MS & I

Thursday, June 24, 2010

...

Getting my treatments day one
(they hurt!)



Last week I received my 3 solumedrol treatments. Although they did not work as fast or as well as the last time I had them when I was admitted into the hospital in February my doctor has assured me that it could take up to 2 weeks to get the full results. The annoying numbness in my face has begun to fade and I look forward to it just going away! So I realize that my last post was beyond depressing and a little too honest, but this is the reason that I am blogging. I want people to know and understand that this disease although not fatal can be debilitating both physically and emotionally. If 2.5 million people in the world have MS why is it we don’t hear more about it? I hope to be a small voice in the crowd of millions to put in plain words just what it is we go through on a daily basis. Because of this relapse I realized that I needed to enter some type of physical rehab as I had done in the hospital. Monday I enrolled in the U of U MS rehab clinic. It was so hard to swallow when I was informed I was the youngest in the group of sixty participants. It does scare me at times when I realize that this just isn’t going away and that I will have to live with this the rest of my life. I look at the other members in their fifties and sixties and think they have it so much easier because they were able to live a normal life, raise a family, and have a career. But I must step back see that no other 21 year old has this outlook on life and that I have an opportunity in my life to make something of it.

"You gain strength, courage & confidence by every experience in which you really stop to look fear in the face...You must do the thing you cannot do."- Eleanor Roosevelt

Tuesday, June 15, 2010

Relapse...

Well I knew it was going to happen one day I just didn’t think it would happen only 3 months after getting out of the hospital. As usual I tried taking on way to much and decided to finish my last two classes to apply for nursing school. Three weeks into the class I began to feel very sick and I knew something just wasn’t right. Soon my left foot began to go numb again. One day in cadaver lab I just began to have a panic attack and just started to cry. I knew I needed to leave right away, and hurried home. I cried the whole way home. I think I cried for two days straight because I once again had to drop out of school. I am so terrified I will never be able to accomplish anything in life because of this. I honestly am terrified for my future and find myself beyond depressed. I am so scared for my future and only want to be successful, as a mother, and a great wife and I find myself lacking. My left foot, arm, and FACE are now numb. Jeff and I made a trip to my MS specialist and got more bad news…my rheumatoid numbers are very high. What this means I am not sure and either does my doctor, she assured me it could mean a number of things. I will now have to see a rheumatologist and get to the bottom of these high numbers and can only pray for the best. I will be going into the hospital on Thursday morning to begin a drug treatment of solumedrol (super strong steroids) although they hurt like a nut job I truly do love them due to the fact they help me feel things again! This is THE hardest thing that I have ever had to go through next to losing my brother. I have a hard time understanding the plan my heavenly father has for me but I am sure there is a reason for all of my pain and suffering. I just have to have patients. I am so thankful for my sweet Jeff for understanding and his sureness that I can make it through. For his pep talks every night that he loves me with all his heart and that he will never leave me no matter how hard this may become and the money he is willing to put into this. That he works two jobs to make sure we have proper medical coverage (even though I never get to see him L) I love him more then ever and know he is a true man for standing by his wife in all of her struggles.

"Learn the art of patience. Apply discipline to your thoughts when they become anxious over the outcome of a goal. Impatiens breeds anxiety, fear, discouragement, and failure. Patients creates confidence, decisiveness, and a rational outlook, which eventually leads to success."-Brian Adams

Sunday, May 30, 2010

Dream...

"Sometimes we must get hurt in order to grow. We must fail in order to know. Sometimes our visions clear only after our eyes are washed away with tears. "

I have to talk about a dream I had a few weeks back. I know I really need to keep up on this blog, but so much is happening so fast. In my dream I was back in the past of my life. this was before I was ever having any type of symptoms. I was going to a friends house and I remember having this feeling of nothingness. In my dream I begin to say to my self how boring I am, that there is nothing interesting about me. Now in this dream I some how knew that in the future I was going to be diagnosed with something and that I was special enough to have it. You see I got the feeling that I got MS because I was special enough to get it, that I was chosen in a way. Not just anyone can be "blessed" with this disease, I knew that my Heavenly Father thought that I was so cool and exceptional that he gave me this "gift". For some reason I am to make something of my self with this gift, this thing that I have been blessed with that makes me stand out in a crowd. I am out of the ordinary in my own little way and because of this I find my self more interesting, and no longer not so boring.

Tuesday, May 11, 2010

Thankful...


