Attitude of Gratitude: January 2015 Edition

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This year, I resolved to keep a daily gratitude journal and, like many of my resolutions, it quickly fell by the wayside. I am not naturally predisposed to optimism and 11 years of chronic migraines have not done a lot to change that. January was an extraordinarily difficult month for me and so far February hasn’t been much better. I was laying in bed, writhing in pain despite the use of various preventative/abortive/rescue medications and I realized that I was crying and I hadn’t even realized it until my cheek found the wet spot on my pillow. I glanced at my gratitude journal, which was glaring at me from the nightstand, and sighed. I didn’t feel well enough to lift my head or turn on the light, let alone dig through the wreckage that is my room to find a pen, so I decided to reconsider January and turned my mind towards finding something good to come out of that hellacious month. A week-long migraine both preceded and included New Year’s Eve. I missed the annual Christmas Tree Burning party, arguably my favorite event of the year. My face unexpectedly and inexplicably went numb for the better part of a day. My neurologist informed me “There is nothing else we can do for you.” This was going to be harder than I thought but my mind was racing (as is always the case) and I was determined to find something positive to fixate on for a change.

The first thing that came to mind was the eight-year anniversary of my boyfriend’s and my first date. One thing that I am acutely aware of is how lucky I am to have someone who chooses me each day, in spite of my chronic illness and all that comes along with it. Ian is unlike any person I have ever met in so many ways, not least of which in the way he treats me like a “normal” person without ignoring or disrespecting my experiences with an invisible illness. I find that many people (not all) often (not always) treat me in one of three ways:

1.) They see me solely as a “sick” person and base all of their communications with me around that.

2.) They see me as a “healthy” person and refuse to accept or learn about my illness.

3.) They ignore me entirely. Perhaps my illness makes them too upset (“I just can’t stand to see you suffer…”) or they don’t believe I actually have an illness but they have decided that they no longer have time for me…or my advocacy work.

This is what makes Ian and the other people in my life who stick by me through both the good and the bad so truly special.

January also brought good news on the advocacy front: The American Headache and Migraine Association announced the date of their annual patient conference in Washington D.C. and posted a scholarship application for patients who wish to attend but cannot do so without financial assistance. I have since applied and eagerly await the scholarship committee’s decision. I was also informed by The Migraine Research Foundation that my blog (the one you’re currently reading) will be listed under the “Resources” section of their new website when it launches this spring. My neurologist allowed my father to take video footage of my Botox injections in their entirety which I posted online to show fellow migraineurs considering Botox exactly what the procedure entails. My secondary intention was to show the lengths migraineurs are willing to go through in order to gain even partial control over their migraines. The video has currently been viewed almost 800 times. I spoke to fellow advocate and Migraine Rock Star Teri Robert on the phone for the very first time. Honestly, I was a bit star-struck, but the conversation was enjoyable, educational, and empowering. Never underestimate the power of talking to someone who knows firsthand what you’re going through. Lastly, I took to Twitter to live-tweet the realities of living with chronic migraine over a 48-hour period. Using the hashtags #ChronicLife and #Migraines, I met many new fellow advocates who battle various invisible and chronic illnesses.

As previously mentioned, I received my fifth round of Botox injections in January and what followed were the four most blissful days I have had in a very long time. For those four days, I was pain and discomfort-free, optimistic, grateful, and enthusiastic. This particular topic warrants a separate blog post but, for now, I’ll just say it was definitely one of the highlights of the month.

Recalling all of this, I realized that there was more to January than I had been focusing on. I figured I had better write it down before the negative memories eclipsed the positive ones. I have decided to try doing this after each month, which seems less overwhelming than a daily commitment. I hope I have inspired some of you to do the same.

MIGRAINE WARRIOR OF THE WEEK #2: SARA RICHARDSON

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Photo credit goes to Sara Richardson. Design credit goes to Michelle Tracy

Photo credit goes to Sara Richardson. Design credit goes to Michelle Tracy

Welcome to “WARRIOR WEDNESDAY” and our second “Migraine Warrior of the Week!” As explained in a previous post, each Wednesday a different migraineur will be featured on this blog. Any pictures that are provided, along with their answers to a questionnaire will be posted here, with the hopes of providing alternate perspectives with regards to migraine and other headache disorders. These people battle migraines with determination and bravery and deserve to be celebrated and spotlighted for the way they live their lives despite chronic illness. Some “Warriors” will make mention of their personal efforts to raise migraine awareness: blogs, websites, Facebook pages/groups, books, presentations, etc. I encourage them to do this because I want everyone to have access to as much information as possible. I encourage you to take a moment to peruse whatever they are doing to help and to consider what you, personally, can start doing to make migraines visible and to stop the stigma associated with chronic invisible illness. 

