Monday, December 16, 2013
I have discussed all this with my doctor, and as of my last MRI I know I do have active lesions, but the knowing does nothing to relieve the feeling of inadequateness -is that even a word?- that I have.
I know I am very fortunate to still be able to drive, walk and get around, but those are the things people see. Sure I can get Dancy Daughter to the studio five nights a week, and I can make sure I can get Swimmer Girl to the pool everyday, but that seems to be the extent of my skill level right now.
I have been really teary for the last couple weeks, actually almost a month now. I don't know how to discuss this with anyone so I just keep it on the down low and deal. I don't want to burden my number one man with it, he has so much going on at the base right now, and I honestly don't have any friends left. I have successfully pushed them all away over the years and now I sit here boohooing over something that is my own fault.
I don't know, maybe it's the weather, maybe I'm just nuts. I'll just keep taking my Cymbalta- Really, I have no choice because one you start that demon formed medication you can't stop-and keep going.
Thursday, December 12, 2013
I was privy to an upsetting conversation the other night at my daughter's dance studio. There is a mom there that I generally don't care for, we just don't jive, but that's ok, since I can usually just ignore her.
Tuesday night that was not the case. The mother sends her child to one of our local Catholic schools and when she was asked a question about the current Bishop leaving, she replied she did not really know how the school administrators felt about it because she is not as active at the school as she has been in the years past. She then follows up with this reason....
"our school is only concerned with the poor families and voucher kids and I'm tired of it. If the voucher kids don't have uniforms they give them to them, if the poor kids can't afford to go on a trip we all have to do fundraisers, I can afford to pay I don't want to do the fundraisers........" and so on and so on.
To say I was pissed is an understatement! I was completely furious, and had to bite my tongue because I just didn't know what to say at the time that wasn't filled with vulgarities and would have been completely inappropriate in the current location. The more I thought about it for the past couple of days the more angry I become. Here is a woman who is able to give her child anything she wants whenever she wants it. Dance lessons every night of the week except for the one night she has horseback riding lessons, an Iphone, Ipad, a closet that is bigger than my 14 year old's bedroom, trips to Disney twice a year, yet I hear her begrudging children an education because they come from a "poor" family. Who does that? I mean really, why would you who has so much, be angry that the church is actually doing what it is intended to do by ministering to the less fortunate? I listen to this woman every week talk about about being a Christian and hearing her speak about the less fortunate kids at school was the antithesis of Christianity.
I don't know why I am always so surprised to hear people who spew this kind of venom out into the world, but I really always am. Call me naive I guess.
Monday, November 25, 2013
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...
Wednesday, November 20, 2013
Friday, November 15, 2013
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
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
"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
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
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
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.
Thursday, October 31, 2013
Well, this morning my husband told me he had surprise for me....MY friend is going to be in town tomorrow and plans on doing my final long run with me! They set it up a couple days ago and the only reason he had to tell me today was my Mother in law went in for emergency gall bladder surgery this morning. So cool I love these two so much! My husband has been my soul mate since we met when I was 16. My friend has been a constant source of support since I was 13, except the one time when he introduced me to my first boyfriend and he turned out to be a total tool, hahaha, but other than that one of my biggest fans for sure.
Feeling very fortunate today.
I think all of us, no matter whether we have a chronic illness such as M.S. or other life situations we are not happy about need to learn how to live on our own terms. I have often expressed my guilt of not working. I am nervous about even looking for something part time because I don't want to lose my benefits and then lose my job, like has happened so many times in the past, because of my illness.
I recently was on the recieving end of some SSDI hate. A person made a comment to the effect that she's tired of paying for someone else on disability to buy new cars and take vacations when they don't need it. I felt froggy and decided to leap into the conversation to educate this person that not everyone on SSDI is using her money, many of us have worked fulltime and paid into the system for enough years to earn enough credits to cover our own costs. Sure there are people out there who abuse the system, but there are a lot more who need and deserve these benefits. I went on to say I am tired of having to defend myself to others uniformed opinions. I was told that if I really wasn't taking advantage of the system then I wouldn't have to be so defensive. I ended the conversation at that point. I was not going to change this person's opinion because they didn't want to learn.
