MS

July 14, 2017

Frustrated. 

This is a repost from my Facebook page. That’s where I seem to pour it all out…

I’m frustrated. This is going to be one of those long, full of too much truth for some, posts.

I started flaring in the spring. Always a possibility, I pretty much know how to handle them to keep them from stopping me. This one was a doozie. Wound up in the hospital in early June. Turned to medication to help, bounced around between different doctors to determine just what was the cause. In my head, it doesn’t matter – it’s all the same. Auto-immune. I have a list of diagnoses, in addition to MS that y’all know about, and I tend to lump them all together because the bottom line is the same – my body is attacking my body. 

It’s a helpless feeling knowing I am doing this to myself. Meditating, searching my body for the cause, the triggers that sent me down this path again. I eat better, read more, listen to the cues my body sends and drink more water, juice daily, buy flats, alter my household to accommodate my abilities, etc. Sometimes I cry for hours, other times I get really angry and determined. 

The “cure” for this one was the same as always – massive steroids. I despise this route. My bones are already showing major signs of osteoporosis from years of treatment. Is the cure worse than the cause? I was desperate though, so off we went. After about two weeks I was pain free, my body seemed to be healing. 

Religious with physical therapy, amping up my nutrition, I was on the way out….and then it happened.

I was changing into my pj’s on Friday and felt the all too familiar pain shoot through my leg. F*CK! I froze, afraid to move a muscle, fearful of the future, wishing I could just pretend it never happened.

Except that it did.

One by one my symptoms started to creep back. The steroids were wearing off, and my body was determined to “win” by returning to it’s self destructive mode.

On Monday I was released from Physical Therapy and joined the gym again. On Wednesday my doctor told me I was released “until next time”. We talked about my options going forward, as I’ve had my lifetime supply of NSAIDs, and am likely over the steroid limit too. It’s time to go back to experimental drugs he said, regular infusions, for life. There is ZERO I like about this. My doc knows how I feel and urged me to at least research and set up the needed appointments so I could roll when and if it was needed. I agreed. Thursday night I couldn’t lay on my side anymore, the pain was too much. This morning I felt beat down, scared, frustrated, and angry. I am jealous of every single person that can move freely. I want to scream for them to get off the couch while they can – to go do the things they want to do – simply because they are possible.

Because when that option is removed, regret is a beast. 

I struggle this morning with keeping a positive attitude, with loving myself as my body rebels. I have plans dammit, I don’t want to be stopped, or even slowed down. I want to play with my kids, go to work, take care of myself and my home. I want to be pain free and mobile. 

Yet, I am forced again, to accept. 

My relatively pain free month was simply amazing and all too short. It took about 2 weeks for me to mentally wake up and stop being scared of moving, scared of the pain. I realized I was conditioned to not do things even when they didn’t hurt any more. 

Just as I was breaking free, it’s back.

There has to be something bigger causing this BS. We, as a society, must look at the poisons we have readily available and feed our children with. Fast food is awful, we know this, yet we use pizza and ice cream as a treat. Exercise is good, yet the average adult spends 5 hours a day in front of the television. We are always looking to do what is easy, not what is right. I stoutly believe that the rise in autoimmune issues is a direct cause/effect from our lifestyles. While not intentional, you cannot deny the numbers.

Why isn’t salad cool? Why are Frosties 50 cents and a cold pressed juice 10 dollars? Why do people talk about binging on a TV series more than upping their exercise routines? The general vibe is one of instant gratification with no thought to the long term outcomes. 

It’s tough to fight this on a daily basis. I know my tribe is out there – people who eat well, move their muscles, feed their minds and bodies positive things. I don’t want to be in the minority any more.

I started a massive facebook friend delete campaign through this last flare. And it is freeing. If we don’t vibe, it doesn’t make it in my circle any more. I don’t have the extra energy to fight the bullshit, I don’t need help making poor choices. 

Not sure where I’m going with this, other than to simply release these thoughts from my mind and share with y’all a little piece of what has been going on in my world.

I know that I am not alone, so I am raising  my hand. 

Who wants to join my #levelup #kindgang? Where we push ourselves to be better, not blitzed – where we support instead of compete with one another – where salad is cool.

One thing I have learned over the years – that still holds super true today – if we are nice to our bodies, they will be nice to us. This applies to everything – food, movement, books, music, mindfulness. Have your actions in alignment with your goals. Hell, have goals. Be purposeful with a plan. Save your pennies, feed your mind and body, hug your babies, and love your people.

Everything else is just noise. 

xo

January 1, 2017

Well f*ck. 

January 1st. A new year begins. New opportunities. Renewed hope. Goals. Dreams. 

