Migraine Awareness Month Blogging Challenge #22 (Part 2): Masking the Pain

My little sister was married to her handsome prince this past weekend. I'm so happy for them! It's been a looong time coming, and I'm so glad they're now united in marriage... and the wedding was perfect and beautiful!

My migraines didn't seem as interested in helping make their day special and perfect, though. In fact, last Thursday, a migraine started... it still hasn't subsided. I was able to use my pain meds to get through the rehearsal and dinner, and their wedding day... but that wasn't without A LOT of inner turmoil.

* I'm going to include a few pictures. I apologize for the poor quality - I have to see if I can get some better quality copies, but I couldn't wait to give a sneak peak! *

Rehearsal

I wasn't feeling well on Thursday (I struggled all day, but we had a nice evening - except that perfume and scented lotion helped push me further over the edge... didn't really know until it was too late), but I completely crashed on Friday.

I ended up taking my pain meds (I didn't want to try a new medicine, so I used meds that I knew how I would react to - knowing the side effects I would face). I let the best man know that I might be off-balanced and that I might need to lean on him for support (luckily, he was a pretty solid guy).

The Bride & Groom at the Rehearsal Dinner

I let my immediate family know that I wasn't doing well at the rehearsal. I had some family members tell me (after I mentioned that I wasn't doing well) that I have a very good mask. I pushed as much as I could. I'm sure I wasn't very pleasant to be around. Between the heat, humidity, lights, sounds, group of people, nausea, irritability, camera flashing, etc, I just couldn't take anymore, so Jeremy and I left the rehearsal dinner early (hoping that I could sleep off the migraine, so my head would be better on the wedding day).

Wedding Day

I knew when I woke up that I wasn't going to make it through the day without taking anything. So, I took my pain meds, again, on Saturday.

I've written before about wearing a mask to hide the pain - see this post, The Girl Behind the Mask. But, it was a little different this morning. Here's something I wrote this in the morning, before the wedding: "As I put my makeup on this morning, I can't help but feel like an actress preparing to go on stage for a performance - 'the show must go on.' I feel fake or something. But, it's Jenn's big day, and I want to be there for her... even if part of me is missing."

It wasn't easy dealing with the pain plus side effects, but I'm glad that I was able to attend. I pushed really hard, and I was told that I had a very good mask on - that others couldn't tell that I was hurting so badly, and that I looked absolutely beautiful. I guess working on masking my pain came in handy the other day...

The Gorgeous Bride

My sister's wedding was absolutely beautiful!!! I shortened my maid of honor toast (I'm going to write out what I originally wanted to say, and give it to them with their wedding gift) - I told my sister before the reception, so she'd know. I started tearing up during the toast, but it was mostly due to the fact that I was hurting so badly just trying to get the toast done. I have a lot of love and emotion for my sister and her new husband, but it was hard for me to focus on much else besides the pain - I just hope they know how much they mean to me.

After dinner, toasts, and cake, I had to leave the reception area. The music was sooo loud, and there were flashing lights in the reception room. So, I didn't really get to spend much time visiting or dancing with anyone. My husband and I left before they did a mock exit (then they came back in to dance the night away) with sparklers - I just don't think I could've handled the flickering lights of the sparklers.

Jeremy & Jamie

I know that my family understands... they reassured me a lot. I took several time-outs for myself, but I really just needed to try to sleep it off. I'm so very happy that the day was perfect for my sister and her new husband.

Based on the pictures the photographer took, everyone seemed to have such a great time. And, I'm so glad that they did. I wish I could've been more active in the festivities, but they're married and had a great time... that's what matters. :) They're in Costa Rica for their honeymoon, this week. I'm staying in my apartment trying to recover (and I can't take meds, since I took them Friday and Saturday... so, it's been a long, tough week).

Jeremy, Jamie, Jennie, Shawn

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #22 (Part 1): The Game Changer

There are many examples of times that my plans have changed due to an unexpected Migraine!!!

I've missed friends' weddings, family get-togethers, church services (I'm ashamed to say that I've only been a couple times this year), and various other events (big and small). I often have to change / adjust plans, even to do "normal" activities like going to the grocery store.

Jeremy and I have had to get used to the "winging it" that comes along with a chronic illness. I never know how I'm going to feel or how long I'm going to last. We both hate having to change / cancel plans with others, and / or make sure that other people understand that our plans could change at the last minute (they're pretty volatile). I think it's a guilty sort of feeling, though we may not label it or think of it as such. Even though we're getting used to this, we really hate when it starts affecting other people.

Whenever I have an unexpected Migraine-free experience (i.e., having a manageable headache), I try to take advantage of it, without overdoing it. I want to get all of the things done that I haven't been able to do because of bad Migraines. It takes a lot of reminders from myself and my husband to not overdo it, and to remember to take frequent breaks and pace myself. But, I try to cherish every moment of these scarce low-pain days!

"Life is about not knowing, having to change,
taking the moment and making the best of it,
without knowing what's going to happen next."
- Gilda Radner

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #21: Shaking in My Boots

I've written about chronic pain and fear before. A post that specifically comes to mind is: Fear in the Life of a Chronic Migraineur.

I fear much more than I should, and I'm working on it. But, living with chronic, debilitating pain can lead to an influx of questions and fears. I fear: letting others down, missing important events, when the next big migraine will come, if the chronic pain will ever cease, etc.

With the build-up to my sister's wedding (which was this past weekend), I had to deal with a lot of fear. Would everything get done in time? Would I be able to attend all of the events leading up to and including the wedding? Would I be able to put a smile on my face, even if the pain was taking over everything inside of me? Would my sister get the amazing wedding day that she deserves? Would my crash come sooner or later... I knew it was coming because I was pushing so much / hard, but I hoped that it would come after the wedding festivities?

