This was a bit of a rough weekend for me. I was having some of the more annoying symptoms of Multiple Sclerosis. The dreaded electrical shocks. *shudder* For anyone who is reading this and not sure of what I am talking about I'll try to explain.
The sensation for me is much like I am constantly being surprised. My body tenses and my heart feels like it is skipping beats. My face and extremities are tingly and feel like they are in motion even when I am sitting. I feel zips and zaps, but imagine a prolonged static electrical zap. Any small movement makes the sensation all the more intense to the point where I feel as if I can not breath properly, at that point I have to calm myself or risk the chance of having a panic attack. Sometimes it feels as is if I am falling. Now imagine all this going on for days with no real relief. Add to it the constant numbness in my right side, speech problems, and you can see why I was a teary eyed mess. Well that and the fact my 16 year old is in NYC for the week with her school band. I miss her.
I truly hate when the monster rears its ugly head like this. I have things to do, yo!
Today is not as bad, but I still feel the sensations although not as intensely. I'm going to try to get a run in and see if I feel any better, but right now I do not have high hopes. Uggggghhhh.
These are the reasons this disease is so hard to take for many of us. We go along in our life for weeks sometimes even months not being completely symptom free, but enough that life feels normal and then BOOM, "HERE'S JOHNNY!". It's always at a very inopportune time, again I have things to do.
UPDATE: I went for a very cold run. 2.5 miles after posting this, and I do feel a bit better I still have a weird feeling. Meh....dreading making "the call".....
to be continued...
Monday, November 25, 2013
Wednesday, November 20, 2013
Tardis cake failure
We are huge Dr. Who fans in our house, so I wasn't surprised when Lillian asked for a Tardis cake for her birthday. I reasearched, and planned and pretty much felt I had this in the bag. How hard could it be to decorate a Tardis cake. It's not like I haven't made cakes before. In fact I have always baked and decorated my girls birthday cakes.
I don't know really know what went wrong, but the cake turned out awful. I mean embarassingly awful. So bad I was in tears awful. It looks like a 10yr old decorated this cake. Nothing was going right. I had not one but two decoarating bags explode on me while trying to pipe the windows. Just a mess is what it was. Lilli happens to be home sick from school today and came into the kitchen to see what all the hubbub was about. I was covered in blue frosting, with giant pools of it solidifying on the counter and floor, near tears. She looked at the cake was quiet for a second then started laughing like crazy. "it's soooo cute! I love it" she squealed between laughs and coughs. Bless her heart because I felt like the biggest failure for not making this cake perfect, but she didn't care one bit.
I hate doing this to myself. I want to stop believe me. I want to not compare myself to other moms who seem to always have it together. I want to, I just don't know how to turn it off. Any thoughts?
Friday, November 15, 2013
A runner who's not getting over it
I just got around to reading the Chad Stafko OK, You're a runner .Get over article from the Wall Street Journal. http://online.wsj.com/news/articles/SB10001424052702304448204579186401818882202 If you haven't read it he basically states most runners do it for the attention and glory and we are attention hogs.
Guess what? He's right! For me at least he is. I love that my family is proud of me for running a half marathon. I love that I'm an example for my girls to never give up, even though I have wanted to because an exacerbation has kept me off the running trails for weeks. Hell, exacerbations keep me from just basically functioning a lot of the time.
I love seeing my photos from races where I look strong, because there have been so many more times when I wasn't. I also know there will be a time in the future when I may never be able to do that again.
I want my neighbors to see me running in the neighborhood, because they have seen me walking with my cane.
I even custom designed my own 13.1 sticker on Cafepress.com. Running has been a life saver for me and I want everyone to know it. If that is wrong or somehow offensive to Chad Stafko or anyone else who may think I'm full of myself, well I don't really care.
Wednesday, November 13, 2013
Social Security
I ran my for the first time since the half marathon on Saturday. It was an easy 2.5 miles around the block. I wore my finishers medal tucked into my shirt and just reflected on the last few years. I am amazed that I can sit and type it was an "easy" 2.5 miles compared to where I was 3 years ago.
