Independence

I am one to think that chivalry is not dead.  I love it when my husband opens doors for me, holds my hand and lets me walk in places first.  I think it is great when people open doors for the elderly or help them out in any way they can.  That is why I love my job so much.  Even though I don't have the actual interaction with our elderly and disabled population, I still feel that I play a role in helping them out.

In one of the classes that we teach at my job to the new drivers is to communicate with people.  Don't just assume that they need your help and grab their arm or take their wheel chair and start moving them.  It is very hand to give this independence up and often times this is all the person has left in life.  You need to ask the person what can I help you with, or even be more specific, "Would you like to use my arm while we walk?"

I want to keep my independence for as long as I can. Even if things get harder for me, if I can still do them then I will.  I know that people will be there for me if I need them to, but I want this to me on my time and at my request.  I pray that it wont ever come to this, but I have to be realistic.  There will be times in my life where I will need to ask for help.

There is a difference between chivalry and then overstepping bounds.  I think communication is the key here.
 

A big fear of mine.

I hate being alone, especially in the evening.  If my husband is ever going to be away for the night I pack up myself and the kids and go back to my mom’s house to spend the night.  I know this sounds silly, but I also still run up the stairs (a little slower now, but none the less) from the basement without looking behind me because I know there is someone following me.  There isn’t, I know that, but it is just something that I did as a kid and I still do to this day.

You hear of so many people whose spouse leave them when they are diagnosed with an illness that is debilitating.  It is so disheartening.  You make those vows to each other when you get married, “In sickness and in health, in good times and in bad.”  I can’t imagine how hard it is to see the person that you love so much go through the pain that is involved in whatever disease they are battling.  However, I do know what it is like being on the other side.  This is when your partner needs you the most.

I am so grateful for my husband and he has always been there for me.  I know in the future I might not be able to do things for myself and I will need the help of someone with basic daily needs.  We have had this conversation and he has assured me that he will be there for me.  I believe he will always stand by my side and be there with me through thick and thin.  My prayer is that others with MS or any other debilitating disease will be as lucky as I am and find their companion that will be with them,

“In sickness and in health, in good times and in bad.”     

December 8th, 2007

Unfortunate side effect

Over the weekend I felt especially fatigued and tired.  I have also been pain since Thursday so I went into the doctors today to see what was going on.  She ran tests and it turns out I have a bladder infection.  She put me on antibiotics and sent me on my way.  I shared this with a friend and she told me that bladder infections are very common in people that have MS.  I had no idea.  I went home and started looking it up on the computer. 

That was exactly what I found. 

Bladder dysfunction in MS happens when nerve signals to the bladder and urinary sphincter (the muscles surrounding the opening to the bladder) are blocked or delayed because of lesions on the spinal cord. The dysfunction can be for two reasons: the bladder is spastic, so it isn’t holding the urine, or the bladder isn’t emptying all the way, because the sphincter is spastic (contracting when it is supposed to be relaxing to let out the urine, or vice versa).  http://ms.about.com/od/signssymptoms/a/ms_bladder.htm

More research had me finding that this can leave a person feeling tired, exhausted or feel like their brain is in a fog.  Exactly how I was feeling this weekend.  It also said that this can lead to other flare-ups in people with MS, but this does not happen to the majority of people.  Yeah!! 

MS is a disease that I learn more and more about everyday.  I will just keep rolling with the punches though!   



Weekend Wonders. . .

 

When I was in college I did a long paper on invisible disabilities.  Who would ever think that I would have one of the most common diseases that cause an array of symptoms or flare ups that the person next to me cannot see.  When I share with people for the first time that I have MS the most common thing they say to me is, "WOW!  You look great though." 
I wonder what MS looks like if I look great to others.  Is it because I am not in a wheelchair yet or because I can still speak and see clearly. 
I wonder if I look as great on the inside some days.  When it comes to the end of my day I can feel the separate departments in my body shutting down one by one.  If I have a busy day, especially if that includes fresh air, it happens to me sooner in the day.  It is so hard when you have little ones that just want to be outside all day long.  I am a busy body and I like to do as much as I can on the weekends.  I don't like to sit around and relax because then it feels like a waste of a weekend. 
However, I can feel this catching up with me when Sunday rolls around and it feels like a chore to get dinner on the table in the evening. 



