MS 150k Reflections
When I think about my MS 150k experiences (I have participated in 4 tours now), I would have to say that 1998 was most memorable for several reasons…
1. It was HOT but I didn’t get sunburned.
2. It was the first year that I didn’t have to walk any of the hills (which meant I met my physical goal.)
3. I reached my financial goal in that I raised over $5,000 (thank you Alta Software, Inc. for matching).
4. It was the first year I rode knowing I had MS.
Number 4 may surprise a lot of you, especially most of my fellow Team Andersen teammates who I rode with this year. On April 10, 1997, I woke up and my leg was asleep. I wasn’t concerned at first, but that soon changed as the numb feeling continued for 3 weeks. I was referred to a neurologist. I remember asking him during my first visit if I’d be allowed to ride in the 1997 MS150k. Little did I know that I’d be sitting in his office two months later being informed that I had MS.
In my previous rides, I knew very little about the disease. I had read the information in the brochure. The picture I had in my mind of a person with MS was of Darryl, the man most of us gave a high-five to as we started and finished our rides. What I didn’t realize was how the disease attacked different people in different ways. For most people, the disease comes and goes in the form of an attack. I’ve had one official attacks and it was mild. Multiple sclerosis (non-technically) translates to multiple scars. The scarring occurs in the brain and/or spinal cord. The reason why the disease effects people differently is that the scars appear in different places, over different periods of time, and depending on the severity of the disease, are repaired at different speeds. Between attacks, I feel fine which was evidenced during the ride since I would conquer the hills quicker than my friends. Unfortunately, the disease is progressive and chances are that my body won’t be able to fully repair the scars as it has thus far. If this happens, there is a high probability that my mobility will be permanently affected.
As strange as this may sound, however, I feel lucky for many reasons that this was the disease I was diagnosed with. For all the tests I went through (spinal taps are NOT fun) and all of the possible diseases I could have had, I am lucky it was MS. First, MS has been getting a lot more attention recently (and more research funds) thanks to the many benefits the National MS Society holds – MS Read-a-thon, MS Walkathon, MS 150k, MS Sports Night, etc. Second, there have been some major break-throughs in recent years that have produced 3 new drugs that have been shown to reduce the number of attacks and therefore assist in prolonging the onset of the permanent disabilities a person with MS may have as the disease progresses. I am currently taking one of those drugs. (My awesome husband gives me a shot once a week now.) Last, I feel lucky that there are people like YOU that are willing to go out there and ride 50 – 100 miles, sore butts and all. Thank you for participating in the ride. Hope to see you out there next year and I challenge you to raise more funds and get more friends to join in all of the fun.
Monday, November 26, 2007
Lucky (Wo)Man
Back in 2002, Michael J Fox wrote a book entitled Lucky Man about his dealing with his diagnosis of Parkinson’s Disease (PD). And aside from the different name of the disease, everything else felt like he was talking about MS.
It is a great read and I recommend it for anyone with MS, newly diagnosed or living with it for years. In it he talks a lot about his childhood, his career, Family Ties and all of these stories are interesting and humorous. But he talks a lot about the diagnosis and it feels like he is talking about what I went through and probably a lot of other people as well. (This book was recommended to me by another person with MS.)
Michael J Fox talks about not believing he had PD. When I first was diagnosed with MS, I often wished I had never gone to see the neurologist. Thanks to my insurance at the time, I needed a referral. And by the time I got an appointment, my attack was over – I felt fine. I almost canceled the appointment. My husband said I should still go since we didn’t know why the tingling had happened. But if I hadn’t gone, I might have gone 5 years before having another attack, and being diagnosed. All of those years I could have not known. And a lot of times, I wished I had not known. Looking back, I realize that it was better to know than not, but I often wondered.
Then Mr. Fox talks about whether he caused this disease. How many times did I think that? Now, I hear that there is research out there that may link Epstein Barr (Mono) to MS as a potential cause factor. And by running myself down, I had gotten Mono in high school. Did I cause the MS because I got mono. I am a type-A personality and I am still running myself down. Of all my flare ups (aside from the pregnancy attacks which I blame hormones), I think I have caused each one. And I know I am doing it but I keep saying, if I can just hold out a little longer, it’ll be fine. So I know I am to blame for the flare ups, but did I cause the disease in the first place?
That kinda brings me to the next thing Mr. Fox talks about which is finding clusters. I am always comparing my disease to others I know. MS is such an individual disease that it is hard to find similarities which is part of the problem with finding the cause. But when I find the similarities I want to tell everyone. But for every similarity I find, there are 20 differences which negate the similarity.
Lastly Mr. Fox talks about telling (or not telling for so long). I went through that a lot in the first few years. In the first year, I told very few people. I didn’t want anyone to treat me differently just like him. He said that he didn’t feel like he was deceiving anyone, it was his problem and his personal business. About a year or so after being diagnosed, I wrote an article after the MS Bike Ride and that opened up the telling part. I still didn’t tell a lot, but now if it comes up, I’ll say something. It’s not as if I put a sign around my neck, but if someone asks me if I know someone with MS (because I am doing the Walk-MS, or Bike-MS or Challenge-MS -the new logos), I’ll say that I have MS. It gives me a chance to educate the person if the person is not familiar with MS. I think that’s what Michael J Fox did once he came public with the Parkinson’s. I actually wrote about telling a little on my share post at http://www.healthcentral.com/multiple-sclerosis/c/6191/15571/to/ .(I am writing on this site as well.)
So am I a lucky (wo)man like Michael J Fox. I’d like to think so. There are so many things that I feel I am lucky to have. I am going to post an article I wrote for the MS Bike Ride and I talk about being lucky in it – just remember it was written in 1998 and a lot has changed for the better which means I am even luckier.
It is a great read and I recommend it for anyone with MS, newly diagnosed or living with it for years. In it he talks a lot about his childhood, his career, Family Ties and all of these stories are interesting and humorous. But he talks a lot about the diagnosis and it feels like he is talking about what I went through and probably a lot of other people as well. (This book was recommended to me by another person with MS.)