I'm reflecting on this today because I had to fill out my Social Security update report and mail it in this week. For those of you not familiar with Social Security Disability, the administration does a follow up about every two years to see if a person is still eligible to receive benefits. Pisses me off because those benefits are what I have paid into the system since I started working at 15 years old, but that's neither here nor there right now.
The report asks questions such as:
Have you worked?
Have you discussed going back to work with your doctor?
Overall how is your health compared to the beginning of the reporting period?
Then you go on to list the dates of doctors appointments, treatments and hospitalizations during the reporting period.
Sound pretty straightforward right? I suppose it is until I get to the part about how is your health.
Do check the box that says "has gotten worse" "the same" or "has improved".
I do not believe it has gotten worse so that is not an option. When I applied three years ago I was having a severe relapse, that I caused me not to walk, but obviously that is not the case right now. I did have 2 relapses since then though. I still have the same lesions on my brain with a new one or two, I still have cognitive issues, thinking straight and memory to be exact, - oh and if one more person tells me " I have that too we're just getting old it's normal" I think I may scream! The depression is still the same. No improvement there. I don't sleep all day like I used to.
I want to answer these questions honestly. I don't want to be the one getting these benefits because I don't deserve them. I do believe I was over thinking the whole thing. In the end I took my #2 pencil and put an x in the box stating "the same", sealed the envelope and dropped it in the mail box.
I'm reflecting on this today because I had to fill out my Social Security update report and mail it in this week. For those of you not familiar with Social Security Disability, the administration does a follow up about every two years to see if a person is still eligible to receive benefits. Pisses me off because those benefits are what I have paid into the system since I started working at 15 years old, but that's neither here nor there right now.
The report asks questions such as:
Have you worked?
Have you discussed going back to work with your doctor?
Overall how is your health compared to the beginning of the reporting period?
Then you go on to list the dates of doctors appointments, treatments and hospitalizations during the reporting period.
Sound pretty straightforward right? I suppose it is until I get to the part about how is your health.
Do check the box that says "has gotten worse" "the same" or "has improved".
I do not believe it has gotten worse so that is not an option. When I applied three years ago I was having a severe relapse, that I caused me not to walk, but obviously that is not the case right now. I did have 2 relapses since then though. I still have the same lesions on my brain with a new one or two, I still have cognitive issues, thinking straight and memory to be exact, - oh and if one more person tells me " I have that too we're just getting old it's normal" I think I may scream! The depression is still the same. No improvement there. I don't sleep all day like I used to.
I want to answer these questions honestly. I don't want to be the one getting these benefits because I don't deserve them. I do believe I was over thinking the whole thing. In the end I took my #2 pencil and put an x in the box stating "the same", sealed the envelope and dropped it in the mail box.
Tuesday, November 12, 2013
the Great Debate
This post will have nothing to do with Multiple Sclerosis or running today. It will be about an ongoing disagreement, debate, if you will, between Keith and myself. He called from work this morning and asked what time Lillian's dance class starts on Saturday.
"8:85, just like every saturday for the last two years dear".
To which he responds " see that's what pisses me off. Every Saturday is tied up with this dance stuff. I wanted to go to the Christmas shop up in Michigan, but now we won't have time."
"what about Sunday?"
"I don't like to do things on Sundays, at the end of the weekend"
Here's where I start to get mad and try to hold back, "well, if it wasn't Lil's dance it would be a swim meet for Ab. you can't keep downing one and not the other"
"I'll just discuss this with you later when I'm not at work"
We have two teen daughters. The oldest Ab, has been swimming since she was 9 yrs old and currently swims for her high school team, the YMCA, and the USA swim program. Our youngest has been involved with dance since she was four years old and is currently on her dance studio's competition team, and she is also on the performance team. They are busy girls, but both love what they do.
The argument comes in with the fact that Keith feels that Ab has a better chance of getting into college with swimming than Lillian does with dance. He sees no value in dance for Lillian and resents the time and money we spend for her to do it. On the other hand he sees swimming as a real chance for Ab to possibly get a scholarship for college. Over the years he has tried to interest Lillian in swimming or another sport, but she has not been interested. She loves to be on stage and perform. I realize we spend a hefty amount of money on dance, but we also put out a pretty penny for swim. They are both traveling activities so our traveling expenses can get up there sometimes also. All in all I have been able to keep expenses pretty even for both activities. What I can't keep even is Keith's opinion. It's starting to drive me nuts.
