his nose and suffer a grade 3 concussion, but there was no threatening swelling at this time. The decision was made that, for some time, he should not participate in any activities that may have physical contact.
On the car ride home I decided it would be a good time to tell him that sometimes when my MS is acting up that I feel like I am in that same “thinking” fog. I hear people, I process what they are saying and I say something back but it is all just a hair slower than normal. I am in the fog and my lights are not working real well. I then told him that now he understands what I face from time to time.
I will say that my timing was not the best. His nose hurt, he had a bad headache and had just been told that he could not be able to play basketball for the next four weeks. While I was pleased that we could use the opportunity to bond on a different level, he was trying to say that this whole new episode in our lives was not about me and my MS. I will give him that one but in a few more weeks when his headaches are gone and he is playing basketball again, I will save this information to bring up again.
As always keep a smile on your face,
Joy
Since it is summer vacation, my son is going to the gym with me early so he can work out. He has even gotten up extra early and opened up the gym with me at 5:00am so I am not alone. His new dedication to his physical condition has paid off and he is even working with a trainer for increased strength and endurance. The trainer and he worked especially hard one day on legs. Then next day my son said how much his legs hurt and how sore he was. He worked out again and could not stop commenting on how much it hurt to move or basically do anything.
While we were running errands later that day he once again commented on his legs and I said, “You are going to be sore from time to time.” He said, “But, Mom you don’t understand, my legs are so heavy.” Well, it did not take me long to tell him that is how I feel every day. I told him the same story I have shared with all of you about how I start off the day feeling normal and it changes as the day goes on. It feels like every hour another ankle weight is added to my legs and by the end of the day, it takes everything I have to walk, much less walk up steps or try to carry anything other than my own body weight. He said he understood a little more how I felt but I hope he will remember that in another few months while he is waiting on me to catch up with him while we are walking somewhere.
The next event was not funny but we take understanding where we can get it. This is an event I do not want to happen to him again, but he is young and I hope he does not feel the effects of this later in life.
Again this is my oldest son who is now almost 6’3” tall. Being that tall, your head is already a good length from the floor and add to that your vertical leap in a basketball game and the impact of falling to the floor after breaking your nose gives you a pretty bad concussion. I was already thinking that the fractured nose would be enough to make me retire from the sport but the concussion is what really put him out of commission for the next 4 weeks.
He experienced some very dramatic personality differences almost immediately. The next day he explained to me that he felt like he was in an “alternate reality”. It was later discussed that he sometimes knows someone is talking to him but he can’t understand if they are really talking to him. It was explained to me that he had cellophane on his head and it took longer for him to process everything and figure out what was being said. He even had some problems, very minor, with his vision. An x-ray and Cat scan later and it was determined that he did fracture his nose and suffer a grade 3 concussion, but there was no threatening swelling at this time. The decision was made that, for some time, he should not participate in any activities that may have physical contact.
On the car ride home I decided it would be a good time to tell him that sometimes when my MS is acting up that I feel like I am in that same “thinking” fog. I hear people, I process what they are saying and I say something back but it is all just a hair slower than normal. I am in the fog and my lights are not working real well. I then told him that now he understands what I face from time to time.
I will say that my timing was not the best. His nose hurt, he had a bad headache and had just been told that he could not be able to play basketball for the next four weeks. While I was pleased that we could use the opportunity to bond on a different level, he was trying to say that this whole new episode in our lives was not about me and my MS. I will give him that one but in a few more weeks when his headaches are gone and he is playing basketball again, I will save this information to bring up again.
As always keep a smile on your face,
Joy
Wednesday, May 20, 2009
Exercise, Exercise, Exercise
If you have Multiple Sclerosis , have a family member who has it or just know someone who is fighting MS, Encourage them to Exercise, Stretch and MOVE! We can help our own bodies fight MS if we keep it healthy and strong. Our muscles, and minds, have to be flexible so we will have the ability to adapt our body and movements to the changes we may face on our journey with Multiple Sclerosis.
We are one week away from summer vacation and my youngest has decided to be sick and miss a week of school. My oldest got his learners permit, that requires at least 2 more blogs, and in general, life has kept me on the go at a hectic pace for the last month. I have made bad decisions during this time and have skipped a few workouts but mainly, I have cut short my workouts in a effort to save time. As a result of my impatience, I spent the last week with stiff legs, an aching hip and I have even become dizzy a few times. All of that wonderful time I saved by cutting short my exercise routine, has been spent feeling a little under the weather and struggling to stay mobile. Yes I know that it is my fault and I will learn from this mistake. Along with all the other notes I leave myself on my desk is a new and BIGGER one that says, EXERCISE TO FIGHT MS, COMES FIRST.
If I do not keep my focus on the fact that my fight against MS will help me be stronger for the people I love, then I will be more of a burden to them in the long run. Not only am I waging this battle for myself, but for my family too. Thankfully this problem had an easy solution. I went full force back into my exercise and stretching program this week, even a Saturday at the gym. Within 4 days of concentration on all the moves that helped loosen and energize my body, I am already moving better. I have my schedule set for the next week and will remember how tough it was to walk and move for a few days; don’t want to go there again.
We have added a “Senior Cardio” class at our gym and I am going to go take a class with them this week. They use chairs to help with their balance while standing and perform some exercises while sitting. I am going to try the class and gather more information on programs for people overcoming balance issues. There is also an aerobics demonstration offered at a local physical therapy center that I want to look intoso I can learn about things I can do on my own in the pool this summer.
In an earlier blog I had talked about cognitive functions and struggles to help me stay focused. The puzzles that I do each night seem to really be helping me. It is my bedtime routine now to work on one of my Sudoku puzzles and it is a time that I look forward to each night. I enjoy hearing about other people’s inventive ways to remember things; always send those if you have them.
Opportunities are available if MS survivors will just look for them. Sometimes we need a little push in the right direction to get us going. I have met 3 more people this week with Family members who have Multiple Sclerosis. I constantly encourage them to help their loved ones stay positive and active. It saddens me when I hear about others who are just sitting around waiting to see what happens. Get up and get out; use a cane, use a walker, use a chair, JUST GET OUT and continue living a fulfilling life. Don’t let people sit at home, force us to get out, encourage us to join you for an adventure somewhere even if it is to the grocery store.
As always, fighting to be a THRIVER of MS, not just a survivor.
Joy
We are one week away from summer vacation and my youngest has decided to be sick and miss a week of school. My oldest got his learners permit, that requires at least 2 more blogs, and in general, life has kept me on the go at a hectic pace for the last month. I have made bad decisions during this time and have skipped a few workouts but mainly, I have cut short my workouts in a effort to save time. As a result of my impatience, I spent the last week with stiff legs, an aching hip and I have even become dizzy a few times. All of that wonderful time I saved by cutting short my exercise routine, has been spent feeling a little under the weather and struggling to stay mobile. Yes I know that it is my fault and I will learn from this mistake. Along with all the other notes I leave myself on my desk is a new and BIGGER one that says, EXERCISE TO FIGHT MS, COMES FIRST.
If I do not keep my focus on the fact that my fight against MS will help me be stronger for the people I love, then I will be more of a burden to them in the long run. Not only am I waging this battle for myself, but for my family too. Thankfully this problem had an easy solution. I went full force back into my exercise and stretching program this week, even a Saturday at the gym. Within 4 days of concentration on all the moves that helped loosen and energize my body, I am already moving better. I have my schedule set for the next week and will remember how tough it was to walk and move for a few days; don’t want to go there again.
We have added a “Senior Cardio” class at our gym and I am going to go take a class with them this week. They use chairs to help with their balance while standing and perform some exercises while sitting. I am going to try the class and gather more information on programs for people overcoming balance issues. There is also an aerobics demonstration offered at a local physical therapy center that I want to look intoso I can learn about things I can do on my own in the pool this summer.
In an earlier blog I had talked about cognitive functions and struggles to help me stay focused. The puzzles that I do each night seem to really be helping me. It is my bedtime routine now to work on one of my Sudoku puzzles and it is a time that I look forward to each night. I enjoy hearing about other people’s inventive ways to remember things; always send those if you have them.
Opportunities are available if MS survivors will just look for them. Sometimes we need a little push in the right direction to get us going. I have met 3 more people this week with Family members who have Multiple Sclerosis. I constantly encourage them to help their loved ones stay positive and active. It saddens me when I hear about others who are just sitting around waiting to see what happens. Get up and get out; use a cane, use a walker, use a chair, JUST GET OUT and continue living a fulfilling life. Don’t let people sit at home, force us to get out, encourage us to join you for an adventure somewhere even if it is to the grocery store.
As always, fighting to be a THRIVER of MS, not just a survivor.
Joy
Friday, April 24, 2009
From a 14 Year Old's Point of View.
My oldest son came home from school on Wednesday afternoon with note from school. He won "Honorable Mention" in our local Rotary Club's essay contest. The topic was "Laws of Life". I asked him if I could read his paper and he said he did not have it and then I asked what he wrote about and he told me it was about me and my MS. He brought the paper home today and it is below.