Michael J Fox talks about not believing he had PD. When I first was diagnosed with MS, I often wished I had never gone to see the neurologist. Thanks to my insurance at the time, I needed a referral. And by the time I got an appointment, my attack was over – I felt fine. I almost canceled the appointment. My husband said I should still go since we didn’t know why the tingling had happened. But if I hadn’t gone, I might have gone 5 years before having another attack, and being diagnosed. All of those years I could have not known. And a lot of times, I wished I had not known. Looking back, I realize that it was better to know than not, but I often wondered.
Then Mr. Fox talks about whether he caused this disease. How many times did I think that? Now, I hear that there is research out there that may link Epstein Barr (Mono) to MS as a potential cause factor. And by running myself down, I had gotten Mono in high school. Did I cause the MS because I got mono. I am a type-A personality and I am still running myself down. Of all my flare ups (aside from the pregnancy attacks which I blame hormones), I think I have caused each one. And I know I am doing it but I keep saying, if I can just hold out a little longer, it’ll be fine. So I know I am to blame for the flare ups, but did I cause the disease in the first place?
That kinda brings me to the next thing Mr. Fox talks about which is finding clusters. I am always comparing my disease to others I know. MS is such an individual disease that it is hard to find similarities which is part of the problem with finding the cause. But when I find the similarities I want to tell everyone. But for every similarity I find, there are 20 differences which negate the similarity.
Lastly Mr. Fox talks about telling (or not telling for so long). I went through that a lot in the first few years. In the first year, I told very few people. I didn’t want anyone to treat me differently just like him. He said that he didn’t feel like he was deceiving anyone, it was his problem and his personal business. About a year or so after being diagnosed, I wrote an article after the MS Bike Ride and that opened up the telling part. I still didn’t tell a lot, but now if it comes up, I’ll say something. It’s not as if I put a sign around my neck, but if someone asks me if I know someone with MS (because I am doing the Walk-MS, or Bike-MS or Challenge-MS -the new logos), I’ll say that I have MS. It gives me a chance to educate the person if the person is not familiar with MS. I think that’s what Michael J Fox did once he came public with the Parkinson’s. I actually wrote about telling a little on my share post at http://www.healthcentral.com/multiple-sclerosis/c/6191/15571/to/ .(I am writing on this site as well.)
So am I a lucky (wo)man like Michael J Fox. I’d like to think so. There are so many things that I feel I am lucky to have. I am going to post an article I wrote for the MS Bike Ride and I talk about being lucky in it – just remember it was written in 1998 and a lot has changed for the better which means I am even luckier.
Monday, October 29, 2007
A country girl at heart
I am a country fan, I’ll admit. And that is strange given that I grew up in Philadelphia where WMMR (Rock) was everyone’s favorite station. But I am a country fan now. And as long as I can listen to the music (and not the kids CD), I do. A few years back, Tim McGraw came out with a song called “Live like you were dying”. And in listening to the lyrics, I thought of my MS, not that MS is going to make me die in a few months but what a concept.
In the song, a man talks about what he did when he was faced with some bad medical news. And the whole point of the song was that the medical news did not stop him from living his life. If anything it made him go out a try things that he may never have tried. It made him a better friend, son and husband. This is the part that reminds me of my MS.
Ok, I have not and will never go sky-diving like the man in the song nor bull riding but I did go
mountain climbing. I have done a lot of things that in part were done because of the MS. I definitely have the thought of “will I be able to do this later or not” go across my mind. And it is a decision factor in what I choose to do today versus tomorrow. Now, I am not saying that I live in today and never plan in the future. I plan in the future all the time and most times MS isn’t even a consideration. We are going to Disney next year and I am not expecting there to be any problems with the MS. But there are definitely some things that I did sooner rather than waiting.
A few years before the song was released, I was asked to speak at a charity event for MS. And of the 200 or so attendees, about 25 actually stopped what they were doing to listen. The rest, the invincible I call them, stood in the back at the bar and kept up their own conversations. I wanted to yell out to them to listen because they too may be faced with a diagnosis, even if it was not MS. I remember being invincible at 22, 23, 24 yrs old, as most of them were around those ages. I was a picture of health (maybe not as toned as I should’ve been). But that ended June 25, 2007 when the doctor said you have MS. Then I didn’t feel invincible at all.
After the speech, I was talking to a few people that had listened and they commented on the lack of attention by so many people. And one of the people in the group said that the people who listened did so because they care – they have MS or someone they know has MS or another chronic disease. And the people that didn’t listen will listen when it becomes real to them. The song reminds me of the invincibles because at the end of the chorus, McGraw says “I hope someday you get the chance to live like you were dying.” It’s kind of what I wanted to say not that I would wish MS or any other disease on a person, but to live life to the fullest is something I struggle to do everyday.
In the song, a man talks about what he did when he was faced with some bad medical news. And the whole point of the song was that the medical news did not stop him from living his life. If anything it made him go out a try things that he may never have tried. It made him a better friend, son and husband. This is the part that reminds me of my MS.
Ok, I have not and will never go sky-diving like the man in the song nor bull riding but I did go
mountain climbing. I have done a lot of things that in part were done because of the MS. I definitely have the thought of “will I be able to do this later or not” go across my mind. And it is a decision factor in what I choose to do today versus tomorrow. Now, I am not saying that I live in today and never plan in the future. I plan in the future all the time and most times MS isn’t even a consideration. We are going to Disney next year and I am not expecting there to be any problems with the MS. But there are definitely some things that I did sooner rather than waiting.
A few years before the song was released, I was asked to speak at a charity event for MS. And of the 200 or so attendees, about 25 actually stopped what they were doing to listen. The rest, the invincible I call them, stood in the back at the bar and kept up their own conversations. I wanted to yell out to them to listen because they too may be faced with a diagnosis, even if it was not MS. I remember being invincible at 22, 23, 24 yrs old, as most of them were around those ages. I was a picture of health (maybe not as toned as I should’ve been). But that ended June 25, 2007 when the doctor said you have MS. Then I didn’t feel invincible at all.