It would be so wrong not to say how thankful I am for all the wonderful people in my life. To start my amazing husband who has put up with me for 4 years now! If I was him I would have started to run a long time ago. Thankful for my parents for always reassuring me that everything happens for a reason, and that I will be able to handle whatever comes my way. “Life’s up and downs they come and go”. Now my biggest thanks must go to IHC in Murray. I was so scared to go to the hospital, not because hospitals scare me. I really did want and NEED help with what was going on. I was afraid because at the time I had no insurance, and knew there was no way I could handle the hospital bills. I was in the hospital for 2 weeks. And in a Nero rehab unit which included intense physical rehab. You could just imagine how much they were charging me for 6 PT’s a day! The hospital was amazing and sent a financial assistant to my room and he filed all the needed paper work so I could receive help with paying for this extensive stay with no insurance. When I was home and the hospital bills began to arrive it totaled to about $28000.00. I am explaining this because I know that people became really concerned after seeing me on the news in March, which had a break down of my “mounting debt”. I can not express the appreciation that I have for IHC. They sent me a letter about a month and a half after leaving the hospital. The letter explained to me that I would only have to pay less then 10% of the bill. Because Jeff and I are so cheap and all we do is save our money we have been able to pay all of the hospital bills in full. Our next concern was my MS medication. Jeff was hired to a job that offers insurance. The medication that should be $1600.00 a MONTH, is now $60.00! So to let all of you know so far Jeff and I are being taken care of. Thank you Jeff for working 2 jobs so that we can get by while I am home trying to recover. I hope they will give me the approval to work again by the end of this summer because I am going StIr CrAzY! THANK YOU, THANK YOU, THANK YOU!

My support...including Den Boy on Devins head :)

Monday, April 19, 2010

Why me...

I feel that I have been so good not to say “why me?” I always thought that the worst thing in life had already happened to me when I lost my brother. I always thought nothing else bad in life can happen to me. I ran into a friend on my birthday he asked what had been going on, when I explained to him that I had been diagnosed with MS the first thing he said is “that isn’t fair to have two things so horrible happen in a row.”
Had another appointment with my MS specialist and everything seems to be on track. She says there is definite room for improvement but walking well… Then comes more bad news. A few weeks back I had a TON of blood work done to make sure everything else is ok. My vitamin D levels came back low (which is common for MS patients), and some how it is possible that I have Rheumatoid Arthritis (A chronic and progressive disease in which the immune system attacks the joints. It is characterized by pain, inflammation and swelling of the joints, stiffness, weakness, loss of mobility and deformity.) I have always said from day one I have never had any pain. I knock on wood every time I say that. Luckily my doctor believes this is a fluke. I have never had any of the symptoms that characterize Rheumatoid (knock on wood). Good news… Had another doctor’s appointment with a neurologist. I did testing for about five hours. This was all to see if the MS lesions had affected my brain in any way. We did memory test, spelling and arithmetic test and more. Fortunately they have had no affect on my brain in any way, I am good to return to school this May. I always said “I rather have my brain than my legs.” So I am HAPPY. If we see adversity wisely, our toughest times can be filled with immense growth, which leads to happiness. I try to keep this in my mind at all times. I cant keep thinking why me or I will continue to progress in my MS. I will have my good and bad days but I have people in my life that will prevent me from saying why me. And because I have lost my brother I know that he is watching over me, I have my own personal guardian angle.

Jr. Prom...Trevor, Denver, and me

Wednesday, March 24, 2010

The story behind my brother...


My mom, dad, and I were interviewed by Deseret News last week concerning my brothers death. I love being able to spread the word about prescription drug abuse and the toll it takes on the family. I don't think people realize how big of a problem this is! It is so sad that this is one of the top killers in Utah, and this is something that can so easily be controlled. Please read! http://www.deseretnews.com/article/700018654/Prescription-drug-abuse-puts-many-Utahns-in-a-deadly-spiral.html


Last week my family and I were invited to a wonderful luncheon for a new facility called N.O.R.F. (national opiates recovery foundation.) This is located in Murray and is a rehabilitation center for those addicted to opiates. My dad was a speaker and did an amazing job! Although the subject is very hard to discuss he loves nothing more than telling his story in hopes that others will have the opportunity to learn from it before it's too late. Please be opiate free! :)

Saturday, March 20, 2010

The beginning of something new…

Yesterday I finally met with my MS specialist to start my real MS medication. I was sooo excited to start. When I came home from the hospital and was off all of the steroids my foot slowly started to go numb once again and the cycle I endured began all over again. For right now I must use a walker whereever I go and a wheelchair for long walks such as the mall. In the hospital they diagnosed me with PPMS (primary progressive multiple sclerosis) this is technically the worst type of MS you can have. I did get good news from my doctor; she does not believe that I have PPMS. She said a proper diagnosis could take a few months. The doctor and her PA believe that I have had this disease since I was a senior in high school. So I possibly could have had MS all the way back in 2005! And that makes a lot of sense. They began me on a few oral meds and the MS medication is a once a week shot that I give myself. The only side effect is flu like symptoms. On one hand I am so happy to start meds so I can go back to a normal life and on the on the other hand I hate being sick. I did fine the first 6 hours after the injection and then a horrible migraine came upon me. This lasted for up to 5 or so hours. Oh do I now have sympathy for those who have these. This is the worst feeling in the world, just trying to get to my bed seemed almost impossible. My hubby tried carrying me but I was so sick I had to have him put me down so I could crawl down the stairs. Even though I made it down stairs I threw up all of my oral medication I had just taken. Can I win?! Finally tucked in my bed I was able to receive a beautiful blessing and fell asleep a few minutes after and woke up feeling a 100% better.

