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Saturday, December 29, 2012

The little things

We got a beautiful fresh blanket of snow here overnight. I love it. My dogs love it. My kids love it. We all just love it :) I for one will be making the most of it today. I may sound all Sally Sunshine, but it's really hard to find the joy in life sometimes and I'm trying to appreciate the little things.
I am learning that if I appreciate the little things more I can handle the setbacks a bit easier and move ahead.  
We all had a life before MS right? Think back to the things that gave you joy, but try not to focus on what you can't do anymore. I loved going sledding as a kid and even as a young adult.  I may not be able to climb the big hills anymore, but I can still crawl up a little hill. I can still watch the kids and listen to the joyus squeals of laughter as they fly down the hills.  I can still stand in the backyard and throw snowballs for my dog Oliver. He doesn't care if I can't throw them as far anymore because he's still wondering why they disappear when they hit the ground.  I love to watch him dig in the snow and then look at me in bewilderment with a snow covered muzzle. My little Annie-Awesomsauce gets mini snowballs attched to her feet and she just runs around in circles trying to figure out where they came from, then her terrier nose picks up a scent and the snowballs are forgotten and she's off chasing long gone squirrels and rabbits.  Little things, but little things that can still make me laugh.
I hope everyone can be aware of the the little things today. Maybe it's the snow, or a song you haven't heard in ages, the quirky smile of your spouse, or just the contented purring of your cat.  
Today I will be aware that my fingers and toes will be numb from playing in the snow instead of from MS
  I hope you all can find a little joy today.

Friday, December 28, 2012

Who do you trust?

You know all those questions they ask you at the hospital before are discharged? The one that sticks most is "Do you have someone at home to help you?"  I have always been able to answer with a resounding "Yes".  I know I can count on my husband, parents, brother, and even  my teen daughters now.

I have been thinking about what support means to me.  To me it means having a person or people I know I can trust.

I can trust them not to drop me if I need help standing.
I can trust them not to drop me when I cry.
I can trust them to make me laugh when I need it most
I can trust them to give me honest feedback.
I can trust them to defend me when I can't defend myself
I can trust them to ask me how I'm feeling then make me answer honestly
I can trust them see me at my worst and still want to be in my life

Not everyone has passed my trust standards.
I think most people want the be there for a person in need, but just don't know how.  So instead they distance themselves by telling themselves it's out of respect for my privacy.  They don't want pry or "get all up in your business".  Well, that's fine and all, but it's not like I give my medical history every time someone asks "How are you?" 

Some people simply can't believe that I'm really "that sick".  I guess because I can still walk most of the time and I like to run I'm not sick enough to warrant any of their time or compassion and they move on the the next "project" person.

When I stopped working and had to go on SSDI, I would get little comments, "must be nice", "wish I could just stay home", "wish I had that kind of time".  I now answer with "yeah its been great to not be able to walk sometimes and be forced to stop working at job I love"

It hurts when these people are the ones I thought I could trust for support, especially when they turn out to be a family member, or people I have know my whole life.

To be honest I have pushed some people away.  I wasn't always Ms. Sunny Side up, alot of times I was Ms. Black Coffee extra bitter please.  Sometimes I didn't want to deal with someone else's problems when I had too many of my own.
And sometimes, man, this is going to hurt to admit, I was jealous of what I thought was their perfect lives.

Do you have support in your live? Do you have someone or someones you can trust? I hope so.  This can be such a lonely journey.

Thursday, December 27, 2012

I can Fire him!

Do you love your doctor? I do. Not in a creepy inappropriate way, but in a very satisfied I know he's got my back, -and brain- way. My mother gave me the name of my current Neurologist given to her by a co-worker who had been newly diagnosed with MS and just raved about this doctor, so I thought what do I have to lose?  In the ten years I have been a patient of his, he and his staff have proven time and time again that they are there for their patients.  From same day return calls, often within an hour or two, to immediately securing me a space in the infusion center.  My neurologist is the one who broached the whole social security disability issue with me and then backed it up with a letter stating why he felt I needed and  deserved social security disability benefits. He takes an active interest in my life outside MS, he knows my husband is in the military asking about his well-being,  and asks about my daughters.  He will even go as far as shamlessly using my girls to guilt me into keeping up on my shots, "Do you want to continue going to their swim meets and dance competitions or do you want to sit at home and wait for them to call you and tell you how it went? Keep doing your shots!"  His nurse is a total dream to work with and has gone to bat for me over the years battling my insurance company.  I can always count on her for good advice about many of my health concerns, from MS to my depression issues and even if I think I may have a UTI.

I am very fortunate to have such a great office to deal with especially since that hasn't always been the case for me.

Being diagnosed at the young of 20, I initially just listened to what the doctors I first encountered during this diagnosis process told me. I didn't have any health insurance at the time and a lot of the times the office staff weren't very personable when they found out.  It was hard to get treatment when I needed it, and I just didn't know enough to demand it for my self.

