Welcome to Mellie's mind...

Where thoughts can be funny, can race at all hours of the day and night and can sometimes not make any sense!

Enjoy the ride!

Monday, October 14, 2013

Life can change in an instant.....

Rebirth[ ree-burth, ree-burth ]
noun
1. a new or second birth: the rebirth of the soul.
2. a renewed existence, activity, or growth; renaissance or revival: the rebirth of conservatism.

October 14, 2013, is my rebirth date. I have a renewed existence and a renewed outlook on my life. Although I continue to fight demons in my head and work on putting the past behind me so I can discover a sense of peace, on October 14, 2013, Mellie was born again.

Three Weeks Ago

September 24th started out like most mornings. I was up with the family and getting everyone's food ready for the day. I am not much of a morning person; I don't drink coffee, and I don't have the luxury of taking time to myself to wake up slowly. As soon as my hubby pats me on the leg and leans in to kiss me good morning, my feet are on the ground and I am going full speed. 

However, this morning my mind was focused on my Princess Tini (dog). She had been up several times the night before vomiting. I was anxious to get the kids and hubby off for their days, so I could take her to the vet first thing. When I finally made it to the vet at 9:00am, it was really the first time I said more than a few words to anyone. As I began to speak I found it hard to articulate my words. I was standing in the reception area of the vet struggling to speak. When the words finally did come out, they were slurred and my mouth was full of excessive saliva. Normally I am a fast talker but today when I tried to talk my normal speed, the words both formed at a much slower pace and then they were delivered with a slur. After a few moments the vet asked me if I was alright, he smiled and said, "You sound drunk.” I laughed and assured him I was fine just really tired from the night before.

As I got into my car and was able to stop for a moment I tried to speak out loud to myself, and this time I was extremely focused on the words I wanted to say. Again, though, the words came slow and slurred. I realized at that moment too my tongue felt swollen, it was difficult for me to swallow, and the left side of my lips felt numb. The more I tried the harder I realized it was for me to talk like I normally talk.  I wondered what had occurred to make this happen to me and could feel myself getting anxious about it.  I worried about driving myself home and was wondering was this the start of a stroke or a heart attack, was I going to pass out while trying to drive home?  I tried to keep myself from freaking out and reminded myself that when I was a little girl about 8 or 9 I woke up and 1/2 my face was numb.  Back then my doctor told me I had a cold in my face and it took about two weeks for it to go away.  I chalked it up to another cold in my face and forced myself to put the car in gear. As I drove home, I knew I needed to call my doctor right away.

I called and was able to get a same day appointment. My next call was to my husband at work. I did not want to worry him, or myself so I really tried to speak slow and articulate the words I wanted to say to him so he could not only understand me but assure me that nothing was wrong. My hubby asked me some questions while he listened to my speech. He wanted to know what areas of my body felt numb, if I had any pain—and when I noticed my difficult speaking. He didn't seem to concerned but told me he would come pick me up and take me to the doctor.

I found out later my husband made several calls to Kaiser when he hung with me, attempting to get an immediate appointment. As it turns out, Kaiser had called me repeatedly that day to see me right away but as I did not recognize the number, I did not answer the phone.  (I know, hard to think I don't answer my phone)

Later that day my hubby showed up and off to the doctor we went. By this time my anxiety had increased significantly. It was too difficult for me to speak, so I was unable to do my job. I was anxious about what was going on and as the day moved on, it became harder and harder for me to swallow. My doctor immediately tested my reflexes and motor skills. He was able to rule out a stroke—this was good, he assured me, but what came to follow rocked me to my toes.

Dr. Sahota said to me, "I am going to order an MRI for you and start you on steroid therapy via IV for three days. We are going to treat you as if you have MS and then see what the MRI shows us."

MS? As in multiple sclerosis?

In July 2007, I had heard those same two words being spoken to me after the birth of our youngest son Reuben. After the delivery of Reuben, I had swelling of the brain. I was in bad shape and as part of the treatment to determine the extent of any damage, and emergency MRI was ordered at 1:30 in the morning. While I later recovered fully, the MRI showed there were lesions in my brain. It was impossible to determine how old they were, but they were not active at the time of the MRI.

Lesions on your brain can be caused by MS or from damage from migraines. Because I had no symptoms of MS but had suffered from migraines since I was 12, I was told in 2007 it could be just from those. I was told to keep an eye on myself, and we will see if I developed any MS Symptoms. Honestly I never thought about it again after that day.

