Praying

I have a 45 minute drive back and forth to work every day, on a good day with no traffic.  Some days it is even longer.  I take advantage of this time to think, reflect, pray, meditate and be with God.  In the morning I thank him for waking me up healthy and to another beautiful day.  I thank him for all the people in my life; my husband, my kids, family and friends.  I think about people that are struggling and pray for them and I rejoice in what He has done to make people healthy and happy. 

I had an MRI scheduled for today that my neurologist ordered to see what is going on with my memory.  I haven’t had an MRI since I was originally diagnosed in February of 2009.  They told me it was a good idea to have these MRI’s often so that they can see if the treatment that I am on is working or if my MS is getting worse.  My fear with that is the radiation that is involved when you have this test done.  I am so scared of getting cancer and I know that radiation is a big factor that causes it.  I told my neurologist that I only wanted to have that test done if it was absolutely necessary.  With my recent symptoms of memory problems and me questioning if my current treatment was working I figured now was a good time for me to have this done.

This morning was a struggle for me on what to pray for.  I said to myself out loud. . . .

“What do I pray for?”

Do I pray that no more lesions show up on my brain which means the treatment that I am on is working?  However, then what is causing my memory problems? 

Do I pray that I have more lesions and that will tell me that is why my memory is not what it once was and the treatment that I am on is not working?  Then what?  Go without medicine and try a holistic approach?  Test out a new treatment and see if that one will work?

I contemplated this on the way to my appointment and all I came up with was more questions.  I sat in the parking lot and sent a text to Reuben, my mom and Bussy.  I told them I was getting anxious for my scan and I wasn’t sure what I should be praying for. 

Bussy was the first to text back and she reminded me that I am such a strong believer in God that I should just give Him my worries.  She said that my worrying won’t change the outcome and I needed to trust in His plan for me.  This was exactly what I needed to hear.  I closed my eyes and told God that it was all in His hands.  I told Him that I was trusting in what He was doing with me and I have faith that He was always taking care of me. 

Reuben called me next and told me to pray for peace of mind and body.  This was perfect.  I closed my eyes again and prayed for Him to give me peace with whatever the outcome of this scan was going to be.  I asked Him to put my body at ease and give my mind calmness as I go through this period of testing.

Mom responded next and simple told me that she prays for me every night which was also great to hear.  I know that it is with my faith in God that I am going to make it through this and any other challenges that come my way.  God, along with my family and friends, keep me strong.

I read the bible a few years back and was challenged by my mother-in-law, Rita, to find a verse that spoke to me.  I found this passage in the book of Matthew and I now have it posted on my desk at work so I can look at it and read it often.  This is exactly what I needed to read this morning when I was struggling on what to ask God for.  I might have to keep a copy in my purse!

Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you reset.  Take my yoke upon you.  Let me teach you, because I am humble and gentle, and you will find rest for your souls.  For my yoke fits perfectly, and the burden I carry is light.”  (Matthew 11:29-30)    

    

Meds/Vitamins

I always thought my mom was crazy with her pill container and all the vitamins and prescriptions that she takes every day.  I used to think what all of these things are for and one day I had her go through them all with me to see what she was taking and what it was for.  There was a reason for each one of these pills and she needed to take them all.  It was such a pain for her when she would go to the doctor and they would ask her, “What medications do you take?  How much?  How often?”  Who can remember all of this information on them, especially the dosage; milligrams, milliliters, every day, as needed, etc.  I made a card for her that she can carry in her wallet so that when someone asks her this she has all the information in one handy little card. 

When I was diagnosed with MS my doctor put me on a vitamin regimen that I still carry on with most of them today.  If I miss a day taking my pills I don’t feel any different, but if I go 2 days without taking them then I can feel my body dragging.  The one thing that I am still trying to wrap my head around is now I have to carry one of those cards with all my medications listed on it.  I didn’t think I was going to have to do this until I was older!

 
This is what all of my meds are for. . .

Copaxone-                          This in my injection that I have to do subcutaneously every day.  This is keeping my flare up’s to a minimum.  There is no medication that you can take that will completely take away all the symptoms of MS, but this is the treatment that I chose because it had the least side effects.  The only down fall is I have to do the injection every day.  Some of the other treatments are just once a week, wouldn’t that be nice!!  However, they have some pretty nasty side effects. 