After the speech, I was talking to a few people that had listened and they commented on the lack of attention by so many people. And one of the people in the group said that the people who listened did so because they care – they have MS or someone they know has MS or another chronic disease. And the people that didn’t listen will listen when it becomes real to them. The song reminds me of the invincibles because at the end of the chorus, McGraw says “I hope someday you get the chance to live like you were dying.” It’s kind of what I wanted to say not that I would wish MS or any other disease on a person, but to live life to the fullest is something I struggle to do everyday.
Monday, October 1, 2007
I did IT!
On September 28, 29 & 30th, 2007, I, along with approximately 350 others, walked 50 miles in the MS Challenge Walk here in D.C. This was my second year doing it (it was the events 5th year). What an experience! I recommend it to anyone – if you have MS, a loved one has MS, a friend has MS. It is the best event the MS Society puts on because it REALLY brings the mission to end the devastating effects of MS home.
I have been blessed to be able to participate in a lot of the fundraising events for the MS Society over the years. I was talking to a guy during the walk and realized that I have participated in 17 events (10 MS 150Ks, 5 MS Walks & 2 MS Challenge Walks). And the MS Challenge Walk exceeds the others for me hands down. The walk is hard and I would say it is not for everyone except that there were people using walkers at the start and the finish and that is all they walked. One woman used a scooter for all 50 miles and then walked to the finish line using her walker. So the event is for everyone, even if you don’t walk the 50 miles and walk 2 blocks instead. The event is so well staffed that you don’t have to worry about assistance because it is there all the time. From the SAG (Support and Gear) vehicles driving by with their thumbs up every 5 minutes or so to the guys & gals who stop the traffic so you can cross a busy street to your fellow walkers (with cell phones), you know you are going to be ok.
The best part of the weekend for me was the Candlelight Service on Saturday night. Here, a few selected people got up and talked about why they are participating in the event. I won’t go into any details of what was said but just focus on the underlying theme. And that theme is hope. Everyone has the hope that by walking, they are helping to find a cure so the devastating effects of this disease will be taken away from themselves, their spouses, their sons/daughters, their moms/dads, their friends.
You get a sign that you can wear for the weekend that says why you are walking. I said “I am walking for my family.” I walked so that I can keep playing “chase” with the girls. I walked so I can keep being the same wife my husband married 11 years ago. And most dear to my heart, I walked so researchers have the financial means to find a cure so the girls (E & A) do not get this disease when they get older. I know the risks are still very small that E & A would get MS, but the risks are double that of the general population. So if I can do my part to help find a cure in 15 years (when E turns 20), so that neither of my daughters get MS, I am going to do everything I can to do so.
Now the one limitation to the walk is the fundraising minimum. I heard from quite a few people that said they could do the walk, but couldn’t raise the money. It may vary by chapter and our chapter’s minimum is $1,500 which is a lot of money. But the MS Society helps out with the fundraising by giving you ideas on what to do. I was very blessed by generous friends and family this year in that I raised over $8,000. I know I probably could have done more if I had started earlier. I am often amazed at what people are willing and able to donate. Someone gives you $100 because their sister has MS and you didn’t even know it. It really is amazing because as you walk, you know you have the support of all of the people who donated on your behalf and that helps you to keep walking. I am so thankful for all of my friends and family that gave me their support.
So if you are able, you should check out the MS Challenge Walk, you won’t be disappointed.
I have been blessed to be able to participate in a lot of the fundraising events for the MS Society over the years. I was talking to a guy during the walk and realized that I have participated in 17 events (10 MS 150Ks, 5 MS Walks & 2 MS Challenge Walks). And the MS Challenge Walk exceeds the others for me hands down. The walk is hard and I would say it is not for everyone except that there were people using walkers at the start and the finish and that is all they walked. One woman used a scooter for all 50 miles and then walked to the finish line using her walker. So the event is for everyone, even if you don’t walk the 50 miles and walk 2 blocks instead. The event is so well staffed that you don’t have to worry about assistance because it is there all the time. From the SAG (Support and Gear) vehicles driving by with their thumbs up every 5 minutes or so to the guys & gals who stop the traffic so you can cross a busy street to your fellow walkers (with cell phones), you know you are going to be ok.
The best part of the weekend for me was the Candlelight Service on Saturday night. Here, a few selected people got up and talked about why they are participating in the event. I won’t go into any details of what was said but just focus on the underlying theme. And that theme is hope. Everyone has the hope that by walking, they are helping to find a cure so the devastating effects of this disease will be taken away from themselves, their spouses, their sons/daughters, their moms/dads, their friends.
You get a sign that you can wear for the weekend that says why you are walking. I said “I am walking for my family.” I walked so that I can keep playing “chase” with the girls. I walked so I can keep being the same wife my husband married 11 years ago. And most dear to my heart, I walked so researchers have the financial means to find a cure so the girls (E & A) do not get this disease when they get older. I know the risks are still very small that E & A would get MS, but the risks are double that of the general population. So if I can do my part to help find a cure in 15 years (when E turns 20), so that neither of my daughters get MS, I am going to do everything I can to do so.
Now the one limitation to the walk is the fundraising minimum. I heard from quite a few people that said they could do the walk, but couldn’t raise the money. It may vary by chapter and our chapter’s minimum is $1,500 which is a lot of money. But the MS Society helps out with the fundraising by giving you ideas on what to do. I was very blessed by generous friends and family this year in that I raised over $8,000. I know I probably could have done more if I had started earlier. I am often amazed at what people are willing and able to donate. Someone gives you $100 because their sister has MS and you didn’t even know it. It really is amazing because as you walk, you know you have the support of all of the people who donated on your behalf and that helps you to keep walking. I am so thankful for all of my friends and family that gave me their support.
So if you are able, you should check out the MS Challenge Walk, you won’t be disappointed.
