Jolting Revelations

emgHave you ever had a doctor refer you for a test, and you have absolutely no idea what was going to be done?  That happened to me when I first went to Mayo back in August.  The neurologists wanted me to get 2 different EMGs done, but they didn’t tell me anything about what I should expect.  All I was told was that it was going to be used to confirm my diagnosis. So I walked into the first Electromyography blindly, hoping at the very least, that it wasn’t going to be painful.

As instructed, I laid down on the exam table.  The technician hooked up some electrodes to my right arm and hand.  “You’ll feel several shocks.  But don’t worry.  The pain should go away quickly.”  Hm…that didn’t sound too good.  She gave me a warm gel pack to squeeze with my right hand, and the shocking commenced.  I’m not an expert, but it sounds like the locations change depending on which part of the body the symptoms are occurring in. In my case, it was my neck and spine.  Needless to say, the shocks were the worst part of this test.  Yep, there was more.

The neurologist came in and stuck a number of needles into my arm and hand.  Needle, by needle, he listened for the severity of the muscle spasms.  If the noise emitted from the machine is really loud and fast, then the muscle is contracting a lot.    While it does hurt to have needles poking and prodding you, I hoped the results would be worth the pain.

Back to Rochester for test #2:  the Movement Lab EMG.  The neurologist and technician worked together to find the contractions.  This was done by inserting six needles into my back, shoulders, and neck.  Three on each side.  When I have Botox, I’m used to feeling the pokes of one needle.  However, having six inserted at a time is no picnic.  And they did 6 different locations repeatedly.  As I clutched my hands and winced one final time, the neurologist said, “Well, our findings are consistent with cervical dystonia.”  “Really?” I thought.  It was a strange feeling.  On the one hand, I’d wanted to be diagnosed with something else, something that was curable.  On the other hand, I had no idea how to live a normal life without dystonia.

Are there any health procedures you’ve learned about that the average person may be clueless about?

Changing Perspectives

It’s a brand new year.  A time to take look back on where we’ve been and a time to look ahead to where we’d like to go.  Many of us consider our hopes and dreams, creating resolutions and vowing to follow through on them.  What are your hopes and dreams for 2017?  Is there anything you’ve learned about yourself as you think about the last year?

One of my doctors recently told me it takes 3 positives to equate to 1 negative, since we focus on the negative so much more in our lives.  Let’s try to put that into practice.  As I continue to deal with the challenging side effects of my medications (which would be viewed as a negative), I think back on the last few months to find 3 positives.

Number 1:  I made it through and continue to make it through the withdrawal symptoms of a prescription medication.  That’s huge!  While some of those symptoms still linger, I’m at least able to sleep a few hours each night. Who knew that statement would ever be seen as a positive?  It’s all about reframing, I’m told.

Number 2:  I was able to ask for help and accept it.  How many of us try to get through things on our own, when in reality, we have a whole support system who is more than willing to help us?  Even when you think you don’t need help anymore, it’s essential to know you still have a safety net.  Someone you can call when life throws curveballs at you once again.

Number 3:  I’m having a one-on-one this week with the head pharmacist at Fairview to find out what can be done to combat my dry mouth, which is a huge side effect of all my medications.  I had no idea this was even an option, until I was speaking with a nurse at my physician’s office.  Did you know there are pharmacists at various medical institutions, whom we can privately meet with as an additional resource?

So often, my life feels like an experiment.  By that, I mean this.  I feel like an island because so many of my side effects and withdrawal symptoms related to medications haven’t been documented.  I know I’m not the only one to have extreme side effects to medications, and I know I’m not the only one who has experienced withdrawals from a Benzoid that was legally prescribed for 6 years by a doctor.  You can read many horror stories on the Internet.  What you can’t find are the solutions.  What helped those people get through the withdrawal symptoms?  And what ACTUALLY helped them conquer the side effects so that the side effects didn’t conquer them?  This is the story I’m currently documenting, but I sure wish this research was already done.

It’s hard to feel like you’re all alone when paving this path.  We must remember that we’re not alone.  We can document our stories together.  We are a collective pool of knowledge. And even though there are often situations beyond our control, we can change our perspectives.  Perhaps, we can each take a negative from 2016 and turn it into 3 positives for the year ahead.  Not everything in life is going to be rosy, but at least we can frame it in a way so that we’re taking 3 steps forward.  How do you take the challenges in your life and reframe them into positives?  Cheers to a brand new year!

