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.
Wednesday, September 19, 2007
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.
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