Hospital...12th floor and loving the mornings

Hospital...a home away from home

My hospital stay was initially 2 days. This then turned into almost 2 weeks. After the MRI Dr. Fantle suggested that I get a lumbar puncture (spinal tap) and a chest x-ray. I dreaded the lumbar puncture, but when the time came the amazing staff at IMC was able to calm my nerves and I honestly could not feel the procedure what so ever. The only draw back was the next day it hurt. After 4 days on the 14th floor I was transferred to the 12th neurological rehab floor because I still walked like a drunk. The 12th floor was amazing and they took amazing care of me. I had physical and occupational therapy 6 times a day, so my day was always jammed packed with my wonderful visitors, OT, and PT. The amazing PT were able to get me walking normal again (well I thought it was normal) I honestly can not remember the last time I walked with out holding on to a wall. I always remember telling my husband that I would cry the first time I could walk normal again. Finally the time came for me to head home. I was sent home with an awesome walker, which I truly do love, although I look like a 90 year old trapped in a 21 year olds body. You would be surprised how many stares from others you receive. I do miss the hospital and all the wonderful people who assisted in my recovery.

I may look funny, but this is amazing for me!

Thursday, March 18, 2010

Expected...


My grandpa had multiple sclerosis. When he was diagnosed at 28 there was not much hope, He finished the last 5 years of his life in the V.A. hospital. When I began to have these unknown symptoms I was taking a human anatomy course, low and behold we studied MS. We focused on the disease for only a few minutes, after class I felt like a hypochondriac. I went home typed in MS symptoms and there it was I had the majority of the symptoms. My family (who knew of my struggles already) wanted to deny the fact that this could be a possibility. The only person in my life that thought I truly did have MS was my father. I saw the fear in his face immediately. As the weeks went on my dad was constantly asking about my symptoms. Every time I had the hiccups he would fret that I just may be another repeat of his father (who had hiccups for quite a few years due to MS). I must say my dad is my hero; I am a daddy’s girl. I look up to him more than I can explain. He presents such strength and grace in every way, he makes me proud to be a Snarr. And he was the one to finally have me see a neurologist. A week before being admitted into the hospital I came down with a minor cold. This completely shut down my body and I could barley walk. I would call my dad and just sob because I knew I needed to see a doctor as soon as possible, but my neurologist appointment was not for another week (neurologist can take months to get into, I made my apt early February and got a mid March appointment) my father made a few phone calls and worked his Mayor magic (which he hates to do) and got me an appointment for 3 days later. February 22 I met with Dr. Chocair at IMC after talking to me and running a few small tests I was admitted into the hospital. I remember crying with a smile on my face because I was so happy to be taken care of; that I was finally going to know what was wrong with me. That night I had an hour and a half MRI and the next afternoon the results were in. I was diagnosed with multiple sclerosis. I remember having the biggest grin on my face when he told me. I don’t know why, I was just happy to know and knew that I was in the right hands. My next hurdle was telling my family.

To Begin........

To begin…in July of 2009 I began to notice something not right, while dancing (what I love to do) in a modern dance class I notice my left leg did not want to agree with what my brain wanted it to do. I could not rely on my left leg any longer. Flash forward a month…my leg no longer bothered me, but while walking to class I was forced to slow down or else I felt as though I was going to fall over. My balance was now going. One night after class my right eye felt as though I had been punched, I thought I had only strained it reading. But while driving my right eye sight was blurring. Although this was off key for me, a 21 year old life long dancer and fully active young woman it failed to worry me. Jump to December…Making a trip to the mall to buy my wonderful husband a Christmas present. Just a few strides into the mall and I knew something was not right. The mall was crawling with hundreds of people (As it usually is around Christmas) and I could not distinguish one face. Everything was a blur, I could not focus. The longer I walked the more my left leg began to tingle and eventually gave out continuously. I made a trip to the woman’s lounge to sit and catch my breath. Then I called my husband and voiced concern. This was the beginning of knowing something was seriously wrong but, was too fearful to do anything about it.