My question here is, why are we not allowed to have lives and live to the fullest if we are ill and not necessarily dying? Why people that do not have a medical degree think it's alright to judge a person's worthiness for assistance? I have many of the invisible symptoms every day. My right side and genitals (sorry TMI) are numb. I am tired much of the day. I have cognitive issues that get worse every year. I don't advertise these things though. I shouldn't have to walk around with a checklist of my symptoms to prove to some one that I'm sick enough for them. Yes, I run. I run as much as I can. I'm even training for a half marathon in November. My neurologist is on board as long as I take precautions against overheating and dehydration, which I am doing. When someone says "well you must be doing really good if you can run that much" I just smile and say "yes I am". I am not going to tell them that I have to nap for hours after each run. That my house is a disaster because I am too tired to do anything. Hell, my poor dogs are not even being walked as much because I'm too tired, and they are too old to run with me. They throw off my pace, yo! (runners reading this feel me on that one)
I'm just doing my best to live life on my own terms right now. I want to live to it's fullest and have experiences that motivate me to keep going. It's hard. I have a lot guilt that I am slowly letting go of, but it's still there.
Wednesday, October 30, 2013
Music tends to bring this on for me. I have loved music since I was a little girl. My mom had this stereo cabinet in our dining room. I would just lay on the floor for hours listening to the radio or albums. I would stare at the Fleetwood Mac album cover for Rumors. It just fascinated me for some reason. Queen A night at the Opera, was also a much played album in my house. Rickie Lee Jones was my all time favorite. So much so I purchased a cassette of the album in my early 20's wore that out and ordered a CD about 5 yrs ago of the same album. She just looked so cool on that cover with her hat not looking at the camera lighting her smoke. Her songs and music always transported me and I could actually see in my mind the characters she sang about. There were so many others, in the 80's I was all about metal and rock. Motley Crue's Shout at The Devil album blew my mind at 13 yrs old and I never looked back.
So you can see I have a pretty strong connection with music. Well today, I was cleaning the house IHeart Radio blasting through my speakers mostly 90's stuff. The Freshman by the Verve Pipe came on. I haven't heard that song in such a long time, but it always made me feel like I was in my twenties again. It's the perfect "hey I'm young so it's not my fault song". That's not why it speaks to me so much though. I am always reminded of all the mistakes I made back then when I hear it. I was not the best friend, girlfriend or wife back then. I always thought "hell, I'm just trying to live my life on my own terms here, and if you don't like it screw you" So anyhow that song got to me a bit then a few Red Hot Chili Peppers songs came on and I dare anyone not be be touched by the way Anthony Kiedis just spews his soul right into your heart while he sings. OK I can handle that though, a little weepy but not too bad. THEN Green Day's Time of Your Life comes on and I just fell right to the floor in the dining room and sobbed. Big fat ugly crying sobbing. Not pretty crying here. Just snotty nosed, red eyes, wipe my face with my Tshirt sobbing. Why? I recently lost an old friend that died just way too young. She was 41. We met in junior high because she was trying to cheat off my paper, "hey can you move your arm so I can see?" "What?!" Oh yeah I new this ballsy chick and I were going to be friends. We had some mutual friends and starting hanging out nonstop. We were "bad" girls, smoking, drinking, cutting school it was the time of my life! We would always listen to music and there was a radio station that we could call and dedicate songs to people with a little message. We did that all the time. She was a lot more crazy than I was when it came to boys and very sexually active even at 13 yrs old. Well she ended up pregnant by 14. God bless my mom for letting me still hang out with her. It was the best form of contraception ever for me! She eventually dropped out of school and we lost touch because I was trying to get my shit together and finish. When I met my future husband we pretty much stopped talking all together. We were 16 and she already had 2 kids.
