Friday, June 29, 2012

More Often Than Not: Migraine Awareness Month #29

June is National Migraine Awareness Month. Today's Prompt: Today is Chronic Migraine Awareness Day. People with chronic Migraine have a Migraine more often than not. Think of and share a random act of kindness that you could do for someone with chronic Migraine. 

Toni Bernhard, author of How to Be Sick, entitled her most recent article in Psychology Today"What Those With Chronic Pain or Illness Don't Want To Hear You Say" in which the first item listed was "Give me a call if there is anything I can do."  Using her example that being non-specific when giving support to someone with chronic Migraine is not usually useful, I want to come up with a random act of kindness that is specific.

Though my idea is not creative as I am stealing it from someone else, my random act of kindness that I could do for someone with chronic Migraine is something that a beloved friend of over ten years has done for me. She sends me random hilarious cards...some that only she and I would appreciate the humor. And earlier this year when I was going through a difficult patch with my health, she started sending me cards meant for occasions that she do not apply at all, such as "Happy Personal Assistant's Day" or "Happy Nurses Day" or "Happy 8th Grade Graduation" or "Happy Confirmation Day". How fun to get something else other than a "Get Well" card! :)  Her kindness has been the laughter that she brings me but also that she thought enough to take the time to get the card, write in it, and mail the cards all with a baby in tow.

Perhaps I won't start sending "Happy 8th Grade Graduation" cards to my chronically ill friends---they might think I'm looney tunes! But sending even just a paper note, with a fun message in a simple envelope covered with stickers with just enough room for the forty-five cent stamp would be something I could do to lift the spirits of someone with chronic Migraine.


If you are looking for ideas/concrete ways to support a chronically ill friend, the book by Lisa Copen called Beyond Casseroles: 505 Ways To Encourage a Chronically Ill Friend  has, well, 505 different ideas on how to support someone with chronic illness.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Monday, June 25, 2012

Through My Nonexistent Child's Eyes: National Migraine Awareness Month #25

June is National Migraine Awareness Month. Today's prompt is: "Through My Children's Eyes" Write a letter to yourself from your children.

Dude. What a difficult prompt for those of us who have had thus far had our dreams for parenting and having a family thwarted by Migraine disease. I saw that some bloggers wrote letters from their pets which is a cute idea. I loved reading a honest and loving letter written by Nancy Bonk's daughter, Sarah to her mother here.  It is so good to see how children can grow up in a household where a parent is suffering greatly from Migraines and be so well-adjusted, loving, compassionate and be able to see and appreciate the strength that her mother has.

In the Spring of 2010, I finally thought Dr. R and I had found the magic management plan for myself of a combination of treatments and I thought my disabling Migraines were behind me. By August of 2010, George and I were pursuing adoption (not wanting to put my body through the difficulties of a pregnancy). We worked on a grueling home study including attending many educational classes, writing a 10 page biography, going through interviews, getting background checks, spending thousands of dollars ect.

Our adoption agency, domestically only does open adoptions (meaning you keep contact with the birth parents) and so we were about to start our "Dear Birth Parent" letter which is a way for birth parents to choose the family they want to meet to potentially place their child with. We were emotionally invested.  But everything went haywire when I developed Meniere's disease ending up with surgery in March 2011 and in the end of November 2010, one of my Migraine preventatives stopped working which jammed up the works and I was back to being disabled by Migraine disease. Adoption halted.

It was heart-breaking. I felt that was our chance for parenting through adoption. Our one chance to prove to the many people evaluating us, but especially the birth parents, that I was healthy enough to parent. With open adoption, the birth parent picks the adoptive parents. Now, no matter how well I get,the chances of a birth parent choosing George and I to parent their child as my health history is less than stellar is quite low. And yes, we have to be completely up front with our health histories. I have heard other individuals with chronic illness waiting as long as six+ years to be chosen and many are never chosen. International adoption is usually a closed-adoption process, but most countries are more strict in their rules. In some, you cannot be over the age of 40. George just turned 40 in March. And in others you cannot be on prescription medication in order to adopt. Let's all laugh out loud about that one.

If George and I see God's plan is for us to parent, our options are limited: gestational carrier--lay terms means surrogacy (my estimates have shown baseline $30,000 to 60,000, not including the $11,000 for IVF as I'm not diagnosed with infertility) OR pregnancy where I carry the child.

So unless I win the lottery or have a generous village of people raise the money for a gestational carrier my only choice would be pregnancy. And that would be an adventure of sacrifice, challenge, stopping medications that help treat my Migraines, hormonal craziness, a necessary village of hands-on supporters and the unknown.