It was around late October last year when my mother found out she had Multiple Sclerosis. It impacted my life greatly. First finding out, I had no clue about the seriousness of the symptoms. It made me quit worrying about the things I don't have and appreciate the things I already have. Upon finding this out I realized I just needed to stop and smell the roses.
This disease has many symptoms that affect her day-to-day life style. One symptom that affects her is poor balance. She always has a difficult time walking. I used to always think she just walked in a weird way but the MS causes her to walk in a different way. It also makes her dizzy and she often stumbles over the smallest of things. Another symptom is weakness. She is very clumsy and she has a tendency to drop things. When my mother walks, she often drags her leg, she cannot control it when she does this. One of the last main symptoms that affects her is her memory. She has a difficult time remembering things and usually needs to hear something more than once. She also senses that she is thinking in a fog.
Ever sense my mother was diagnosed with Multiple Sclerosis, I have tried my best to help her in every way I can. I usually let her hold on to me when we are walking into the store or up some stairs so she doesn't lose her balance and fall. My mom recently started using a cane to get around because she does not want to embarrass me by holding on to my arm. She can be so stubborn some times but I still love her.
Now more than ever, if I tell my mom something I need to write it down for her or tell her two or three times to make sure she doesn't forget. This gets very aggravating for me but I just have to remind myself of the symptoms she has. It seems like every time we go somewhere in public someone just has to stare at her. She is perfectly fine and has nothing wrong. So what if she drags her leg or sometimes forgets things, normal people forget things and drag their legs also. They act like they have never seen it before.
Although my mom may drag her leg and forget some or most of the things I tell her unless I write it down, I still love her no matter what. She is no different to me now than she was before she was diagnosed with Multiple Sclerosis. This has impacted my life in a tremendous way. Either way mom is still mom and people need to realize what they have and just take time to Stop and Smell the Roses.
1/22/09 Stop and Smell the Roses
It was around late October last year when my mother found out she had Multiple Sclerosis. It impacted my life greatly. First finding out, I had no clue about the seriousness of the symptoms. It made me quit worrying about the things I don't have and appreciate the things I already have. Upon finding this out I realized I just needed to stop and smell the roses.
This disease has many symptoms that affect her day-to-day life style. One symptom that affects her is poor balance. She always has a difficult time walking. I used to always think she just walked in a weird way but the MS causes her to walk in a different way. It also makes her dizzy and she often stumbles over the smallest of things. Another symptom is weakness. She is very clumsy and she has a tendency to drop things. When my mother walks, she often drags her leg, she cannot control it when she does this. One of the last main symptoms that affects her is her memory. She has a difficult time remembering things and usually needs to hear something more than once. She also senses that she is thinking in a fog.
Ever sense my mother was diagnosed with Multiple Sclerosis, I have tried my best to help her in every way I can. I usually let her hold on to me when we are walking into the store or up some stairs so she doesn't lose her balance and fall. My mom recently started using a cane to get around because she does not want to embarrass me by holding on to my arm. She can be so stubborn some times but I still love her.
Now more than ever, if I tell my mom something I need to write it down for her or tell her two or three times to make sure she doesn't forget. This gets very aggravating for me but I just have to remind myself of the symptoms she has. It seems like every time we go somewhere in public someone just has to stare at her. She is perfectly fine and has nothing wrong. So what if she drags her leg or sometimes forgets things, normal people forget things and drag their legs also. They act like they have never seen it before.
Although my mom may drag her leg and forget some or most of the things I tell her unless I write it down, I still love her no matter what. She is no different to me now than she was before she was diagnosed with Multiple Sclerosis. This has impacted my life in a tremendous way. Either way mom is still mom and people need to realize what they have and just take time to Stop and Smell the Roses.
Monday, April 6, 2009
Pity Party:
I was in the car by myself and had a pity party. The guest list included, Me, Myself and I, and we were all in rare form. I was happy that Senators Owens and Powell from South Carolina were not there to witness my party. These two crusty old men would have taken me outback to the woodshed for a much needed Attitude Adjustment. I had no one to blame but myself and no one could fix it but me. You all know me, I will start at the beginning and take the long way around talking to get you back to this place. Just know that during this most recent adventure, I passed many different levels of emotions that ended in shame.
I was going out of town this past weekend to help my better half pack up and empty a space that we have recently rented out to others. I thought I was doing so much better with my memory/cognitive skills that maybe I was getting a little lazy about it. While packing up the car for the drive to meet him, I remembered that I was not supposed to bring the coffee table we had sitting in the garage. I very strategically took some meat out of two different freezers and packed it in one cooler to take with me. When I spoke with my husband that morning, I was proud to tell him that I had remembered the meat and it was in a cooler beside the car so I would not forget it. He told me that he had already told me once that we were not going to grill the meet and he needed me to leave it at home. I clearly did not remember that conversation but shrugged it off, no harm done.
During the next two days of packing various items I had to constantly ask him the same question more than once on different topics. I tried to tell myself that I was confused because we were talking about twin beds and full beds and doing one thing with the twin and something different with the full. It sounded like a good excuse to me but by the second day I was getting frustrated at myself for having to constantly ask him to repeat himself to me. In my mind, I was thinking about how way back when I was in kindergarten the teachers would use a straight pin to attach a note to your shirt so your mom would get it when you got home from school. Maybe I need to pin notes to myself so I would not forget.
Here is the event that put me over the edge on my path to self pity for a humiliating 2 hour ride home. After we went to a lunch where my youngest son held my phone, I realized after he left with his grandmother, I had neglected to ask for my phone back. My husband called and said they were not too far up the road, and I said I would meet them at Wal-Mart . I took off to sit in the parking lot at Wal-Mart to wait for the phone and a second chance to force my youngest to hug me yet again. After waiting for 45 minutes, I decided that something was wrong with the plan and I should call. Guess what……………..there are not many pay phones these days and more important, the ones that are available do not work but take the coins from your fingertips.
I started driving towards home, and after 3 more stops, was unuccessfull finding a payphone. My fourth stop at a grocery store led me to a young girl who handed me her cell phone and I called my husband. He asked where I was. After I told him I waited for 45 minutes and they never showed up, he told me that he had my phone. They had come back to our condo to bring the phone and he thought I was going downstairs. He had told me before I left that they were still close by and coming back but I had it fixed in my head to go meet them at Wal-Mart. A major misunderstanding on MY part.
I thanked the sweet girl at the grocery store and went out to my car and started crying. I was wondering if I was losing my mind. I was worried that next time I might forget or misunderstand something that would cause someone pain or even hurt them physically. I was imagining that I might forget and leave one of my children somewhere or not remember who I was. This was all during the self-pity phase when I was thinking to myself that these memory lapses could get bad, very bad if I let them. Where would I be in five years at this rate?
Paranoia hit next. Where was everyone in my family? Was I supposed to be anywhere soon to meet someone? What else had I forgotten? I thought back and I could remember my childhood and college years and most things that I am sure I was supposed to retain from the first 43 years of my life. Short term memory seemed to be my BIG problem. Panic hit a little on top of paranoia to make a nice little cocktail of anxiety surge through my chest. Now I was not only losing my mind, but hyperventilating on top of that. Would I even remember whom I would need to call, or their number, if I had to pull over. Now back to one of the original problems, I DON’T HAVE A PHONE WITH ME. I needed to just get home, would I remember the way.
After I passed the half way mark, I started to calm down a little bit and started making notes on the pad of paper I carry in the car. The list included things I needed to do when I got home, things to remember for the upcoming week, research to do on memory vitamins and various pages of other “stuff”. My handwriting has never been very graceful or elegant and since the MS has started affecting my right hand, it has increasingly become worse. Trying to read a pad of paper written in a car while driving with a combination of messy writing and a wet marks is difficult sometimes. The therapeutic task of writing did its trick and started to calm me down and I started to think back over the whole weekend from a different and calmer point of view.
The next emotion I faced was shame. How could I have felt sorry for myself? What a waste of my time! I realized that I let my embarrassment and pride overrule my sense of balance. While I am seeing losses in some areas of my mobility and thought processes, I know deep down in my heart that I am a person who has many blessings. I can’t lose sight of those blessings and I can and will find a way to overcome these memory problems. By the time I got home I had a plan in place and I asked my husband if he would help me. I am going to try and repeat back to him and others what I hear them say to me so that I know we are both understanding the same thing. I am sure that when my children return from spring break they will think I have lost yet another marble when I start repeating what they have just said to me.
Attitude is everything and I will try to keep self-pity at bay. It is much more fun to be happy. I really do not want a trip to the woodshed with Senators Owens and Powell, so positive attitude for me.