We met up again by chance at the Grocery store several years later I was pregnant with my second daughter at the time, but it was like no time ever went by. We started talking again, going to each others` kids birthday parties, just hanging out. Then her marriage broke up and so did our friendship again. We mostly just got busy and it was hard to find the time for it. She had four kids and my two were still little. We did stay in touch via Facebook though, and so it was huge surprise when I found out she passed away. I cried a little bit. Was sad, but pushed it down and went on with my life. This was two weeks ago. Today I heard that song and cried for Tracy, for me, for our childhood, for her father, for her kids, for her SIX grandkids, for her brother , for everyone.
I wish I could write a song for her, but I'll just dedicate Time of Your Life to her instead. With the message " It was short, but I know you had the time of your life"
Thursday, October 24, 2013
First off I want to be sure to put what I'm thankful for out here because sometimes it's too easy to forget all the good things. My health has been steady lately for which I am truly happy about. I am actually training for a half marathon with my Husband. We will be running it November 9, and I am really excited. I just wanted to see if I can do it. I have no big time goals, I don't have any illusions of placing anywhere near the top finishers, but I just need to prove this for me.
My girls are both healthy and happy, well as happy as any 16 and 14 year old girl can be, and for this I am truly thankful. My hubby and I are getting on well and seem to have settled into a comfortable place. All good things right? Then why do I feel so weepy and sad?
I feel old, boring, and all around blah. My girls are growing up and don't enjoy doing the stuff we used love to do together. Halloween was my biggest and best holiday always. I mean I went to town on decorations, costumes, parties the whole shebang. I had my own pumpkin patch just for this holiday. Now, nothing. No one wants to get pumpkins or carve let alone carve them. My 14 year old still wants to dress up, but her sister doesn't want to trick or treat with her.
Another thing we used to do is go to the Renaissance Fair. We have gone every year since my oldest was about 8 years old. There were a few years we even dressed up. This year I was told it's boring so we didn't go.
My husband is all about doing things as a family so when the girls balk he just says forget it with out even thinking we could have a good time just the two of us. I guess what is really bothering me is I don't know what I am going to do when the girls are gone. I think about it a lot lately. I also find myself a little, well, jealous *gasp*of my girls. .Oh settle down. I mean because they have a whole future of firsts still to come. First loves, first jobs, first time living on their own. Yes I realize it's silly because they have a whole of struggling and broken hearts ahead of them too. Just the same though, those struggling times hold the best memories for me though.
I hope they find their purpose and path in life, because I think that is what I am struggling with the most these days. Did I live up to all my potential? Did I waste my years? Did give up on myself to easily? I don't know sometimes it feels like "yes". Realistically I know I have a great life and wouldn't trade my daughters or husband for anything, but sometimes I feel like I should have been more. More what I can't tell you, just more.
Wednesday, July 24, 2013
I run from self-doubt, self-loathing.
I run from feeling like I'm not enough, a loser, a failure.
I run from being needy.
I run from fear. Fear of everything. Fear of losing everything, losing everyone I love and need.
I run from loss. Loss of friends, family, my old life, my motivation.
I run from the Monster. Not the MS monster, but the monster I believe MS has created of me.
I run from the fact that someone will catchup to me and see through the mask and see the the chaos behind it.
I run from the jumble of thoughts that are constantly buzzing in my brain and can't be organized.
I run from all the things I dream of, but will never be.
I run from the tears, and the anger.
What I run to I'm not sure yet, but it has to be better than what I'm running from right?
Thursday, July 11, 2013
"sure he can liquify 80% of his food, but he doesn't have two kids and a husband who like to have hot meals and expect me to make them"
" I bet he doesn't have a mountain of laundry to do that's why he can workout two hours every day"
"snowboarding in Chile must be nice I can't afford to go to Cedar Point today with my daughter"
I hate these thoughts and feelings. I really do, but sometimes they just hijack my brain and all of a sudden I'm in tears and angry at the world.
