Why an MS Blog?

Over the course of the last week, I have had two different conversations with two different people. Both are people I love and care about. I found it somewhat ironic that each of them thoughtfully asked me, "Why do you think you have MS?" I wasn't quite sure how to answer them. That may be a question I might not ever be able to answer. Maybe it's for me to learn and to grow. Maybe it's for my family. Maybe it's for a friend. Who knows, maybe by me having this disease, I might be able to help or touch someone else who happens to find themselves in my same situation. Whatever the case may be, the more I have thought about their question, the more I have felt the need to do something. I woke up in the middle of the night with the thought of creating this blog. I'm not sure what will come of it, how often I will write, or even how often people will visit. Most likely, I will only be posting as I have new info, Dr. Visits, or any different problems come up. If anything, I am a huge believer in keeping personal records. I have found in my own personal journal that as I have gone through a trial, a few years down the road, I am able to see how I progressed and sometimes, why things happened the way they did. Hind sight is always 20/20. I am hoping by recording my journey of living with MS, that will be the case in the years to come. I would love for this to turn in to a place where others suffering and coping with this disease, can come and share their thoughts and feelings for all of us to learn from. So, here's to the first post!

HOW IT ALL STARTED:

Hmmmm......Where to start?

I have avoided this post for a while now, but due to more and more people finding out, and also due to the need to put all rumors to rest, I decided it was probably time for me to share the happenings of the last few months.

The truth is, I have been seeing someone. I have had 5 dates with this special someone so far. After each, I have spent many sleepless nights wondering if it likes me, or if we will be seeing each other again. Funny thing is, Trav has been totally ok with it. He has even been the one to drive me to my visits.
This Special Someone is "Tanner Clinic Radiology."This MRI has been my close companion for the last month and a half. Nothing quite like laying your hands gently on your chest, and then being lifted and slid into something so tight that by the time they have you in place, your arms are folded! I was really proud of myself however. For someone who has a little issue with Claustrophobia, I pulled this off very well! So, why have I been doing this? Still really not sure how I got here myself, but I'll share with you what I know. Towards the end of December, I fell down my stairs while holding my nephew. My high heel got stuck in my levis, half way down. It was one of those situations where you know it's happening, but it's happening so fast, there is nothing you can do about it. I realized we were either going to fall and roll, and I would drop him, or I could jump. So.....I chose the later. We flew from the 5th stair up from the bottom. I landed perfectly on the wood floor on both feet. Only problem is, when I landed on those high heels with that force, a sharp pain immediately shot up my back from the tailbone up. Please don't judge me or question why I was carrying a toddler in high heels and wide-legged pants down steep stairs......the Dr.'s and my Dad have already taken care of that for you! I saw a need and just went to take care of it. I wasn't thinking of any consequences!! Trust me, I have now seen the error of my ways. I should probably take this time to apologize to his trusting parents while I'm at it, for putting their son's life at risk. Anyway, long story short, a few days later, I began having numbness in my thighs. Over the course of a month, I was completely numb from the waist down. When I say numb, I mean tingling, pins and needles numb. Having worked in the Neurology Clinic for 2 years when we first got married, I called one of the Dr.'s there and he suggested a Lower Lumbar MRI and an appointment with him. At the visit, he did a full Neurological exam and told me that the MRI results, which showed a torn disc placing pressure on some lower nerves, wasn't enough to explain the numbness all over, and especially didn't explain the fact that by that time, the numbness had spread up, just under my chest. So, we went back for an MRI of my C-Spine and T-Spine. Within 15 minutes of getting home, Radiology called and told me they found something on my spine and I would need to go back in the next morning to do them again with dye through my veins. Awesome, that sounded fun! When I got there, they explained that they were doing this because they found lesions on my spinal chord. If they didn't react to the dye, they were most likely tissue or cysts. If they did react, they were more likely tumors. At the next visit, Dr. Varma told us that the lesions reacted slightly and he felt it was time to start testing for MS. That meant blood work, a spinal tap and an MRI of my brain. Trav and I left that appointment very discouraged. If I'm being honest, I cried. I cried a lot that day. I felt like I had been given a death sentence. All of the MS patients I had come in contact with while working there came racing through my mind. To remember some of them and their condition, was devastating. I always said, of all diseases, MS is one I prayed I would never have, and now I was headed off to be tested for it. Crazy thing is, over the course of all this testing, appointments, and worrying, the Lord sent some incredible experiences to remind us He was there and aware of us and what we were going through. While I was sitting in the hospital waiting room for my Spinal Tap, I was so nervous. I couldn't calm my nerves. I had assisted with these before and had experienced grown men screaming out in pain. I knew what I was headed for and was dying about it. McKay Dee Hospital had a pianist playing in the foyer. I could hear the music just down the hall. 3 or 4 songs from different movies were played as I sat there waiting. Trav left to find me a drink of water. While he was gone, I offered a little prayer asking Heavenly Father to help me be at peace and to calm my nerves. As I closed my prayer and lifted my head, the pianist began playing "Our Savior's Love." My prayer was answered so literally, the tears immediately came. Right then, Trav came back and my name was called. The peace came and the test wasn't so bad. I was grateful for that blessing that day.