Acidophilus-                      I take this because I am a woman.  Enough said!

Vitamin D-                          This is a vitamin that people usually get from being exposed to the sun.  This vitamin is often times low in people with MS.  Research isn’t sure why, but I am sure one reason is because the heat from the sun is hard on people with MS and if exposed to it too much flare-up’s usually result.

Vitamin B-2-                      This vitamin I have to special order because it usually is not on the shelf’s of normal drug stores.  It is also known as Riboflavin.  I have my blood drawn every so often and each time I have been very low in this particular vitamin so my neurologist suggested that I start taking this supplement.  This vitamin helps the body convert food into fuel for your body and helps the nervous system function properly.  When I was first diagnosed I was also put on Vitamin B-12 injections, but thank goodness my last blood draw said I was back to normal on those levels so I just have the copaxone injections to do.

Omega 3 Fish Oil-            Also known as “Brain Food”, this was a recommendation by my neurologist to help my memory.

Calcium + D3-                    Another vitamin that was low in my most recent blood draw.  In order for your body to absorb the calcium it receives in your diet you need to have Vitamin D.  Osteoporosis is very common in people with MS.  This is caused by the body not getting enough calcium.  Due to my MS my body was not getting enough Vitamin D, which means it was not absorbing the calcium that I would eat.  Now that I am taking Vitamin D, I need to get my calcium levels back up to where they should be.

Multi-Vitamin-                 This is the most recent pill that I added because my hair was falling out in clumps.  I spoke with my neurologist and he said this is a side effect of copaxone.  He told me that if I took a zinc supplement then it would stop the hair loss and a multi-vitamin is the best way to get this.  It seems to be working for me and I have less hair in my hair brush.

I saw my neurologist last week and he wants me to continue on these same vitamins/medications.  I have an MRI scheduled for next Friday so we will go from there.  

Neurology Appointment

I had my neurology appointment today.  They were a little concerned that I hadn't been there in 2 years.  They told me that they want to see me every year just to keep updated on my health status.  This appointment was originally schedule for last week, but he had to cancel because he was sick.  In order to get in as soon as I did was I had to make the appointment with his assistant and the actual doctor would be in for just a portion of the appointment.  It was a little frustrating at first because his assistant just took notes and really couldn't answer my questions.  I was relieved when Dr. Masood came in and was able to give me some answers.

I was concerned that the current treatment I am on, Copaxone isn't working.  He said the only way to tell that is to have another MRI done and see what my brain looks like so i agreed to this.  I told him I was concerned about a possible side effect. . . Copaxone could interfere with the bodies ability to fight foreign antigens, IE. cancer.  He said our bodies are very good at letting you know if something is wrong and this is not a major concern.  If I were to develop a blood borne cancer it might be a little harder to detect with a simple blood test, but my body would give me other signs that something is wrong and then a diagnosis could come from that.

I told him about my hands going numb and dropping things every once in a while.  He went through a few tests with my hands and he thinks I might have the start of carpel tunnel.  He said my hands are not as strong as they should be and this is easily correctable with minor surgery.  I told him it really isn't that big of a deal and I can live with that for the time being.

One of my major concerns is my memory.  I told him I forget things often and he asked me for some examples.  I told him Reuben will ask me about things that have happened in my past I cant recall them, I forget conversations and I need lists in order to remember things.  Reuben was at this appointment with me and they asked him what has changed with my memory.  He said, "It has been affected a lot.  It is like day and night."  WOW, I was shocked when he said this.  I know it has gotten bad, but I didn't think he noticed it as well.  They asked me about my sleep, if I was getting enough sleep and if I was dreaming because this could affect a person's memory.  I told him that I sleep great and dream often.  He told me that once we have the results of the MRI we will be able to tell if it is from MS or if it is something else that is going on.  He also scheduled me for some type of neurological memory testing that takes 4-6 hours for the test.  I will do that so we can figure out what exactly is causing my memory problems and see if we can fix it. 

