Thursday, January 3, 2019

Migrainous Musings

I have been struggling with a rough stretch of status migrainosus. When I'm thinking a little more clearly, I know that it will end... but when the pain levels are unbearable and the insomnia from treatment is added to the mix, night can bring out all kinds of demons (anxiety, depression, PTSD). In Pain has an Element of Blank, I wrote about the timelessness and dominance of pain, so this is something I've been facing and working on throughout the last 10 years.

This is part of my journey. Please excuse the raw, unfinished, unedited migrainous night musings / ramblings of a brain in pain; but I thought they might be worth sharing.

All alone, in the dark, is where the true torture happens. The incessant pain is magnified by the lies that it tells. When will it end feels like a question not worth asking. The pain decides without your consent.

Mind racing. Heart thumping, Head pounding, Body screaming.

The light of hope seems so soft and dim, but it's what holds us together when the night seems to never end.

Day in and day out, the pain becomes an unwelcome but constant companion. Sometimes it's there lurking in the shadows, sometimes it walks right along side of us, and sometimes it completely overtakes us.

Regardless of how wonderful a support network we have, there are moments that simply have to be faced alone. In the dead of night, when everyone is sleeping, the pain, anxiety, and isolation make their move.

Photo by Travis Bozeman on Unsplash
I've written several Haikus (and Tankas) previously in my journey, here and here. Sometimes it helps to try to focus my mind on thinking or writing in a specific way.

Darkness breeds darkness.
Incessant pain tells us lies.
We must seek the light.

We may feel alone,
But we never truly are.
Reach out and have faith.

Stark desert. Dark night.
Looking for a small reprieve
From the pain and fight.

“Be patient and tough; someday this pain will be useful to you.” - Ovid

Monday, December 31, 2018

Farewell, 2018!

Photo by Ian Schneider on Unsplash
Today is the final day of 2018.

The past week has been rough, pain-wise. But, I've done my best to review and reflect on this past year beyond the lens of my current pain... it's good to remember that things aren't always so hard.

This year has been a year of ups and downs, as life is. I've laughed and been filled with joy. I've been scared and overwhelmed with anxiety. I've found courage deep within and faced fears. I've practiced being present in the moment. I've made some wonderful memories and connections. I've lived, not just survived.

The coming year will be another chapter in my journey. While I don't make new year's resolutions, I have found that having a word to focus on in the coming year has been powerful.

Personally, I spend time praying about what God wants to grow me in and show me during the coming year. I have felt Him place a word or phrase on my heart each year that I've done it. It has been a practice of beauty, discipline, and grace.

The chosen word or phrase becomes a lens through which I examine my heart and life, both as I move through the year and upon reflection.

Whether or not you make resolutions or choose a word, I hope that you take some time to think about and reflect on what the year has held. Celebrate the wins and reflect on the losses.

As we transition into the new year, my hope is that each of us lives our most authentic and best life.

Practice gratitude. Laugh as much as possible. Find beauty everywhere. Be bold. Stay true to your beliefs. Treat yourself and others with kindness. Live with intention, love, and joy.

"It is my intention to live an authentic life of compassion and integrity and action." - Zachary Quinto

Wednesday, December 26, 2018

Establishing Care With a New Provider: Step by Step

You've made the decision to seek out a new healthcare provider... what's next?

This is the third post for establishing care with a new provider: My Journey and The First Step.

Photo by rawpixel on Unsplash
Below are some guidelines to help you through the process. I've divided them into before, during, and after the appointment.

