Imagine

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Imagine that you are in excruciating pain and nauseated beyond belief. You are dizzy and tired and weak. The room feels like it is spinning even when you lay perfectly still with your eyes closed. Bright lights assault your pupils, even with your lids closed. You’re throwing up everything you can remember eating since last Tuesday. You’ve already given yourself two injections that hurt like hell and leave bruises on your thighs. You’ve already taken oral steroids which make you feel like you want to jump out of your skin. You’ve already taken painkillers and anti-nausea and anti-anxiety medications. You’ve only gotten out of bed to go to the bathroom. You’ve choked down as much ginger ale as you can in an effort to combat the nausea and stay hydrated. You’ve run out of medicine. You’re away from home and your doctors. You’ve got plans that you don’t want to miss for anything in the world but the doctor says there’s nothing else that can be done because you can’t fax pain medication. It must be hand-delivered with a doctor’s actual signature. The ER won’t help because they’ll just accuse you of drug-seeking and send you on your way. Do you head home on the off-chance that your doctor will prescribe pain meds and that they will work? Or do you stay where you are and hunker down as best you can in hopes that the incredible pain passes soon and you can still participate in your planned activities? It’s a lousy situation, isn’t it? In fact, it seems like a lose-lose situation. Now imagine that you go through this (or at least the very fear of this) every time you travel more than 30 or so miles from your house. Imagine the kind of anxiety this would evoke during every trip, every overnight, every “supposed-to-be-fun-but-migraines-ruin-everything” event. It’s a lousy way to live, if you can even call it living at all. It’s more like existing. I’m tired of merely existing. I want to live, to light up the world like a firecracker. This is why I am so passionate about advocating and fundraising. The constant posts and updates may seem like a nuisance to some but this is my life and the life of my friends. If I don’t raise awareness and money for such a debilitating chronic invisible illness, I can’t ever expect better treatment or a cure. And so I must turn out the light, dim the computer screen, and write posts like this in hopes of reaching at least one person. Making one person understand what I go through or letting one person know that they are not alone. I can’t squint at this screen any longer. I must lay back down and pray that the pain eases sooner rather than later. Now do you get it?

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!”