I do take care of myself. I eat well most of the time, I run when I feel well enough to, I'm even trying to work in some strength training, I take my medication, but I'm no Montel that's for sure.
I guess we all don't need to be Montels, as long as we are taking care of our bodies and minds the best we know how, and with the resources we have.
Wednesday, July 3, 2013
Sometimes taking those first steps into something that you really don't want to do will lead to something beautiful in the end. You just have to be open to the experience and let yourself see the good in the moment and the outcome. I have never come home from a run and thought "wow I wish I hadn't done that".
This is the attitude I'm starting to adopt with my medications now too. I really hate Rebif. I think I have made that very clear in past posts, but I know the few seconds of discomfort will ultimately lead to a few more years of quality life for me. After all these years of dealing with the Monster most would think that I would have figured this out by now, but I'm not the quickest when it comes to these things. Maybe it's my aversion to change, who knows, but this is something that is working for me right now.
Monday, July 1, 2013
One of the biggest things I have always wanted to do is learn how to ride a motorcycle. My dad has always ridden and currently has three bikes of his own. I remember riding with him when I was very little and loved it. I know sounds silly for a grown woman to still hold on to this, but I always imagined riding a motorcycle of my own someday. I know this sounds silly to many people for a grown woman to hold on a desire like this for so many years, but I can't shake it. I know they are dangerous for healthy riders who don't have balance and cognitive issues like I do with M.S., but I'm still going to learn.
My fabulous husband came home from the local bike shop last week, and said "let's take the motorcycle course together". I was shocked, and quite honestly more that just a little nervous, more than anything though, I'm so stinkin' excited I can't stand it.
Sunday, June 30, 2013
How do I turn that off? I remind myself that I am allowed to be interested in things outside my kids. I have to remind myself that over and over, but It's starting to stick a little I think. My dream ever since I was a kid was to write. Sure I had other so-called dreams, I was going to be a psychiatrist. I even ran a group counseling session in sixth grade with a group of kids who walked home from school with me. That experience was really interesting and I know my friends liked it until one of the girls told me how abusive her mom was and I convinced her to go our teacher and tell her. Well she did, and I ended up not being allowed to talk to her anymore, eventually they moved out of the neighborhood. My little group broke up after that because I "didn't need to know everyone's business". I also wanted to be fashion designer, but couldn't draw to save my life, there was brief stint where somehow I was going to be on Broadway even though I never had a dance lesson in my life , and couldn't carry a tune in a bucket.
Those were all little girl dreams though. Writing is what I keep gong back to. In high school my teachers were all convinced I would be a published writer. I used to write stories that would make people cry or totally freak them out, but either way it was a gut reaction and I loved it. As an adult I have had a few things published locally here and there, but mostly essays and pages of opinion.
I want more though. I want to write something that will touch souls, make people question reality, create characters that everyone loves, hates, or wants to be.
The problem is I don't know where to begin. I did find this page http://highered.mcgraw-hill.com/sites/00725127/student_view0/exercises-999/creative_writing_exercises.html. It gives some great promps to get those creative writing juices flowing again. I'm going to go the the store and pick up a brand new clean note book and give some of these a try. I like to hand write when I'm doing something like that because I can't go back and edit things out. They can just flow whether they make sense or not. Wish me luck. Maybe someday I'll have something worth reading besides all these whiney ass posts.
Saturday, June 29, 2013
I think I'm having some sort of mid life crisis here at the ripe old age of 42. What the hell is this about? Maybe I'm reading too many YA books lately, BTdubs, if you like that genre I am currently obssesed with the"Experiment in Terror" series by Karina Halle https://www.facebook.com/ExperimentinTerror?fref=ts. Love, love the way this chick writes.