Before 
  • Find a healthcare provider. Follow this link to Find a Headache Specialist
  • Check insurance coverage and restrictions. Contact or search to ensure your new healthcare provider will be covered by your insurance. If your new provider is a specialist, check with insurance to find out if a referral is required. 
  • Schedule your appointment. Either have you current provider submit a referral or contact the new provider to schedule an appointment. Specialists are often difficult to get in to see. Be prepared for a long wait to get on the schedule. 
  • Request and complete paperwork ahead of time. Some providers will automatically send you the paperwork ahead of time. If they don't, simply request it. 
  • Request to transfer your medical records and test results. Contact your current and/or previous provider(s) to make this request. You'll need to submit a record release form. The transfer of records can take several weeks, so make the request early. 
  • Consider bringing someone with you to your visit. Make sure this is someone that you're comfortable having in the room with you. Have him/her take notes of what the doctor says, so that you can focus on the appointment. 
  • Make a list of questions and concerns. Prioritize the list, as you may not be able to get to all of them.
  • Prepare a list of current medications (including prescription, over the counter, vitamins, and supplements). Providing a list of previous medications can be useful, as well. 
During
  • Share your short introduction. This doesn’t have to be done in a formal way, but it can often provide a good start at the appointment. 
  • Answer questions honestly. This is not a time to wear a mask. Try not to over- or under- state the intensity or severity of your symptoms, as an accurate assessment is important. Be prepared to be specific in describing symptoms and how they affect you. 
  • Address your list of questions and concerns. It may not be possible to address the entire list during the appointment. 
  • Clarify if there is anything the healthcare provider would like you to track. Each provider has different preferences about what they want tracked, for how long, and in what format. 
  • Discuss goals of treatment. Sometimes the goals and expectations that we have for our treatment plan vary from our doctor's. 
  • Discuss expectations for communication between visits and for emergencies. 
  • Ensure that you know / understand what your next steps are (testing, treatments, etc), and when you should plan your next appointment. 
After
  • Complete any follow-up tasks your provider requested (if applicable). 
  • Follow the treatment plan you and your provider have agreed upon. 
  • Request office notes for your personal records. Some doctors utilize an online portal for records and communication. 
Rest assured that the initial appointment with your doctor is just the beginning. You don't have to get everything in during that first interaction. This is the start of a partnership and another part of your journey.

"Coming together is the beginning, keeping together is progress, working together is success." - Henry Ford

Monday, December 17, 2018

Establishing Care With a New Provider: The First Step

You might be seeking to establish care with a new healthcare provider under any number of circumstances, but knowing how to proceed can be daunting.

First, congratulations on taking charge of your health. Finding a provider that is a partner in your care is a powerful thing, and is definitely worth the time and effort involved.

Second, take a deep breath.
Photo by sydney Rae on Unsplash

It may feel like you have an insurmountable climb ahead of you, but just take it one step at a time. 

I previously shared My Journey. Here are a few things that helped me move forward in establishing care with a new provider. 

Many of us have a lot of data on our chronic illness, including medical history and pain trackers. Understand that there's simply no way that a doctor has time to go through all of that for each patient... and that's okay. 

A lot of what I was so overwhelmed and anxious about was feeling that I wasn't going to be able to provide all the answers or information the doctor would need to partner in my care. 

Having a brief introduction prepared is a good place to start. Being able to concisely share a description or outline of your journey is a great skill to have. Consider how you would share your health story in just a few sentences. Some questions to guide you:
  • When did you start experiencing headache? 
  • When were you officially diagnosed? 
  • What was your diagnosis? 
  • What categories of treatments have you tried (e.g., medications, devices, alternative therapies)? 
You know your body and your experience better than anyone. The combination of your new patient paperwork and your short introduction should result in a conversation between you and the provider. They will ask for more details when they need to, and you'll be able to answer because it's your experience. 

Establishing care with a new healthcare provider can be difficult and stressful, but it can also be hopeful. This is an opportunity for a fresh start. A new partnership. A different set of knowledge, skills, and experiences.

"The journey of a thousand miles begins with a single step." - Lao Tzu

When I was writing about this topic, I found myself addressing it from two different angles: personal experience and as a step by step process. It’s not unusual for me to struggle with which way I want to share, as well as with indecision. I’ve chosen to post both, as I believe them to both be useful in seeking and establishing care with a new provider. Stay tuned for the Step by Step guidelines.

Monday, December 10, 2018

Establishing Care With a New Provider: My Journey

A friend of mine recently moved to a different state and is facing the daunting task of finding and establishing care with a new healthcare provider. When she shared this with me, I remembered all of the feelings and emotions that had flooded me, when I faced the same thing. Sharing my journey to help others is a big reason why I started this blog, so it only seemed right to sit down and write. 

This will be a multi-part post. I'll share my story, and then I'll lay out some guidelines to use in your own journey. 

Establishing care with a new healthcare provider?
Photo by rawpixel on Unsplash

I’ve been there. It can be a time of mixed emotions. Anxious. Overwhelmed. Scared. Exciting. Hopeful. 

I’d known for a long time that my doctor was out of treatment options for me to try. He did his best to help me maintain, but he had nothing new in his toolkit to offer. Despite him outright telling me multiple times over several years that this was the case, I wasn’t able to hear and accept what he was telling me. 