I spoke with him about stairs and how it seems harder for me to go down them lately.  He checked my balance and said things look good with that so it might just be my apprehension and me thinking that I am going to fall.  It sounds like that is just in my head so I will work on letting go of the railing and seeing how that goes.

He told me to continue on the same vitamin regimen that he put me on with my initial diagnosis because a lot of the vitamins are lower in people with MS.  Once we get the results of the MRI we will go from there on determining if Copaxone is working for me or not. 

Reuben asked me tonight what my plan was if the MRI comes up with more lesions.  I told him I was going to seek alternate treatment and see how that goes.  If my brain looks the same then it I will grin and bear the injections!  Dr. Masood did remind me that there is no cure for MS.  Copaxone is a drug that is supposed to suppress some of the flare-ups, but there is no medicine that will completely take care of all of my symptoms. 

Rough Night!

Last night was the worst night I have had since being diagnosed with MS.  My injection sites on Wednesday’s are my left arm.  This spot is the one that hurts the most to do my shots.  Reuben has tried doing it in different spots to try and see if we can find a place where it won’t hurt as much.

We put the kids to bed and then it was time for my shot.  Reuben cleaned the area with an alcohol swab and then squeezed the skin on the back of my arm.  I felt the prick when he put in the needle which hurt a little, but then when he started squeezing in the medicine I knew something wasn’t right.  I felt a sharp pain in my tricep/bicep and then it traveled down to my forearm.  I started wiggling my arm, but Reuben told me he wasn’t done suppressing the syringe and there was still medicine left in it.  I told him something is not right and it was really hurting.  He quickly squeezed the rest of the medicine in my arm and took the needle out.  I grabbed my upper arm with my right hand and started rubbing it.  It felt like something was stretching the muscles in my arm out to the point where they couldn’t be tensed any further.  Reuben left the bathroom to go and turn the sprinklers off outside.  I couldn’t stand any longer so I sat down on the toilet and felt the tears springing into my eyes.  All I kept thinking to myself is, this isn’t right.  I have never had this feeling before when I do my injections.

I heard Ayden get out of bed which he frequently does to use the bathroom after we put him to bed.  I heard the toilet flush from his bathroom and I wiped my eyes to hide my tears as he came into our bathroom.  He saw me rubbing my arm and said, “Mom, what’s wrong?”  I told him that I was OK and that it was time for him to go back to bed.  He walked away and I looked down at my arm.  You could see my bicep pulsing beneath my skin and the pain was getting worse.  I started crying again and then went to find Reuben because I didn’t know what to do.  I met him in the living room and sat back down on the couch sobbing in his arms.  He got me an ice pack because this seemed to help with my arms in the past.  It wasn’t working.  Nothing was working and I could feel the pain all the way down my arm into my left hand which was now numb.

I was crying because of the pain in my arm, but I was also crying because I am not sure how much longer I can do this for.  This was the worst night that I have experienced since being diagnosed with MS.  I could feel Reuben start to hold me tighter and he was now crying as well.  We sat there for a few minutes trying to soothe each other.  I am sure he felt bad because he was the one that did the injection.  I told him that it wasn’t his fault and that I was going to be OK.

A few minutes passed and we went to lay down in bed together.  I went into Ayden’s room to reassure him that Mommy was OK.  He hugged me and laid back down to sleep.  I continued to hold the ice pack on my arm and the pulsing in my muscle finally stopped.  The pain was still there and I felt myself holding my breath.  I needed to see if I could take something to make this throbbing in my arm stop so I got up to get some ibuprofen.  I took that and the pain was tolerable a half hour later.

We read our devotional and it was time to fall asleep.  I normally sleep on my left side, but my arm was so tender I had to lie on my back.  I slept well and when I woke up this morning the pain in my arm was all gone.  Now it is just stiff and it is hard for me to lift heavy things with it.  It is the same feeling the day after you get a tetanus shot.  It is stiff and achy.  I am not sure if I will be doing the injections in my left arm any longer.