Joy
I was going out of town this past weekend to help my better half pack up and empty a space that we have recently rented out to others. I thought I was doing so much better with my memory/cognitive skills that maybe I was getting a little lazy about it. While packing up the car for the drive to meet him, I remembered that I was not supposed to bring the coffee table we had sitting in the garage. I very strategically took some meat out of two different freezers and packed it in one cooler to take with me. When I spoke with my husband that morning, I was proud to tell him that I had remembered the meat and it was in a cooler beside the car so I would not forget it. He told me that he had already told me once that we were not going to grill the meet and he needed me to leave it at home. I clearly did not remember that conversation but shrugged it off, no harm done.
During the next two days of packing various items I had to constantly ask him the same question more than once on different topics. I tried to tell myself that I was confused because we were talking about twin beds and full beds and doing one thing with the twin and something different with the full. It sounded like a good excuse to me but by the second day I was getting frustrated at myself for having to constantly ask him to repeat himself to me. In my mind, I was thinking about how way back when I was in kindergarten the teachers would use a straight pin to attach a note to your shirt so your mom would get it when you got home from school. Maybe I need to pin notes to myself so I would not forget.
Here is the event that put me over the edge on my path to self pity for a humiliating 2 hour ride home. After we went to a lunch where my youngest son held my phone, I realized after he left with his grandmother, I had neglected to ask for my phone back. My husband called and said they were not too far up the road, and I said I would meet them at Wal-Mart . I took off to sit in the parking lot at Wal-Mart to wait for the phone and a second chance to force my youngest to hug me yet again. After waiting for 45 minutes, I decided that something was wrong with the plan and I should call. Guess what……………..there are not many pay phones these days and more important, the ones that are available do not work but take the coins from your fingertips.
I started driving towards home, and after 3 more stops, was unuccessfull finding a payphone. My fourth stop at a grocery store led me to a young girl who handed me her cell phone and I called my husband. He asked where I was. After I told him I waited for 45 minutes and they never showed up, he told me that he had my phone. They had come back to our condo to bring the phone and he thought I was going downstairs. He had told me before I left that they were still close by and coming back but I had it fixed in my head to go meet them at Wal-Mart. A major misunderstanding on MY part.
I thanked the sweet girl at the grocery store and went out to my car and started crying. I was wondering if I was losing my mind. I was worried that next time I might forget or misunderstand something that would cause someone pain or even hurt them physically. I was imagining that I might forget and leave one of my children somewhere or not remember who I was. This was all during the self-pity phase when I was thinking to myself that these memory lapses could get bad, very bad if I let them. Where would I be in five years at this rate?
Paranoia hit next. Where was everyone in my family? Was I supposed to be anywhere soon to meet someone? What else had I forgotten? I thought back and I could remember my childhood and college years and most things that I am sure I was supposed to retain from the first 43 years of my life. Short term memory seemed to be my BIG problem. Panic hit a little on top of paranoia to make a nice little cocktail of anxiety surge through my chest. Now I was not only losing my mind, but hyperventilating on top of that. Would I even remember whom I would need to call, or their number, if I had to pull over. Now back to one of the original problems, I DON’T HAVE A PHONE WITH ME. I needed to just get home, would I remember the way.
After I passed the half way mark, I started to calm down a little bit and started making notes on the pad of paper I carry in the car. The list included things I needed to do when I got home, things to remember for the upcoming week, research to do on memory vitamins and various pages of other “stuff”. My handwriting has never been very graceful or elegant and since the MS has started affecting my right hand, it has increasingly become worse. Trying to read a pad of paper written in a car while driving with a combination of messy writing and a wet marks is difficult sometimes. The therapeutic task of writing did its trick and started to calm me down and I started to think back over the whole weekend from a different and calmer point of view.
The next emotion I faced was shame. How could I have felt sorry for myself? What a waste of my time! I realized that I let my embarrassment and pride overrule my sense of balance. While I am seeing losses in some areas of my mobility and thought processes, I know deep down in my heart that I am a person who has many blessings. I can’t lose sight of those blessings and I can and will find a way to overcome these memory problems. By the time I got home I had a plan in place and I asked my husband if he would help me. I am going to try and repeat back to him and others what I hear them say to me so that I know we are both understanding the same thing. I am sure that when my children return from spring break they will think I have lost yet another marble when I start repeating what they have just said to me.
Attitude is everything and I will try to keep self-pity at bay. It is much more fun to be happy. I really do not want a trip to the woodshed with Senators Owens and Powell, so positive attitude for me.
Joy
Wednesday, April 1, 2009
To Medicate or Not To Medicate
A friend told me to read some post on the facebook multiple sclerosis board. One person was saying that a certain kind of treatment was wrong. Lots of people wrote back and said that each of us have to do what is right for ourselves and let others make their own decisions.
I am being proactive and attacking my MS in a way that suits me. I will gain power from my efforts because I believe it is best for me. While I think the things I am doing are very worthwhile, I also realize that every MS patient reacts in different ways to treatments. It is up to all patients to do research and visit with their chosen healthcare provider ready with questions and knowledge of treatments that are available.
There are many different forms of treatments for Multiple Sclerosis from Homeopathic or medications and many other forms and combinations of treatments in-between. I have made a decision based on my needs, symptoms and family input. I will let others know how well my chosen treatment is working for me, but will always encourage others to become familiar with everything available.
No one should be criticized for choosing one path over another. People who do not know about Multiple Sclerosis, the symptoms and how many of the symptoms are invisible, do not need to suggest things for me to try. While I am sure that these comments are meant with the best of intentions, I am sure that if this “juice” or that “pill” really worked that all the MS publications would be shouting it from the roof tops. Not to mention that my Doctor, Chiropractor, or Physical Therapist would probably tell me to go and get “it” NOW.
I have said it before and will say it again; I am at peace with my diagnosis. I do not know the ultimate plan or where the journey or path will end but I am going to have a darn good time getting there. I will see all of you at the checkered line when we all get there, you will hear me coming, I will be the one laughing and sliding in sideways.
Sunny side up!
Joy
I am being proactive and attacking my MS in a way that suits me. I will gain power from my efforts because I believe it is best for me. While I think the things I am doing are very worthwhile, I also realize that every MS patient reacts in different ways to treatments. It is up to all patients to do research and visit with their chosen healthcare provider ready with questions and knowledge of treatments that are available.
There are many different forms of treatments for Multiple Sclerosis from Homeopathic or medications and many other forms and combinations of treatments in-between. I have made a decision based on my needs, symptoms and family input. I will let others know how well my chosen treatment is working for me, but will always encourage others to become familiar with everything available.
No one should be criticized for choosing one path over another. People who do not know about Multiple Sclerosis, the symptoms and how many of the symptoms are invisible, do not need to suggest things for me to try. While I am sure that these comments are meant with the best of intentions, I am sure that if this “juice” or that “pill” really worked that all the MS publications would be shouting it from the roof tops. Not to mention that my Doctor, Chiropractor, or Physical Therapist would probably tell me to go and get “it” NOW.
I have said it before and will say it again; I am at peace with my diagnosis. I do not know the ultimate plan or where the journey or path will end but I am going to have a darn good time getting there. I will see all of you at the checkered line when we all get there, you will hear me coming, I will be the one laughing and sliding in sideways.
Sunny side up!
Joy
Tuesday, March 24, 2009
I may need a sign.....
A young woman I work with asked me a question today. She said, “I hope you do not mind me asking, does MS hurt you, and are you in pain?” I did not mind her asking and I tried to answer her but it made me realize that MS has symptoms that people can’t see so maybe I should wear a sign or T-shirt.
I am tired today.
Thinking a little slow or “foggy” today.
Leg weighs 100 pounds today.
Can’t work my fingers, please help me with my buttons.
Dragging my foot, just step over me if I fall down.
I feel a little “Off Balance” so I am using the cane so I won’t fall.
Maybe shirts or signs would help others understand. People know you are going to have trouble walking if you have a cast on a leg but it is hard to explain how as the day goes on, your leg gets so heavy. It really does not “hurt” to walk it is just very difficult to walk and it does begin to get annoying when you struggle to pick a leg up and fatigue other muscles. Let me try it to say how it feels another way. I start the day off and my leg feels normal. As I start walking around getting ready in the morning and make SEVERAL trips down the hall to get my kids going, it slowly starts. When I say starts I mean that it feels like ankle weights are being added in very small amounts that are just slightly noticeable at first but the longer you move with them, the heavier they feel and the more noticeable they become.
At the grocery store or larger “Super Store” I can hold on to the cart which makes it easier to move around. I now take the cart all the way to my car for the stability of the handle. I do not try to carry bags very often. Ketchup in a bag adds enough weight to alter my sense of balance and is an accident waiting to happen. Have you ever noticed how far back in the store the milk is? I know a lot of the employees at Wal-Mart and Kroger, now I make a game of speaking to as many of them as I can on my “milk” trips. I have been told that if I will call, they will have it up front for me, but that would not be nearly as much fun.