Now, here I was hearing it again and I was going to be treated as if I had it? I could not comprehend what he was saying to me. I looked at my hubby as the doctor was speaking to me to see his reaction. He didn't seemed too moved by the subject matter (if you know my husband, he often times will intentionally not show emotion on his face), but I know what I wanted him to do was stand up and shout, "Mellie does not have MS." Instead, he reminded the doctor that I had a MRI in the past to serve as a baseline for comparison purposes. As the doctor excused himself from the room to go look up the MRI, my hubby looked at me and did what he does best—he flashed his smile and told me with his eyes, you are going to be okay. Don't worry.   I ended the appointment with steroid treatment delivered via an IV (to “kill” any active lesions), and an appointment for a MRI three days later, in Salem (my doctor wanted the MRI immediately and Salem had the first opening).
Day of My MRI

With my hubby by my side, I laid in the MRI machine for 45 minutes repeating The Lord’s Prayer over and over again, as my hubby stood by my side holding onto my legs.

It took several more days after the MRI to learn the results. In the interim, I was being referred to a neurologist that specializes in MS. For the next week my hubby was diligent on reading everything there was to know about MS. He read blogs from people who had similar attacks, he read about therapy for people with MS; different types of MS. He constantly was reading and trying to get a grip on what I could have. I, for one, focused on my speech. It was very embarrassing for me to not be able to speak normally. I found myself saying little to no words when I was in public until I could get the use of my speech all the way back. I spent my time talking to God and my time telling myself I was NOT going to have MS. I was too strong for that, I told myself, and have come too far in my life to have any kind of disease.

On September 30, 2013, my regular doctor emailed me the preliminary results to the MRI but advised me that he would defer the diagnosis to the specialist, his email stated:

Here are your MRI results. You can discuss them with Dr Zarelli.

Since your last MRI:

1. New 1.6 cm acute demyelinating plaque in the left middle frontal gyrus.

2. Two new but nonactive plaques in the right superior temporal gyrus and in the right precentral gyrus near the vertex.

3. Remaining white matter disease appears similar.


None of this really meant much to me. I passed the information off to my hubby and told myself in a few days it would be all cleared up, and I would probably have to make some more changes in my life to continue to prevent migraines. This preliminary result sent my hubby into an even deeper mode of research to try and discover what was going on. 


Neurology Specialist

It was a long several days before my follow-up appointment with the neurologist, Dr. Zarelli.
Sunday night, the night before my appointment, my husband sat up in bed, closed our bedroom doors, turned off the TV, and said he wanted to speak to me. He told me after all the research he had been doing for the past week and with the symptoms I was having he thought I might have either clinically isolated syndrome or MS. 

CIS, he explained, is essentially MS with only one episode. For a diagnosis of MS, he said, there needs to be symptoms over time. 

He went on to tell me that no matter what the doctors found out he wanted me to know that he was there for me, he would be there for me, and we would get through this no matter what. He expressed his love for me and expressed how we are so fortunate to be where we are today in our marriage and our life in generally. He didn't want me to worry, he wanted me to know he would be here for me; he would be there for us and for our family. As much as I adored what he was doing and appreciated that he was trying to calm my nerves I looked at him and said "I love you, thank you but I do NOT have MS. I am too strong to have MS." He just sort of looked at me, then he hugged me and kissed me, and we enjoyed the rest of our night together.


Day of Appointment 

As I sat there and my hubby held my hand I just kept saying to myself you do not have MS, you do not have MS you are fineFinally the doctor came in, introduced himself asked if he could have a student sit in with us and the appointment began. 

As Dr. Zarelli logged into his computer, while not even looking at me, he said "Okay, so you are here and you have MS." My body went cold and I muttered the words, "Well, just come out with it, why don't you?" My husband held my hand. 

The doctor went on to say with the lesions showing on my MRI it was clear this was MS. I had lesions in 2007, and a new lesion in 2013—including a currently active lesion which led to my speech impairment. 

The room closed up on me and everyone around me became just this blurred image in my sight. I instantly thought about my 5 kids, their images appeared in my mind lined up from oldest to youngest, and I began to cry uncontrollably. How could I have MS? I am the mother of 5 kids. My thoughts went to my hubby next and in an instant I saw myself sitting back on my bed from the night before looking into his eyes , and it suddenly occurred to me he knew I had MS when he was trying to reassure me.
I can't have MS, I thought. Who would take care of him? I can't have MS…I am the glue that holds this family together. In those split moments I felt strength from my soul leave my body. I stood there feeling as if I were only a shell of the person I was when I first walked into the room.