Anyway, to get back to my little MLC issue, I think its more than just dealing with MS. We just returned home from our first family vacation in years and it was absolutely great, but I have this sense of sadness clawing at my brain that I just can't shake. On the way home I kept thinking, "everyone has something to go home to except me". My Ace has her swimming, Lil has dance, Keith has work, and I have.....weeds to pull? I just don't know what to do with myself. I have let friendships fade, I really have no interests right now, and I just can't get motivated to find new ones. I know those are all signs of depression, but I don't think that's the problem. I think I may be bored? I want something more for myself. I don't want to always be up at 6:00 a.m. and start the day doing the same dishes, laundry and dusting. I feel lost. I was fun once, a long time ago, I think. I had a sense of adventure. I still love to run, but lately it's not been enough.
My husband's best friend and his wife just had their fourth child this week, a boy finally, and I feel bad for my husband. I know he wanted at least four kids and we talked about it, but after my Lil was born I just couldn't imagine another child. I was exhausted, overwhelmed and knew that two were enough for me. He says he's fine with it and couldn't more proud of our daughters, but I still feel like I let him down. I didn't plan financially for the day when I couldn't work anymore even though I had plenty of time being diagnosed at 20yrs old. I sometimes feel like he got the raw end of the deal when he decided to stick it out with me.
Oh and to top it off I went ahead and chopped all my hair off. I was going for a cute pixie cut ala Michelle Williams or Ginnifer Goodwin, but ended up with frumpy old lady
Friday, March 29, 2013
My kids and husband still laugh about the bears (pillows) I was hiding from in the living room. Yes there were bears (pillows) on my couch and I will testify in court to that fact. Apparently I woke up in the middle of the night screaming about "the people", I don't know what people, but I was really angry about them watching me. Anyway, my dear hubby thought I would be much more comfortable on the couch, which really means he had to go work early and wanted to sleep without me freakin' out every five minutes.
Well he obviously didn't know about the bears (pillows) sitting on the couch so when he carried/dragged me in the living room and I threw myself on the floor he was quite shocked. I knew the only way they wouldn't eat me is if I lay on the floor under my special blanket.
Needless to say that was the last time I took Ambien.
I did indulge in some self induced guilt trips, about being a burden, but my family snapped me out of it right quick. They're great like that. They remind me this set back won't last forever and things will be back to normal soon. I'm still not one hundred yet, but I'm not sweatin' it....too much.
Hope to get back to the running trails next week. I have to keep in shape just in case the bears come back you know.
Wednesday, March 20, 2013
|My long suffering awesome Hubby|
Tuesday, March 19, 2013
Now Prince Charming wasn't always so charming after my diagnosis. There was a lot of upheaval for two young people at the ages of 20-me, and 25 him, just starting out in this quest called life. I was determined to be strong and not let anything or anyone keep me down. He had a hard time understanding I was scared absolutely shitless and thought I was dying. We were miserable, tired and broken hearted, and not on the same page at all, but we weren't quitters. We kept trying to make the relationship work. We were determined not to lose each other. Problem was I was really good at pushing him away with angry words and any object I could turn into a projectile, and he excelled at shutting down. We still never gave up on this relationship, and when a shit storm hit we were each other's umbrella.
We went on to get married after about six years of living together. Our wedding was in the month of December so I wouldn't get overheated in my gi-freakin-normous wedding gown.
Just because we were married our problems didn't magically go away. My condition kept getting worse and I kept getting angrier. We continued to plug along and eventually started a family. We are blessed with two daughters that are our lives. We still have issues, but instead of shutting down, or throwing fudgesicles at each other- yes, that really happened and we lived with the fudgy spot on the wall for months because we refused to wash it off- we turned to a proffessional for help. She has helped us look at what the other is going through. I realize it may be hard on me to be in the middle of an exacerbation, but it's just as hard for him to be my caregiver and take over all the responsibilities I have at home plus work his own job. We still stumble and slip back into our old ways once in a great while, but we can recognize it for what it is and move on. See I'm not the only one "growing up with MS", my whole family is.