Once I was married and had insurance through my husband I found a neurolgy group that had an MS specialist.  He spoke to me about Betaseron and Avonex, he got me steroid treatments after waiting it out a week or so to see if I got better first..."Whoa wait a minute", you say? "made you wait out week or so?", you say?.... Yep that should have been a warning sign, but it sadly I didn't know better.  I should have known that it should not take 2 days for someone from his office to return my calls. I should have known better when he always treated me like he had never laid eyes on me before at every office visit for almost 8 years. My eyes were opened when  I was sitting in the exam room,unable to urinate, walk, or control the spasms in my left arm, and his nurse/office manager came in and said there was a problem  with our insurance.  We had recently switched providers, and unless I paid for the office visit right then he would not be able to see me.  My husband was livid, I was in shock and didn't know what to do.  She said my other option was to go to the ER.  Well I'm ashamed to say we paid for the visit. Ugghhh, I didn't know better? Nope.

I decided I did not deserve to be treated that way. I was a human being and should be treated more than just as an office fee or insurance claim.  He works for me. He works for me.... and I can FIRE him!  It was an epiphany.  I could take control. Even though he had degrees and education he still worked for me and I didn't have to take that kind of treatment anymore.

I learned valuable lessons from my previous doctors:

I have to be my own advocate for my health.
I will never allow a "professional" to treat me like I don't know my own body and mind.
I will speak up when treated poorly.
I can "fire" doctors!

You might be asking, "well what happened with that last visit?"  I did end up in the hospital for IV steroid infusions and our insurance issues were taken care of very quickly, but I never went back to that office again.  I sent a very strongly worded letter stating how I felt about my treatment by the doctor and his staff.  I never received a reply and when I switched to my new doctor, they wouldn't send my records to the new office without me paying a copy fee first.

Well at least I know better now.

Friday, December 21, 2012

Weebles Wobble

Remember the weeble wobble theme song? "weebles wobble, but they don't fall down"  I like to think of myself as a weeble wobble.  I wobble around life and sometimes get knocked for a loop, but I don't let myself fall down.

Maybe I have the advantage of being diagnosed with MS so young.  You know that invincibility that you feel in your early 20's.  I still had my life ahead of me and could do anything. I could still party, and stay up all night.  I could drive straight through to Florida, an 18 hr trip, just for the weekend.  This disease was not going to define me, I wouldn't even give it a second thought. Unless I couldn't see out of my right eye, or I couldn't control my left arm, or I wasn't able walk, but hey I was young I would bounce back. Right?
 The disadvantage was the invincibility you feel in your early 20's.  I partied and drank and smoked, I didn't get enough sleep, I didn't take my Dr. seriously about disease modifying drugs, I didn't pay attention to my body until I couldn't see, or move my arms or legs, or I was so exhausted I kept losing jobs for calling off. I wobbled, but I didn't fall down.

When my 20's started winding down and I gave birth to my first daughter I started taking my diagnosis  a little more although not much, and when I had my second daughter at 28 I still wasn't fully on board with this whole taking better care of myself notion because now I had two precious little babies to raise.

I wish I could say I made all the right choices and called my Dr. immediately, but sadly I was still thinking with my 20 year in denial mind.  Not until I was hospitalized for about 2 wks when my youngest daughter was 9 did I grow up and start thinking like an adult.  My baby girl was so distraught that I was in the hospital she would text me at 3 and 4am every night to tell me how much she missed me, she couldn't go to school because she cried so much.
I really wobbled, but I couldn't fall down.

I finally made the commitment to the disease modifying drugs.  I eventually settled on Rebif.

I realize I should have been more proactive with my health.  Would it have made a difference to where I am at now I don't know, but it would have saved my loved ones many sleepless nights.

I still wobble especially after having to give up work for good, but that's another story and I didn't fall down.

Thursday, December 20, 2012

"Helpful" Advice

I haven't been feeling well. What a loaded sentence that is from someone with MS.  It could, mean "I'm tired", "I don't have much strength", "my eyesight is poor", "my speech is off", "I have a UTI", or just simply, "I'm down in the dumps so leave me alone"  Many times it's a combination of one or more of these symptoms.

When I don't feel well, I feel the need to downplay how truly bad I am feeling.  Why? Because I don't want to burden friends and family with my problems.  I don't want to admit to myself that this is another relapse.  Mostly because I don't to hear the "helpful" advice from my well meaning family and friends.

After over 20 years of this crud, you would think I would know how to handle a relapse right?  Not according to my family.  "did you call the Dr.?" is always the first question, followed by "well why don't you just lie down and take a nap".  Bless their hearts, but sometimes I just want to shake 'em all.

My husband used to be the worst about this.  He used to tell me it's all mind over matter, Heor stop talking about it so much and it won't affect you so badly. We have been together for 25 years so he has been here since my journey began with MS.  This year was the most trying of our relationship. We actually went through about 6 months of counseling this year because communication was becoming such an issue with us and it came down to "Shit or get off the pot" for our marriage.   I didn't think he truly understood what I was going through and that he didn't want to try.   Another issue was when he came home from deployments, whether they were stateside or not he was a nightmare to talk to about anything and didn't think I really understood the pressure he was under in his position at the base.