For now, and as long as I can, I will take the compliment,  "WOW! You look great though", and smile because tomorrow is a new day.

P.S. The other day I was giving myself my injection in my stomach and Ayden was watching me, He asked me, "Mom, does that hurt?" I was honest with him and I told him that yes it did sting a little. I let him hold the clippers that I clip the needle off with when I am done so he feels like he is a "Helper" and he looked up at me and said, "Mom, when I get bigger I am going to get to do that too!" He always wants to do things that his dad and I get to do because we are 'bigger". I smiled at him and told him, "I really hope not buddy. My hope is that when you get bigger I wont have to do these shots anymore either."

Seven Stages

There are seven stages of grief that a person goes through when they lose a loved one.

1.   Shock and Denial

2.   Pain and Guilt

3.   Anger and Bargaining

4.   Depression, Reflection, Loneliness

5.   Upward Turn

6.   Reconstruction and Working Through

7.   Acceptance and Hope

 

When I was diagnosed with Multiple Sclerosis I found myself going through these same stages. 

My symptoms began in December of 2008 with an extremely itchy face.  It would itch so bad that it began to turn red and burn from me scratching it so much.  I didn’t wear make up for a few days to try and soothe my face from the irritation, but nothing was helping.  I went through all my products at home trying to see if it was some type of allergic reaction, but I could find anything that seemed to cure this irritation.  I thought of going to the doctor, but how would that look if I went in and said my face is itching?  I thought they would look at me like I was crazy so I just dealt with it.  I would start the day out and try to trick my brain into thinking that my face didn’t itch.  As long as I didn’t start rubbing it, it seemed like it didn’t itch that badly unless I thought about it.   

I was wrapping up work one day in January 2009 and felt a headache coming on.  I took some ibuprofen and got in my car to drive home.  I got onto the freeway and BAMB!  Something popped in my head and I had an intense, throbbing, stabbing pain on the left side of my temple.  I squinted in pain, but continued driving thinking to myself this will go away in a minute, I just took some medicine.  It didn’t go away, it got worse to the point where I couldn’t keep my eyes open so I pulled over onto the shoulder, sobbing, rubbing the left side of my head trying to make it go away.  Nothing was helping.  I called my husband and told him what was going on and that I couldn’t drive and I needed his help.  Cars were speeding past me at 60 mph and it felt like an eternity before he got there.  I called my sister who has suffered from cluster headaches because the pain that I was feeling was exactly how she would describe her headaches.  She talked to me and tried to calm me down until I saw Reuben pull up behind me on the shoulder.

I continued to rub the left side of my head while he sat in the car with me calming me down.  We sat there for about 20 minutes and the pain finally subsided, but the left side of my face was numb from, what I thought, was me rubbing it so hard trying to make the pain go away.  We determined it was OK for me to drive home, but Reuben would stay close behind me so if something should happen he would be right there.  We made it home safely and our night went on as if everything was normal.

I awoke the next morning with the left side of my face completely numb.  WOW!  I really must have been rubbing it hard for this numbness to continue and still be there when I woke up the next day.  I got to work and told some co-workers what had happened and they all suggested I call the nurse line and ask them for advice.  I did just that and to my surprise the woman told me that I needed to have someone drive me directly into the emergency room because of the ordeal on the way home the previous day as well as the numbness in my face.  I didn’t think it was that big of a deal so I got all my work done for the day and they covered the 2^nd half of Reuben’s day.  We drove home in our individual vehicles and then Reuben took me up to the hospital to get checked out. 

I was checked in and they started running a bunch of tests on me.  It was getting late and we had an 11 month old son who was at daycare.  We called our daycare provider and told her what was going on because it was getting later in the day and she would be closing soon.  She said that she would be able to keep Ayden for the evening.  It was such a relief for her to take care of him for us because at this point I was getting scared and needed my husband there with me. 