Some people joke with me about my struggles to move or walk a straight line and I appreciate the humor more than I think they can understand. At the gym where I work, I was up on a small stool refilling the paper towels. I was talking, LOVE TO TALK, with some of the ladies who were on the bikes. Jokingly they told me it was nice to see me working and not just talking. I told them they would not be laughing when I fell off the stool with my skirt on. One of them immediately spoke up and said, “We will at least pull your skirt down for you.” Three days later and I am still smiling about the humor life is bringing my way.
Small pleasures in life:
Laughter of a child
A hug from a friend
A hug from one of my Kids
A smile from a stranger
Kindness of others
Making someone smile
Fellowship of family and friends
See you on the trip to pick up the milk!
Joy
I am tired today.
Thinking a little slow or “foggy” today.
Leg weighs 100 pounds today.
Can’t work my fingers, please help me with my buttons.
Dragging my foot, just step over me if I fall down.
I feel a little “Off Balance” so I am using the cane so I won’t fall.
Maybe shirts or signs would help others understand. People know you are going to have trouble walking if you have a cast on a leg but it is hard to explain how as the day goes on, your leg gets so heavy. It really does not “hurt” to walk it is just very difficult to walk and it does begin to get annoying when you struggle to pick a leg up and fatigue other muscles. Let me try it to say how it feels another way. I start the day off and my leg feels normal. As I start walking around getting ready in the morning and make SEVERAL trips down the hall to get my kids going, it slowly starts. When I say starts I mean that it feels like ankle weights are being added in very small amounts that are just slightly noticeable at first but the longer you move with them, the heavier they feel and the more noticeable they become.
At the grocery store or larger “Super Store” I can hold on to the cart which makes it easier to move around. I now take the cart all the way to my car for the stability of the handle. I do not try to carry bags very often. Ketchup in a bag adds enough weight to alter my sense of balance and is an accident waiting to happen. Have you ever noticed how far back in the store the milk is? I know a lot of the employees at Wal-Mart and Kroger, now I make a game of speaking to as many of them as I can on my “milk” trips. I have been told that if I will call, they will have it up front for me, but that would not be nearly as much fun.
Some people joke with me about my struggles to move or walk a straight line and I appreciate the humor more than I think they can understand. At the gym where I work, I was up on a small stool refilling the paper towels. I was talking, LOVE TO TALK, with some of the ladies who were on the bikes. Jokingly they told me it was nice to see me working and not just talking. I told them they would not be laughing when I fell off the stool with my skirt on. One of them immediately spoke up and said, “We will at least pull your skirt down for you.” Three days later and I am still smiling about the humor life is bringing my way.
Small pleasures in life:
Laughter of a child
A hug from a friend
A hug from one of my Kids
A smile from a stranger
Kindness of others
Making someone smile
Fellowship of family and friends
See you on the trip to pick up the milk!
Joy
Thursday, March 19, 2009
Montel talks about his MS
Montel Williams was on the Opray Winfrey show this week. While I am not an Oprah follower, I made sure to watch as Montel talked about his MS. Montel has been open about his MS and very honest about his depression and suicide attempt. Dr. Oz did a great job explaining how the Myelin cover on nerves gets damaged with MS.
The nerves in our bodies are like electrical cords with the plastic insulation on them. MS starts to destroy that cover in small holes at first and then over time the holes become larger. When the protective coating is missing, the wiring, or nerves, underneath can begin to fray. The same amount of electricity in the cord will not get from the outlet in the wall to whatever appliance or machine you have plugged in. In the case of Multiple Sclerosis, whatever signal you are sending from the brain through one of your nerves does not get where it was going as fast, or completely and at times it eventually does not get where the brain is sending it at all. In reverse, some impulses in your extremities can not get back to your brain to tell you, your skin or tissue is being pinched, burned or hurt in another way.
Multiple Sclerosis attacks different people in individual ways. Montel has pain in his left foot and ankle. He commented how many people have problems with balance but he mostly has pain and depression. I have not had the “ghost” pains; Loss of balance and coordination are my enemies right now. Thankfully I have begun a medication specifically for depression that works well for MS patients. I have said it before and will say it again, since being diagnosed and treated for MS, I feel better than I have in years.
Montel spoke about how he will never run again. I thought about it and shed a few tears as I realized the same is true for me. The nerves in my feet and the “Fast Twitch” nerves in my legs can’t respond fast enough for me to run. I have a very funny shuffle that is a source of great laughter to my children. My kids also enjoy pointing out how Grandmommie can run faster than I can. My dances are another blog by themselves but I still have fun moving.
After a few minutes of self-pity, I realized that I did not have plans or unfulfilled dreams to run in a marathon or even a 5K race so the fact that I can’t run is probably not very high on the priority list. Maybe, way back in my mind, I thought that I would be able to run again if I got some help with Multiple Sclerosis. I realize I have made tremendous progress with my balance and ankle strength so I will be thankful for that and hang up my running shoes.
I am off to find some electrical tape that can cover my nerves so I will stop having damage. My electrical tape might be in the form of laughs or smiles or the love of family & friends.
Joy
The nerves in our bodies are like electrical cords with the plastic insulation on them. MS starts to destroy that cover in small holes at first and then over time the holes become larger. When the protective coating is missing, the wiring, or nerves, underneath can begin to fray. The same amount of electricity in the cord will not get from the outlet in the wall to whatever appliance or machine you have plugged in. In the case of Multiple Sclerosis, whatever signal you are sending from the brain through one of your nerves does not get where it was going as fast, or completely and at times it eventually does not get where the brain is sending it at all. In reverse, some impulses in your extremities can not get back to your brain to tell you, your skin or tissue is being pinched, burned or hurt in another way.
Multiple Sclerosis attacks different people in individual ways. Montel has pain in his left foot and ankle. He commented how many people have problems with balance but he mostly has pain and depression. I have not had the “ghost” pains; Loss of balance and coordination are my enemies right now. Thankfully I have begun a medication specifically for depression that works well for MS patients. I have said it before and will say it again, since being diagnosed and treated for MS, I feel better than I have in years.
Montel spoke about how he will never run again. I thought about it and shed a few tears as I realized the same is true for me. The nerves in my feet and the “Fast Twitch” nerves in my legs can’t respond fast enough for me to run. I have a very funny shuffle that is a source of great laughter to my children. My kids also enjoy pointing out how Grandmommie can run faster than I can. My dances are another blog by themselves but I still have fun moving.
After a few minutes of self-pity, I realized that I did not have plans or unfulfilled dreams to run in a marathon or even a 5K race so the fact that I can’t run is probably not very high on the priority list. Maybe, way back in my mind, I thought that I would be able to run again if I got some help with Multiple Sclerosis. I realize I have made tremendous progress with my balance and ankle strength so I will be thankful for that and hang up my running shoes.
I am off to find some electrical tape that can cover my nerves so I will stop having damage. My electrical tape might be in the form of laughs or smiles or the love of family & friends.
Joy
Monday, March 16, 2009
Did I forget.........
Yes I Did.
On some days my thinking has become a little foggy. It is hard to explain but you know I am going to try anyway. I feel my reaction time is a second slower than it used to be, almost like I am in a fog. I hear someone say something and I process it in outline form.
A. I hear the words reach my ears
B. Yes, they were talking to me.
C. It takes a second longer for the words to register
D. Then another second for the whole sentence or idea to process.
E. Then I need to form my reaction.
F. I either need to say something or get moving.
These are all steps that seem to take an eternity longer than they use to. We all know that feeling of someone else getting the answer or coming up with an idea a fraction of a second quicker than we do. On some days I feel that everyone is moving and reacting in a time warp a few seconds ahead of me.
This does not happen all the time but when it does I do it up right. The days are few and far between for now. I have notes written all over the place. But I need to find some way to manage everything. Current methods are not working.
I have a beautiful and kind sister who has always taken care of everyone else ahead of herself. She always makes sure I remember to mail everyone else’s Birthday cards, even before my MS. Well, she did not remind me of her own birthday today and while cleaning out my car on Sunday, I found her cards that I went to the trouble to put extra stamps on because they were a little heavy. Extra stamps do not help if you forget to mail them.
Hurting someone who goes out of her way to help me made me realize I need some help sometimes remembering small details. My calendar is not enough. I am going to complete two websites tomorrow, www.savysugar.com and www.famundo.com. Both of these have tools and techniques for staying organized and not forgetting.
To my friends, I am sorry if I have forgotten anything, no excuses please remind me.
To my sister: I Love You and am very ashamed that I could not remember to do the one thing you help me with the rest of the year. You have put up with me for 43 years and I hope I will not forget to mail the card again in the next 43 years.
WOW, we are both 43. We are the same age for 2 months out of every year. Maybe it is not the Multiple Sclerosis that is making me forget maybe I am just getting old at 43. Sorry, I forgot your 43 too so that would make us both OLD. Lots of Love!
Joy
On some days my thinking has become a little foggy. It is hard to explain but you know I am going to try anyway. I feel my reaction time is a second slower than it used to be, almost like I am in a fog. I hear someone say something and I process it in outline form.