Wednesday, September 19, 2007
Is it that time of the week again?
Shot night! For me, it comes once a week with Avonex. Depending on which drug you are on, it could be more frequent than that. We actually chose Avonex because it had the longest period between shots. And it has worked well for me thus far. Thank goodness, the side effects have been minimal. I have heard stories of people not even being able to get out of bed the day after their shots. But aside from a headache the next day that is dulled when I remember to take the Motrin, I have tolerated the drug well.
But after almost 8 years, I still HATE it. It will be shot night, and I’ll conveniently forget to have my husband give me the shot. And the excuses are many – I forgot to take it out of the refrigerator to warm up, I’m already in bed, I am upstairs and it is downstairs and I might wake the toddler if I go down to get it. Oh I am good when it comes to rationalizing why I shouldn’t take the shot. I still take it though. Maybe not every 7 days, everytime, but awfully close. That brings me to another one of my rationalizations. Who knows if the weekly dosage is right for me? Now obviously for FDA approval, the clinical trials showed which amount and frequency was the most effective, but how much did the test subjects weigh? Hmm. The dosage is the same for everyone but I must weigh less than the test subjects so it is ok if I am late a day or two. Right?
I try all of these tactics with my husband . And then he promptly puts me back in my place. I am lucky to have these drugs. It is a minor sting/pain for all of 3 maybe 4 seconds. And the headache is annoying the next day and my patience is much shorter, but I do not use any sort of assistance with walking and I still play chase with my daughters in the front yard. I can deal with annoying and so I do.
And now there is hope! I was reading my Inside MS magazine while on the elliptical machine at the gym. I was reading the research update and I started smiling away. I must of looked quite comical but I could not stop smiling because it said that there were oral drugs in the pipeline that are probably 2-3 years away from release to the general public. And these ORAL drugs have a better efficacy than the current ABCR’s. It was music to my ears. Oral, oral oral. My neurologist put a damper on my happiness though. He said that the drugs will probably not be released until 4-5 years and the side effects will be worse than the disease itself. Way to be a Debbie downer. But I have heard other professionals talk with more optimism about these drugs so I am taking their views. Oral drugs here I come. I just have to wait a few more years.
But after almost 8 years, I still HATE it. It will be shot night, and I’ll conveniently forget to have my husband give me the shot. And the excuses are many – I forgot to take it out of the refrigerator to warm up, I’m already in bed, I am upstairs and it is downstairs and I might wake the toddler if I go down to get it. Oh I am good when it comes to rationalizing why I shouldn’t take the shot. I still take it though. Maybe not every 7 days, everytime, but awfully close. That brings me to another one of my rationalizations. Who knows if the weekly dosage is right for me? Now obviously for FDA approval, the clinical trials showed which amount and frequency was the most effective, but how much did the test subjects weigh? Hmm. The dosage is the same for everyone but I must weigh less than the test subjects so it is ok if I am late a day or two. Right?
I try all of these tactics with my husband . And then he promptly puts me back in my place. I am lucky to have these drugs. It is a minor sting/pain for all of 3 maybe 4 seconds. And the headache is annoying the next day and my patience is much shorter, but I do not use any sort of assistance with walking and I still play chase with my daughters in the front yard. I can deal with annoying and so I do.
And now there is hope! I was reading my Inside MS magazine while on the elliptical machine at the gym. I was reading the research update and I started smiling away. I must of looked quite comical but I could not stop smiling because it said that there were oral drugs in the pipeline that are probably 2-3 years away from release to the general public. And these ORAL drugs have a better efficacy than the current ABCR’s. It was music to my ears. Oral, oral oral. My neurologist put a damper on my happiness though. He said that the drugs will probably not be released until 4-5 years and the side effects will be worse than the disease itself. Way to be a Debbie downer. But I have heard other professionals talk with more optimism about these drugs so I am taking their views. Oral drugs here I come. I just have to wait a few more years.
Saturday, September 1, 2007
My 5 year old & Mommy's shots
My husband gave me my Avonex shot on Wednesday morning as we forgot to do it the night before. Given the hour that he gave me my shot, my older child, E was awake. She has seen daddy give mommy her shots before. And like in earlier cases, she wanted to put the band-aid on mommy's boo-boo. She also assisted my husband in washing the area with the alcohol swab just prior to him giving me my shot. After he left for work, she informed me that when she was older, like 5 or 6 (and she'll be 5 in November) she wants to give me the shots.
Now I know this is a bad idea for many reasons. 1. Avonex is Intramuscular. It is a LONG needle (or so I have been told by people who use one of the other ABCR's) 2. You can hit the bone. That happened to me on my third or fourth shot ever and I have lived with the fear thereafter. 3. Needles are sharp and not something a 5 or 6 year old should be handling. But it was the thought that counted. I was so impressed with her desire to help.
We have not shielded either of our girls from MS. I have not had any serious attacks that they can remember. I actually fell while holding the older one (she was 15 months at the time) and pregnant with the younger one, but E did not fall because I was holding her on my strong side. I did however cause quite the ruckus in the Neurologists office when I did it. But for awhile thenafter, I never had to wait in the waiting room, they always shuttled me in to an examination room. Coincidence? I digress.
They have not seen mommy having a hard time walking or seeing. However, they have had to play amongst themselves if I have been particularly tired. And I get a bit cranky the day after the Avonex, so they have had to put up with my yelling on those days. (My neurologist wasn't sure it was the Avonex or the fact I was around 2 kids under 4 that caused the short-temper) But they both get apologies throughout the day if I am yelling too much. And E knows the word MS and is starting to understand - but just starting. A, the younger one is still too young.