It was discovered with during some very uncomfortable and emotional moments that Dr. Zarelli had thought I was ALREADY diagnosed with MS and just thought I was there for some questions. He apologized, explained that the previous neurologist failed to communicate that no one had told us yet, and started over again. 

As I composed myself and as my hubby comforted me, Dr. Zarelli explained to me that this was not a death sentence. Not only was this not a death sentence, but he went on to say that I have probably had MS for the past 6-10 years and have done incredibly well despite NO treatment. 

MS has a “golden window” wherein the first 5 years determines how aggressive the disease is. I have a step above benign MS, which means I had a MS attack (called an exacerbation), but have only had one attack in almost a decade—and this was without treatment. 

Dr. Zarelli told us that he can almost 100% guarantee I will do fine with this disease and that research is so advanced in 5 years I may be able to walk into his office, get a shot and be cured of it. He said if this 1999, he would have a different prognosis for me—a dark one—but as a specialist in MS, he could tell me that based on my MRI, the fact I have had it for years and was not getting any treatment, and the way I rebounded from the current attack—my body was strong and the form of the disease I had was mild, and manageable. I could quite possibly never have symptoms again, and the disease tends to go dormant at 50. Basically, I was halfway through it and had no idea I was fighting it all this time.

He went on to tell us that I would start therapy right away to prevent the disease from getting worse and prevent future exasperation from happening. Again he wanted me to know that I was going to be fine. As long as I got the MS therapy and continue to take care of my health through diet and exercise, he saw no reason for concerns or chances of this getting any worse than it was right then. My hubby and I were to go home with information and choose what kind of drug therapy we were going to put me on. 


Car Ride Home 

Once into our vehicle my hubby wrapped his arms around me and began what I like to call "Operation Calm Mellie down." The words my hubby spoke that day to me are so near and dear to my heart that I will keep many of them to myself. There are many things I love about this man, but one of them is the way he loves me and can calm me when fear and doubt have completely taken over, a side many people never get a chance to see of him but one of the sides I really appreciate and adore. He truly becomes the rock I need, no matter what is going on between us. What I will share about that moment is this: He reminded me that the doctor said I have probably had this disease for 6-10 years, and this is my first episode in that time. He reminded me that the doctor felt that drug therapy could very well prevent any future attacks and/or lesions. He told me that with everything he read and what the doctor had said, that when I made my transformation 5 years ago, not only was I fighting to get my life style in order but I was also in the fight of my life against a disease that could have left me disabled, and I had no idea. He told me that because of my dedication to health and fitness, there was no doubt in his mind that I put this disease in its place—kept it from becoming what it could have been. Everything he had read from the National MS Society said that drugs help, but diet and exercise are the deciding factor. 

He reminded me that I was battling this with no medication—no help from modern science, and now it was okay to combine my efforts in the gym and in the kitchen with modern science—help I deserved to get. He told me how strong I was as a person, and how very proud of me he was.

As we pulled away from the doctor's office, I knew I had been forever changed but I also knew that with God, my hubby, and the support of my family I would be fine. This disease was not going to get the best of me. It was not going to define who I am. 

Today 

October 14, 2013, will always be a day of rebirth for me.
I am blessed by God to not have my disease be more aggressive, and I was blessed by the love of my hubby who has stood by my side. With God, my husband, the love of my kids and the treatment from modern day medicine, this will be nothing but another learning experience for me. This will be another way to make myself better, help others make themselves better, and be an example to anyone who cares to watch.


I am Michelle Elizabeth Galvan and I have MS... but MS does NOT have me.


*MS is neurological disease wherein your body’s own immune system attacks the myelin sheath (protective layer) over the nerve endings in the brain. The cumulative damage to the sheath interferes with the communication from brain to muscle, which can lead to disabilities. MS has no cure, but there are several different levels of MS and diet and exercise is the number one contributing factor to the overall impact of MS.

This is your brain.....


This is your brain with lesions..... any questions?












2 comments:

  1. You know I got your back sister! Top to bottom...east west north south! You got this ...you own it! Plus loads of thoughts & prayers from team Franzen in the Midwest!!!

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    1. Thank you brother... appreciate it and I know... thanks!

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