It was later in the evening and the doctor came in and told me it could be one of two things. . . I could have Lyme Disease or I could have Multiple Sclerosis.  I thought to myself, Euww!  I was bit by a tick, I have Lyme Disease, give me an antibiotic and I will be on my way.  I never once thought I was going to have a chronic disease that I was going to have to deal with for the rest of my life.  He said it wasn’t that easy.  I had to go and see a neurologist and they would give me an official diagnosis from there.  I can remember so vividly Reuben asking the doctor what he thought it was if he had to make the diagnosis by himself right now.  The doctor said, “I believe it is Multiple Sclerosis.”  Yeah right was the thought in my head.  You have no idea what you are talking about.  I will go to the neurologist and he will tell me that you are wrong!      Shock and Denial

A few days later I was able to get in and see a neurologist who read my initial MRI from the emergency room visit and said he wanted to run some more blood work, do a more extensive MRI and a spinal tap.  Whoa!  This sounded a little extensive to be running all of these tests when I am sure I just have Lyme Disease!  It sounded outrageous, but you do what the doctor tells you to do.   Shock and Denial

There were some complications with the spinal tap, which hurt like hell, and I ended up spending the night in the hospital for observation.  I went into the neurologist the following week so that he could prescribe me the antibiotic that was going to take care of whatever was going on in my body, but had the shock of my life waiting for me.  “I am sorry, you have Multiple Sclerosis.”  What, me, Why? 

At that moment I began thinking of all the bad things that I had put my body through in my twenties.  Too much drinking, too much partying, too little sleep. . . What have I done to myself?  Pain and Guilt

Why me?  There are so many other people in this world that this could have happened to.  My guilt quickly turned into anger and I was pissed off at the world.  I never hurt anyone, I was just having fun and I just got my life turned around.  I was just promoted to being Human Resource Manager at work and I can’t let them know that I have this disease.  I have a wonderful husband and we just had our precious baby boy who was now almost one year old.  Anger and Bargaining

My life is over.  I am going to be in a wheelchair.  I am going to have to wear diapers and my husband is going to leave me.  What am I going to do?  I am going to loose my sight and become blind.  I am going to be in constant pain and I am going to need help in everything that I do, dependent on someone every day for the rest of my life.   Depression, Reflection, Loneliness

My neurologist suggested that I get on a preventative medication as soon as possible.  We went with Copaxone which is a daily injection that needs to be done around the same time every day for the rest of my life.  I was less than thrilled about sticking myself with a needle every day, but I was going to do whatever it took to stay healthy.  The nurse came out to out house and taught Reuben and I both how to do the shots on a small plastic dome that was supposed to feel like skin.  Then she told me that I needed to do it to myself.  My first shot was in my stomach.  It took me five minutes holding the syringe in my right hand, shaking, before I could squeeze the skin and stab the needle in.  It stung when the needle went in and then I depressed the syringe and felt the medicine as it went into my body.  This stung even more.  Finally, I took the needle out and I was done; at least for today.  I knew I was going to have to do this for the rest of my life, but it wasn’t terrible.  I could do this.  The Upward Turn

My husband and I decided we were going to have another child after we had Ayden and then when I was diagnosed with MS we weren’t sure if that was going to be possible.  I didn’t want to pass this along to my baby and make them go through this so we talked to my neurologist about it.  To our surprise he told us YES!  Get pregnant, stay pregnant!  He informed us that MS is not hereditary and when a woman gets pregnant and has MS all of her symptoms go away.  He told me that I would have to go off my Copaxone when we started trying to have a baby and the chances of having a flare up are high, but once I get pregnant then it holds MS at bay.  We were ecstatic to hear this news and I stopped the Copaxone treatment in August of 2009.  Reconstruction and Working Through 

In October 2009 we conceived our baby girl, Makayla.  Throughout my pregnancy I felt great and it was also nice not having to do those injections every evening.  I brought the Copaxone to the hospital with me when I went into labor because I knew that I had to go back on it right away.  Chances of a flare up after giving birth are high and I couldn’t risk that.  The good thing was I could still breast feed and be on this treatment.    Reconstruction and Working Through     

Now that our family is complete I wanted to include everyone in my journey with MS.  I started a walk team to raise money and awareness for Multiple Sclerosis and named it “Susie’s Stars”.  The first walk we participated in was in May of 2011.  Our team consisted of 18 people and we raised $1,296.50.  I made this team up just a few months before the walk and didn’t have a lot of time to do fundraising, but I think we did pretty well for our first year.  After the walk was completed my family and I decided to make this an annual tradition and do the MS walk every year.  This year we are a lot more prepared and are on track to raise over $3,000 to help find a cure for this terrible disease.  Acceptance and Hope

I have Multiple Sclerosis.  This is a fact that will never change until someone is able to find a cure.  I have gone through these seven stages with the help of God, my amazing family and awesome friends.  Multiple Sclerosis does not have me. 

