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Thursday, February 28, 2013

I love my lists

Today is a bad focus day for me.  I can't really concentrate on anything, I keep bouncing from one unfinished chore to another.  Prioritization is non existent at the moment.  I'm easily frustrated and moody.  Sound like PMS to you? Well it's actually MS.  To be more specific it's a side effect of my medication and MS lesions.  Think is sounds bad just imagine PMS + MS , yikes time to run for the hills!

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
Now that I don't work outside the home life has become more manageable.  I can plan days around the day after my Rebif shot when I tend to be less focused and more moody.  I still have the not being able to focus quite a bit, but now I can handle it on my time and in my own way.  I love my lists.  They make me feel more in control of my life.  I like to see each item checked off when I accomplish a task, and the ones that are left don't seem as insurmountable on paper as they are in my mind. I always hand write them on regular notebook paper.  I like to see them and have easy access to them for notes.  I scribble and doodle, all things I can't do on my phone notepad.  I also keep all my lists.  I love looking back over them and feeling like I have been living.

Today will be a list day for me.
update blog: check


Saturday, February 23, 2013

Suck it up buttercup

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

the MS competition

"Wow, I have to say I'm pretty saddened by some of the comments here...Kim, sorry your son doesn't look healthy, but do you realize how offensive that statement is to many of us dealing with this monster every day of our lives. Am I or Jack O supposed to be in wheelchairs to be considered "sick"? I'm here to tell you I work my A** of everyday for the last 22 years to stay out of a wheelchair, I endure self injections and all the side effects that go along with them, and just because I am able to live a semi-normal life and not look sick does not mean I don't have symptoms you can't readily see. I remember getting slammed not so long ago when I made a comment about not being happy hearing all about Anne Romney's stuggles w/ms. It really made me step back and realize that I have no right to assume someone is better off than I am or that my struggle is harder therefore making me a "better" MSer than someone else. This young man is just starting his lifelong journey w/this monster and if he and his mother can use their celebrity to bring more awareness to the cause I for one say more power to them!"

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

The Little Things

I just wanted to share a little something that made me feel really good about myself last night.  I follow this group on Facebook  Women's Running Community, and I had asked a question about using a metronome in hopes of getting my gait a little more steady and was overwhelmed with answers and support.  I felt I needed to reply to to all the love and this is what came back from the administrator of the page:

  •  
     
    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.










Monday, February 11, 2013

A Trail less Traveled

A trail less traveled

Wow what a fun suck that last post was huh?!  That was me in the raw for sure.  I don't have tons of these dark moods, when they hit they hit hard, fast and leave me spinning for awhile.  I did end up going for a run after that last post.  It was cold, hard and slippery, but the beauty far outweighed all the negatives in the end. I took a trail that I normally don't run just for a change and too build my confidence.  Isn't crazy how the little things in life can have such a profound influence on our psyche? 

I put so much pressure on myself to do the "right" thing that sometimes I just paralyze myself instead of doing the best thing for myself.  I have to remind myself I'm enough.  I do what I can when I can and my family and friends love me, so why shouldn't I love myself too.

I do want to touch on some of the side effects of the Rebif that I take for those of you not familiar or trying to choose a medication.  Please remember this is only my experience and you should always talk to your doctor.  Depression is a major factor in my life and the other side effects are basically nonexistent now, although I do have welts for a few days after.  Looks like I've been attacked by an octopus.

Side effects

Injection-site reactions and flu-like symptoms are two of the most common side effects with Rebif® (interferon beta-1a), but there are others.
If you are experiencing injection-site reactions and flu-like symptoms, don't be discouraged. MS LifeLines® can give you tips and information that may help you manage these side effects. Read on for some tips that may help.
Potential serious side effects of Rebif include depression and risk of suicide, liver problems, risk to pregnancy, injection-site problems, and severe allergic reactions. Allergic reactions are rare and may be associated with difficulty in breathing and loss of consciousness, which require immediate medical attention.
Please see important safety information below and the Rebif Medication Guide and Prescribing Information in the top right corner of this website, and speak with your doctor for more information.
 http://www.rebif.com/pages/starting-rebif/side_effects

" Depression. Some patients treated with interferons, including Rebif, have become seriously
depressed (feeling sad). Some patients have had thoughts about or have attempted to kill themselves.
Depression (a sinking of spirits or sadness) is not uncommon in people with multiple sclerosis.
However, if you are feeling noticeably sadder or helpless, or feel like hurting yourself or others you
should tell a family member or friend right away and call your doctor as soon as possible. Your doctor
may ask that you stop using Rebif. You should also tell your doctor if you have ever had any mental
illness, including depression, and if you take any medications for depression."http://www.fda.gov/downloads/Drugs/DrugSafety/ucm089019.pdf

These two websites are full of great info on Rebif and can hopefully help you in your decision making.  If you are a caregiver maybe this will help you understand a bit of what your M.Ser is going through. 

I myself use Rebif because I couldn't tolerate the Avonex.  I had never been able to get over the flu like symptoms even after a year and a half, plus the depression was much worse.  Copaxone didn't work either as I kept having relapses.  I'm not willing to go the Tsybari route yet.  So this is self torture I choose.  It makes me sad sometimes, it leaves welts on my body, and it's a nagging chore in the back of my mind everyday. 

I find that when I take a trail less traveled I feel stronger and more confident and then these feelings and trappings of MS don't have as much hold over me. 
I hope everyone can find a trail less traveled in their own lives.


Friday, February 8, 2013

No motivation

I haven't written a new entry in a while.  Why? No motivation. When I say no motivation I mean none whatsoever for anything at all.  I haven't run in weeks, I haven't done a Rebif shot in weeks, I haven't been watching my diet.  I haven't done anything.  I don't know if this is just normal or M.S. or major depression.  I am on the edge of tears everyday, and dropping a few as I type.  I hate this.  I feel so awful.  I don't want my kids to see me like this, but it's just so overwhelming sometimes. This feeling of not being a good enough mother, wife, woman, and person in general.  I'm hyper-critical of myself and everyone around me.  I see a young woman running everyday I take my daughter to swim practice and think, "I hate her"  what I really mean I "I hate myself".

Sorry this is not some uplifting post like I have been trying to do, but the feelings are so intense I feel like my body is just going to collapse in on itself.  Maybe my mind already has.  This is the only way I have to really reach out without burdening my family and friends.  I don't want to bring this stuff to their doorsteps, they have their own battles to wage in life.

Last night my daughter had a night out with her high school swim team.  It was arranged by a couple mom's that I just can't seem to get in the circle with.  I get so angry because I want to be that mom who the team knows, and who makes a difference.  I'm not. I'm not in any of the inner circles of any of my girls activities.  I used to be at my youngest daughter's old dance studio, but when we changed studios I kept myself apart from the new mothers. 

I'm just feeling sorry for myself.   I have to get a grip.