I feel that what ever they do now will have value in their adult lives. Both girls can teach/coach during college to earn money. They both learn about competition and how to be a gracious winner or loser. For Lillian who tends to struggle with attention issues in school dance helps her learn to concentrate and retain information. My biggest agument is that both of them are happy, and feel great about themselves. To me those are the biggest values of all.
Keith is very good about not saying anything negative to Lillian about dance, and always tries to make all her performances/competitions as his hectic military schedule allows. He really does love to watch her dance and believes she's talented, but that doesn't stop the comments to me about the time and gas spent on dance that he feels are better spent elsewhere.
I don't want to fight about this. I don't want our girls to be caught in the middle of this, and I certainly do not want one to feel favored over the other because that is not the case.
I really do believe once Lil is in high school next year some of the dance will fall off simply because she will be involved in band and the high school drama team. I just wish he would give me a break sometimes. I am the one running both girls to all their activities and making arrangments for them when I can't. I know he wants the best for them, because he is a fabulous dad. He is involved and always available for them. He just needs to lighten up sometimes I think. Who knows maybe my style of parenting is too loosey goosey and I'm the one in the wrong for letting Lilli dance instead of forcing volleyball or soccer on her.
"8:85, just like every saturday for the last two years dear".
To which he responds " see that's what pisses me off. Every Saturday is tied up with this dance stuff. I wanted to go to the Christmas shop up in Michigan, but now we won't have time."
"what about Sunday?"
"I don't like to do things on Sundays, at the end of the weekend"
Here's where I start to get mad and try to hold back, "well, if it wasn't Lil's dance it would be a swim meet for Ab. you can't keep downing one and not the other"
"I'll just discuss this with you later when I'm not at work"
We have two teen daughters. The oldest Ab, has been swimming since she was 9 yrs old and currently swims for her high school team, the YMCA, and the USA swim program. Our youngest has been involved with dance since she was four years old and is currently on her dance studio's competition team, and she is also on the performance team. They are busy girls, but both love what they do.
The argument comes in with the fact that Keith feels that Ab has a better chance of getting into college with swimming than Lillian does with dance. He sees no value in dance for Lillian and resents the time and money we spend for her to do it. On the other hand he sees swimming as a real chance for Ab to possibly get a scholarship for college. Over the years he has tried to interest Lillian in swimming or another sport, but she has not been interested. She loves to be on stage and perform. I realize we spend a hefty amount of money on dance, but we also put out a pretty penny for swim. They are both traveling activities so our traveling expenses can get up there sometimes also. All in all I have been able to keep expenses pretty even for both activities. What I can't keep even is Keith's opinion. It's starting to drive me nuts.
I feel that what ever they do now will have value in their adult lives. Both girls can teach/coach during college to earn money. They both learn about competition and how to be a gracious winner or loser. For Lillian who tends to struggle with attention issues in school dance helps her learn to concentrate and retain information. My biggest agument is that both of them are happy, and feel great about themselves. To me those are the biggest values of all.
Keith is very good about not saying anything negative to Lillian about dance, and always tries to make all her performances/competitions as his hectic military schedule allows. He really does love to watch her dance and believes she's talented, but that doesn't stop the comments to me about the time and gas spent on dance that he feels are better spent elsewhere.
I don't want to fight about this. I don't want our girls to be caught in the middle of this, and I certainly do not want one to feel favored over the other because that is not the case.
I really do believe once Lil is in high school next year some of the dance will fall off simply because she will be involved in band and the high school drama team. I just wish he would give me a break sometimes. I am the one running both girls to all their activities and making arrangments for them when I can't. I know he wants the best for them, because he is a fabulous dad. He is involved and always available for them. He just needs to lighten up sometimes I think. Who knows maybe my style of parenting is too loosey goosey and I'm the one in the wrong for letting Lilli dance instead of forcing volleyball or soccer on her.