The Waiting Place

Have you ever felt like you’re stuck in the mud?  While some animals revel in romping through the muck, I am not one of those creatures.  When I feel stuck, there’s a total loss of momentum.  And a feeling of lost time.  A case in point, for the last 3 months, it’s been very difficult to keep up with my blog because nothing seems good enough for you, the readers.  I’ve spent hours writing posts but haven’t had the courage to share.  I’m sure this anxiety is a direct result of my withdrawal symptoms that I’m still recovering from.  But you should know, I haven’t been neglecting you.  I’ve been stuck and hesitant to bring you into that uncomfortable space with me.

One of my favorite books is Dr. Seuss’s “Oh, the Places You’ll Go!”, which talks about The Waiting Place.

“Waiting for a train to go or a bus to come,
or a plane to go or the mail to come,
or the rain to go or the phone to ring,
or the snow to snow or waiting around for a Yes or No
or waiting for their hair to grow.

Everyone is just waiting.”

The Waiting Place is where I’ve been for the past 3 1/2 years.  Before I weaned off of Klonopin, I didn’t have the energy to think about it.  I was tired and sleepy all the time and unable to retain information, due to the zombie-like state I was constantly in.  Now that I have the opposite problem of being alert all the time, I am frustrated about being in The Waiting Place.  What is it that keeps me here?

Some of you may know about the process of being on long-term disability.  It isn’t easy.  One of the terms of being on LTD, at least in my case, is to apply for Social Security Disability.  So I began that journey in 2013, and I’ve been stuck there ever since.  When you are applying for SSD, you can’t go to a vocational rehabilitation expert to find out what jobs you MIGHT be able to work because that will make it look like you are capable of working. For the same reason, you also can’t volunteer.  Yet, when you are denied over and over again with only a five-year window for getting approved, you are essentially running on borrowed time.  The collection of long-term disability isn’t guaranteed as those companies are always trying to get out of paying the monthly allowance that employees have spent years contributing to.

 If I start working, then the problems arise if I discover that I truly can’t do it.  LTD and SSD will question that inability since I was obviously “able” to go back to work.  And now, when I’m not able to consult with an expert to find out if I’m able to work at all,  I’m stuck at home, where the hours pass by very slowly.  Yes, there’s chronic pain, muscle spasms, and the pulling of my neck.  But I also worry about financial stability and personal fulfillment.  I long to make a difference in people’s lives once again, which is very difficult to do from my living room. Thus, I’m stuck in that waiting place.

Have you ever been in a waiting place?  How would you cope with this kind of situation?  I don’t have any answers.  I’m constantly looking for them.  Perhaps, the mere fact that I’m now aware of being in the Waiting Place is a step forward.  So much of what I’ve been experiencing is unexplored territory, and I’d like to think this is a topic we can explore together.

My Hopes:  For me, I certainly hope I can find my way out of the Waiting Place.  I want to think that I’d be nonjudgmental when communicating with others who are stuck on a similar path.  However, it’s not as easy to suspend that judgment when looking at my own life.

My hope for all of us is that we can create a space to explore all these issues, to provide answers for others who are seeking advice about these unbeaten paths.  What keeps you in The Waiting Place?  I hope you feel comfortable enough to share because it really helps to know we’re not alone.

My Silver Lining

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When we end up being the main character in a story that we don’t really want to be a part of, it’s easy to be immersed in the negative.  Going from the challenges of having Cervical Dystonia to the unknown horrors of going through medication withdrawals, this wasn’t a story I was prepared to write.  Nor would I ever want to.  “You’re an experiment!” one friend proclaimed.  Unfortunately, she’s right.  There aren’t any doctors who have the knowledge that spans the breadth of dystonia, withdrawal symptoms like insomnia and anxiety, and side effects.  When it comes right down to it, I really am the only one who can write this story.