Both girls are regulars at all the MS Society events. Some of the staff and volunteers knew me before kids, pregnant and then after. They enjoy (I think) seeing the girls. E walked with me (I pushed her) in the MS Walk this year. And we have started a tradition (2 years running) of the girls handing out lollipops at the MS 150K lunch stop and thanking the riders. I know both E & A like doing it. It didn't start out as a tradition. I had bought a huge bag of Dum-Dums and wanted to get rid of them. And we were meeting my husband at the lunch stop in 2006 so I thought the girls could hand them out. I heard from various riders how cute it was at a different event the next year so in 2007, I made sure they handed the lollipops out again. So we will have them keep doing it until they get to old. A likes doing it because she gets to eat so many lollipops as she hands them out.
Since MS was a part of my life before them, we didn't really ever talk about not talking about it with the girls. I have heard other parents say that they have not told their kids because they don't want to scare the kids. I am hoping that because our girls have always been around it, there won't be any fear and they will be able to ask us questions. E actually already started asking questions. She noticed some people at the MS Walk in wheel chairs and wanted to know why. (A favorite question of hers :-). I explained that the people had MS just like mommy but that MS affects people differently and for the people in wheelchairs, it was making their legs not work the way they should. I told her that was why we were walking and raising money so we could help people like them and mommy get better. She responded with an "ok" and that was that.
I am glad that we have been open with the disease with the girls. I figure that it isn't scary if mommy is so open about MS herself. I think it is the right approach for us. And E has to wait a few more years til she gives mommy her shot and by then, MS may be cured or there will be a pill. Hopefully that attitude of wanting to help will stay no matter what happens.
Now I know this is a bad idea for many reasons. 1. Avonex is Intramuscular. It is a LONG needle (or so I have been told by people who use one of the other ABCR's) 2. You can hit the bone. That happened to me on my third or fourth shot ever and I have lived with the fear thereafter. 3. Needles are sharp and not something a 5 or 6 year old should be handling. But it was the thought that counted. I was so impressed with her desire to help.
We have not shielded either of our girls from MS. I have not had any serious attacks that they can remember. I actually fell while holding the older one (she was 15 months at the time) and pregnant with the younger one, but E did not fall because I was holding her on my strong side. I did however cause quite the ruckus in the Neurologists office when I did it. But for awhile thenafter, I never had to wait in the waiting room, they always shuttled me in to an examination room. Coincidence? I digress.
They have not seen mommy having a hard time walking or seeing. However, they have had to play amongst themselves if I have been particularly tired. And I get a bit cranky the day after the Avonex, so they have had to put up with my yelling on those days. (My neurologist wasn't sure it was the Avonex or the fact I was around 2 kids under 4 that caused the short-temper) But they both get apologies throughout the day if I am yelling too much. And E knows the word MS and is starting to understand - but just starting. A, the younger one is still too young.
Both girls are regulars at all the MS Society events. Some of the staff and volunteers knew me before kids, pregnant and then after. They enjoy (I think) seeing the girls. E walked with me (I pushed her) in the MS Walk this year. And we have started a tradition (2 years running) of the girls handing out lollipops at the MS 150K lunch stop and thanking the riders. I know both E & A like doing it. It didn't start out as a tradition. I had bought a huge bag of Dum-Dums and wanted to get rid of them. And we were meeting my husband at the lunch stop in 2006 so I thought the girls could hand them out. I heard from various riders how cute it was at a different event the next year so in 2007, I made sure they handed the lollipops out again. So we will have them keep doing it until they get to old. A likes doing it because she gets to eat so many lollipops as she hands them out.
Since MS was a part of my life before them, we didn't really ever talk about not talking about it with the girls. I have heard other parents say that they have not told their kids because they don't want to scare the kids. I am hoping that because our girls have always been around it, there won't be any fear and they will be able to ask us questions. E actually already started asking questions. She noticed some people at the MS Walk in wheel chairs and wanted to know why. (A favorite question of hers :-). I explained that the people had MS just like mommy but that MS affects people differently and for the people in wheelchairs, it was making their legs not work the way they should. I told her that was why we were walking and raising money so we could help people like them and mommy get better. She responded with an "ok" and that was that.
I am glad that we have been open with the disease with the girls. I figure that it isn't scary if mommy is so open about MS herself. I think it is the right approach for us. And E has to wait a few more years til she gives mommy her shot and by then, MS may be cured or there will be a pill. Hopefully that attitude of wanting to help will stay no matter what happens.
Wednesday, August 22, 2007
I was feeling bad
I have not written anything in a long long time because I was a bit down on having MS and was rethinking whether I should even be telling people or writing this blog. I attended a few events in late April/early May that made me question why I was doing this. I started writing this blog just to give my thoughts as someone living with MS. And if anyone actually reads this, maybe something I said could help them feel like they aren't alone. But then I started to feel like I should not say anything because I don't have any visible signs of the disease right now. I was introduced to some people by someone I know who has MS and is scooter-bound. And I couldn't help feeling like the people were mad at me when they found out I had MS because their loved one was not ambulatory. And that is soooo not the way I wanted to make anyone feel.
Then I mentioned it at a meeting I attended and after the meeting, someone came up and told me that he too had MS, but had not disclosed it to many people. He also said that he was so thankful that I was so positive and open about the MS and it gave him the courage to maybe tell others too. So I am back writing and hopefully the girls will let me have my computer for enough time during the day to make some posts.
Then I mentioned it at a meeting I attended and after the meeting, someone came up and told me that he too had MS, but had not disclosed it to many people. He also said that he was so thankful that I was so positive and open about the MS and it gave him the courage to maybe tell others too. So I am back writing and hopefully the girls will let me have my computer for enough time during the day to make some posts.
Wednesday, April 11, 2007
Time to Celebrate!
When we first found out, we DEFINITELY were not celebrating. Even though the doctor said it could be years between attacks, we were more focused on the comment that it could be weeks or months. I remember driving with my husband a few days after my diagnosis and him suggesting that maybe we should move into a ranch house so I didn’t have to worry about stairs. But aside from some minor spasticity and minor fatigue (both brought on by my pushing my limits), I did go 4 years between the first & second attacks. And then 3 & 4 both happened within 3 years of attack #2, but they were special attacks brought on by being pregnant (a whole other story).
