Making a Statement

klobuchar

“When are our DFL reps going to jump on the bandwagon and become leaders of this resistance movement?”

“How is the nuclear option going to affect future legislation?”

Those were the questions I was going to ask Senator Amy Klobuchar at her town hall meeting last Saturday.  By the time the staffer with a microphone got to me, my questions had been answered.  So instead, I came up with something more personal.  “7 years ago I was diagnosed with a neurological movement disorder.  I was able to work for the first 3 years and then was forced to go on long-term disability.  Since then I’ve been fighting an uphill battle trying to get approved for Social Security Disability.  For those of you who don’t know, you only have a window of 5 years to get approved for SSD.  Then you’re out of luck.  I have 2 questions.  Who is the Social Security Administration held accountable by, and what will you do to make sure all of us with disabilities get approved for SSD?”

This was definitely the question that got the shortest response of the night. She said her office helps people all the time with SSD claims and that she wanted to hear more about my story to find out what they could do.  She seemed so positive about being able to help me that I thought maybe there was a chance.  One of her staff members came over to me immediately after the town hall and gave me his contact information.

I met with Kurt Johnson today and was disappointed to hear that nothing has changed since I contacted her office in 2015.  The only thing our Congressional reps can or will do is place us on a Congressional watch list. Essentially, our case files get “flagged” by the SSA.  This doesn’t help us move along any faster.  It doesn’t help us get approved.  About the only thing it accomplishes is to make sure we have all of our forms turned in.  I’m pretty sure I could find that out on my own by logging into the SSA website.

The only other possibility is to have a SSD claim expedited.  In order for that to happen, you have to meet one of three criteria:

–          Foreclosure/eviction notice

–          No access to healthcare

–          No access to major utilities

So basically we need to be homeless before a claim is expedited.  How many people actually get helped by this?  How many even know this is a possibility?  It’s frustrating that we have to be in dire straits before a claim gets pushed to the front of the line. “There are a lot of people applying for SSD” was Kurt’s response.  What he doesn’t understand is that many of us feel like we’re in dire straits emotionally and physically all the time as we’re wading through this long process.  The anxiety and stress that are a result of that process make my physical symptoms worse.

As I sat in the senator’s meeting room, I wondered what I could ask them to do.  I’d been on a Congressional watch with this office since 2015 and was never contacted by them about anything. Obviously, that wasn’t working.  I only have one idea, but it’s a biggie.

Perhaps there wouldn’t be such a back log of claims with the Social Security Administration if some of our disorders and diseases were added to the automatic approval list.  I don’t know when this list was updated last, but I do know Senator Al Franken asked for dystonia to be added and was communicating with the SSA commissioner to this effect before he quit in 2012.  As far as I know, the topic hasn’t been brought up since.   This is what I suggested to Kurt.  The senator needs to fight for us to have dystonia added.  Since her colleague already did at one time, it would be good for them to fight for us together.  Other than that, I’m out of ideas, which is why I’m looking to you to see this from a new perspective.  What would you ask your legislators if you were fighting to get approved for Social Security Disability?  If you had the chance to ask him/her anything, what would it be?

What do the questions and answers to these questions say about us?  As for me, I asked about adding this disorder to the pre-approved list for Social Security.  Leaving the Senator’s office without a yes or no answer, I now know I need help.  I need to come together with other people and brainstorm where to go from here.  I need those people to be a part of my support system.  I need to feel like I’m making a difference in my life and in the lives of others.

What do the potential answers to your question say about you?

The Search Continues

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Have you ever questioned what your higher purpose is?  More often than not, we find a purpose that relates to our careers.  For me, it’s always been about making a positive difference in the world.  In the teaching profession, this was an “easy” mission to have. We teach students how to identify problems, research the facts to support them, and brainstorm ideas for solutions.  Throughout each day, topics popped up all the time that required us to think critically.  And as a staunch supporter of the environment, I usually devoted my lunch time to sponsor a student-led group that worked to help the earth. Volunteering for district and school-based committees that focused on social justice and the environment were also important to me .  There were so many avenues for making a difference in the lives of students, colleagues and families, and they allowed me to immerse myself completely.

So when I was forced to stop working in 2013 as a result of my Cervical Dystonia symptoms, my purpose was taken away too.  While I’ve struggled with that ever since, I’ve only been cognitively alert enough to think about it since September of last year.

A few weeks ago, I was talking with a friend about all the care giving I was doing in my home.  My cat of fifteen years had just been diagnosed with cancer, and his symptoms kept piling up. He was so dehydrated that all of his hair was sticking up on his body.  As a result, our vet. had me injecting him with fluids every day with the hope that he would retain some of the water in his body.  He’d been losing a lot of weight with his kidney problems, so I was vigilant about making sure he ate as much of his food as possible.  Until he couldn’t.  He’d been prescribed a steroid for pain, another pain medication, and a blood pressure medication.  As soon as he refused to take his medications that were stuffed inside food, I had to crush them up so they could be dissolved in water and given to him via a syringe.  I constantly needed to monitor his ability to walk, go up and down stairs, and lie down. While I didn’t want to take away the activities he was still wanting to do, I had to make sure he was safe.

My purpose at that time was to make him as comfortable as possible in his last few days of life.  I had no idea that I’d lose him just nine days after his diagnosis.  But my full-time job was taking care of Bennie and his canine brothers Speckles and Morey.  I went from being a full-time caregiver to myself to devoting all my time to caring for my kitty.   Without Bennie, what’s my purpose now?