Even amidst such a difficult time,  there must have been a few highlights.  As my mom said, “Now we get to know each other as adults.”  When you’re growing up, your relationship with your family is based on getting your basic needs met, the need to rebel as an adolescent, and the eventual hope that they will approve of your choices.  But as an adult, how many of us get a chance to spend 8 consecutive weeks with our parents?  I never dreamed I would, but I also never thought that I’d need them to take care of me during one of the most challenging times of my life.  Yet, that’s exactly what they did.

During this time together, we’ve searched for the weekly Steele County Mystery Shot.  We’ve listened to the big band radio show on KRFO Sunday mornings.  Dad popped his mouthwatering popcorn, while Mom made vegie chili with her own secret ingredient.  I’ve gotten to hear my mom read diary passages from 1961, in which she recounts the teenage romance between her and my dad.  And I suddenly realized that my 14 year-old feline was very thin and frail.  We’ve worked together to take him to the vet, give him fluids and get him to eat every day, which were all things I couldn’t have done on my own.

The other story I didn’t expect to tell was the one that involves my parents’ community of friends and acquaintances in Owatonna.  Whether it be book club, Women’s Club, church choir or knitting, everyone has been so welcoming.  Most of these people knew that I’d been having a hard time with my health over the last 6 years.  However, none of them really knew the specific challenges I’ve encountered, especially these past couple months.

Last Thursday when I went to the knitting group that meets at the Methodist church, one of the women inquired about my condition.  I finally opened up and told them about the insomnia, anxiety, sweating, mouth sores, my inability to think clearly and communicate, all the things that have made life so difficult since I weaned off Clonazepam.  Then I shared my journey with Cervical Dystonia, since none of them knew what it was.  There’s no way they would’ve known all I’ve been through, and it felt good to share that story with them.

Since my folks moved to Owatonna in 2001, I really haven’t known any of the people they’ve mentioned in passing over the years.  For the past 2 months, I’ve gotten to know these people.  I know who is related to who, and I can finally put names to faces.  I’ve sat next to them in choir and chatted with them as they’ve given me rides.  I’ve eaten breakfast with them at Hy-Vee and learned new knitting skills from them.  A couple in their 90s gave me a tour of their home, overflowing with tales about all the traveling they’ve done together.

This kind of socialization normally isn’t a big deal, right?However, when you’re experiencing so many symptoms that make you consistently doubt yourself, leaving the house is a major achievement.  Last week, I began to see that I was becoming a permanent fixture in some of these people’s lives too.  A fellow alto told me I should move down to Owatonna and become a permanent member of the choir.  I got my very own choir folder from the director.  And it was becoming a regular routine to ask  one of the choir members for a ride to knitting every week.  Since moving back to my home in Minneapolis, I miss all the things I’d begun to look forward to and the people who have made me feel at home.  Sometimes, in life, we have to search high and low to find our silver lining.  But I’m convinced it’s out there.  Somewhere.

My Hopes:  No matter what curveballs are thrown at you, my hope  is that you persevere until you’re able to identify that part of your story that brings you joy.  You may not be able to see it in the midst of chaos, but if you persist, it will come to you eventually.

This is certainly my hope for me, as well.  While it’s important for us to continue reaching out to people who have welcomed us into their circles during our hard times, it also seems essential to reach out to those individuals who are experiencing their own obstacles.  Invite them in.  Let them know you won’t judge them.  Show them they’re not alone.  Since those are the kind of people we need in our lives, those are the kind of people we need to be.

Time Well Spent

One of the things I’ve cherished the most over these last two months is the time I’ve spent with my nephews.  Out of everything my cervical dystonia has affected, that is the one I’ve regretted the most.  Now it seems I get to make up for lost time.

Owen has started teaching me all about football:  the best way to throw the ball, what to do when a teammate isn’t open, and the rules of the game.  I never had this kind of coaching when I was in Phy. Ed. classes, year after year.  While it isn’t easy and requires a lot of breaks, I feel supported by this 9 year-old who is taking the time to teach me about something he loves to play.

Oliver also enjoys playing football, but his real passion lies in using his hands.  He fixes, builds, and creates.  During his most recent visit, he took me through the steps of drawing an ocean.  We started with the waves and how to color them in.  Then we went on to the making of a sailboat, asking if I wanted it striped or solid.  There’s a different process for each so it does matter.  Lastly, the sailor was drawn on the deck. If I’d had Oliver as an art teacher when I was growing up, I’m pretty sure my view of creating art would be a lot more positive today.