Let me think about all the things I have done in these last 10 years, in part because of the MS. First, the kids. When we first were approached about going on the ABC drugs back in early 1998, our first question revolved around getting pregnant because I was NOT going to take any drug that would hurt my chances of getting pregnant or hurt the baby. If that was the case, we were going to hold off on the medicine and start a family back then. When I was assured that the drugs would be ok, we decided to start a family as we had originally planned and we had our oldest in 2002 and the youngest in 2004. And in both cases (aside from the pregnancy itself) I have been healthy and able to do everything with them. At 2 ½ & 4, that has been a lot.
Scuba. When I was diagnosed, we thought of all the things we wanted to do that we should do sooner rather than later due to the potential for the disease to progress. So why not scuba, go 100 feet below the water. It is so much fun, although we have not been able to go in 2 years. It is a whole different world and I don’t know if I would have tried it when I did if ever had it not been for the MS.
Tae Kwon Do. When the doctor was going through the items I should add to my exercise regime (which was really not a regime, more of a every once in a while thing), he suggested Tai Chi and I thought that was a great idea. However, my husband had been talking to a guy he worked with about Tae Kwon Do and said maybe I could try that and it could be our way of exercising together. I do recall saying I would give it a try, but ONLY to blue belt. Well that was almost 10 years ago and I am a second-degree black belt. Again, something I would have balked at (I wanted Golf to be our “Couple Activity”) but due to the MS, I gave it a whirl.
Kilimanjaro. Some friends of ours had gone to Tanzania and climbed part of Mt. Kilimanjaro prior to having their first child and that became the “Big trip” before we had our first. And as much as I was not looking forward to the mountain part of our trip (we went on a safari & went Scuba diving in Zanzibar), the best part of the trip was the mountain. We did not summit because of the length of our trip and taking the MS into consideration (my neurologist had suggested I stay at the bottom for a few days while Scott climbed), but I went to 12,340 feet and I felt great. Again, we wanted to go before the kids, because if we waited until after, we ran the risk of the disease progressing. And it worked and I had a blast.
Monday, April 9, 2007
Time to Remember!
Well tomorrow is my anniversary! Ten (10) years since my first MS attack. I think I can remember it so well, but probably time has altered what really happened.
It was 6 am or so and the alarm went off. I went to get out of bed to take a shower. I needed to go to the office before I went to my client that day so I had to get up early. My husband (of 6 months at the time) wrapped his leg around mine and said that I didn’t have to get up so soon but I did. When I put my right foot down, there it was – pins and needles. And it was there for my shower, my getting ready for work, my driving to the office and my subsequent drive to the client. At the client, the sensation started to creep up my leg, then to my waist and finally to my bustline. And every time my sundress hit my leg, it would feel as if a hot iron or pot had just hit my leg instead.
Here is where the memory doesn’t make sense. I remember calling my sister on my car phone. I remember going one direction but in retrospect, I had to be going the other direction. She said I should go to the ER because I could have a blood clot. Well, being 24, invincible and stupid in retrospect, I went to Dave & Busters for the “End of Busy Season” party the office was having. But after having a great time at D&B’s, at 10 pm or so, I did go to the ER. Being that I didn’t look like I was serious, it took over 2 hours to get to go see a doctor. He did his tests and said I did not have a blood clot. It was probably a pinched nerve and it would work itself out. BUT, if I still had the tingling after a week or it went higher than my bustline or into my other leg, I should see my primary care physician.
Well one week later, I was at my primary cares office. My doctor’s hands were cold. But every time she touched me I cringed because they were hot to me. Thank goodness, she realized something was not right and referred me to see a neurologist. Insurance being what it was, two weeks later I got my referral visit with my neurologist. He ran his tests – touch your finger to my finger and then your nose and then back & forth, etc. and I passed with flying colors (I think – and why wouldn’t I, the problem was in my right leg & foot, not my hand or nose). But when he said, hold your leg up while I try to push it down. I couldn’t keep it up. And I recall saying something to the effect that I needed to exercise more. But he nodded and said he wanted to run more tests. He added that the fact the sensation had disappeared was a good sign.
Friday, April 6, 2007
The MS Walk
I am a very lucky person. I was taking with my mom today and she wanted to know if I was raising money for the MS Walk. I am through donations/fundraiser in my neighborhood. But, my response to her was - no, I will send letters for the MS 150K and Challenge Walk but the MS Walk is ONLY 8 miles.
Only 8 miles. Eight miles will be tiring, but not as tiring as the 50-mile walk I am planning to do in September. I know quite a few people living with MS that would slap me on the head for saying it was "only" anything. I know I am lucky that I am as fit as I am. But although my feet have no burden, there is a big one in my heart.
Many years ago (7 or 8 probably), I was asked by the MS Society to distribute MS Walk brochures to a support group local to my house and to see if anyone was interested in coming out and cheering on the walkers. I was running late from my job for the meeting. I went running in to the meeting carrying a box full of brochures. And what I was greeted with scared me, angered me, made me feel guilty & blessed. Most of the attendees of the group were utilizing some form of a mobility device. Many were older, but a few were in their 30s I would guess. After seeing everyone, I decided I would keep my own diagnosis to myself and only represent the Society. Except that I knew the support group leader and he questioned me in such a way that ended up "outing" me to the group. I wasn't trying to keep it secret, I just felt so bad. Here I was running where almost all of the attendees had trouble walking. Why was I so lucky and they were not? Did they hate me because I did not have any visible symptoms of the disease? Did I make anyone there feel bad without any intention of doing such a thing? Life just didn't seem fair. I stayed for the whole support group meeting but felt like aside from everyone being diagnosed with MS, that was where our similarities ended. I have the ability to walk 8 or 50 miles or ride 50 miles (due to lack of training time with two little ones). I was working full-time (60+ hrs a week) then. I was only married a couple of years. I didn't have any common MS problems.
I guess I decided back then that walking/riding will be my contribution since I know so many who can't. So next time when someone comments on the Walk, I won't say it is "Only" 8 miles.
