My family walked in the MS walk for me in Chicago on Sunday. My sister Kelly raised over 1000 dollars. My Dad also raised over 1000. It meant the world to me that they did this in my honor. I have the best family ever. Here is my sister, her daughter, and her husband.
Here are some great friends of our family Andy and Debbie. Debbie has had MS since I have known her. She is really brave and has been a big help to me since I got diagnosed. She is affected much more than me by this crummy disease and always has a smile on her face. She truly amazes me. I would love for someone to find something to reverse this so she could get her life back to normal.
Here is my Dad with Andy, Debbie's husband and his friend Larry. These three guys have been raising money for MS for years. Who would have thought that I would have gotten this.
My mom, Jeanie, Buzz, Larry, my dad, Kelly, and Ella.
Here is the team for Debbie. I got diagnosed with MS in September of 2006. I had been to the doctor a few times telling him I just didn't feel right. The first few times they chalked it up as stress related from raising three small boys. He put me on an anxiety medication in August. I thought I was having a reaction to the anxiety meds when I got so sick I couldn't pick my head up. I had very strange sensations running through my body, hot, cold, and tingling. I was in bed for three days with hot flashes, cold sweats, dizziness, and just didn't feel right. I had been feeling numb in my toes and would get strange sensations in my spine. I had become very sensitive to heat, sound, and smell. I would get nauseated more often than not. The biggest thing I noticed was my right side did not feel right at all. I went back to the doctor and explained all this. I could tell by his reaction that he was worried. He sent me in for an MRI, this scared the shit out of me since I'm claustrophobic. I remember trying to read the person who was doing the MRI to see if they were acting strange or if they saw something. I asked her if she saw anything and she told me she couldn't tell me. This freaked me out, I thought if there was nothing she would have said. I had to wait five days to find out everything. So many crazy thoughts were going through me head. I will never forget when the Doctors office called and the nurse said hold on the Doctor needs to talk to you. I knew it was something since all the test I have ever done in my life the nurse has always been able to tell me the test came back fine. I waited for the doctor to come to phone with crazy thoughts racing through my head. He got on the phone and said you don't have a brain tumor which is what I thought I was testing you for but you do have a lot of lesions on your brain. Lesions?????? What is this???? He told me he was 99 percent sure it was MS but he wanted me to see a Nero surgeon. I was numb at best. At one point he asked if I was ok, I was home alone with three boys at the time. I managed to say yes I'm ok. We hung up the phone and I called my mom. I went into the closet to get away from the kids because I didn't want to scare them since I knew I was about to break down. My mom started crying right away as did I. She told me everything would be ok. I hung up the phone with her and called hubby who had just quit his job to take on something else. Men never take things good that they can't fix. Hubby came home and his mom came over shortly after. I remember his mom giving me a huge hug and telling me she wished she could take this from me. You know there are certain times in your life when you know someone means what their saying, this was one of them. Hubby went back to his job since they have always been so good to us. I called the neurologist and couldn't get in for a month. During this month I "googled" MS, big mistake. I spent the next month freaked out that I was going to lose my eyesight or my legs any day. I didn't sleep, eat, or do anything for a month. I dropped twenty pounds, I woke up with nausea about every hour on the hour. This was one tough time in my life. I finally got in with the neurologist and he sent me in for a bunch of more test including another MRI. The testing took about another month. After the test came back he was 99 percent sure it was MS.
The only medications for this disease were injectables. I did not like the sound of that at all. My body has always been sensitive to medication anyway. He put me on a daily injection. I hated this I always dreaded giving myself a shot. One month after starting these injections hubby got transferred to Austin. He had one week to be there. I didn't want to go at all, we had no family or friends there and I was unsure of what I would be facing with this. He moved at the end of February. I stayed behind till the end of May so the kids could finish out the school year. I would drive to Austin on the weekends to house hunt. After we bought a place I was driving to the house to paint for the weekend. I started feeling strange while driving nothing looked right and my body felt numb. I felt as if I was on a boat. I rolled down the windows to try and get some fresh air. Every time I went up hill or down it felt like I was on roller coaster. The best way I can describe it is it was as if everything was exaggerated. The next morning I called the doctor he told me this was common with MS when your overtired or stressed. Damn of course I'm tired and stressed my world was turned upside down, we are moving, and I'm pretty much a single mom till we move. After being on the medication for a few months I had a bad reaction to it. Right after I did it my face got red and hot, I had a grandma hot flash, and my ears were making this whaaa whaaaa noise. The reaction only last 15 minutes but it was scary. The doctor kept me on the medication and said there was a good chance that would not happen again. A few more months went by and every time I did the injection I feared that reaction. I got another bad reaction but it was alittle worst than the last one. The doctor still kept me on the stuff, it took me a week to have the courage to do another injection. I was ok again for a few more months. When I had a third reaction this was as bad as the first two, I had all the same symptoms as the last time but now I could not pick my head up. I crawled to the bathroom throw up and wet my pants. The whaaa whaaaa in my ears was painful and it felt like my body was a fire. This lasted about 20 minutes and I really thought I was dying. That night my body shook all night. I think it was a combo of the reaction and my nerves. The doctor took me off the medication finally. He wanted me to go on another injection, I just couldn't do it. The one I was on that I reacted so bad to was supposed to be the least invasive of the medications. This is just one reason that it is so important to raise money for MS. They are working towards an oral medication for this disease now.