A. I hear the words reach my ears
B. Yes, they were talking to me.
C. It takes a second longer for the words to register
D. Then another second for the whole sentence or idea to process.
E. Then I need to form my reaction.
F. I either need to say something or get moving.
These are all steps that seem to take an eternity longer than they use to. We all know that feeling of someone else getting the answer or coming up with an idea a fraction of a second quicker than we do. On some days I feel that everyone is moving and reacting in a time warp a few seconds ahead of me.
This does not happen all the time but when it does I do it up right. The days are few and far between for now. I have notes written all over the place. But I need to find some way to manage everything. Current methods are not working.
I have a beautiful and kind sister who has always taken care of everyone else ahead of herself. She always makes sure I remember to mail everyone else’s Birthday cards, even before my MS. Well, she did not remind me of her own birthday today and while cleaning out my car on Sunday, I found her cards that I went to the trouble to put extra stamps on because they were a little heavy. Extra stamps do not help if you forget to mail them.
Hurting someone who goes out of her way to help me made me realize I need some help sometimes remembering small details. My calendar is not enough. I am going to complete two websites tomorrow, www.savysugar.com and www.famundo.com. Both of these have tools and techniques for staying organized and not forgetting.
To my friends, I am sorry if I have forgotten anything, no excuses please remind me.
To my sister: I Love You and am very ashamed that I could not remember to do the one thing you help me with the rest of the year. You have put up with me for 43 years and I hope I will not forget to mail the card again in the next 43 years.
WOW, we are both 43. We are the same age for 2 months out of every year. Maybe it is not the Multiple Sclerosis that is making me forget maybe I am just getting old at 43. Sorry, I forgot your 43 too so that would make us both OLD. Lots of Love!
Joy
Saturday, March 14, 2009
Do you know where you are going?
Hello friends:
I was cleaning out emails today and was looking for an email I had saved a while back. I did not find it but did reread the one below. I often read someting that reminds me that LIFE IS GOOD RIGHT WHERE I AM AT!
Joy
*****************************************************
Where Are You Going?
Author: unknown
A boat docked in a tiny Mexican village. An American tourist complimented the Mexican fisherman on the quality of his fish and asked how long it took him to catch them.
"Not very long," answered the Mexican. "But then, why didn't you stay out longer and catch more?" asked the American.
The Mexican explained that his small catch was sufficient to meet his needs and those of his family. The American asked, "But what do you do with the rest of your time?"
"I sleep late, fish a little, play with my children, and take a siesta with my wife. In the evenings, I go into the village to see my friends, play the guitar, and sing a few songs... I have a full life."
The American interrupted, "I have an MBA from Harvard, and I can help you! You should start by fishing longer every day. You can then sell the extra fish you catch. With the extra revenue, you can buy a bigger boat."
"And after that?" asked the Mexican.
"With the extra money the larger boat will bring, you can buy a second one and a third one and so on until you have an entire fleet of trawlers. Instead of selling your fish to a middle man, you can then negotiate directly with the processing plants and maybe even open your own plant. You can then leave this little village and move to Mexico City, Los Angeles, or even New York City! From there you can direct your huge new enterprise."
"How long would that take?" asked the Mexican.
"Twenty, perhaps twenty-five years," replied the American.
"And after that?"
"Afterwards? Well my Friend, That's when it gets really interesting," answered the American, laughing. "When your business gets really big, you can start selling stocks and make millions!"
"Millions? Really? And after that?" said the Mexican.
"After that you'll be able to retire, live in a tiny village near the coast, sleep late, play with your children, catch a few fish, take a siesta with your wife and spend your evenings doing what you like and enjoying your friends."
And the moral is:
Know where you're going in life...you may already be there.
I was cleaning out emails today and was looking for an email I had saved a while back. I did not find it but did reread the one below. I often read someting that reminds me that LIFE IS GOOD RIGHT WHERE I AM AT!
Joy
*****************************************************
Where Are You Going?
Author: unknown
A boat docked in a tiny Mexican village. An American tourist complimented the Mexican fisherman on the quality of his fish and asked how long it took him to catch them.
"Not very long," answered the Mexican. "But then, why didn't you stay out longer and catch more?" asked the American.
The Mexican explained that his small catch was sufficient to meet his needs and those of his family. The American asked, "But what do you do with the rest of your time?"
"I sleep late, fish a little, play with my children, and take a siesta with my wife. In the evenings, I go into the village to see my friends, play the guitar, and sing a few songs... I have a full life."
The American interrupted, "I have an MBA from Harvard, and I can help you! You should start by fishing longer every day. You can then sell the extra fish you catch. With the extra revenue, you can buy a bigger boat."
"And after that?" asked the Mexican.
"With the extra money the larger boat will bring, you can buy a second one and a third one and so on until you have an entire fleet of trawlers. Instead of selling your fish to a middle man, you can then negotiate directly with the processing plants and maybe even open your own plant. You can then leave this little village and move to Mexico City, Los Angeles, or even New York City! From there you can direct your huge new enterprise."
"How long would that take?" asked the Mexican.
"Twenty, perhaps twenty-five years," replied the American.
"And after that?"
"Afterwards? Well my Friend, That's when it gets really interesting," answered the American, laughing. "When your business gets really big, you can start selling stocks and make millions!"
"Millions? Really? And after that?" said the Mexican.
"After that you'll be able to retire, live in a tiny village near the coast, sleep late, play with your children, catch a few fish, take a siesta with your wife and spend your evenings doing what you like and enjoying your friends."
And the moral is:
Know where you're going in life...you may already be there.
Tuesday, March 10, 2009
Why I write:
I have folders full of scrap pieces of paper, napkins and notebooks with lots of stories written down. Apparently this is personal therapy. Very few people have ever read my writing. It is a side of myself that scares me to share with other people. The possibilities are endless….. What if they do not like it? What if they think I am crazy? Who knows if one can follow the intended train of thought? Is it just jiber-jaber? AND THE WORST ----- what if they laugh at me? I truly am not a paranoid person or one that has little or no self confidence. My writing, again, is personal and since I love to do it I want others to like it as well.
My sister reads my blogs before I post them and she is a great sounding board. She is also a much better speller than I am. This is probably the first time since high school that she has read much of what I have written. She encourages me to write so I can put emotions on paper and at times get rid of some anger or other feelings I need to let go of. I have often written letters that I never mailed or have written emails and never pushed the send button (a good thing I should say for a number of them which were written from anger and not level headedness). In the case of emails, I have finally gotten smart and do not type in the To… section for fear that I might accidently hit send.
Therapy??????????????????? Yes I guess it is therapy. I just remember that overwhelming feeling of the quicksand when I was struggling with the MS diagnosis. I can truly say that I hope others never have to feel that sinking feeling.
Thanks for letting me share my gauntlet of emotions with you. I may one day let you read Dear Dad, My Sisters Closet, Memories of Mom, or other snippets that are waiting to be read. This therapy is pretty cheap compared to other methods out there. (Not that I am against other methods)……
Joy
My sister reads my blogs before I post them and she is a great sounding board. She is also a much better speller than I am. This is probably the first time since high school that she has read much of what I have written. She encourages me to write so I can put emotions on paper and at times get rid of some anger or other feelings I need to let go of. I have often written letters that I never mailed or have written emails and never pushed the send button (a good thing I should say for a number of them which were written from anger and not level headedness). In the case of emails, I have finally gotten smart and do not type in the To… section for fear that I might accidently hit send.
Therapy??????????????????? Yes I guess it is therapy. I just remember that overwhelming feeling of the quicksand when I was struggling with the MS diagnosis. I can truly say that I hope others never have to feel that sinking feeling.
Thanks for letting me share my gauntlet of emotions with you. I may one day let you read Dear Dad, My Sisters Closet, Memories of Mom, or other snippets that are waiting to be read. This therapy is pretty cheap compared to other methods out there. (Not that I am against other methods)……
Joy
Sunday, March 8, 2009
I have a new Job.
Sorry that I have not written much lately but I got a job. I have not worked full time in 13 years or part-time in 6 years. Needless to say this has kicked me in the backside but for all the right reasons.
I happened to find the job by accident. It is at the gym where I have been working out at for the last two and a half years. They have all watched me struggle with my walking and then revamping my training routines once I was diagnosed with MS. I did not think that working again would be in my future since the majority of employers would view me as a liability. I go to work after I get the kids off to school in the morning and get off in enough time to work out and then get the kids picked up and taken to various ball practices. The best part, I firmly believe that continuing to stay fit will help prevent MS from having the ability to “do what it wants” with my body. Now I can share the benefits of working out with others.
The work is interesting and I like the new challenges that this job will give me. I will continually get to use my brain and work to negate any cognitive problems. Plus, I get to talk to adults instead of the kids or my dog. I was a little apprehensive on the first day, worrying if this job would be too much for me with my newfound MS. My boss treats me like everyone else and for that I am appreciative and will do everything not to disappoint him.