Honestly, I was afraid. I’d been with this doctor for 7.5 years. He was the first headache specialist I was referred to in the year following my car accident (The Battle Begins). He had helped me through so much, and I was comfortable with him.
  • I was afraid of starting with someone new. 
  • I was afraid that I’d have to retry failed treatment options. 
  • I was afraid I’d have to prove and defend my pain and disability levels. 
  • I was afraid of the monumental task that starting with a new doctor while having such a complex medical history felt like.
I had spoken with a couple doctors at patient conferences about what was important for establishing a new relationship with a healthcare provider. This helped ease my mind a little bit about what I needed to do to prepare, but it still took me a year or two to get to a place where I was prepared to take that step. 

My doctor was very supportive and kind about me moving on to a different headache specialist. He sent the referral and continued my care until I could get in with the new doctor. 

I prepared a lot at home for that new doctor, but much of it was to make sure my mind was in order... for me, having order can help ease my anxiety, even if only a little bit. 

My first appointment with my new headache specialist was incredibly smooth. I had submitted all of the new patient paperwork prior to the appointment. I never felt like I had to defend myself in any way. He didn’t question how much the pain has disrupted my life... he trusted my word. That was hugely uplifting and powerful. Since each doctor has different preferences about what they want tracked, I clarified that with him on our first visit. We also discussed expectations for communication between visits and for emergencies. 

I left that visit “grateful for renewed hope with a new specialist. Looking forward to this chapter, as it already promises opportunities to make positive changes in my life. The road won’t always be pleasant… sometimes it’ll be downright miserable… but, I have a good support team that knows I can do it, even when I’m uncertain.” 

I only saw this doctor a few times before I moved a couple states away. I struggled with separating from a doctor that was a true treatment partner. We had barely scratched the surface, and the fear that I may not find another doctor that I trusted and would be a partner in my care lay heavy on me. 

Time to start over... but on a much larger scale, as I would need a new dentist, eye doctor, and primary care doctor, in addition to a headache specialist. It felt like a heavy task, but it was no longer monumental. There was a sense of hope that getting new perspectives of my health might reveal new possibilities in treatment and quality of life. 

I chose to find a headache specialist first. My previous doctor referred me to my current doctor and continued care until I could be seen. 

My first appointment with my current headache specialist was a lot like the previous one. I submitted all of the new patient paperwork prior to the appointment. The appointment was smooth, which I attribute partially to me continuing to hone in on my experience. We, too, discussed expectations and ensured we were on the same page as one another. 

That appointment initiated a series of consults and testing to address other health concerns and comorbid diseases. I saw around 8 new doctors (in addition to testing) in the following 5 months. Each doctor needed my story, but from a different vantage point... from the vantage point of his/her specialty area. It was exhausting, but I learned so much. 

I realize that not everyone has access to a headache specialist and that not everyone will have a smooth, positive experience. There are not even close to enough headache specialists available (there are less than 500 in the United States), and most doctors don't receive much education about headache medicine. All we can do is be prepared to do our best to find a healthcare provider (even if it's not a headache specialist) that is willing to partner with us in our care. 

"The fears we don't face become our limits." - Robin Sharma

Thursday, November 29, 2018

Step of Faith

As I return to my blog, I've taken some time to read some previous posts that I've written. It has highlighted so much of how I've changed over the years. My journey has been filled with ups and downs, light and darkness, joy and sadness.

My very first blog post, The Battle Begins, was a step of faith that I took during a very raw time in my life. I continued to be open about my journey in subsequent blog posts, and have striven to carry that vulnerability into more of my interactions.

As I would expect happens with most writers, I have drafts of thoughts and ideas that vary from unfinished to simply never posted. Some, I may not return to, but others will be shared on the blog. I don't have the desire, energy, or recollection to recount everything I might've written about over the past couple of years, but there are some experiences and lessons that should be shared.

Photo by chuttersnap on Unsplash
Ultimately, I'm not sure where writing will lead me. I'm taking another step of faith in getting back to
my blog and sharing more of my journey.

If there are any topics that you struggle with in your own journey, feel free to reach out or comment. Sharing our stories and supporting one another along our paths is powerful.

"Faith is taking the first step, even when you don't see the whole staircase." - Martin Luther King, Jr.

Disclaimer: Nothing on this blog is intended as medical or legal advice.

What I write on this site is my own, and if it is someone else's, I take special care to attribute it to the original author. So, please don't use any of my material without proper attribution or permission. Thanks.