My neurologist just called and cancelled my appointment that I had for today because he is ill.  His next available appointment won’t be until May 25th!!!  Getting an appointment with this doctor takes forever.  I took an appointment with his physician’s assistant on May 15th.  The receptionist told me the PA will do the majority of the appointment and my neurologist will be in with me for just a few minutes.  Right now I will take what I can get.  I need my questions answered!!         

Neurologist Appointment

I have an appointment with my neurologist tomorrow at 1530.  I have a list of questions for him.  A lot of them about the current treatment that I am on.

I feel. . . . . . . . .  

Nervous

Anxious

Unsure

Lost

Hopefully tomorrow I will have some answers.

MS Walk 2012

WOW! 

What an amazing day!  Today we participated in the MS Walk 2012.  We have been working on this event since the end of January and it feels like it was over and done in a flash!  I am so proud of all that my team accomplished from raising money to raising awareness for MS.  I can say I am emotionally drained.

The day started out great.  I turned on the news this morning and heard that God answered my prayer for it to not rain on us during the walk.  The weather man reported that they rain was moving out and will hold off until this afternoon.  As we drove down to the VA I could see blue sky peeking through the clouds.  We got to the VA and almost filled an entire bus with just our team.  They had the strollers go in a separate bus otherwise I am sure we would have filled it up.  I sat down and my left hand was going numb.  I thought to myself, come on!!  I cant go today without having my body not cooperating?  Oh well, this was going to be a good day.  A lot of my friends and family came out to support me and a lot of other people who have MS so I was not going to let it get me down.  I rubbed it against my leg and shook it a few times to try and get the feeling back.  I shed a few tears, but I knew this was the first of many to come today.  Unfortunately it didn't work.

We got off the bus and the surprise I got for our team was dropped off.  I had a cake made shaped like sneakers with Star's on them.  It was great and of course, DELICIOUS!! 

We all registered and as I looked around at all the people that were there my emotions got the best of me and I cried again.  I got hugs from people and managed to pull it back together.  We had our team picture taken after one of the photographers set us all up and then we were on our way.  We decided to just do the 1.5 mile walk.  There was one rest stop along the way so we stopped to get are group all together again and I used the bathroom.  I'm not sure what triggered it, but I got the feeling back in my hand, but now my feet were tingling.  I just chuckled and thought to myself, well this is why we are raising money and walking.  A cure cannot come fast enough!

We completed the walk and then it was time to eat!  We sliced the cake and ate that and then we enjoyed some pizza.  A few people were getting ready to leave so I wanted to say thank you to everyone for coming out and supporting this event.  One last time, tears!  What can I say I am a crier!!  Finally the tingling was gone and my entire body was cooperating with me.  YEAH!!!! 

There was a DJ there playing music so Susie's Stars took to the dance floor and we tore it up!!  That was a lot of fun and I haven't danced like that in YEARS!!  Next, we went down by the falls and they were beautiful.  With all the rain we have gotten recently the water was really rushing and the site was amazing. 

We decided it was time to wrap things up and be on our way.  After saying our goodbye's, hugs and kisses we took the shuttle back to the car and we were on our way home.  The kids slept for the hour long ride home while Reuben and I talked about the day.  I told him I was emotionally exhausted.  I wasn't tired, I was just in the frame of mind where I just wanted to sit there and do nothing, think of nothing and rest.  This one day has so much build up and then it comes and goes for another year.  I love doing it and I am glad that we decided to make this an annual tradition.  Every year I want it to get bigger and better.

The MS walk may be done for another year, but I still have this disease.  This will be a fact until we can find a cure.  That is why we will keep walking, year after year until this happens!! 

                   Susie's Stars 2012

                                                                                                                            

Day before the MS walk 2012

It is the day before the MS walk and I am so excited.  This is the same feeling I get the day before the Minnesota State Fair and. . .  

I LOVE IT!!! 

I am amazed at how everything has come together this year.  Last year I signed up to do the walk with very little time to really get into the fundraising and helping bring awareness about MS.  This year I feel like I really accomplished something. 