As I helped plan the wedding, I tried to take things in baby steps - working on things as far in advance as possible. I started resting and trying to save my energy, several weeks prior to the wedding. I was doing pretty well with things... but then things came crashing down.

Part of it was the growing stress of the wedding being in a month... two weeks... one week... a few days... Then, there was the rise in temperature and continuously high humidity of mid-June in Texas. I'm sure there were a whole grouping of things that stacked on top of each other to cause the "perfect storm," and my body just crashed (a couple days earlier than I had hoped).

I tried to take things easy. I tried to take breaks and rest. All of this both before and during the wedding activities (i.e., days leading up to and including the wedding day).

I had saved my allotted two migraine med days for the end of the week, and thank goodness I did - I ended up having to take them for the rehearsal / dinner and the wedding day festivities. I went to the rehearsal and part of the rehearsal dinner (my husband and I left early, so that I could try to get over my migraine before the wedding day). I woke up on my sister's wedding day with the same horrible pain that I'd had the day before, so I took my meds and started getting ready - determined to be there for my sister. I'm so grateful that I was able to attend the wedding, even though I was in a lot of pain and highly medicated.

Dealing with fear as a chronic Migraineur can be very challenging. We want to be there for special events, but it's difficult, even when we have an understanding family. I'm so glad that there was an amazing photographer for the wedding day! I'll be able to see some of what I wasn't able to participate in... and I'll see how happy my sister and her new husband are with each other.

Maintaining joy in spite of pain is true strength.
Don't let the pain define you. 

I don't completely agree with the above quote in the image. I think the part about "pretending" should be taken out completely. I wasn't pretending to be happy this past weekend. I'm truly happy for my sister and new brother-in-law. Between the pain and the meds, I wasn't able to show it outwardly very well (the meds make it difficult for me to show any emotion). But, I did my best. I'm sooo very happy for the happy couple!!!

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #19: The Match Game

Though there are 37 million Migraineurs, there are only 290 headache specialists! No wonder there are so many people that suffer from Migraine or other headache disorders that never get a diagnosis, or are misdiagnosed.

But, even with that few headache specialists, you can't just throw a doctor and a patient together and expect a great match. As with any relationship, the relationship between a health care professional and a patient is more complex than any list can capture. But, there are some characteristics that you can look for, when setting out to find your perfect match.

That being said, the perfect doctor to treat my Migraines would be (in no specific order):

- A excellent listener
- Competent / medical expertise (well-versed in Migraine and other headache disorders) - able to admit when they don't know something, and resourceful enough to find the right answer for their patient
- Observant
- Open to all kinds of treatment
- A great problem-solver
- Confident (but not hubris)
- Empathetic - understand the patient's needs as a whole person
- Humane - caring, compassionate, and kind
- Forthright - straightforward and honest
- Respectful - take the patient's input seriously, work with the patient, ethical in practice
- Thorough - conscientious and persistent
- Educated - willing to continually learn and stay up-to-date on current research in the field; willing to help provide the patient with the tools to help him/herself - be a partner in the patient's care
- Possess fortitude - an unshakable sense of hope; mental and emotional strength in facing difficulty and adversity courageously; resolute endurance

I actually am blessed enough to have a doctor that possesses many (perhaps all?) of these characteristics. He's running out of treatments to try, but he's always open to anything that I bring to him, and he's willing to try new and different things to try to improve my quality of life with chronic Migraines. I truly hope that he and I can continue our partnership, and find something that helps me to live the best life possible (even if the chronic Migraines continue).

This post was written as part of the Migraine Awareness Month Blogging Challenege (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #18: The Price is Right

In 2011, the National Institute of Health (NIH) only designated 0.07% of NIH funding to headache disorders! The great reach of Migraine disease and other headache disorders (there are over 100!) isn't being acknowledged and dealt with. Headache and Migraine are an enormous drain on society - costing us more money than epilepsy, asthma, and ovarian cancer combined. Yet, funding doesn't accurately reflect this.

If money were no issue, there are a lot of things I would do for the Migraine community - I'd make sure that everyone was able to get the medical treatment they deserve, I'd ensure that doctors receive more Migraine and headache centered training in school, and I'd increase awareness of Migraine and headache disorders.

But, if I had to choose ONE thing, it would probably be to expand research opportunities to learn more about Migraine and other headache disorders. Research into the epidemiology, pathophysiology, and treatment of Migraine is greatly needed to help dispel all of the myths, misconceptions, and stigma that surround Migraine. We know so little about what's happening in the brain during a Migraine attack, which leaves diagnosis and treatment greatly lacking.

And, since money is not issue, I'd help increase funds for Teri Robert's idea to create an endowment fund, which would permanently fund research for Migraine.

Image by Kate Chapell

I believe that funding research will give Migraineurs some much-needed HOPE. And, that is what will help us keep taking the next step, and the next step...

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Migraine Awareness Month Blogging Challenge #17: Father Knows Best

First, Happy Father's Day to all the fathers out there.

I have the BEST Dad in the world! We've always had a very strong connection. We tend to understand what the other is thinking and/or experiencing in an unexplainable way. Hey always seems to know just the right thing to say, even if silence is what is needed.

Dear Dad,

Thank you so much for always being there for me. While you don't have Migraines, you seem to understand some of the pain because you had an accident several years ago, too. I hate that either of us is in pain, and I wish I knew a way to get rid of it.

My migraines limit me in so many different ways. I really appreciate your support and encouragement to take things one step at a time, to break things down into small baby steps, and to celebrate even the smallest achievements.

I love you so very much, Daddy!

Love,
Jamie


This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).