He’s also really good with my furry kids.  If Morey is walking through the living room, you can be sure Oliver is right behind him, pretending to be a dog.  Putting their leashes on and taking them for walks are also strengths.  It’s great for me because two parts of my world are finally coming together.  The way I’ve wanted my life to be for a long time.

With all the insomnia issues, Owen has exhibited true compassion.  When we’re together, he asks me how I slept the night before.  When we’re not, he will ask my parents or say something about it to his.  The thing is, he’s not just making conversation.  He truly cares.

I see a lot of myself in these two boys and how I was as a child.  The challenges too.  But nothing can replace the opportunities I’ve had to get to know them over the past 8 weeks.  My hope is that it will continue.

My Hopes:  Is there anyone who has taken a backseat to other life events?  Someone special whom you’d really like to connect with again?  If so, it’s not too late.  With my limitations, there have been a few people whom I’ve lost touch with.  And now that I’m not a walking zombie anymore, I’m actually aware that this happened and have the ability to fix it.  I hope you can find a way to reach out and let these people know you are thinking about them.  We need all the support we can get!

What Would You Do?

How often do you get a new prescription from your doctor and the first thing he/she tells you about is the possible side effects? Or you pick up your medicine from the drugstore and the pharmacist wants to go over the side effects with you? It’s definitely important to be knowledgable about how the drug might affect your body, mind, and emotions. However, most of us are never educated about the possible withdrawal symptoms if we are told to go off a medication. Before my own experience with this, I never would’ve cared. Life would go on as it did before. At least, that’s what I assumed.  6 years ago I started taking Klonopin. If I’d known then what I know now about how weaning off of it would affect me, I would’ve thought long and hard about whether this was a good antidote for me.

In my last post, you read about my withdrawal symptoms. Since writing that post, I’ve seen 2 sleep disorder specialists and 3 medical providers, in addition to making a desperately needed trip to the ER.  Going 4 days in a row without any sleep is excruciating.  Instead of welcoming a medication like Ativan that might help me sleep, I’m afraid of taking anything new.  Why?  I don’t want to go through these withdrawals ever again.  Plus, even if I take it, sleep isn’t a guaranteed outcome.

In addition to insomnia, depersonalization is another one of these symptoms.  “A reality or detachment within the self , regarding one’s mind or body…where the world has become vague, dreamlike, less real, or lacking in significance”.  When I called my parents and told them what was happening to me, my dad found a website that confirmed everything I’d been feeling.  Being outside of my body looking in, I didn’t feel like I had any control over my thoughts.   I was anxious and consumed by negative thoughts.  And I was all alone, which made it very difficult to get through each day.  Fortunately, when Mom and Dad got back from their trip, they offered to have me stay with them as I went through the withdrawal process.

I’m still going through it, and I’m grateful my furry kids and I are not alone anymore.  While it’s difficult depending on someone else, it’s also nice having someone around.  Someone who asks if I’ve eaten and what I’ve eaten, even when nothing tastes good.  Someone who makes sure Speckles, Morey and Bennie are fed and walked.  Someone who can go with me to doctors’ appointments because I’m not supposed to drive myself. And someone who is physically present when I get out of bed at night because I still can’t sleep.

My Hopes:  My hope for you is that you make educated choices when a doctor prescribes something new.  Ask the hard “What if” questions.  Talk to a pharmacist you trust.  Do some research before filling that prescription.  While it’s possible for people to tell horror stories about any given medication, I sure wish I’d known what was in my future 6 years ago when I first started taking my meds for Cervical Dystonia. Maybe there wouldn’t have been another option, but at least I would’ve known what might happen if I ever had to stop taking one.  And you should know, I didn’t suddenly stop taking this medication, which understandably could cause withdrawal symptoms.  I weaned off of it at a slower pace than my doctor recommended.

If you hear a similar story, please tell your significant others that they’re not alone.  I was telling part of my story to an acquaintance, after I’d figured out I was having withdrawals from a prescription.  She said a friend was going through the same thing.  You may think this only happens to people who abuse addictive substances, but it doesn’t.