*The content of the following interview does not necessarily represent the views and/or opinions of this blog or its creator. The content of the following interview only represents the views and opinions of the person who filled out and submitted the form. This content is not intended as medical advice and no person should ever start, stop, or change a treatment plan without the express permission and supervision of a trusted and appropriate medical professional. Some treatments that work for one person may not work for another and vice versa. This website encourages its readers to keep their minds open regarding possible treatments and to make sure they discuss all questions and concerns with a trusted and appropriate medical professional. No one pays to be a part of this project, nor do they receive compensation.*

MIGRAINE WARRIOR OF THE WEEK: SARA RICHARDSON

Tell us a little bit about yourself…share as much as you feel comfortable sharing.

What’s your name? Sara Richardson

When is your birthday? Dec. 19, 1971

How old are you? 42

Where do you live? Clear Lake, IA

What is your relationship status? Engaged

Do you have children? No.

At what age did you have your first migraine? 12.

At what age were you diagnosed? 15.

Are your migraines episodic or chronic?

Chronic Migraines, daily headaches, silent migraines, status migraines.

Describe a typical migraine for you. What does it look like/feel like? What symptoms do you experience? What kinds of activities are limited/impossible for you during a migraine attack? 

When I have one of my bad ones coming on, I have pain in the back of my head (at the base of my neck) and then I also begin to get confused.  The worst one that I have ever had, I didn’t know who my mother was.  I also lose some mobility – I get kind of dizzy and need to lay down.  Since I don’t know what I should be doing when I have these, I pretty much can’t do anything – except lie in bed and try to get some rest.

People tend to associate migraines with pain in the head. Other than head pain, what would you say is the number one symptom of your migraines that is the most debilitating?  Confusion.

What are your migraine triggers? 

Nicotine, caffeine, sulfites, nitrates, chocolate, aspartame, cheddar cheese, pork, sometimes dairy, sometimes citrus, heavy cloying smells, sometimes the sun (too bright), fluorescent lighting, weather changes, sometimes yeast……it goes on and on.

What treatments have you tried to manage/control/cure your migraines? Which have been the most and least effective? (Include medications, Botox, trigger point injections, herbs and supplements, surgeries, acupuncture, massage, cranial-sacral therapy, Reiki, physical therapy, exercise and dietary adjustments, and anything else you have tried.)

Medicines, change in diet, surgery (I have a PFO in my heart to block a hole), biofeedback, chiropractor, physical therapy, all sorts of different doctors, and an occipital nerve block.

Most effective – medicines and diet

Least effective – biofeedback and occipital nerve block

How have migraines changed your life and the life of your family and loved ones? 

No one knows if they can count on me to be there for anything because I never know how I am going to be feeling on any day, and if I am there – they also know that I may have to leave or lie down at any point in time.

What emotions do you associate with your migraines?  

Sadness, tiredness, depression, frustration.     

What is the worst thing a person can say or do during a migraine attack? 

Oh, you can’t be in that much pain – just keep going and it will go away.  (My mother uses this one a lot)

Give non-migraine patients some tips on how to be helpful, both during an attack and in everyday life, with regard to migraines, chronic pain, and invisible illness.   

During an attack – help me to get home, and to take my medicine.  

In everyday life – ask if you can come over because you know that they may not be able to get out of the house or tell them if you are going somewhere (i.e. – grocery store) and ask if you can pick anything up for the migraineur.

If you could convey one thing to the general population about migraines, what would it be?  

IT IS NOT JUST A HEADACHE!!!

Do you participate in any advocacy work for migraines? Is there a link (or links) that you would like to share, such as for a blog, Facebook page/group, or website? 

I have some support groups online that are for people with either/both migraine conditions or chronic pain on Facebook – Chronic Migraine Awareness (there is both an open forum – for the public, and a closed one (for people with chronic migraines to vent safely) and Purpose in the Pain Pen Pals – which is a pen pal group for people that have chronic pain to communicate with others through messages and the mail.