I am sleeping at night better than I was and I am hoping that my organizational skills with meal planning will become better. There is a sense of pride in being able to say that I got a job. Once again, I will say that MS is not going to stop me from having a normal life I am a MS THRIVER not just a MS Survivor. Now I can say that I am somewhat embarrassed that I had doubts on the first day of my new job. Now I need to make sure that the doubt does not get the better of me again.
I now enjoy my weekends even more as they have become more ‘sacred’ in a sense. Come see me at the gym, I am the one singing, “Nine to Five” and dancing behind the front desk.
Joy
I happened to find the job by accident. It is at the gym where I have been working out at for the last two and a half years. They have all watched me struggle with my walking and then revamping my training routines once I was diagnosed with MS. I did not think that working again would be in my future since the majority of employers would view me as a liability. I go to work after I get the kids off to school in the morning and get off in enough time to work out and then get the kids picked up and taken to various ball practices. The best part, I firmly believe that continuing to stay fit will help prevent MS from having the ability to “do what it wants” with my body. Now I can share the benefits of working out with others.
The work is interesting and I like the new challenges that this job will give me. I will continually get to use my brain and work to negate any cognitive problems. Plus, I get to talk to adults instead of the kids or my dog. I was a little apprehensive on the first day, worrying if this job would be too much for me with my newfound MS. My boss treats me like everyone else and for that I am appreciative and will do everything not to disappoint him.
I am sleeping at night better than I was and I am hoping that my organizational skills with meal planning will become better. There is a sense of pride in being able to say that I got a job. Once again, I will say that MS is not going to stop me from having a normal life I am a MS THRIVER not just a MS Survivor. Now I can say that I am somewhat embarrassed that I had doubts on the first day of my new job. Now I need to make sure that the doubt does not get the better of me again.
I now enjoy my weekends even more as they have become more ‘sacred’ in a sense. Come see me at the gym, I am the one singing, “Nine to Five” and dancing behind the front desk.
Joy
Friday, February 27, 2009
Would I really Do It Over???????????????
My oldest son who is about to turn 15 asked me a question the other day that led to an interesting conversation with him. (At this point, I am just happy whenever he actually wants to talk with his mom.) I was in the kitchen fixing dinner and he was sitting at the counter working on homework. He casually asked, “Mom, if you could do anything over again, would you?” I was in the middle of the preparations and quickly said, “If you mean go back and redo a mistake, No”.
He said, “You mean there is nothing you would go back and redo.” I finally stopped and gave him my full attention. I said, “Yes, there are several things I would go back and redo, your birth and your brother’s birth because it was the first time I ever held each of you. I would also redo either the day I married your dad or the last day I spent with my mother.” He said, “No, I mean something you would redo because you messed up.” I told him that there were plenty of things that I did wrong, people that I hurt and things I was ashamed of but, nothing I would do over. I continued to explain that yes I would redo some of those hurtful things if I was absolutely guaranteed that I would end up in the same place I was today. I am happy with my life and thankful for all that I have. If I went back and changed some things, then I would not have learned and grown into the person I am today. Admitting that I still made mistakes and learned new things everyday was also a point I tried to make with my son.
He then asked, “would you change your MS?” That was a hard one to answer. I tried explaining that I did not know what the plan was now or where I might end the journey with MS but I was sure there was a purpose for it. I expected him to say more but he seemed at easy with my explanation. I could have gone on and told him that when you get to be my age your priorities are different and there is a point in your life that what others, except those closest to you, think about you does not matter in the same way as it did in High School. You become at peace with your body, your mind, and your life.
I will try to remember and all of you can kick me in my backside if I forget, I DO NOT WANT A DO-OVER where Multiple Scleroses is concerned. I will look back on this one day and remember the start of this newest adventure.
Joy
He said, “You mean there is nothing you would go back and redo.” I finally stopped and gave him my full attention. I said, “Yes, there are several things I would go back and redo, your birth and your brother’s birth because it was the first time I ever held each of you. I would also redo either the day I married your dad or the last day I spent with my mother.” He said, “No, I mean something you would redo because you messed up.” I told him that there were plenty of things that I did wrong, people that I hurt and things I was ashamed of but, nothing I would do over. I continued to explain that yes I would redo some of those hurtful things if I was absolutely guaranteed that I would end up in the same place I was today. I am happy with my life and thankful for all that I have. If I went back and changed some things, then I would not have learned and grown into the person I am today. Admitting that I still made mistakes and learned new things everyday was also a point I tried to make with my son.
He then asked, “would you change your MS?” That was a hard one to answer. I tried explaining that I did not know what the plan was now or where I might end the journey with MS but I was sure there was a purpose for it. I expected him to say more but he seemed at easy with my explanation. I could have gone on and told him that when you get to be my age your priorities are different and there is a point in your life that what others, except those closest to you, think about you does not matter in the same way as it did in High School. You become at peace with your body, your mind, and your life.
I will try to remember and all of you can kick me in my backside if I forget, I DO NOT WANT A DO-OVER where Multiple Scleroses is concerned. I will look back on this one day and remember the start of this newest adventure.
Joy
Monday, February 23, 2009
Things I miss......or do I?
I was reading some post on a web site about Multiple Sclerosis and one entry caught my eye. A younger woman said that she was having trouble walking but one day she hoped to be able to wear high heels again. I laughed to myself as I thought about my recent closet cleaning. I gave all my heels to a friend at the gym who wore the same size. I carefully took each pair of shoes out of their box and tried them on and admired them in the mirror. In order to figure out if I truly needed to depart with them I did a walking test for each pair. If I could not make it across my bedroom without kicking the shoes off, falling, tripping, or any combination of all of the above, then they went in the donate bag. Not only did high heels go in this bag but a lot of sandals and mules and any type of shoe that I could not keep on my feet with my new walking style.
Those of you who know me well know that this was a major sacrifice in my mind AT THE TIME. I have always taken care of my shoes. They are in their original boxes and stacked in the closet by seasons, colors and dress or casual. I mean really, how many people do you know who can write a blog article about SHOES? I guess my priorities have changed, safety and stability are definitely ranked above style. I went to a funeral several weeks ago, so I chose the smallest black heel that I could find. About a ¾ inch heel seemed safe to me at the time. I was never so happy to get back to the safety of my car and take the shoes off. I really should have used the cane that day.
Ok so now to the point, yes there really was one buried beneath all my shoes! I started thinking about all the things that have changed because of my MS and did I really miss them.
· I miss playing basketball, but…………….. The last time I really played I feel down in the driveway, a fall that I am sure rated a 9 on the style scale. I really needed to retire because both of my boys could beat me.
· I miss being able to walk up or down the bleachers at sporting events to find a seat, but………………I can remember running the bleachers back in high school and I have probably been up and down more than my share so I will be satisfied to sit at whatever level is the easiest for me to access.
· I miss dancing and wanted to take a ballroom class, but…………………I would have had to drag my husband kicking and screaming so now I will just tell him that since he got out of that, he has to hold my hand during a “chick “flick.
· I miss walking the neighborhood and getting out and seeing everyone, but…………………..I am not wearing out my tennis shoes as fast now.
· I miss being able to pick up my nephew or hold a baby and walk. I have to sit if I am holding someone so I will not fall, but…………………I have wonderful memories of the many hours walking with my children while they were in my arms.
· I miss being able to walk out of the surf at the beach, but………………..I like to scuba dive but I never liked to really swim in the water because of what I could not see.
Most of all, I miss the time when my family did not have to worry about me. This I really do miss and would love to change. My husband is upset when I fall or trip because he can’t do anything about my MS. I also miss my children not being embarrassed about the way I walk or when I use the cane; the kids never say anything to me but it bothers them that people stare.
I would not change anything in my life, (that is a whole other story) I am just thankful to be here and still able to express my feelings.
Thank you for letting me share.
Joy
Those of you who know me well know that this was a major sacrifice in my mind AT THE TIME. I have always taken care of my shoes. They are in their original boxes and stacked in the closet by seasons, colors and dress or casual. I mean really, how many people do you know who can write a blog article about SHOES? I guess my priorities have changed, safety and stability are definitely ranked above style. I went to a funeral several weeks ago, so I chose the smallest black heel that I could find. About a ¾ inch heel seemed safe to me at the time. I was never so happy to get back to the safety of my car and take the shoes off. I really should have used the cane that day.
Ok so now to the point, yes there really was one buried beneath all my shoes! I started thinking about all the things that have changed because of my MS and did I really miss them.
· I miss playing basketball, but…………….. The last time I really played I feel down in the driveway, a fall that I am sure rated a 9 on the style scale. I really needed to retire because both of my boys could beat me.
· I miss being able to walk up or down the bleachers at sporting events to find a seat, but………………I can remember running the bleachers back in high school and I have probably been up and down more than my share so I will be satisfied to sit at whatever level is the easiest for me to access.