Monday, November 11, 2013
I DID IT!!! I really did it!
What did I do? I ran and finished my first ever half marathon on Saturday November 9. I didn't finish in the front of the race, or even the middle of the pack. My 2:45 finish time put me in the back as the #601 finisher out of 670 runners, but I'm not complaining. I ran it my way and just stayed in the moment for those two hours and forty five minutes.
It was hard, even brutal at times. The twenty MPH wind gusts in my face for most of the run were just cruel. I hit a real bad attitude wall at about mile seven. I was in pain, my right foot tends to drop and when I get tired it my gait gets funky and my toes and forefoot really start to hurt. I was starting to think "this is stupid, what the hell am I doing?, screw this shit, screw this race" and when I was passed by the speed walkers-yeah that stung- I was just over it. I was pissed and pissy. Oh, did I forget to mention when I get angry I tend to talk out loud to myself? Yes, I became the crazy eyed, zombie runner mumbling curse words to herself. Lovely. Then I started thinking to myself "well hell you have to finish the damn thing because you are not climbing into the "sag wagon" and being driven back." I saw a water station up ahead grabbed a cup of water from on volunteer who said " you're doing great! more than half way done, you can do it!" Thank you perky volunteer lady because I really needed that!
I got a little pep in my step again and when I rounded the corner at mile 8 and saw my time and the photographer I put on the biggest smile I could and just kept going. I think I ran with that goofy grin for the next 4 miles and just stayed in the zone.
Mile 12 hit and the sign said "mile 12 the miracle mile" Yeah it was a miracle I finished it because that mile was nothing but one long steep hill! Again I started talking out loud to myself and to anyone who would listen, " are they serious with this shit?!, what the hell?! Oh I'll do this and then write a strongly worded email to the even coordinators, you better believe it, blahblahblah"
Well I got over that hill and went back into my zone and when I came on to the volunteer standing at the 400 yards to go mark she looked at me and said "you are the most peaceful looking runner I have seen all day. You look beautiful!" that's all I needed I came around the corner to the finish line, heard friends calling my name saw my Mom and two beautiful daughters, and my husband who finished before me clapping and cheering me across. The announcer said my name and I was done. I did it! I really did it!
I don't know if I ever want to do it again, but it's something I will always keep with me. I may not be able to walk in the future, but I will always remember that I stuck this out and completed something that most "healthy" people won't even attempt. I didn't let my illness stop me and I won't let anyone tell me I'm not supposed to do these things because I have Multiple Sclerosis. I ran my own race and I will run my own M.S.
Friday, November 8, 2013
Falling in running and M.S
On the day before my first half marathon I find my self, nervous as hell and excited as all get out. I look back over the last few months of training and realize I never thought about quitting. Not once. I have had some really crappy runs, I felt like death after my first couple long runs, but I just kept telling myself " these are the things that make you stronger"
That follows very true to how I run my life in general. I may fall and land on my face, but I have to get back up and finish the run.
M.S. can be a like a really bad run. It will mess with your head, and sap your confidence in yourself if you let it. If you fall during a run you have three choices, sit and cry about while you wait for someone to come and pick you up and carry you to the car, or you can get off your butt and continue on even if you half to walk the rest of the way. I choose getting back up.
I know many of us don't always have that option as our symptoms vary so widely with Multiple Sclerosis. I do, however, believe there are different ways of "getting off your butt". What I mean is that we don't have to crawl into a mental ball and hide. We can be proactive by listening to our bodies and taking care of ourselves to the best of our abilities. Don't get caught up in the things you have lost or can't do anymore and try to think of all the things you still have. I know, "it's easy for you to say", but if you read back on my past posts you'll see how often I struggle with this.
The third choice for a fall is one we all need to feel comfortable with. You can lean on someone until you can walk it off. If you need to reach out for help do it! There is nothing wrong with leaning on friends and family. That's the beauty of the running community to me. If we have a bad fall or crappy running day, there is always someone there to help you back up and let you lean on them if needed. You are always encouraged to run your own race. Don't compare yourself to another runner. That is a valuable lesson we all would do well to learn for life in general. My M.S. is a very different experience from the next person's M.S. That's Ok, we can still learn from eachother's journey.
