Mother struggling with MS receiving help from Boy Scout

Today’s story is about an mother struggling with MS. Here is the link to the story.

There is so much more to her story that I was not able to put in the article. Here is what Tambi wrote about her struggle with MS.

Tambi’s MS Story

In April 2007, I was pregnant with my 2nd child and had just started a new job, when I had a mini stroke while at work, and had to be taken to the hospital. Along with the stroke I lost all the feeling in my legs. I had been paralyzed from the waist down a few times in the past (starting when I was 17 years old in 1999 after a head injury). Each time this happened I would go to the hospital, they would run some tests, tell me they couldn’t find anything other than a few spots on my brain that they assumed were from my head injury (even though there was a new spot with each scan), and I would be sent on my way. I was in a wheelchair for a short time after each episode while I would exercise and train my body to walk again. I always got back to “about 90%” normal (according to the doctors), and told to be careful, and not bump my head again.

After several years of not getting any results from several different doctors, I was finally referred to a Neurologist after my 2007 episode. Because of me being pregnant, they were unable to do the extensive MRI scans they had done in the past that had shown the spots on my brain, so they had no choice but to do a Spinal Tap. When the results came back from that, the Neurologist gave me the news “I’m very sorry, but you have Multiple Sclerosis”. He let me know the MS explains the spots on my brain, my episodes of not being able to walk all of a sudden, my poor memory, and my blurry vision.

As hard as it was to take the news of having MS, I was glad they finally knew what was wrong with me. My older sister had been living with MS for several years before I was diagnosed, and my younger sister was going through her own MS diagnosis at the same time as me. I knew I had a great family support system because we had all seen my older sister overcome the obstacles of MS. However, it took a while to figure out why my sister’s MS just affected one side of her face, and my MS made me not walk. I couldn’t understand why I got MS, and why it took so much determination to recover from the episodes.

Now, 7 years later, I have 4 sons (ages 9, 6, 3, and 1) and an amazing husband who has stood by my side through every MS exacerbation throughout the years. As a mother of 4 young boys life can get pretty crazy, and it requires a lot of energy. When my MS is in remission (when I’m not having problems with it) we take full advantage of the energy I have and play hard. When I have an MS exacerbation, our lives are a little different, but we have tried to not make it turn our sons’ world upside down. In order to make the transition as painless as possible, we sat down with our sons a year ago and together we developed a system that everyone agrees with that is followed regardless of my health. Our oldest 3 boys have household chores they do that match their abilities. Each child has put together their own daily schedule that includes time for chores, homework, and a good amount of play time that they are in charge of tracking, and love marking each item off as it’s finished. These do not make the transition stress-free, but does make it a little easier. My 1-year-old does not seem too affected by it yet. He enjoys just sitting in my lap and riding around in my wheelchair. My 3-year-old enjoys the wheelchair as well, whether it’s pushing me around or cuddling on my lap as I’m being pushed around by someone else. The part that is hardest on him is the fact that his bedroom is downstairs, so I am unable to tuck him in at nights, which breaks my heart to see him so sad and want that so much. My 6-year-old enjoys helping out as much as he can around the house. He also loves pushing me in my wheelchair. He has a hard time with me not being able to play outside with him, but can be easily distracted if his friends are playing outside. My 9-year-old does the most (aside from

my husband). He really shows how responsible he is, and takes charge of the house when my husband is at work. He has no problems helping me take care of his brothers, even if it means changing a few diapers. He happily does the laundry (since our laundry room is in the basement), does dishes, cleans any room he sees needs cleaned (including sweeping and vacuuming), and helps with anything else I need help with around the house, until I send him away to play with friends, because, after all, he is still young and needs to enjoy his childhood. For me, I have a hard time watching how much my children and husband have to do to help me out and to help around the house. I am a very independent person, so watching others do things I feel I should be able to do has been a real challenge. I struggle with watching my children play outside, and not being able go out and play with them. I also struggle with watching how much the MS affects everyone in the family. My sons ask me every day if I’m feeling better, and if I’m going to get better, or if I’m ever going to walk again so I can go outside and play with them again. However, I have realized my children have learned valuable life lessons they may not have learned at such a young age if I didn’t have MS. They have learned responsibility, empathy, service, patience, and the importance of family.

In March 2014 my most recent MS exacerbation happened. This time it decided to go all out. Instead of just affecting my legs, my entire body became weak from the neck down. It affected my speech by making it slurred, slow, and quiet. I developed an eye twitch and blurry vision.  I get a tingling sensation in my face when I talk for extended periods of time. My short-term memory and part of my long-term memory are almost completely gone. I get involuntary muscle spasms in my arms and legs. I frequently feel dizzy and lightheaded. All the muscles in my body feel tight and painful throughout the day. I get daily headaches that require medicine to allow me to perform basic tasks. And I get tremors in my arms. After getting my typical treatment that I have received with all my past exacerbations, I did not recover as fast as I had in the past. In meeting with my neurologist I was informed my MS has spread and he is not hopeful of me having a full recovery this time, and I may be wheelchair-bound permanently.

I still don’t fully understand the disease. However, I do understand that it affects everyone differently as all three girls in my family have different symptoms, and we don’t get to choose what type of MS we get (wouldn’t that be nice to have a choice in how it affects you). I also understand that although I don’t have a choice in when it hits (as I could be fine going to bed one night, and wake up the next morning not able to walk, which gets interesting with 4 little boys running around), but I do have a choice in how I approach it. I have decided I will NOT allow MS to control me. I will NOT stop fighting. When I am unable to walk, I will do whatever it takes to walk again, and exercise to get my strength back. When I have random memory loss, I will laugh about it. With each symptom I experience, I work my way through it and do everything I can to improve and live a normal life. I know a day may come when I may not be able to overcome all the symptoms, and I do not know when that day will come. However, I will NEVER stop fighting.

I will NOT allow MS to control me!

 

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