I don't usually talk about having MS. Today I'm still not taking any medications. I have been lucky because my lesions have not grown any in the last few years. I have to get more sleep than most people because MS causes a lot of fatigue. When you have MS people sometimes think it's not that bad because you don't look sick. I still have the 15 lesions on my brain that cause me problems on a daily basis. What people don't know about me is that sometimes everything goes sideways to me and the room seems to slant. This used to send me in a panic attack but I have gotten more used to it. I still get heat sensitive and get nauseated. I'm dizzy a lot, and my balance is slightly off. Smells and lights sometimes bother me. The body hurts on the right side almost always. My speech slurs at times and my bed spins without drinking. I'm super clumsy, my mind has a hard time concentrating. I wake up and get a squeezing sensation in my body sometimes at night. I have had mini seizures. I can't stand for long because my legs start to get wobbly. When I wake up I'm always numb up to my knees and sometimes in my hands. I have to sometimes think about moving a body part because my brain does not function the way it should, doctors describe that as a short in the brain from the lesions. So even though I don't look sick I fight daily with these symptoms. This is another reason it's important to donate to MS. Right now there is nothing that can reverse or shrink the lesions that are already there. Like I said I hate talking about this and I don't usually, I just want the people who walked and donated for me to know that it means a lot and it is important. Thank you to everyone who had a part in that day.
Sorry for the downer post. Don't feel sorry for me I'm thankful everyday that it is me and not my kids with this. Of course I have days where I feel sorry for myself but their are so many people who have it worst off then me. We will all eventually have to face something bad in our lives. It's how we deal with it that counts. I try to keep a positive attitude about it. If my lesions start to grow I will have to go back on medication. I'm praying when that happens the oral medication will be ready. I wish sometimes I didn't know I had this since "ignorance is bliss", I probably have made it worst at times by panicking. When you have MS you don't really like to think to your future. You fear everything since this disease can eventually affect every aspect of your body and make you totally handicap. I wrote this to bring some more awareness to the disease. Thanks again for everyone who supports MS. I will close this with I'm so lucky because my sister Kelly is my best friend.
My mom, Jeanie, Buzz, Larry, my dad, Kelly, and Ella.
Here is the team for Debbie. I got diagnosed with MS in September of 2006. I had been to the doctor a few times telling him I just didn't feel right. The first few times they chalked it up as stress related from raising three small boys. He put me on an anxiety medication in August. I thought I was having a reaction to the anxiety meds when I got so sick I couldn't pick my head up. I had very strange sensations running through my body, hot, cold, and tingling. I was in bed for three days with hot flashes, cold sweats, dizziness, and just didn't feel right. I had been feeling numb in my toes and would get strange sensations in my spine. I had become very sensitive to heat, sound, and smell. I would get nauseated more often than not. The biggest thing I noticed was my right side did not feel right at all. I went back to the doctor and explained all this. I could tell by his reaction that he was worried. He sent me in for an MRI, this scared the shit out of me since I'm claustrophobic. I remember trying to read the person who was doing the MRI to see if they were acting strange or if they saw something. I asked her if she saw anything and she told me she couldn't tell me. This freaked me out, I thought if there was nothing she would have said. I had to wait five days to find out everything. So many crazy thoughts were going through me head. I will never forget when the Doctors office called and the nurse said hold on the Doctor needs to talk to you. I knew it was something since all the test I have ever done in my life the nurse has always been able to tell me the test came back fine. I waited for the doctor to come to phone with crazy thoughts racing through my head. He got on the phone and said you don't have a brain tumor which is what I thought I was testing you for but you do have a lot of lesions on your brain. Lesions?????? What is this???? He told me he was 99 percent sure it was MS but he wanted me to see a Nero surgeon. I was numb at best. At one point he asked if I was ok, I was home alone with three boys at the time. I managed to say yes I'm ok. We hung up the phone and I called my mom. I went into the closet to get away from the kids because I didn't want to scare them since I knew I was about to break down. My mom started crying right away as did I. She told me everything would be ok. I hung up the phone with her and called hubby who had just quit his job to take on something else. Men never take things good that they can't fix. Hubby came home and his mom came over shortly after. I remember his mom giving me a huge hug and telling me she wished she could take this from me. You know there are certain times in your life when you know someone means what their saying, this was one of them. Hubby went back to his job since they have always been so good to us. I called the neurologist and couldn't get in for a month. During this month I "googled" MS, big mistake. I spent the next month freaked out that I was going to lose my eyesight or my legs any day. I didn't sleep, eat, or do anything for a month. I dropped twenty pounds, I woke up with nausea about every hour on the hour. This was one tough time in my life. I finally got in with the neurologist and he sent me in for a bunch of more test including another MRI. The testing took about another month. After the test came back he was 99 percent sure it was MS.The only medications