· I miss dancing and wanted to take a ballroom class, but…………………I would have had to drag my husband kicking and screaming so now I will just tell him that since he got out of that, he has to hold my hand during a “chick “flick.
· I miss walking the neighborhood and getting out and seeing everyone, but…………………..I am not wearing out my tennis shoes as fast now.
· I miss being able to pick up my nephew or hold a baby and walk. I have to sit if I am holding someone so I will not fall, but…………………I have wonderful memories of the many hours walking with my children while they were in my arms.
· I miss being able to walk out of the surf at the beach, but………………..I like to scuba dive but I never liked to really swim in the water because of what I could not see.
Most of all, I miss the time when my family did not have to worry about me. This I really do miss and would love to change. My husband is upset when I fall or trip because he can’t do anything about my MS. I also miss my children not being embarrassed about the way I walk or when I use the cane; the kids never say anything to me but it bothers them that people stare.
I would not change anything in my life, (that is a whole other story) I am just thankful to be here and still able to express my feelings.
Thank you for letting me share.
Joy
Sunday, February 22, 2009
One of my favorite quotes.
'Stop telling God how big your storm is. Instead, tell the storm how big your God is!'
Author: unknown
Author: unknown
Thursday, February 19, 2009
The People We Meet........
I was waiting in the drive through line at Chick-fil-A today and watched an unusual event. A gentleman was driving his automatic wheelchair down the ramp from his white van. His wife was standing close by watching. He started getting very close to the edge of the ramp and I thought to myself, “He is going to fall off that ramp”. Before I even finished the thought he did just that and he and the chair both fell on their sides in the parking lot. I put my car in park pretty fast and heard the engine drop (my husband will not be happy about this) and attempted to run towards him which was more like a shuffle. Too bad the parking lot didn’t need to be swept at the time (see, I was having a bad MS day as I like to call it). He was very calm and his wife ran towards Chick-fil-A for help. She did not even reach the doors before people were running from everywhere to help. Some strong younger men set the chair upright and then helped pick him up and got him settled in his seat base. Both he and his wife were very blasé about it but thankful and appreciative of all the helpers. She said she thought they should go home and he said “NO, I have not eaten here in over a week and I am here now.” I told him he should ask for dessert today and I bet she would let him have it. They continued into the restaurant.
I parked my car and decided I would go in to get my order. I grabbed my cane to make sure I did not end up in the parking lot as well. I was in line two positions behind the wife. She saw my cane and said that I probably should not have tried to help if I was hurt too. I said, “I am not hurt I have multiple sclerosis and have problems with my balance. It is usually me that people are picking up so I was glad to help someone else.” She then said, “My husband Oliver has MS.” I was trying to decide if I was a little upset because that might be my fate or if I was going to find a fellow comrade in the fight against MS. After I got my to-go bag I went to their table and introduced myself to “Mr. Oliver”. He was not as talkative as his wife but he was also enjoying his sandwich.
His wife told me about a facility that she takes her husband to that offers clinical research and seminars. There is a MS support group in a neighboring town that she found very helpful. She asked for my email address and promised to send some information and links to me. She did tell me one bit of information that hit a little close to home. She said, “If we had it to do over again, I would have made him use the cane, then walker, and wheelchair earlier. He used a lot of his energy walking and we could have done other things if he had more energy.” I personally have sometimes been reluctant to use my cane because people stare when I use it; they also stare when I fall so I guess I could save my body a few bruises from falls.
I got home later and thought about everything that happened and remembered that every patient reacts differently to Multiple Sclerosis. Oliver was at least 25-30 years older than I am. Medicine and research has come a long way. My MS progression seems to be at a slower pace so I can take my time getting my “turbo” wheelchair. If I find myself in a wheelchair, I believe I will follow in Mr. Oliver’s tracks and go get a sandwich at Chick-fil-A meal every week and I will most definitely get a milkshake as well.
To all the “Oliver’s” out there, and the “Oliver’s” to come, I will meet you at Chick-fil-A every week.
Joy
I parked my car and decided I would go in to get my order. I grabbed my cane to make sure I did not end up in the parking lot as well. I was in line two positions behind the wife. She saw my cane and said that I probably should not have tried to help if I was hurt too. I said, “I am not hurt I have multiple sclerosis and have problems with my balance. It is usually me that people are picking up so I was glad to help someone else.” She then said, “My husband Oliver has MS.” I was trying to decide if I was a little upset because that might be my fate or if I was going to find a fellow comrade in the fight against MS. After I got my to-go bag I went to their table and introduced myself to “Mr. Oliver”. He was not as talkative as his wife but he was also enjoying his sandwich.
His wife told me about a facility that she takes her husband to that offers clinical research and seminars. There is a MS support group in a neighboring town that she found very helpful. She asked for my email address and promised to send some information and links to me. She did tell me one bit of information that hit a little close to home. She said, “If we had it to do over again, I would have made him use the cane, then walker, and wheelchair earlier. He used a lot of his energy walking and we could have done other things if he had more energy.” I personally have sometimes been reluctant to use my cane because people stare when I use it; they also stare when I fall so I guess I could save my body a few bruises from falls.
I got home later and thought about everything that happened and remembered that every patient reacts differently to Multiple Sclerosis. Oliver was at least 25-30 years older than I am. Medicine and research has come a long way. My MS progression seems to be at a slower pace so I can take my time getting my “turbo” wheelchair. If I find myself in a wheelchair, I believe I will follow in Mr. Oliver’s tracks and go get a sandwich at Chick-fil-A meal every week and I will most definitely get a milkshake as well.
To all the “Oliver’s” out there, and the “Oliver’s” to come, I will meet you at Chick-fil-A every week.
Joy
Wednesday, February 18, 2009
I am blessed
"The hardest arithmetic to master is that which enables us to count our blessings."-Eric Hoffer
I receive a daily “quote of the day” which is written above. I read it and then went to the gym for my workout. I had a nice conversation with a lady whom I have recently gotten to know. She has NO hair on her entire body. She has not had cancer but has alopesia universalis (loss of all body hair). She had a smile on her face and a baseball cap on her head. Her friends say she used to try and wear wigs but now will wear a hat or scarf. She is happy and never self conscious.
While leaving the gym I ran into a couple that used to work out in the mornings about the same time. I had not seen them in a long time. The husband fell off a scaffolding and broke his back. Needless to say they had just started a new work out regime. He said he would get on a bike or the tread mill but would not be able to lift free weights again. His wife had been staying home with him during his recovery to help with daily functions he could not master on his own. He could have just decided to stay at home on the couch for years to come and no one would have thought anything about it; he choose to come to the gym.
As I got in the car to go home I started thinking about how blessed I truly am. I can still walk and yes I fall often but with much style and grace. My children are healthy enough to give me headaches like most children often give to their parents. I have a very loving husband who takes good care of me and I have a roof to sleep under at night that does not leak. I have MS and it does pose some obstacles some times, but I am still here and thinking that maybe I was given this new challenge in life to make me slow down and look at my beautiful garden.
Joy
Monday, February 16, 2009
Positivity
For 2009 my resolution was to surround myself with positivity. I will look for the good in having MS and will definitely try and approach it with a positive attitude. I can lean towards the negative on my own so I will remove myself from negative influences.
When I was waiting during the two months between when I was first sure myself that I had Multiple Sclerosis and delivery of the “official” diagnosis with test results from the doctor, I received some of the best advice from my trainer. I had been working with Allie for 6 months as we tried different approaches to my walking problems and leg fatigue. I came in the gym one day and we sat in the locker room while I cried and told her I did not know if I had MS or not. She asked me, “why I was upset ?” I told her, “I don’t know what I am going to do or how I will continue to work out.”
In a matter of fact voice she said, “if you have made it this long with MS then knowing will help you know what you are fighting and you can get the medication you need. It will be easier if you know what you are dealing with. You have struggled to do certain things so a name for it will not make the symptoms worse.”
In a very short amount of time and very few words, she summed it all up. Why was I scarred to know for sure what was happening to my body? Wouldn’t it be better to know and move forward armed with an arsenal of information?
By the time I began my treatments at home and started physical therapy for Multiple Sclerosis I was at peace with the diagnosis. I am sure there will be some bumps in the road but I hope I will not deviate too far from the right direction for me.
Joy
When I was waiting during the two months between when I was first sure myself that I had Multiple Sclerosis and delivery of the “official” diagnosis with test results from the doctor, I received some of the best advice from my trainer. I had been working with Allie for 6 months as we tried different approaches to my walking problems and leg fatigue. I came in the gym one day and we sat in the locker room while I cried and told her I did not know if I had MS or not. She asked me, “why I was upset ?” I told her, “I don’t know what I am going to do or how I will continue to work out.”
In a matter of fact voice she said, “if you have made it this long with MS then knowing will help you know what you are fighting and you can get the medication you need. It will be easier if you know what you are dealing with. You have struggled to do certain things so a name for it will not make the symptoms worse.”