We are still awaiting the results of the blood work and spinal tap. We finally had some good news with the MRI of my brain.

1. They found I actually had a brain.
2. It was free and clear from any and all disease!!

That was a HUGE lift to our spirits. If it does show up in my spinal fluid, or my blood work, at least it isn't in the major organ of my body yet. With any luck, if I do have it, we have caught it early and can maybe have a chance of keeping it at bay. I have been too chicken to call and ask for the results. When I finally got up the courage and called, they were out of the office for 3 days and will be back today. Trav has a conference in St. George til Wednesday, so I have decided to go with him and take a little break from life. I may call before we leave today, but then again, I might not!! If anything, we may know by Wednesday what those results show.
Either way, I am at peace about it.

We've had a family fast. I've received a blessing. We've attended the temple. I prayed constantly - on my knees in the lockers, dressing rooms, MRI machines, waiting rooms, in the car and at home in my room. Saturday, our sweet Bishop organized a Ward Fast for yesterday. Meals have been brought in by family and friends. Treats, gifts and flowers have been delivered. Our kids have been babysat by many. Phone calls, emails and Facebook messages have come flooding in. I think it's safe to say that we have been extremely blessed through this trial. We have become closer as a family. Our testimony of our Savior and our Father in Heaven have been strengthened. Tender mercies have come through many more spiritual experiences I haven't shared. I have been reminded through all of this just how lucky I am to be married to Travis Burke. He has been my rock. He was there with me every step of the way. Even though I could drive myself to the MRI's and he couldn't come back, he sat faithfully in the waiting room, which gave me a lot of comfort, just knowing he was there. Trav even made me a bed in the back of our van so that I could lay down and make it to all of the family Easter parties that weekend, due to the headache I received from the Spinal Tap. He is everything to me and I am so grateful to him for the care he has given me. I love you Trav.

Hopefully we will find some sunshine and sweet deals at the outlets over the next couple of days. I will keep you all posted when we receive any word. Thank you from the bottom of our hearts for the love, concern and prayers you have sent our way. I am truly blessed.

Friday, April 16, 2010

Keep your Arms and Legs inside the ride at all times....

Oh how I was hoping to get off this roller coaster ride! Unfortunately, it looks like it may just be the beginning of a lifetime of ups and downs.

The results are in and apparently....
this is the new face of MS.
I had been calling the Dr.'s office for the results of my Spinal Tap and Blood work since last Thursday, and was unable to get anyone to call me back. Thanks to my dear and long time friend Paige, who used to work with me at the Neurology Clinic, I was finally able to get my results today after she took matters in to her own hands and texted the Doc!!
Thank you Paige, you have been a lifesaver lately.....
I owe you, and love you!
They worked me in this morning.....
which told me right there I was headed for news,
otherwise, he would have just told me over the phone.
Dr. V came in, sat down, and got straight to the point.
There are 3 levels of MS diagnosis.
No MS in Brain, spinal fluid and blood= No MS Period!
No MS in Brain but suggestive in the spinal fluid=Probable MS.
MS in the brain and Spinal Fluid=Definite MS.

I fall in the Probable MS Diagnosis, because my Brain is clear. However, other than my brain being free at this point, I will be treated as though it is full blown MS because it's in my spinal fluid. Dr. V feels like because we are catching it early,
it is best for me to start taking the shots of interferons immediately.
Doing this may keep it at bay.
I prepared for this.
I thought about this and how I would react.
I told myself it would be fine and I would get through it.
But until it was actually said out loud and
we began discussing the possibility of any future babies....
and side effects of flu like symptoms after daily shots,
along with possible swings of depression -
I decided I wasn't ready to hear this news,
and I'm not sure I feel fine about it.
I'm scared. I'm frustrated. I'm overwhelmed.
How's that for honesty?
Obviously I am only in the 7th hour of
playing this out in my mind.
I'm sure things will look and feel better, even by tomorrow.
But for now, my heart hurts and so does my head.
So many emotions.
Because Dr. V is not covered by our insurance,
we will be heading in to another neurologist the first week of May.
I am actually excited to get a second opinion.
Dr. V. is on the anti-side of things when it comes to my beliefs.
When it comes to science, I trust him whole-heartedly.
When it comes to the spirituality of having children,
I was not in love with his answer.
So, back to my knees I go, in search of more answers.
Back to my knees for more peace and healing.
Thank you for all of the love and support.
I'm sorry to have to send you all here to get the full update,
but I took a few phone calls today,
and can't seem to keep my emotions in check right now.
I figured this might be the easiest way to fill you all in.
I owe you that much for all the prayers and fasting you have done in my behalf.
I am forever grateful.
Dr. V told me today I should thank my nephew
for helping me catch this early.
So, thank you Zachy,
and
Thanks to my Father in Heaven for...
guiding this every step of the way.