Every time someone signed up to walk with my team I would get an e-mail and it was so cool to see all the people that committed to walking with us.  I have people on my team that I have not even met yet, but they are coming out tomorrow to help fight MS.  Some people I have not talked to in years.  Lots of friends and family I usually only see if there is a wedding or a funeral, children are going to be all decked out in orange, we even have a few babies that will be walking with us making this their 1st fundraising walk.  It gives me chills just thinking how many people will be there tomorrow to support not only me, but the thousands of other people that suffer from MS. 

We are just a few dollars away from raising $4,000.00 and that will all be going to help fund research to hopefully find a cure for MS.  It is astonishing how giving people are.  How generous people have been with their time, money and talents to raise money.

I think the best thing that has come out of MS walk 2012 is the awareness that we are raising about this disease.  Before I was diagnosed I knew very little about it.  Now I get excited when people ask me about MS, how it feels, what it is and what they can do to help.

Going to go and lace up my tennis shoes in blazing orange laces!!!

MS Walk 2011

I will write more soon and post pics of this year's walk!!

Is this working?

Have you ever been on a medication, but you are not sure it is doing what it is supposed to?  There have been times where I have had a headache and take some ibuprofen to ease the pain, but it doesn’t seem to help.  What is in medicine and are we 100% sure that it will ease us from our ailments?

This is how I feel about the treatment that I started since being diagnosed with MS.  I was officially diagnosed in February 2009 and was urged to start a treatment regime immediately.  I had a couple different options laid out for me and I went with an injectable medication, Copaxone.  This medicine had fewer side effects, but was the one medicine that you need to give yourself a shot every single day for the rest of your life.  At the time I thought. . . If this is going to keep me healthy, alive and out of a wheelchair I will gladly do it.  It has only been 3 years and I am already tired to doing it.

Some days I know I have MS all day long by how I feel or different things that happen to me throughout the day.  Other days I completely forget that I have it until 7:15 PM when it comes time for me to give myself this dreaded injection.  It is a constant reminder that I have this chronic disease and I will have it forever.  I am a baby.  I don’t like pain and these injections hurt!  

I start getting anxious around 6:30 PM when the house starts settling down and we begin our nightly routine.  We clean the toys up or clean up whatever craft we are playing with.  I send Ayden into his room to get his jammies on and then either Reuben or I get Makayla’s jammies on.  I start feeling a tingle wherever that evening’s injection site is scheduled to be.  We go into the bathroom to brush our teeth and a shiver runs down my spine as I look at the container that holds the syringes as well as alcohol swabs and the sharps cutter I use to dispose of the needle when I am done.  When we are done brushing our teeth we move into Makayla’s room to read a book and say our prayers.  Up until recently we used to end one of our prayers with “A special prayer for . . . . and Mommy’s health”.  I decided to cut this out and just pray for those that are having current struggles.  I don’t want another reminder of my illness.  We kiss our babies goodnight and I get a sick feeling in my stomach.  I go straight to the bathroom because I am sick of building it up for the last 45 minutes.  I give myself the injection and there it is, like someone screaming at the top of their lungs to me, “YOU HAVE MULTIPLE SCLEROSIS!!!”  For the next hour the injection site is warm, itches, burns, aches and I know tomorrow I will have what feels like a ball in that spot and it will be tender to touch for the next day.  Which is another reminder of the disease and that I get to do it all over again tonight.                                 





I was able to go off Copaxone when we decided to have our second child.  I went off it in October 2009 and we got pregnant right away.  I was symptom and pain free for 10 glorious months while I was pregnant with Makayla.  It was a vacation away from thinking about MS and what it was doing to my body.  I didn’t have my nightly 7:15 PM reminder ever single night.  It was so liberating to not have that on my mind every night.  I need to stay healthy for my husband and my two wonderful kids.  They need me and I need them even more.  I would do anything for them so I went right back onto Copaxone as soon as my baby girl was welcomed into the world.  




I continue to do this treatment because I have been told that it will suppress some of the flare ups that are associated with Multiple Sclerosis.  There is no treatment that will completely take away all the symptoms and there is no cure for this disease.  I am going in to see my neurologist on Thursday, May 10th and I have a list of questions for him.  It has been 3 years since I had an MRI so I assume that he is going to want me to go and have another one done.  I am interested in seeing if the Copaxone is doing what it is supposed to be doing.