I will tell them of the my friends who can't or who do the walk on a scooter. And I will try not to feel bad when asking for donations for my participation in these events. I feel bad when I ask because it does help me. But it helps so many others just as much if not more.
Only 8 miles. Eight miles will be tiring, but not as tiring as the 50-mile walk I am planning to do in September. I know quite a few people living with MS that would slap me on the head for saying it was "only" anything. I know I am lucky that I am as fit as I am. But although my feet have no burden, there is a big one in my heart.
Many years ago (7 or 8 probably), I was asked by the MS Society to distribute MS Walk brochures to a support group local to my house and to see if anyone was interested in coming out and cheering on the walkers. I was running late from my job for the meeting. I went running in to the meeting carrying a box full of brochures. And what I was greeted with scared me, angered me, made me feel guilty & blessed. Most of the attendees of the group were utilizing some form of a mobility device. Many were older, but a few were in their 30s I would guess. After seeing everyone, I decided I would keep my own diagnosis to myself and only represent the Society. Except that I knew the support group leader and he questioned me in such a way that ended up "outing" me to the group. I wasn't trying to keep it secret, I just felt so bad. Here I was running where almost all of the attendees had trouble walking. Why was I so lucky and they were not? Did they hate me because I did not have any visible symptoms of the disease? Did I make anyone there feel bad without any intention of doing such a thing? Life just didn't seem fair. I stayed for the whole support group meeting but felt like aside from everyone being diagnosed with MS, that was where our similarities ended. I have the ability to walk 8 or 50 miles or ride 50 miles (due to lack of training time with two little ones). I was working full-time (60+ hrs a week) then. I was only married a couple of years. I didn't have any common MS problems.
I guess I decided back then that walking/riding will be my contribution since I know so many who can't. So next time when someone comments on the Walk, I won't say it is "Only" 8 miles.
I will tell them of the my friends who can't or who do the walk on a scooter. And I will try not to feel bad when asking for donations for my participation in these events. I feel bad when I ask because it does help me. But it helps so many others just as much if not more.
Thursday, March 15, 2007
Can I just load my groceries myself, please?
This may sound silly, but I just want to load my groceries by myself when I pull the car up to where the shopping cart is outside the grocery store. It is one of the things that makes me think of the MS, every time. I want to put the bags in the car because I can do it and there will probably come a time when I can not do it (It has happened a few times before). At the point when I can not load the groceries, that is when I will rely on the help of the grocery store employees. But only when I reach that point. Before I had kids, I used to walk back and forth from my car (sometimes 3 rows back) to the shopping cart to get my groceries. I probably looked silly doing it, but to me, it was one of those things I can do and wanted to do. I actually have a lot of things I can do, there is a very limited amount of things I can't do because of the MS, but for some reason, the grocery store is what gets to me and makes me think, "What if." Now that I have kids, I can't make those back and forth trips (my hands are usually tied carrying the 2 year old and holding the 4 year olds hand). So when I pull the car up, I just want to load the groceries in the back myself. I even said something to both of the employees and now one asks me if I need help. I know the other one is just doing her job and has probably forgotten my request to let me go it alone.
It brings me to a bigger complaint that many people I know with MS have shared with me - the do it yourself mentality. It is hard to admit that you need help and REALLY hard to ask someone to help you. "I can do it myself" is what you are thinking but your body isn't cooperating. It is very hard to swallow your pride and ask someone to help you, especially when that person has seen you "ok."
When I think back to one of the times I asked for help loading my groceries, I don't remember being embarrassed for needing some help loading the groceries. Where I should have asked for help and didn't was from my husband. I should have given him the list and had him pick-up the groceries on his way home from work instead of driving myself (my left side was working fine, just the right side was slow) and doing it myself. When I think back to that day, I want to smack myself for not asking for help from him. But it is a hard thing to do and the best advice I can give myself is to keep trying. If it crosses my mind that I might not be able to do it myself, I should ask for help.
It brings me to a bigger complaint that many people I know with MS have shared with me - the do it yourself mentality. It is hard to admit that you need help and REALLY hard to ask someone to help you. "I can do it myself" is what you are thinking but your body isn't cooperating. It is very hard to swallow your pride and ask someone to help you, especially when that person has seen you "ok."
When I think back to one of the times I asked for help loading my groceries, I don't remember being embarrassed for needing some help loading the groceries. Where I should have asked for help and didn't was from my husband. I should have given him the list and had him pick-up the groceries on his way home from work instead of driving myself (my left side was working fine, just the right side was slow) and doing it myself. When I think back to that day, I want to smack myself for not asking for help from him. But it is a hard thing to do and the best advice I can give myself is to keep trying. If it crosses my mind that I might not be able to do it myself, I should ask for help.
Thursday, February 22, 2007
Flare up vs symptom
I would hope after 10 years (almost) living with MS, I would know the difference between a flare up and a symptom. Right now, I am probably having a flare up BUT it is so minor, I am not going to my neurologist.
The top part of my hand is temperature sensitive. Back when I had my very first flare up, my leg was temperature sensitive. So much so that when my dress brushed up on it, I felt pain as if someone had just put a really hot iron on my leg. So my hand is pretty similar to this - though not as severe. And because I have gone through this feeling before (when it was worse) without any drugs (because they didn't know it was MS) and it eventually went away, I am waiting it out. And I think it is getting better.
Should I have just gone to the neurologist. I weighed the pros and cons and the cons won out. I thought of two reasons to go see the doctor. 1 - He MIGHT give me a steroid that would help make the sensitivity go away quickly and 2 - This flare-up MIGHT be a pre-cursor to a bigger flare-up and if he gave me any steroids, it might cut off the Big flare-up before it started. But I had about 10 reasons not to go. 1- When I had my flare ups when I was pregnant, they were MUCH worse and his advice was to wait & see if it got better because he'd rather not give me any medicine being pregnant 2- When I got Prednisone back in 2001 for a flare-up of my leg, it didn't really make it go away any faster than it did without drugs in 1997. 3 - Steroids make me wake up early and with the two girls, I'd like to sleep as much as possible. And if he gave me Ambien or something to help with the sleep problem, I wouldn't want to take it because then I might not hear them if they needed me. 4- Ok, minor reason. It is a pain to schlep the girls to the doctors office. 5 - If the feeling started to progress beyond just my hand, I could always see him within 24 hours.