Do you battle any other diseases/illnesses/disorders other than migraines? 

Not really 

Is there anything else you would like to share? 

Migraines are very common, however chronic migraine is worse than just about anything.  When someone who has chronic migraine has one of their attacks, they don’t know how long that will last, how bad it will be, or how many people we will disappoint.  When we have a migraine attack, we feel very alone and can get really depressed.  Also, one of the worst things to say to someone with chronic migraine is “Oh, when I get one I take some over-the-counter medicine and it is fine after about an hour.  Have you tried that?”  Of course we have tried that!  That’s one of the very first things that we have tried.  Now, I have medicine that most people who have episodic migraines have to go to the hospital to get (when theirs get too bad for over-the-counter medicines to help) that I give to myself.   

The medicines that I have are injections and they can hurt badly when I have to give myself a shot.  So I end up trying not to take my medicine, because even though I know that it will make me feel better (most of the time) it will hurt almost as much as my head already does.  Or, it may NOT work, and that means that I will have to go to the E.R. Luckily for me though, I go to the E.R. that is affiliated with my G.P. Dr. and have a plan of action of what needs to be done when I have to go there – AND THEY ACTUALLY FOLLOW THAT PLAN!!  There are a lot of migraine patients that when they have to go to the E.R. because their medicines aren’t working for them, they get stuck there for hours with no help, they aren’t believed that they are in as much pain as they really are, they are told that the medicine that the patient says will work – the doctors won’t give them – so the patient ends up getting some medicine and maybe an IV of fluids and then are sent home.  What would you do if you were asked by a doctor, “What is the medication that has worked for you in the past?”  And when you tell them the medicine that worked……your answer given is this, “Oh.  We won’t give you that!  We don’t give that to migraine patients.  You are just a drug seeker, so I won’t give you that.”  And this is what happens to you – even if you do have a plan of action from your doctor (on his/her stationary) that states for you to follow this plan. 

Think about it…………………………STOP THE STIGMA!!!   WE ARE NOT DRUG SEEKERS, WE JUST WANT THE PAIN TO GO AWAY!!!!

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Thanks, Sara! Keep your eyes on this blog daily for new content and every Wednesday to catch the newest “Migraine Warrior of the Week!”

MIGRAINE WARRIOR OF THE WEEK #1: Jennnifer Germain

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Picture credits go to Jen Germain. Design credit goes to Michelle Tracy

Picture credits go to Jen Germain. Design credit goes to Michelle Tracy

Welcome to “WARRIOR WEDNESDAY” and our very first “Migraine Warrior of the Week!” As explained in a previous post, each Wednesday a different migraineur will be featured on this blog. Any pictures that are provided, along with their answers to a questionnaire will be posted here, with the hopes of providing alternate perspectives with regards to migraine and other headache disorders. These people battle migraines with determination and bravery and deserve to be celebrated and spotlighted for the way they live their lives despite chronic illness. Some “Warriors” will make mention of their personal efforts to raise migraine awareness: blogs, websites, Facebook pages/groups, books, presentations, etc. I encourage them to do this because I want everyone to have access to as much information as possible. I encourage you to take a moment to peruse whatever they are doing to help and to consider what you, personally, can start doing to make migraines visible and to stop the stigma associated with chronic invisible illness. 

*The content of the following interview does not necessarily represent the views and/or opinions of this blog or its creator. The content of the following interview only represents the views and opinions of the person who filled out and submitted the form. This content is not intended as medical advice and no person should ever start, stop, or change a treatment plan without the express permission and supervision of a trusted and appropriate medical professional. Some treatments that work for one person may not work for another and vice versa. This website encourages its readers to keep their minds open regarding possible treatments and to make sure they discuss all questions and concerns with a trusted and appropriate medical professional. No one pays to be a part of this project, nor do they receive compensation.*

MIGRAINE WARRIOR OF THE WEEK: Jennifer Germain

 

Tell us a little bit about yourself…share as much as you feel comfortable sharing.

What’s your name? Jennifer Germain

When is your birthday? August 23, 1977

How old are you? 36

Where do you live? Stockbridge, MA

What is your relationship status? Married

Do you have children? How many and what are their ages? 3 children ages 9, 11, 13

What do you do for fun? What are some of your interests/passions? 

I love to read, write, send cards to people who need a smile, clean (very OCD!!), helping others.  I really have so much fun throwing parties for large numbers of people at our house. However, I have been too sick to do so in the past few months-a year.