for this disease were injectables. I did not like the sound of that at all. My body has always been sensitive to medication anyway. He put me on a daily injection. I hated this I always dreaded giving myself a shot. One month after starting these injections hubby got transferred to Austin. He had one week to be there. I didn't want to go at all, we had no family or friends there and I was unsure of what I would be facing with this. He moved at the end of February. I stayed behind till the end of May so the kids could finish out the school year. I would drive to Austin on the weekends to house hunt. After we bought a place I was driving to the house to paint for the weekend. I started feeling strange while driving nothing looked right and my body felt numb. I felt as if I was on a boat. I rolled down the windows to try and get some fresh air. Every time I went up hill or down it felt like I was on roller coaster. The best way I can describe it is it was as if everything was exaggerated. The next morning I called the doctor he told me this was common with MS when your overtired or stressed. Damn of course I'm tired and stressed my world was turned upside down, we are moving, and I'm pretty much a single mom till we move. After being on the medication for a few months I had a bad reaction to it. Right after I did it my face got red and hot, I had a grandma hot flash, and my ears were making this whaaa whaaaa noise. The reaction only last 15 minutes but it was scary. The doctor kept me on the medication and said there was a good chance that would not happen again. A few more months went by and every time I did the injection I feared that reaction. I got another bad reaction but it was alittle worst than the last one. The doctor still kept me on the stuff, it took me a week to have the courage to do another injection. I was ok again for a few more months. When I had a third reaction this was as bad as the first two, I had all the same symptoms as the last time but now I could not pick my head up. I crawled to the bathroom throw up and wet my pants. The whaaa whaaaa in my ears was painful and it felt like my body was a fire. This lasted about 20 minutes and I really thought I was dying. That night my body shook all night. I think it was a combo of the reaction and my nerves. The doctor took me off the medication finally. He wanted me to go on another injection, I just couldn't do it. The one I was on that I reacted so bad to was supposed to be the least invasive of the medications. This is just one reason that it is so important to raise money for MS. They are working towards an oral medication for this disease now.
I don't usually talk about having MS. Today I'm still not taking any medications. I have been lucky because my lesions have not grown any in the last few years. I have to get more sleep than most people because MS causes a lot of fatigue. When you have MS people sometimes think it's not that bad because you don't look sick. I still have the 15 lesions on my brain that cause me problems on a daily basis. What people don't know about me is that sometimes everything goes sideways to me and the room seems to slant. This used to send me in a panic attack but I have gotten more used to it. I still get heat sensitive and get nauseated. I'm dizzy a lot, and my balance is slightly off. Smells and lights sometimes bother me. The body hurts on the right side almost always. My speech slurs at times and my bed spins without drinking. I'm super clumsy, my mind has a hard time concentrating. I wake up and get a squeezing sensation in my body sometimes at night. I have had mini seizures. I can't stand for long because my legs start to get wobbly. When I wake up I'm always numb up to my knees and sometimes in my hands. I have to sometimes think about moving a body part because my brain does not function the way it should, doctors describe that as a short in the brain from the lesions. So even though I don't look sick I fight daily with these symptoms. This is another reason it's important to donate to MS. Right now there is nothing that can reverse or shrink the lesions that are already there. Like I said I hate talking about this and I don't usually, I just want the people who walked and donated for me to know that it means a lot and it is important. Thank you to everyone who had a part in that day.
Sorry for the downer post. Don't feel sorry for me I'm thankful everyday that it is me and not my kids with this. Of course I have days where I feel sorry for myself but their are so many people who have it worst off then me. We will all eventually have to face something bad in our lives. It's how we deal with it that counts. I try to keep a positive attitude about it. If my lesions start to grow I will have to go back on medication. I'm praying when that happens the oral medication will be ready. I wish sometimes I didn't know I had this since "ignorance is bliss", I probably have made it worst at times by panicking. When you have MS you don't really like to think to your future. You fear everything since this disease can eventually affect every aspect of your body and make you totally handicap. I wrote this to bring some more awareness to the disease. Thanks again for everyone who supports MS. I will close this with I'm so lucky because my sister Kelly is my best friend.
4 comments:
At the risk of sounding completely ignorant, why can't they remove your lesions? Are you currently doing daily shots? I'm in awe - I just clicked to see pictures - I had no idea. Such an inspiration!!
Wow, that was totally sad and touching. Maybe if you had written this BEFORE the walk, I could have collected a ton more money ;) I kid, I kid. Love you!
I am so glad you wrote this and even more glad I donated and walked!!!
What a truly wonderful story! No wonder I felt so connected from your first blog I read. Thank you so much for sharing your story. As you know MS Sucks! I often feel people who don't have this crappy disease get it. If you ever need someone to talk to or vent you know where to find me:) I'm so getting addicted to this new blogging thing. lol
Post a Comment