That’s a great question!  I wish I knew.  What I do know is that I wish I’d identified a larger life purpose outside my career before I was unable to work.  If I’d had that, my life would’ve seemed so much more worthwhile these past few years.

My Hopes:  Certainly, my hope for me is that I’m able to discover what my present purpose in life is.  And for you?  What is your life’s bigger meaning?  Do you have one that extends beyond your job?

If you’ve been through this soul-searching for any reason, please share how you identified what your mission in life is.  I continue to struggle with finding my purpose, yet I have a feeling I’m not alone.  It would help to know others are going through this same process.  If we can share what works with one another, we can make a huge difference in all of our lives.

 

Wanted: A Daily Remedy

Image result for images chronic headachesphoto credit:  http://nmtforhealth.com/headaches/

Do you get headaches?  If so, do you know the cause?   I woke up this morning with another nagging headache.  For the last 2 weeks, this has been happening daily.  Sometimes, the pain in my head can be so debilitating that all I can do is lie on the couch and hope for it to go away.  Ibuprofen doesn’t help, nor does a wet rag.  Staying hydrated doesn’t help, nor do neck stretches that should prevent them.  So why does this continue to be a problem?

When I first started getting these chronic headaches a few years ago, my doctor injected me with Botox in my forehead.  We did this over and over again, and I’m really not sure if it helped.  The part that stood out was the fact that insurance is reluctant to cover Botox as a treatment, which means the injections needed to be coded just right.   Why is this important?  If you read any number of articles, including this one, you’ll discover there’s a link between chronic pain and headaches.  As a lay person, I’m still trying to understand the causes associated with nerves so that I can explain it one day. Right now, all I can do is relay my daily experiences.

So why is it that insurance companies won’t pay for a treatment that is recommended by doctors?  Does there need to be more research done to convince them they should be covering this course of action?  How many of us need to suffer with chronic headaches before a successful treatment is identified and accepted by the people who control our medical options?

Another cause of headaches you may not be aware of is a condition called Bruxism.  This is the grinding or clenching of your teeth.  If you live alone, you don’t have the luxury of having someone tell you what you’re doing in your sleep.  Bruxism can lead to a TMJ disorder that, in turn, can cause tension headaches.  Do you wake up in the middle of the night with a headache throbbing across your forehead?  Or  do you wake up in the morning with one?  If so, you may be grinding your teeth and not even know it.

If you live with chronic pain and get chronic headaches, is there a treatment you’ve found to be helpful?  If you grind your teeth, has your dentist given you the magic cure for eliminating those headaches?  Of course, my obvious hope is that this hasn’t happened to you.  But as someone who seems to be experiencing more disorders than the average bear, I want you to know what you MIGHT be experiencing.  No one gave me the handbook.  I’m having to figure it out on my own.  Last night I underwent a sleep study, which I’ll write about next time, that will hopefully identify the cause of my own daily headaches.

I’m curious to know if you’ve discovered a remedy that soothes your headaches. Depending on the cause, other people’s cures may not work.  But it never hurts to have more ideas than we need. But if there’s any chance we can rise above the misery, it doesn’t hurt to have a plethora of ideas within our grasp.  You never know which one might work.

Your Bucket List

bennie

A couple weeks ago, shortly after my cat Bennie was diagnosed with cancer, an acquaintance asked me a question that gave me some direction.  What would be on his bucket list? Thinking big,  I thought about all the things he would’ve loved just a few weeks before:  rolling around in a field of catnip, eating all of the dogs’ food, lying on top of my legs, drinking all his water out of the bathtub…Unfortunately, he wasn’t feeling well enough to do any of these things.  But his favorite activity, being outside, seemed manageable.  Last Friday, the temperature was in the 40s, so I set a pillow and blanket out on the wet ground so he’d have a place to sit.

As sick as he was, he perked up when we went in our backyard.  He lifted his head to feel the breeze, walked all over the yard and rubbed his head against the plants, all parts of his outdoor ritual.  He even tried to jump up onto his favorite spot for sunbathing.  This was the most energy I’d seen him have in days, and I was so grateful we had that experience together.  Just 3 short days later, he was gone.

So what was my take-away?  I thought about all the things I used to have on my bucket list.  Skydiving, parasailing, going to a performance at Paisley Park…I can’t do any of these things anymore.  The pain is just too great.  Why did I wait so long to do these activities?  I kept putting them off, thinking I’d get to do them one day.  One day.  Now that one day is gone.

What can you learn from me?  Do all the things you want to do NOW.  Don’t wait until a day in the future that may never come.  When you retire, there may be a multitude of reasons why you can’t check items off your list.

If you haven’t created your bucket list yet, take the time to do it.  What will make you truly happy?  It doesn’t have to be something big.  It could be as simple as spending a day with all the people you love.

If you, like me, can’t physically do the activities you once longed to do, then come up with a new list.  Just like with Bennie, I was able to turn a simple pleasure into a wonderful afternoon with my kitty.  It’s frustrating to think that our health has impacted our desires. But there’s still so much out there that we can do!  Don’t wait until it’s too late.

MY HOPES:  If you haven’t created your bucket list yet, take the time to do it.  What will make you truly happy?  It doesn’t have to be something big.  It could be as simple as spending a day with all the people you love.  Or maybe you want to go on a trip that seems impossible.  Think about how you can turn the impossible into a possibility.

I need to do this too.  I guess I thought that I’d never be able to do the items on my bucket list, not even considering the fact that I could make a new one.  One that still filled me with hope, excitement and exhilaration.

 

 

 

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.