In a very short amount of time and very few words, she summed it all up. Why was I scarred to know for sure what was happening to my body? Wouldn’t it be better to know and move forward armed with an arsenal of information?
By the time I began my treatments at home and started physical therapy for Multiple Sclerosis I was at peace with the diagnosis. I am sure there will be some bumps in the road but I hope I will not deviate too far from the right direction for me.
Joy
Sunday, February 15, 2009
Multiple Sclerosis felt like Quicksand
How I got out of Quicksand!
Have you ever felt like you are in Quicksand? No matter what you try, you keep getting deeper and deeper and you have more trouble moving and you start to struggle breathing. I was sinking as I tried different training to improve my leg strength and stop my walking problems.
I found out I had Multiple Sclerosis after 20 years of different symptoms. I was finally diagnosed thanks to a caring and dedicated physical therapist I will call Susan. First off, I am a unique patient who has had multiple injuries over the years which led to my habit of always playing off my symptoms as some other part of my body acting up. However the time came that I could not over compensate for it any more.
Quick history: At the age of 15 I had my first ACL knee surgery. Yes, my average basketball career was basically over. Four years later I returned to the Orthopedic Doctor because the opposite side of my body was numb. He sent me to a neurologist who for some unknown reason insisted on 2 different spinal taps in six months. THIS IS ONE TEST THEY WILL NEVER DO ON ME AGAIN! An MRI, which was then called a NMRI because it was so new showed nothing. MRI and spinal taps with no evidence or traces of anything significant led the doctor to say that he was calling it one time MS. I was told to call him if I had any further trouble.
After graduating from college with a degree in Chemistry, I was well on my way to make it in the Sales World when I had a bad case of optic neuritis. The Optic Neurologist that I was referred to was very rude to my Mother when she asked if the eye problem could have anything to do with my one time MS. We were told to worry about getting my eyesight back and nothing was ever said again about MS. My sight did return completely with no permanent damage.
At the young age of 26 I had spinal fusion for degenerative disk in my lower right spine. Everything was fine after the surgery. I became pregnant with my first child at 29 and had no feeling on my right side and my hand for the last part of the pregnancy. My OB-GYN thought it was probably my weight gain and the pressure of the baby on my spine so I never thought about it again.
Another child later and more ACL surgery (2 to be exact) led me to the mindset that every time I had numbness, or extreme dragging of my legs it was because I was overcompensating for a "STILL" bum knee. Several visits in 2008 to who is now my current orthopedic doctor resulted in a MRI of my lower back and many x-rays. The result of this imaging led him to say nothing was wrong with my back or my left knee. He stated that I had hip bursitis on my right side and he thought physical therapy would help.
Therapy did help a great deal. We started off making the hip flexor stronger and then moved to quad flexibility. The whole time this is going on, I am continuing to work out with cardio and weight training so my problem was not overall strength but specific problems with my hip flexor muscles and coordination. Months of working on these things led to a routine of working on “Fast Twitch” muscle reflexes, balance, and gate problems. I was going along fine and really felt like I was coming out of the “funk” I had gotten in.
Six months after starting physical therapy, I went to my session one day and I was having a hard time walking. My hip was making me drag my right foot or swinging the foot out to prevent it from tripping me. Yes...Tripping on my own feet. Susan asked what was wrong and I told her I was having a real problem with my balance, coordination and my foot was dragging because I could not really feel it or my right hand for that matter. She decided to do some test on me. A few test later including closing my eyes and almost falling led her to say, “I am going to call your doctor, you need to see a neurologist.”
I went home and told my husband what she said and he asked if I thought it had anything to do with the doctor who thought I had MS in College. I just laughed and said NO! Then I called my sister and she asked the same thing and then I said I did not think so. One hour later after looking on the computer and reading as much as I could in that time, I knew I had Multiple Sclerosis. I started putting everything together that I had experienced over the years. I had moved 6 times since I had seen the first neurologist and had seen a few doctors along the way. There was no one person who truly had all the information except for me and my memory.
I met with a very nice neurologist whom I liked from the minute he walked in the room. After my initial appointment with him he asked if I knew what I had and I said, “yes, and you also know that I have Multiple Sclerosis.” I knew it in my heart and he said we needed the test to confirm what we both knew. He said we would get an MRI of my head and spin and start treatment as soon as the results came back. I left his office with an appointment for an MRI, a follow-up appointment with him and lots of information from various drug companies who offered treatments to lengthen the time in between exacerbations.
Now here I am today and I am no longer sinking in that quick sand. I feel better than I have in years and I know what I am fighting. My journey will be long and it will be difficult at times but this will not beat me and I am going to fight this with everything I have.
I wish there was an easier way to keep others from ever feeling the pressure and hopelessness of being in Quicksand.
Joy A.
Have you ever felt like you are in Quicksand? No matter what you try, you keep getting deeper and deeper and you have more trouble moving and you start to struggle breathing. I was sinking as I tried different training to improve my leg strength and stop my walking problems.
I found out I had Multiple Sclerosis after 20 years of different symptoms. I was finally diagnosed thanks to a caring and dedicated physical therapist I will call Susan. First off, I am a unique patient who has had multiple injuries over the years which led to my habit of always playing off my symptoms as some other part of my body acting up. However the time came that I could not over compensate for it any more.
Quick history: At the age of 15 I had my first ACL knee surgery. Yes, my average basketball career was basically over. Four years later I returned to the Orthopedic Doctor because the opposite side of my body was numb. He sent me to a neurologist who for some unknown reason insisted on 2 different spinal taps in six months. THIS IS ONE TEST THEY WILL NEVER DO ON ME AGAIN! An MRI, which was then called a NMRI because it was so new showed nothing. MRI and spinal taps with no evidence or traces of anything significant led the doctor to say that he was calling it one time MS. I was told to call him if I had any further trouble.
After graduating from college with a degree in Chemistry, I was well on my way to make it in the Sales World when I had a bad case of optic neuritis. The Optic Neurologist that I was referred to was very rude to my Mother when she asked if the eye problem could have anything to do with my one time MS. We were told to worry about getting my eyesight back and nothing was ever said again about MS. My sight did return completely with no permanent damage.
At the young age of 26 I had spinal fusion for degenerative disk in my lower right spine. Everything was fine after the surgery. I became pregnant with my first child at 29 and had no feeling on my right side and my hand for the last part of the pregnancy. My OB-GYN thought it was probably my weight gain and the pressure of the baby on my spine so I never thought about it again.
Another child later and more ACL surgery (2 to be exact) led me to the mindset that every time I had numbness, or extreme dragging of my legs it was because I was overcompensating for a "STILL" bum knee. Several visits in 2008 to who is now my current orthopedic doctor resulted in a MRI of my lower back and many x-rays. The result of this imaging led him to say nothing was wrong with my back or my left knee. He stated that I had hip bursitis on my right side and he thought physical therapy would help.
Therapy did help a great deal. We started off making the hip flexor stronger and then moved to quad flexibility. The whole time this is going on, I am continuing to work out with cardio and weight training so my problem was not overall strength but specific problems with my hip flexor muscles and coordination. Months of working on these things led to a routine of working on “Fast Twitch” muscle reflexes, balance, and gate problems. I was going along fine and really felt like I was coming out of the “funk” I had gotten in.
Six months after starting physical therapy, I went to my session one day and I was having a hard time walking. My hip was making me drag my right foot or swinging the foot out to prevent it from tripping me. Yes...Tripping on my own feet. Susan asked what was wrong and I told her I was having a real problem with my balance, coordination and my foot was dragging because I could not really feel it or my right hand for that matter. She decided to do some test on me. A few test later including closing my eyes and almost falling led her to say, “I am going to call your doctor, you need to see a neurologist.”
I went home and told my husband what she said and he asked if I thought it had anything to do with the doctor who thought I had MS in College. I just laughed and said NO! Then I called my sister and she asked the same thing and then I said I did not think so. One hour later after looking on the computer and reading as much as I could in that time, I knew I had Multiple Sclerosis. I started putting everything together that I had experienced over the years. I had moved 6 times since I had seen the first neurologist and had seen a few doctors along the way. There was no one person who truly had all the information except for me and my memory.
I met with a very nice neurologist whom I liked from the minute he walked in the room. After my initial appointment with him he asked if I knew what I had and I said, “yes, and you also know that I have Multiple Sclerosis.” I knew it in my heart and he said we needed the test to confirm what we both knew. He said we would get an MRI of my head and spin and start treatment as soon as the results came back. I left his office with an appointment for an MRI, a follow-up appointment with him and lots of information from various drug companies who offered treatments to lengthen the time in between exacerbations.
Now here I am today and I am no longer sinking in that quick sand. I feel better than I have in years and I know what I am fighting. My journey will be long and it will be difficult at times but this will not beat me and I am going to fight this with everything I have.
I wish there was an easier way to keep others from ever feeling the pressure and hopelessness of being in Quicksand.
Joy A.
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