If it does happen to you, make sure you have someone in your life whom you can be with.  Being around other people makes you feel more secure, knowing someone else is around if one of your “irrational” fears comes to fruition.  I’ve learned the hard way how isolating it can be to go through this as a single person.

For me, my hope is that I’m able to get through this and move beyond my fears.  Right now, I have a lot of them.  This goes hand in hand with the anxiety I’m experiencing.  While this last month has seemed like an eternity, I’m grateful to have my parents by my side.

Stuck for Good?

“And still, I wait in the Void between an in-breath and out, snared and tangled like a Shade who sees life all around but cannot touch or sob or walk back into her life.”

As I read this description of the main character in Gail Strickland’s fantasy, “The Night of Pan”, I felt like someone was finally describing me.   I’ve been stuck for 6 1/2 years with my Cervical Dystonia diagnosis.  However, since my appointment at the Mayo Clinic in August, I have never felt so lonely.    A prisoner in my  body and in my own home.

Why would I feel even more trapped now than I did before?  On that fateful day, the neurologists said they weren’t sure that I had been diagnosed correctly.  While this really shouldn’t surprise me, since many of us hear these words at one time or another, it really hit me hard.  If Mayo Clinic doctors don’t think I have Cervical Dystonia, what have I been suffering with all this time?  What if the treatment of my symptoms back in 2010 actually created my “disorder”?  Grappling with the possibility that I may have been robbed of these vital years of my life due to a misdiagnosis, it knocked the wind right out of me.

In order to help them make a proper diagnosis, I was told to do two things:  take 3 tests (an MRI of my neck and 2 EMGs) and taper off all my medications.  With the help of my U of M doctor, I’ve been slowly weaning off my prescriptions.  And that’s exactly what has turned my life upside down, making me feel like I’m not anywhere close to living a life I once cherished.

So what happened?  I got myself off the Klonopin without significant withdrawal symptoms.  But once I started removing Tramadol  and completely stopped taking the medicinal cannabis, my days became a life sentence.  You see, when I was taking all 4 of my painkillers and muscle relaxants, I had to nap in the morning and afternoon because I was so tired each and every day.  Now each minute drags out.  What am I supposed to do with all of this time on my hands?

My neck pulses with a burning pain.  That same pain sears through my shoulders and upper back, with no medications to help manage the pain.  I thought living with an average pain level of 7/10 was difficult.  And that was with 4 medications!  Hating the site of my bedroom, I twist and turn after crawling into bed, unable to find a “comfortable” position. Every night since I stopped taking medicinal THC and Tramadol, the pain has woken me. So I do what we’re not supposed to do.  I continue to lie in my bed, hoping that I will eventually go back to sleep.   Waiting.  Wishing.  Praying that  I’ll finally be able to stop hoping and start sleeping.   Yet, I don’t.  Do you know how frustrating it is to not sleep at night or during the day?   This pain and inability to sleep is compounded by having daily headaches that are different than they were before.  But just as painful.  While this insomnia caused by my chronic pain isn’t a new issue as I’ve already seen 3 sleep disorder doctors, I’d started getting 7 hours of uninterrupted sleep during the month I was taking the Medical Cannabis.  So I’m left waiting.  Again.

I long for things to do.  For people to interact with.  For Someone to be with me so I can be a better mom to my furry kids.  For someone who can give me some answers. For the ability to yawn.  For a life with purpose. If each one of us has a purpose, I’m dying to know what mine is.  I can’t imagine it’s constantly trying to figure out what to do with my time.  Read, go outside, listen to the radio, watch TV, repeat.  This isn’t the life I wanted, nor is it a life I’d ever wish upon someone.  If anyone thinks this sounds great, I’ll gladly trade places with you. I’d give anything to have my life back.

This may all sound depressing.  It is.  I don’t have a lot of hope right now.  Two-thirds of the tests I can’t have done until October because all of the Botox from my July injections has to be out of my system.  Given the fact that Fairview and my insurance company won’t approve a return visit to Mayo, how am I supposed to move forward once I have the results back from my tests?  More waiting until I can change my insurance plan?

Instead of my usual hopes, I’ll leave you with this, a song I’ve been listening to a lot these last couple days.  I truly hope each of you is living in the light because I’ve had enough darkness to last a lifetime.

Help Me Find the Way