Ok enough mushy gushy stuff on to the dirty details of.....duhn duhn duhhhhh.... Day 1 of Solumedrol.
All went well except for the four blown veins it took to get my IV started. I always joke with my family about my super strength-i have a lifelong superhero fascination/obsession- and almost have myself talked in to the fact that I have super powered veins that won't allow the steroids to enter my system.
My hubby thinks I'm just delusional and nuts, but he's not complaining when he sees me in my Wonder Woman panties ;)
Monday, March 18, 2013
Well balls! The call always leads to IV steroids. Which always leads to, "oh crap, I don't have anything in the house for Lilli's lunch, how am I going to pick up Abae and Erica from school?, Keith, you can't miss work to take me everyday, we have no clean towels, blah, blah, blah". It's the mental list of "disasters" that I come up with to not do the Solumedrol treatment. It never holds up, and I fold like a cheap suit.
Solumedrol is the name for methylprednisone, and is administered by IV drip for about an hour each of the 3 days of treatment. It drastically shortens the time an exacerbation lasts. Oh yeah and one really important thing is that IT SUCKS.
Don't misunderstand, it really does help. The days during the infusions you almost feel like you can do anything. Nothing hurts, you are not tired, your junk drawer gets cleaned out and you feel good. Really good. That is until the day after your last treatment and it starts to feel like you are shoplifting tennis balls in your armpits, if anyone looks at you funny or otherwise, you will rip their throat out, and then cry hysterically about it after. Better hide the Little Debbies, pretzels, chips, candy, and cake topper sprinkles because you will eat them all, and then cry hysterically after. I now try to stock up on carrots, celery and peanut butter. Anything that crunches takes the edge of for me. Sleeping will be your best relief until you wake up shaking and soaked from sweating. I always keep an extra set of pjs right by bed for a quick change.
I have learned over the years what expect from this treatment. I now know not to plan anything for at least two weeks after the last day of treatment. That seems to be how long it takes to clear my system and for the withdrawls to subside, plus my immune system will be somewhat compromised so it's good to steer clear of large gatherings. Water is my best friend, both for drinking and cool relaxing baths.
Tomorrow will be my first day of this fun, at least I'll have clean junk drawer to show for it.
Sunday, March 17, 2013
I am though. Mostly because I don't like the attention it brings. I don't like to explain why I need it this week and not next. There's an old superstition that you don't say the name of evil so as not to draw it down on you. That's how I feel about it sometimes, don't think about it too much and the monster will leave me alone. My logical mind realizes this is crazy, and it's my logical mind that is writing this blog, while my Polish Busia mind is crossing it's self and throwing salt over it's left shoulder.
I really have gotten better about accepting help and accepting the fact that I need cane sometimes. I even bought one that is hand carved and completely unique from a talented artisan several years back at my favorite Renaissance Festival. Now when I carry it I get compliments on the cane and not many "what did you do to your leg?" comments.
The one thing I still have not been able to get comfortable is using my disabled hanger for my car. I just won't use it, much to the chagrin of my kids. I don't know why. I guess I associate it with the elderly and wheelchairs, of which the former I am not, and the latter I don't plan on using any time soon
Although..... if I do end up needing to use a wheelchair, I want one like +Lady Gaga is currently using.
Yeah I think I can rock that ..
Thursday, March 14, 2013
Many of you may or may not know this is the official MS Awareness Week, and I felt the need to really try my best to spread the word. I posted this status on a few of my favorite running pages on facebook March 11, 2013:
"Today I ran 3.5 miles. I ran for all the times I was stuck in bed with IV poison coursing through my veins. I ran for all the injections I have to give myself and the side effects I have to endure from them. I ran for all the tears and the times I couldn't and won't be able to get out of my bed and just walk. I ran for my daughters so they can see this disease won't win. I ran for all the others whose stride was stolen by this monster.
Today starts National Multiple Sclerosis Awareness week. Even if you don't personally know someone with MS maybe you could in your heart, dedicate one of your runs this week to those of us who can't."