Run your own race friends.
That follows very true to how I run my life in general. I may fall and land on my face, but I have to get back up and finish the run.
M.S. can be a like a really bad run. It will mess with your head, and sap your confidence in yourself if you let it. If you fall during a run you have three choices, sit and cry about while you wait for someone to come and pick you up and carry you to the car, or you can get off your butt and continue on even if you half to walk the rest of the way. I choose getting back up.
I know many of us don't always have that option as our symptoms vary so widely with Multiple Sclerosis. I do, however, believe there are different ways of "getting off your butt". What I mean is that we don't have to crawl into a mental ball and hide. We can be proactive by listening to our bodies and taking care of ourselves to the best of our abilities. Don't get caught up in the things you have lost or can't do anymore and try to think of all the things you still have. I know, "it's easy for you to say", but if you read back on my past posts you'll see how often I struggle with this.
The third choice for a fall is one we all need to feel comfortable with. You can lean on someone until you can walk it off. If you need to reach out for help do it! There is nothing wrong with leaning on friends and family. That's the beauty of the running community to me. If we have a bad fall or crappy running day, there is always someone there to help you back up and let you lean on them if needed. You are always encouraged to run your own race. Don't compare yourself to another runner. That is a valuable lesson we all would do well to learn for life in general. My M.S. is a very different experience from the next person's M.S. That's Ok, we can still learn from eachother's journey.
Run your own race friends.
Monday, November 4, 2013
Frustration is not my friend
I just got done having a mini melt down thanks to our lovely Social Security Administration. Geeesh it is just a little letter and questionnaire about my health over the last two years that I have to fill out, but the very thought of losing my benefits put me in a serious tail spin.
I started thinking about what I would do. Where I would find a job. All the choices I would have to make because I know in my heart I cannot work and be an effective wife and mother. Yes, I have been able to run and actually train for a half marathon. That is a great improvement, however I have not been symptom free. If you look back at previous posts you will see my adventures in Steroidlandia. I have many cognitive issues that drive me nuts sometimes, and a constant numbness on my right side. Even with these things I know I could lose my benefits.
The thing that worries me most is that when I started on SSDI I felt that I wasn't contributing enough by not actually working, now if I lose my benefits I won't be contributing anything at all. If I do go back to work what's to say I won't lose my job for having a relapse. It's happened before, of course they couldn't say it was because of my Multiple Sclerosis, but because I wasn't "productive" enough, my schedule wasn't open enough anymore, or just whatever excuse they could use to make it legal.
Keith says I'm just overreacting, and maybe I am. I just am tired of being in this situation. I never feel like I am doing enough, and I hate to feel like the little I am able to offer my family could be taken. Keith works really hard to provide for us. I know as a mother the time I spend with my daughters is very important, but that doesn't pay for my dryer to be fixed, or new tires for my car.
Uggghhh. Frustration is not my friend, but it is my constant companion.
I started thinking about what I would do. Where I would find a job. All the choices I would have to make because I know in my heart I cannot work and be an effective wife and mother. Yes, I have been able to run and actually train for a half marathon. That is a great improvement, however I have not been symptom free. If you look back at previous posts you will see my adventures in Steroidlandia. I have many cognitive issues that drive me nuts sometimes, and a constant numbness on my right side. Even with these things I know I could lose my benefits.
The thing that worries me most is that when I started on SSDI I felt that I wasn't contributing enough by not actually working, now if I lose my benefits I won't be contributing anything at all. If I do go back to work what's to say I won't lose my job for having a relapse. It's happened before, of course they couldn't say it was because of my Multiple Sclerosis, but because I wasn't "productive" enough, my schedule wasn't open enough anymore, or just whatever excuse they could use to make it legal.
Keith says I'm just overreacting, and maybe I am. I just am tired of being in this situation. I never feel like I am doing enough, and I hate to feel like the little I am able to offer my family could be taken. Keith works really hard to provide for us. I know as a mother the time I spend with my daughters is very important, but that doesn't pay for my dryer to be fixed, or new tires for my car.
Uggghhh. Frustration is not my friend, but it is my constant companion.
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