Day by Day

There are some days when I forget that I even have MS until it is time for my injection.  I am thankful for these days.  There are other days where I am not so lucky.  You never know what the day will hold for you when you have this disease.  The most you can do is go with the flow and start each day thinking it will be a great day.

Over the weekend I went to the flower show with my daughter, my mom and my niece.  We were getting ready to leave so we got Makayla in her stroller and headed for the elevator.  To my surprise, she HATES elevators.  We only had two floor to go up so I leaned down and hugged her to try and sooth her.  You can feel the elevator go up and then down suddenly and you know that you have arrived at a floor where someone wants to get off.  It threw me off balance for a second, but I was able to quickly recover.  We got off of the elevator and I had to put her sweater on so we could get to the car inside the parking garage.  I bent over so that I could zip up her sweater and I had that feeling like I was on the elevator again.  All of a sudden my feet felt like I was in a jump house and I was loosing my balance fast.  I stood back up fully and tried to compose myself.  I thought, that was weird, but knew I had to get her sweater zipped.  I leaned back down to try and complete this task and there was that squishy floor again, oh no I am going to fall!  I stood up and was so thankful for the wall that was next to me.  I grabbed it so that I could again gain composure.  Finally, I swallowed my pride and asked my niece to zip her sweater for me.  My mom asked me what was wrong and I couldn't explain it.  She asked if I was dizzy, but I wasn't dizzy.  It felt as if the floor was being shaken underneath me.  The car ride home I had a slight headache and had to look forward or I felt like I was going to get sick.  Once we got home I felt fine for the rest of the day.

Today it is Easter and we are celebrating Jesus rising from the dead.  We had a fantastic dinner planned at my moms house and we had a few of our family members there.  I was clearing off the table so that we could set the table for this great meal.  I grabbed a ceramic Easter bunny off the table and took one step to put it in the other room.  I had no idea it was even slipping out of my hand until I hard it crash to the floor in 20 pieces!  DAMN IT!!  I rub my hand within itself and I can see that it is numb.  Sometimes I don't realize that they have gone numb because it happens so fast.  I can have complete and total feeling in my hands one minute and the next they are numb.  I rubbed them for a few minutes and the feeling comes back in them.

I take things day by day, minute by minute, second by second. . . .  In life you never know what the future will hold for you.  In MS you never know what kind of a day you are going to have.  I am trying so hard to not get down on myself when my body fails me, but it can be so damn frustrating.  For now I will take things day by day. 

Stairs

I’m not sure when this happened, but stairs are starting to become one of my biggest hurdle’s.  I used to fly down the stairs, but now I have to touch each one deliberately and catch my balance as I make my decent.  I am so thankful for railings.  Going up the stairs don’t seem to be a problem for me.

We live in a split level which means stairs all day long.  My workplace is also 2 levels with my office on the 2nd floor.  They do have an elevator, but I don’t want to become dependent on that.  Stairs are great exercise and you all know the saying, “If you don’t use it, you lose it”.

When I wake up in the morning my right leg is so weak, I can’t put my full weight on it. During the work week, I hobble to the bathroom and then to get my first cup of coffee.  After 10 minutes or so then I feel like it is strong enough to put weight on it.  When the weekend rolls around, Ayden is usually up bright and early and we let him watch cartoons so we can have a little extra time sleeping.  Doing those 2 flights of stairs at home with my right leg not cooperating is very difficult.  

As the day goes on, fatigue sets in and that right leg loses some of it strength again.  I feel like I am going to fall if I don’t hold on.  I refuse to succumb to using an elevator.  Having MS is all about adapting to this new environment and managing all the changes that are occurring in this body of mine.  Railings are my new best friend!