We made vision boards today. I’m a bucket list type of gal, and found that many of the things I came across I’ve already done….so I focused on going deeper. Consistency. Being stronger, wiser, healthier.  There are a few “to-do” type things on there. One that I didn’t even know I wanted to do was be a bone marrow donor. The magazine had a fantastic article about how great it felt to give back, to help others, to go the extra mile. I have the time, I fit the age criteria, I was all over it. While the glue was still drying on my 2017 dreams, I began to google. 

Read the entire FAQ. I was all in. Began reading medical requirements and my heart sank. Fuck, fuck, fuck. I deny my MS on a regular basis. I don’t wallow in it. I push through it. Just a few days ago I had to crawl up the stairs in agony to go to bed, and it didn’t stop me for a second putting surfboarding on my poster. I’m aware of it, all too well, and I don’t let it stop me. And now this stinking web page just smacked me with it, hard. My grand plan for the year is less than 30 minutes old and already impossible. 

Tears fill my eyes. Curse words flood my brain. Anger and resentment begin to swell up inside. Feelings of brokenness and inadequacy start to take hold. I can’t let it win. I can’t stay here in this shit. I can’t let that monster have the final word. I won’t. The wheels in my mind are working overtime attempting to come up with a solution, a work around. Another way I can help. 

I will marinate in this for a bit. Ask the universe to present me with options. Be open to the answers. In the end, I’m still a mama bent on leaving this planet better than I found it. Helping more than hurting.  Exploring, learning, tasting, and loving the journey – even when I hit a roadblock – I’m off to look for an alternate route. 

XO 

December 14, 2016

Princess Parking

This has camped out on my dashboard for 5 years now. Hell, I just begrudgingly mailed in the renewal form this week. We call it “the parking pass”. Membership has its privileges – there’s almost always a spot for me – doesn’t matter if it’s the height of the holiday shopping season or I’m late for a concert….I drive right up to the front. Sounds awesome, right? 

I remember clearly the day my doctor told me to get the permanent one. I had gone through multiple red, temporary tags and I guess she was tired of filling out the form – or she was giving up on me. It felt more like the latter. 
Diagnosed with Multiple Sclerosis is 2001, I was 10 years in. Which, at that time, was about how long they expected me to be able to walk without assistance having MS. I had just given birth to my 3rd child and all hell broke loose. My immune system declared war on my body, the medical community fought back hard with steroids, chemo, and pain pills. My body was clearly winning, which meant I was defeated. I was told I’d never walk again. 

Fast forward to today. After a pretty lengthy battle, I found that if I was nice to my body, it would be nice to me. I did walk again, and continue to do so today. If you met me on the street, you would never suspect the backstory. 

I walked into my son’s daycare yesterday and the staff told me the police called earlier in the week. It seems they were alerted to the fact that my car was parked in the handicap spot and they were threatening to give me a $500 ticket if they found it there again. I shared with them that I had a tag, and that I, unfortunately , earned it. They had no idea. Most people don’t. 

The world moves too fast to notice that it takes me a few seconds longer to get going. I’ve perfected the art of hiding my limp and I’ve become accustomed to not feeling my legs. I have a host of other symptoms that are now permanent, from the scar tissue surrounding the myelin in my brain and spinal cord. So what. 

I push when I can. I go as far as I possibly can – whether it’s to the couch or across the Grand Canyon. I’ve adapted. Always in the back of my mind are the memories of the wheelchair days, and they can, and have, come back without warning at any time. 

Today is a slow day. So I’m wearing flats and leggings – comfort clothes. I didn’t go back upstairs to kiss my husband goodbye on my way out the door because it just hurt too much. I got a little short with baby d when I had to reach in and buckle his seat belt. I winced when I climbed out of the car. I also did not stop. I smiled and made small talk at drop off. I got to work on time. I made my calls. All of this with the conversation of the previous day weighing on my mind. 

To the person who felt compelled to call the police because I don’t “look” disabled: From every angle that I roll this around in my mind, I come up with the same conclusion: I truly feel for you. I can only surmise that from where you sit there is much pain – either personally or in your circle. The need to judge and police others is so strong for you right now and in my experience we look outward when looking inward is just too much to bear. 

The Jersey girl in me reacts with “bring it”, I’m on the up and up, who the hell are you to be the self proclaimed Parking Nazi. Walk a mile in my shoes – on another day of course because, quite frankly, I can’t do a mile today – and then we can reconvene. In the meantime, fuck off asshole. 

See, I’m just like you. When I don’t want to look inside and realize I have limitations I can’t control – I point outwardly. The only difference is I have carried this cross for long enough that I realized dealing with it was better than hating it. Feeling gratitude for all of the amazing things MS has brought to my life has given me more gifts than you could ever buy in a store. 

I hope that one day your pain will ease a bit, your shift will happen, and you can find joy again. Love what is instead of judging and criticising the world around you. May you find that internal peace we all long for and feel love again. May your heart soften just a bit so you can heal and grow. 

I hope we cross paths again someday, I’d love to learn your story. 

XO