To my great appreciation and surprise I was overwhelmed with the support I received for the post. My very favorite page https://www.facebook.com/womensrunningcommunity?ref=ts&fref=ts Women's Running Community, actually created an event to ask people to keep those who are not able to run in their thoughts during their runs this week. There was an overwhelming response from those who have been personally touched by this disease either themselves or by someone close to them. I read through each and every comment, and was touched beyond belief. I was thrilled that this opened up the topic for people who may not always feel comfortable sharing their experiences. That is my whole intention for writing this blog and speaking so openly about MS. It is sometimes called the silent disease, but I believe it's time for all of us to make some noise.
If you are newly diagnosed it's overwhelming, scary, confusing and makes you damned angry. I get it. Don't keep it in though, talk to someone and let it out.
If you are an MS veteran, it's still overwhelming, scary, and confusing and at times makes you damned angry. I get it. The beauty of being more "experienced" is that you have the ability to reach out to others and help them navigate this mess, and in the process help yourself.
The catchphrase "MS kills connections" doesn't have to be true if we all try to reach at least one person, connect with them and help make this journey bearable. I hope that somewhere someone is reading my rambling posts and saying to themselves "wow, I'm not alone" and they get a little comfort from my words.
Monday, March 11, 2013
Today I ran 3.5 miles. I ran for all the times I was stuck in bed with IV poison coursing through my veins. I ran for all the injections I have to give myself and the side effects I have to endure from them. I ran for all the tears and the times I couldn't and won't be able to get out of my bed and just walk. I ran for my daughters so they can see this disease won't win. I ran for all the others whose stride was stolen by this monster.
Today starts National Multiple Sclerosis Awareness week. Even if you don't personally know someone with MS maybe you could in your heart, dedicate one of your runs this week to those of us who can't.
Thursday, February 28, 2013
How do I handle this? Now I just sit down and write a list of things I need to do. I write down everything that comes to mind no matter how off the wall it is.
Grocery store: check
clean the bathroom: check
repaint all the woodwork in the house today: if I have time
Sometimes if I can get an early enough run in the list will be in my mind, but it seems clearer and more doable. That's the beauty of running for me. I can think about anything, but all my chores don't seem so daunting.
This hasn't always been the case for me. I used to be paralyzed by the mounting chores and everyday life things that needed to be done I wouldn't even know where to start. So I wouldn't do anything. Then I would be mad and frustrated even more because I wasn't accomplishing anything. It was a vicious cycle. When I worked it was even worse because I always wanted to please everyone at my job and not make mistakes that someone would have to clean up that I would get stressed and exhausted and eventually bring on a relapse. Then I would miss work and people would have to cover my shifts and clean up what I left. By the time I got home from work I couldn't function like the wife and mom I wanted to be.
|My list notebook|
Today will be a list day for me.
update blog: check
Saturday, February 23, 2013
I find myself being very hypocritical of my last post this morning. I'm sitting here listening to a woman recount a recent surgery and talk about every detail and how hard it was on her. She is very "fragile" and now afraid to leave her house. Now we are hearing every detail of this "traumatic ordeal". As I sit here I'm thinking to myself "I would never talk about my medical issues to people like this. You're such an attention hog" How horrible am I? Pretty horrible I think. Granted I don't really care for this person much in general, and we have all been hearing this same story for the last four weeks, but I wish I could be more gracious.
I tend to not have very much compassion for people with "normal" medical issues that will get better eventually. Sadly as a Military wife when I hear other civilian wives boohooing because their husbands are out of town for for a week I tend to think "oh suck it up buttercup I haven't seen my man for three months".
Do I think I'm a better person because I don't talk about my illness and revel in the attention, or because I can successfully live like a single parent for months on end? Absolutely not. I think it makes me human. Not sure how good of a human it makes me, but that's just what it is.
I really don't like this about myself, and am trying to change this aspect of my personality. I recognize I could do better and maybe that's the first step to changing.
