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

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

One of my favorite quotes.

'Stop telling God how big your storm is. Instead, tell the storm how big your God is!'

Author: unknown

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 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

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

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.