MS

February 16, 2018

Pain, pain, go away, come again another day….

I think back to when I was first diagnosed…

29 years old. Mama with 2 babies. My body went rogue on me.

I felt a combination of fascination and fear each time my nervous system would misfire.

I would play with the bouncing vision in my right eye – the lesion was in the back of my neck and standing in front of air conditioning could actually make it stop. “Tigger Eye” I called it. The likelihood of anyone ever experiencing this is slim, if it does though, DO NOT close the good eye to experience only the jumping sight, you will vomit. May you never have to heed this advice.

I had numbness, burning, and stabbing in my thighs. Shooting pains and firey heat that would hit randomly and cause me to lose my breath. I have long since lost all feeling permanently in those areas…a new normal. Quite frankly, I hardly notice it now.

My bladder went. This mortified me. I told no one – literally not a soul – and stifled tears at the doctor’s office for that fateful first appointment. It was this symptom that eventually led to my diagnosis. I didn’t share the journey with anyone until several appointments in, when it was time for the spinal tap and MRI.

Ah, that first MRI. I was scared to death. With and without contrast – scanning from my brain to the base of my spinal column twice I was “shooting the tube” for almost 2 hours. Today I would welcome this time as a much needed nap.

My hip pain was very intermittent then. And I unfortunately let it stop me. I bowed out of many activities when it would flare – not wanting people to see me weak. What I would give to “only” have that pain level today.

It’s been constant for weeks now. Slowing my walk, bringing me to tears, dropping me to my knees, and yet I keep going.

What else is there to do?

I’ll be back at the doctor again within a few weeks when my ability to move, sleep, and push through is exhausted. I doubt I will be able to avoid drugs this time. I’ve been forging my own path and beating the odds for so long, I begin to question what is best.

I’ve never been able to run around with Dylan.

Tears just filled my eyes when I typed that.

He only knows his mama in pain.

This breaks my heart.

I pray for gratitude for the good moments, faith for the dark times, grace for myself and others.

I pray for a cure.

I believe we will find our answers buried somewhere between genetics and lifestyle.

I don’t like having a label – quite honestly I have been given so many at this point I consider them all a joke. The reality is the medical community doesn’t really know why autoimmune diseases are running rampant. There are many clues and no definitive answers.

Sometimes I play Dr Google, convinced I will find the missing piece.

Most times I push through each day, accepting my symptoms, with little energy left from enduring them to pursue answers.

I’ve heard the medical community tell me on more than one occasion I wouldn’t be able to walk again. I hear those words often in my mind and remember those moments vividly.

I may be slow, I may have pain, I may even cry and curse – I also continue to walk and absolutely refuse to let statistics be my fate. I am not a number. I use their words as fuel for my fire and flip them off in my head as I crawl up the stairs. I will not be stopped.

I am a force for good. šŸ’–

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February 11, 2018

Chronic pain

It’s impossible to understand just how devastating it is unless you’ve been there and I wouldn’t wish that on anybody.

The emotional toll is the highest imaginable – relentless, never ending, slowly debilitating. One minute you are deep in the trenches engaged in battle and a split second later you have nothing left and quit.

It sucks your soul from you without even knowing it is happening.

You become an angry person. You negotiate with your creator. You concede. Then you muster up the strength to fight back again.

It’s a roller coaster you didn’t ask to ride and can’t get off.

You feel guilty for needing help. You feel worthless for accepting it. You push people away and then lament being alone.

You wipe your tears and climb back in the ring, determined.

You plaster a smile on your face.

You read and research and are willing to try anything – absolutely anything to end it. This time will be different. This cure will work.

When it wanes you have hope, when in waxes you fill with anguish. It never leaves though. Always by your side, gnawing at your thoughts, eating away at your body.

You fill with remorse and anguish. You beat down regrets as they run through your head. You dig deep, breathe in, and focus on the fight.

You live large when you can, knowing it won’t last. You retreat into hiding when you can’t.

Chronic pain and I are like tumultuous lovers – dancing a toxic dance and I fear the music will never end.

This moment is hard. There will be more of them. I hold onto the flicker of faith that it will pass, like the ones before it, and I vow to not take any second of my respite for granted.

It will get better. It has to.

January 5, 2018

A shitty moment does not define the day.

Today was a 9, although it started flatlined, even negative….  As I reflect, I’m actually surprised I didn’t let it totally derail me. I sit here quite contented that I had a good day, maybe there really has been a wee bit of personal growth over the last few months…
So y’all know about MS, and my recent 6 day fast in an attempt to reset. Well, it didn’t work. One by one my symptoms came back, worse. My best guess is that there might be some sort of food allergy (getting tested next month) or that the stress of the whole ordeal set me off. 

One of my original presenting symptoms was bladder control – at 29 I was mortified. Still am. For the most part it is controlled, only when things get really bad does it come into play. Like last night.

Great way to start the day. Add the second snowless snow day for Dyl, contractors ripping apart my master bath, and a full schedule – I was stressed to the max the second I woke up. 

A little short on patience as baby d dilly dallied his way to breakfast, he responded with “I wish I was at papa’s house.” That was one hell of a dagger. I held it together, or so I thought I did, as I limped downstairs to the kitchen when I started sobbing. Piling on the self blame for everything from MS to leaky showers to the dissolution of my first marriage, I threw my tea mug in the sink – and shattered 3 more glasses that were in there in the process. Tears streaming down my face, I began cleaning it up and getting breakfast ready. 