Friday, February 22, 2013
I just posted this on https://www.facebook.com/nationalmssociety?ref=stream on the post about Jack Osbourne and Sharon Osbourne doing a PSA on MS awareness on CBS this afternoon. Some of the comments really bothered me and made me think about often people are quick to judge and jump to conclusions. It seems even those of us in the same fight still find ourselves judging each other. We either see ourselves as some type of martyr for our suffering ,or want to one up each other on that suffering, and compete on who can be the most obviously disabled:
"You only inject 3x's a week? Well, I self inject everyday",
"wow you're lucky you don't need your cane everyday like I do, and still get ssdi, because I keep getting denied",
"well when you start losing bladder control then come talk to me"
and my all time favorite, "well at least you're not dying of cancer on top of it" Ding ding ding, I guess you're the winner then, congratulations.
Sheesh! Why do we do this? Does it really make us feel better to be the best at being sick? Where does this get us? Even sicker and more sad in my opinion.
When we concentrate so much on our illness and keep it in the forefront of our minds by judging how others are surviving, we can't really make the best choices for ourselves. If we are too busy being close minded about someone's choices and how they are coping, we tend to forget how to let go and do what is best for ourselves. When we say "I don't know why anyone would depend on the interferon drugs, I control my MS with diet and exercise. You're just a sucker to buy into the drug company propaganda." We are not only being dismissive of their choice, but shutting ourselves off to a possible treatment we may need in the future. If you have been denied SSDI and think you need it more than another person because you need a cane more often, then you are being hurtful and disrespectful of the struggle they are going through. How about instead of saying "must be nice to stay home, I keep getting denied." ask the person how they were able to be approved. Or better yet have some compassion because for many of us staying home was not by choice. I personally loved my job. I simply couldn't work, be a wife, mother and active member of society because of my limitations.
Having MS shouldn't be a competition. We shouldn't be dismissive or disrespectful at all in life, and I know that is naive. I tell my daughters all the time that as women we should never try to tear each other down. We should celebrate each accomplishment another woman makes because there are too many factors out there working against us as women. I would echo that same sentiment to those of us in the MS community.
Thursday, February 14, 2013
- Women's Running Community - WRC Jeannine Burgess Czop you are so inspiring. Have you ever consulted with an orthotist to see if some kind of ankle foot orthosis would help with your drop foot? Also I love what you said about running "I have been dx'd for 21yrs now. I was just a baby at 21 when this monster hit. Running helps so much not only physically but mentally as well. I am still learning new ways to cope everyday, running is the best one yet. I'm not fast and it's not pretty, but man I do love it!" Do you mind if I share this with the rest of the community? You are amazing. Good luck and God bless.It's very hard for me to see myself as a inspiration to others. They only see what I write, and not the turmoil I often feel about myself and how I handle this disease. When I write it comes from a pure honesty in my heart. I only hope that the things I put down can somehow inspire, or even soothe another soul, and to recieve feed back like this makes me smile.During this time of Lent I am making a consciousness effort to make others feel good about themselves too. Maybe just a small comment to a stranger about their cute shoes, or a heartfelt "thank you " note to a fellow dance mom who drove my daughter home one day. Telling a waitstaff's manager what a great job they did. It really is the little things that make a difference in my life and hopefully in other's also.Little accomplishments like getting out of bed when my body says "no don't", actually remembering to bring my grocery list to the store, finding the right word in a conversation without stuttering or talking jibberish, staying up past 10pm, pushing on that extra 1/10 of a mile during a run. Some folks can take all these things for granted, but not me. I basically throw myself a ticker-Tate parade for this stuff.My wish is that anyone who reads this today whether they are religious minded or not will take these next 40 days to appreciate the little things and make someone feel good about themselves. And after 40 days it should be a wonderful habit.Oh and P.S. if you love to run, just getting started, or are just looking for some inspiration check out the Women's Running Community page on Facebook.