Therapy was a eye opener because he told me how much he loved and respected me and was proud of all the things I still do. I was really stunned.

I learned that when he comes home I needed to just let him be for a few days.  I actually started a journal of daily happenings while he was gone on deployment that he could read at the best time for him.The counselor told him to just let me vent if I have to because he is the one safe person in my life that I trust the most.  We are partners in this and we have to be able to communicate with our partner.

Counseling was a great experience for us and my husband even asked what her normal rates were since our sessions were being covered by Military One Source,, at the time.

No matter how long a couple has been together there are always going to be new challenges to face and new growing pains to endure.

Monday, December 17, 2012

That Little Green Monster

I decorated Christmas cookies with my teen daughters yesterday.  I just bought the precut sugar cookies and we made the icing and got busy with some cookie masterpieces.  I was feeling pretty good about it until right in the middle our very good friend dropped by with a big box of cookies his wife made.  Not just sugar cookies, but gingerbread, fudge, peanutbutter, chocolate chip, rice crispie treats, the whole freakin` cookie cookbook.  I looked at my pre-cut sugar cookies and felt very underwhelmed by my efforts at that moment.  I adore this woman, but at that moment I was angry.  Here she is pregnant with her fourth child, works full-time as an x-ray tech, runs a Brownie troop, makes and paints wooden signs and sells them at local craft shows, takes her kids to the zoo on the weekends, just a ball of energy while looking like a 6ft supermodel to boot.

Why did I get mad? Because she has all the energy and ambition to do all those things and I don't.  Instead of looking at my daughters who are teenagers and still willing to spend the weekend with me, and having a great time I was jealous and and angry that I couldn't do all those other things anymore, and it made me feel like a failure.  My husband doesn't think of me that way, my daughters don't think of me that way, my friends don't think of me that way, and even this woman who is a true angel, has told me she looks at me as an example for how to raise her daughters. Did I mention she is also 12years younger  than me? Arrgghhh, why then do I do this to myself?

Maybe because after 21 years of MS I'm still in somewhat of a mourning stage. I mourn what I was not able to accomplish when I was younger, like completing college. I mourn that I never was able to achieve my true potential like so many of my friends. I mourn the carefree life that I imagined as a young girl.

I know that all those things are silly and I really am happy with the life I have made for myself, but sometimes these doubts just creep in and I have work really hard to shoo them away.

Thursday, December 13, 2012

Am I a Fraud?

I ran a 12k race at 12:12am on 12/12, and although I am seriously proud of that accomplishment I have a little niggle of guilt in my periphery.  You see, 2 years ago I finally had to give in and do the one thing I have dreaded since my journey with MS began more than  20 years ago.  I applied  for now receive social security disability benefits. I simply couldn't work and function like a healthy person any longer.  I tried, boy did I try.  I couldn't keep up with my family anymore, I had to always make the choice between work or spending the weekend at a swim meet or dance competition, but couldn't do both because it was too exhausting.  I couldn't think straight, bills were not getting paid at home or at work. Too many things to really even list, but the bottom line was something had to give and it was work.
I felt incredibly guilty, like I had somehow given up.  I hated that financially the burden was now on my husband.  I felt like people would look at me as a fraud if I did "normal" things like going the grocery store or working in my garden.  I didn't know how to be disabled.  After some therapy sessions I have come to accept that I haven't given up I just started a new phase in my life, and I earned my Social Security its not a handout.

I stated running about a year or so ago because my Air Force husband is big on fitness and runs the fit tests at our local base and he encouraged me to give running a try.  I. Loved. It.  Granted my gait is off and I have to nap after every run, but the it makes me feel graceful and free.

That little guilt though....I wonder if I should act more disabled, and if people see me as a fraud. Good thing I have a therapy session tomorrow.

Saturday, December 8, 2012

intro to me

I have been Dx'd with the old Multiple Sclerosis monster for about 21 years now.  I was just 20 years old and have had to grow up with this disease.  I had to learn how to be my own advocate with doctors, hospitals, insurance companies, and even my own family.  I am married with 2 now teen daughters who have also had to  grow up with this disease. It's been a rough road and I learned a lot about myself and others, some I found I could really count on and others who have quietly faded into the distance. I suppose that's all about growing up too. I feel like  I need to talk about M.S. with people who get what I'm talking about when I say "I'm tired", because I have found that most people really don't understand the extent of my tiredness unless they have M.S.  Maybe I just need to rant and cry to someone who will understand that crying comes with the territory.  Maybe my unclear and jumbled thought process will be more appreciated by folks with the same inconsistent and sometimes spotty cognitive issues.  Maybe I'll just post a recipe. I don't know, but I hope that once I get it together I'll be able to make something useful out of all this for myself and few other lost M.Sers.