Contractors arrive, noise ensues. I serve Dylan his breakfast – complete with strawberry smoothie – that he promptly spills all over the table, chair, and into the cat food. 

I literally just finished the great glass massacre cleanup when the strawberry disaster occurs. 

More tears. This time both of us. 

Meanwhile phone is blowing up, banging from above, cat wants food – life is still going on.

Don’t they know I hurt? Don’t they know that everything in this moment totally sucks? 

Or does it. 

I took a deep breath. Refocused. Pulled up my big girl panties and proceeded with the day.

And you know what? It got better. Things got done. Progress was made. Joy was had. 

So much so that this morning was but a distant memory that I was only reminded of just now when I went to climb into bed, and realized I never finished washing the sheets.

Life is what we make of it. It’s not what happens to us, it’s how we respond. My tears and guilt were normal reactions, it’s ok to feel those feelings, process them, and move on. 

When we stay stuck or try to avoid feeling them, we don’t serve ourselves or the universe. We reject the gift that each day is and we let our future be decided for us. That is a life by default.

Mine is a life by design. šŸ’– 

January 4, 2018

To fast or not to fast

The last week of 2017 I chose to begin a water fast. Having watched a documentary (The Science of Fasting) months ago about it, I was intruiged. I continued to research and talked to people who had completed fasts of various lengths – I decided to go for it.

My total fast length was 6 days, 3 minutes. The only thing I ingested during that time was water.

My goals were to reset my body. I have Multiple Sclerosis (diagnosed in 2001), and have reached a point where I can’t manage it without meds much longer. I had nothing to lose as far as I was concerned.

Day one: This day was fairly easy. We’ve all gone most of a day without food, so I had scheduled regular work activity for the day and went about my day. I found that I would enter the kitchen to graze whenever I was bored – not necessarily hungry. This habit was strongest whenever I would first enter the house. Seems I would beeline for the kitchen automatically. Interesting to note. I began to get a headache as well – likely caffeine withdrawal.20180104_075013.pngDay two: I can sum this day up in one word – hangry. I was grumpy, hungry,Ā and my patience was at a minimum. My headache continued, and again I had a fully scheduled work day. This was rough. I didn’t want to talk to people, I didn’t feel good. I made it through and was grateful when it was time to go to bed.

Day three: Hell. I woke up at about 3am feeling awful. TemperatureĀ regulation was a problem – hot then cold, headache, body pains, heartburn – tossing and turning until I got out of bed a few hours later. It was at this point that I reached out to my circle who had completed a fast previously to help pull me through. I was reading when to quit a fast, and I really wasn’t sure I could do it. That morning I didn’t have the strength to stand up and blow dry my hair, so I sat on the floor to dry it just enough so it wouldn’t freeze. Again, I went to work – however I had a difficult time standing and talking at the same time – it took too much energy. This was by far my most difficult day.20180104_075043.pngDay four: After a good night’s sleep I awoke feeling rested and ready. My headache was gone, my energy was higher, my mind clear. I had broken some of my morning habits already – the primary one being sitting for about an hour each day – fiddling on my phone, drinking coffee. My schedule was light, as I wasn’t sure how the end of the week would play out and I found myself knocking things off my long standing to-do lists. I was also building a sense of accomplishment over the fast and excited to see what would happen next.

Day five: Even better than day 4. More energy, more clarity, it was almost a spiritual experience. Focused and determined, I was able to work on my business and home at a level I hadn’t in a long time. Rashes were clearing up, my skin felt amazing. Pain was gone, I felt almost invincible! I began to plan for breaking my fast, as I didn’t want to go through refeeding syndrome and felt like my body was a temple not to be tainted.

Day six: Another amazing day. I was sad that the fast was coming to an end, and I was pumped for the future. Feeling healthy and strong, clear headed and determined, ready to take on the world. That evening, I broke the fast with bone broth.

I am now 4 days post fast. I have been eating quite clean (following a detox diet – although unable to eat all of what is on the menu daily) and the focus and clarity continues. However, not all is well. I have noticed that I lost muscle during the fast – my strength level is low. My rashes have already returned and my pains are back. This leads me to think that there might be some sort of allergic response to the foods I am eating – although my diet is super clean – perhaps something is not syncing with me. This is something I am going to explore much more in the upcoming months, as I am not a fan of a life of medicines and truly believe that if I am nice to my body, it will be nice to me.

I am eating now using the intermittent fasting method. I have an 8 hour window each day in which I eat (12-8) following the theory that this way my body does not run on sugars alone and it is said to limit inflammation. The jury is out, although personally I’m quite disappointed as I sit here having bounded out of bed this morning only to fall to the floor when my right leg gave out unexpectedly(classic MS symptom for me).

As far as weight – I started at 140.0 (literally Christmas day, so this was a somewhat high spot for me) and ended at 130.2 – for a total loss of 9.8 pounds in 6 days. 4 days of food later and I am back to 134.7.

IMG_20180104_074139.jpgOriginially I was certain that this would beĀ something that I would do again – the clarity and energy while I was in ketosis was addictive. However given my weakness from muscle loss and the return of symptoms so quickly, I don’t think I will put that stress on my body again.

I am forever grateful for completing the fast and for all of the support I had going through it. Wouldn’t change a thing. I am still excited for the internal clarity shifts that occurred and look forward to what this 2mm shift will do to my trajectory. I do feel like a bit of a badass for completing it and added it to my overall life experience bucket.Ā C81A4320

 

July 14, 2017

Frustrated.Ā 

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.Ā 

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