Ok so I may have exaggerated the 10 reasons but it was enough to make me wait it out and I think I made the right call because it still feels different, but only slightly. Someone asked me how do you know what to do. And I think the answer is it depends on you. MS is such an individual thing. Another person with MS I was talking to said "It is your body and you know what makes sense." I agree now that I have been living with MS for 10 years and have gone through 5 flare-ups. But had this happened in January 1998, I probably would have gone to see the neurologist because I wouldn't have know what to do. I think one of the most frustrating things about MS is a lot of the answers are "It depends."
I think I have babbled enough already. As my younger daughter says - nigh-nigh.
Kristin
Disclaimer - Anything I write about is my personal story and should not be taken as advice for what to do yourself. MS is a very individual disease - what works for 1 person may not work for the next. I am not a doctor and if you have any medical concerns or needs, you should consult yours.
The top part of my hand is temperature sensitive. Back when I had my very first flare up, my leg was temperature sensitive. So much so that when my dress brushed up on it, I felt pain as if someone had just put a really hot iron on my leg. So my hand is pretty similar to this - though not as severe. And because I have gone through this feeling before (when it was worse) without any drugs (because they didn't know it was MS) and it eventually went away, I am waiting it out. And I think it is getting better.
Should I have just gone to the neurologist. I weighed the pros and cons and the cons won out. I thought of two reasons to go see the doctor. 1 - He MIGHT give me a steroid that would help make the sensitivity go away quickly and 2 - This flare-up MIGHT be a pre-cursor to a bigger flare-up and if he gave me any steroids, it might cut off the Big flare-up before it started. But I had about 10 reasons not to go. 1- When I had my flare ups when I was pregnant, they were MUCH worse and his advice was to wait & see if it got better because he'd rather not give me any medicine being pregnant 2- When I got Prednisone back in 2001 for a flare-up of my leg, it didn't really make it go away any faster than it did without drugs in 1997. 3 - Steroids make me wake up early and with the two girls, I'd like to sleep as much as possible. And if he gave me Ambien or something to help with the sleep problem, I wouldn't want to take it because then I might not hear them if they needed me. 4- Ok, minor reason. It is a pain to schlep the girls to the doctors office. 5 - If the feeling started to progress beyond just my hand, I could always see him within 24 hours.
Ok so I may have exaggerated the 10 reasons but it was enough to make me wait it out and I think I made the right call because it still feels different, but only slightly. Someone asked me how do you know what to do. And I think the answer is it depends on you. MS is such an individual thing. Another person with MS I was talking to said "It is your body and you know what makes sense." I agree now that I have been living with MS for 10 years and have gone through 5 flare-ups. But had this happened in January 1998, I probably would have gone to see the neurologist because I wouldn't have know what to do. I think one of the most frustrating things about MS is a lot of the answers are "It depends."
I think I have babbled enough already. As my younger daughter says - nigh-nigh.
Kristin
Disclaimer - Anything I write about is my personal story and should not be taken as advice for what to do yourself. MS is a very individual disease - what works for 1 person may not work for the next. I am not a doctor and if you have any medical concerns or needs, you should consult yours.
Wednesday, February 7, 2007
Hello
Hi there.
I thought this might be a way to communicate some thoughts I have collected over the years dealing with Multiple Sclerosis. I will try to update this post at least once a week, time permitting (with the two little ones and all). I welcome comments to the postings.
A little about me. I was diagnosed almost 10 years ago when I was 24 years old and married for 6 months. I have relapsing-remitting MS. I have been immensely lucky with the disease - 5 official attacks. My 6th is probably happening right now but it is minor so I haven't gone to see my neurologist because I know what the outcome will be and since I am only minorly affected, it seems like a waste of time and money. I will describe the other attacks in later blog entries as some people reading this might be able to benefit with what I went through.
I have two little girls - now 4 and 2 1/2 - the picture is outdated. If you do to the math, you'll note they were both born way after MS. And I had the "luck" of having flare ups with the disease with both pregnancies but not after delivery. Future blogs will probably talk about having kids when you have MS but again, I have been very blessed not to have significant issues (yet) since they were born.
I have been married for 10 years and my husband has been giving me my Avonex for about 7 1/2 of those years. (Doctor didn't recommend it until a year after I was diagnosed and I "took off" during the pregnancies & nursing after they were born.) Another blessing has been my husband.
So, hello and I look forward to posting again real soon.
I thought this might be a way to communicate some thoughts I have collected over the years dealing with Multiple Sclerosis. I will try to update this post at least once a week, time permitting (with the two little ones and all). I welcome comments to the postings.
A little about me. I was diagnosed almost 10 years ago when I was 24 years old and married for 6 months. I have relapsing-remitting MS. I have been immensely lucky with the disease - 5 official attacks. My 6th is probably happening right now but it is minor so I haven't gone to see my neurologist because I know what the outcome will be and since I am only minorly affected, it seems like a waste of time and money. I will describe the other attacks in later blog entries as some people reading this might be able to benefit with what I went through.
I have two little girls - now 4 and 2 1/2 - the picture is outdated. If you do to the math, you'll note they were both born way after MS. And I had the "luck" of having flare ups with the disease with both pregnancies but not after delivery. Future blogs will probably talk about having kids when you have MS but again, I have been very blessed not to have significant issues (yet) since they were born.
I have been married for 10 years and my husband has been giving me my Avonex for about 7 1/2 of those years. (Doctor didn't recommend it until a year after I was diagnosed and I "took off" during the pregnancies & nursing after they were born.) Another blessing has been my husband.
So, hello and I look forward to posting again real soon.
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