Do you currently have a job (inside or outside the home)? What is it? Have you ever lost a job due to the disabling nature of your migraines?  

I work at home for my husband’s business. I do paperwork for the business as I am able…from my bed most often.  

At what age did you have your first migraine? At what age were you diagnosed?  

First migraine at age 21; was episodic until diagnosed with Chronic Daily migraines in 2004 at the age of 26.

Are your migraines episodic or chronic? Chronic

Describe a typical migraine for you. What does it look like/feel like? What symptoms do you experience? What kinds of activities are limited/impossible for you during a migraine attack?   

A typical migraine keeps me in bed all day. My eyes become puffy and I become severely nauseated. It feels like my right eye will pop out of my head and if that happened it would be soothing to pour cold water directly on my nerves. I sleep a lot when I have a migraine and I can’t even laugh or smile or cry. That all takes too much energy. It’s impossible for me to drive with a very bad migraine. We have had to hire a nanny to help take care of the boys because they need so many rides to different places. It makes me feel like a bad mom that I cannot do this stuff myself. Having a bad migraine makes me very emotional. 

People tend to associate migraines with pain in the head. Other than head pain, what would you say is the number one symptom of your migraines that is the most debilitating?   

Nausea. 

What are your migraine triggers?  

Everything! Okay, here’s a list off the top of my head: perfume, cologne, smelly deodorants, cigarette smoke, hormones, lack of sleep, the sun, heat and humidity.

What treatments have you tried to manage/control/cure your migraines? Which have been the most and least effective? (Include medications, Botox, trigger point injections, herbs and supplements, surgeries, acupuncture, massage, cranial-sacral therapy, Reiki, physical therapy, exercise and dietary adjustments, and anything else you have tried.)  

Currently, I am doing Botox every 10 weeks, taking Amerge twice a day as a preventive and also taking Neurontin twice a day for prevention. This is proving to be my best combination yet although the migraines are far from controlled. Massage therapy helps very much as well to remove tension and tension triggers a migraine for me. Other things I have tried and they have not worked include: Verapamil, Topamax, Depo-Provera shot, Riboflavin, Depakote, Proponal, Progesterone, etc. I have tried many alternative therapies such as acupuncture, cranial-sacral therapy, physical therapy, dietary changes, and many all natural supplements. 

How have migraines changed your life and the life of your family and loved ones?  

Migraines and my other chronic illnesses have changed my life completely. I used to be a very energetic young woman who was always in good health and on the go. Now I am bedridden, ten years later, and each day seems harder than the one before. Migraines have affected my loved ones. My husband worries about me, feels sad that I cannot accompany him on outings like I used to and feels frustrated that he can’t just fix me. Migraines affect my kids. I am no longer the soccer mom I used to be. Now their nanny brings them to sports practices and games. We all miss out on things because I have migraines. And many people inmy extended family do not understand and their lack of compassion is what can spiral me into depression like nothing else.

What emotions do you associate with your migraines?  

Guilt, sadness, anger, frustration, doubt, self-loathing, isolation, exhaustion, fragility.

What is the worst thing a person can say or do during a migraine attack? 

The worst thing a person can do during a migraine attack is think there is nothing they can do to help. There are so many ways that anyone could help me.

Give non-migraine patients some tips on how to be helpful, both during an attack and in everyday life, with regard to migraines, chronic pain, and invisible illness.

The tips that I would include are:

– accept your loved one, pain and all

– help spread awareness 

– go to appointments with your loved one

If you could convey one thing to the general population about migraines, what would it be?  

I would like to convey that you can’t judge a book by its cover!

Do you participate in any advocacy work for migraines? Is there a link (or links) that you would like to share, such as for a blog, Facebook page/group, or website?

Facebook page:

https://www.facebook.com/MyLifeWithChronicIlnesses?ref_type=bookmark 

Do you battle any other diseases/illnesses/disorders other than migraines? 

Yes, I do. I also have Gastroparesis, Celiac Disease, Hashimoto’s, anxiety, depression, panic attacks, Raynaud’s Syndrome, IBS, and both heat and cold intolerance.

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Thanks for sharing, Jen! Keep checking this blog daily for new content and be sure to come back each “Warrior Wednesday” to read about our newest “MIGRAINE WARRIOR OF THE WEEK!”