So after being educated on how difficult it would be for me to have a child after living through the years of chronicity that I have, here is a letter I composed from my nonexistent child:
Mommy, I think you would be a wonderful parent along with Daddy. I see how much you loved Brittany, Emily, Knightley and how much you love Zoe and Giselle. I know you would love on me a gazillion times more. Keep trusting that God has a plan for you and Daddy. Keep enjoying the family you have now and focus on living in the moment with joy. I wouldn't want you to miss all that God has in store for you right now while you are waiting and hoping that someday I will come along. And if we never get to meet, I know that if you keep your eyes on God and continue to live in the moment, you are going to have the best life with Daddy.  

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com.

Sunday, June 24, 2012

My Thoughts on Wish Lists for Migraineurs: National Migraine Awareness Month Blog Challenge #24

June is National Migraine Awareness Month.Today's prompt: Dear Genie: Put together a wish list for your life.

I am struggling with this prompt. My struggle with the prompt is that it can be a challenge to remain positive with chronic Migraines.

Well isn't making a wish list positive?

I think there is a potential for a wish list to be positive or negative and that depends on Migraineur's perspective when approaching the list. Sometimes, making a wish list as a chronically ill person only makes the person feel depressed because they cannot do what is on their wish list. But sometimes making wish lists are fun dreams that take us away from the confines of what limitations Migraines have put on us.

Copyright KLW
Copyright KLW
Copyright KLW
Copyright KLW
For example, I have a wish to take a beach vacation with all my friends with Migraines on an island that is only for us where we have gorgeous sound proof beach front homes (unless you want to open the windows to hear the waves) and the water is the most beautiful blue we have ever seen. The weather would be perfect with no possibility of triggers, the temperature would be comfortable and the sunlight would dimmed enough so that we could all enjoy the outdoors. We would have immediate access to health care providers and treatments that would be easily accessible and without a wait. We could have as many complementary massages, acupuncture sessions, hot tub soaks, and trigger-free delicious food that we would want. Oh and by the way, the food would not make us gain a pound; in fact, it would help us gain/maintain/lose weight: whatever our needs are. It would be a time where we would be surrounded by those who understand; it would be full of relaxation, friendship, and lots of quiet laughter. Anyone wanna go? 

Wish lists may even provide motivation. When I wrote my long and short dream goals in early May and shared about them in my post, Improving Stamina With Chronic Illness: How I'm Doing It, I approached my list with the mind set that if I could do even one thing, that would be great, and I wouldn't judge myself for not being able to do the other things. Disappointment is natural, but embracing who I am, my limitations and all is essential for my well being and joy.

I have a lot of hopes and dreams and desires which are what "wish" is defined as, but I have learned through the course of the unpredictability and lack of control I often have over my chronic Migraines, that finding joy in what my life is right now, even when things are hellish, brings me the best quality of life for me and for my family. Even if the item of joy/thankfulness is very small in that moment (i.e. Being thankful that I have a cozy quilt to cuddle up under.)  

If you'd like to read the goals that I had set for myself you can check out my other post  Improving Stamina With Chronic Illness: How I'm Doing It.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Friday, June 22, 2012

Unexpected Migraine-Free Experience: Migraine Awareness Month #22

June is Migraine Awareness month. Here is today's prompt:
Tell us about a time your plans changed due either an unexpected Migraine or an unexpected Migraine-free experience.

I have PLENTY of plans that have been changed due to Migraine over the last almost 7 years. I've missed every important event and small event you can think of.  However, I have a fantastic story to share about an unexpected Migraine-Free Experience.

As my health was quite crazy the most of the beginning of 2012, right now is the time that I am having unexpected Migraine-free experience. As a chronic Migraineur, currently I have only had 4 Migraines in 37 days. Oh yes, you read that correctly!!!  I have so many things happening in my life including the passing of my most beloved dog two weeks ago that could be triggers. Yet, I am flourishing and continue to improve. I am even able to wear my non-tinted prescription glasses in  places with fluorescent lights (even though I still get a bit sensitive, I don't get a Migraine.)

And to follow up on my previous post, I am driving regularly. I have gone shopping at stores after driving to them. And most exciting of them all, I am waiting to hear back from the instructor for a date that Zoe and I can take our annual test to get back in the process toward becoming an animal assisted therapy team! So excited to be closer to my long term dream goal that I thought was a long distance dream. 

I really wish I knew why my chronic Migraines have suddenly dropped in frequency. I have a great regimen that is balanced with medication and holistic measures. Perhaps everything I discussed that I have been doing in my last post has helped?  But honestly, I have done everything similarly before and not have these results. I think my brain just happens to be receptive neurologically in a good place right now.

I'm gonna continue the motto I have had when days were hard: Take one day at a time. Right now, I am going to enjoy each day and each moment and not being concerned about the next day.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Tuesday, June 5, 2012

Improving Stamina With Chronic Illnesses: How I'm Doing It

2012 had a really rough start in store for me. It was confusing and frustrating and I have learned so much more about my body and how complicated is. I had many symptoms that physically immobilized me and I had completely lost my stamina! Once I figured out what was wrong and things started to improve a bit, I realized that my body needed to get stronger. BUT, there are NO handbooks on how to improve your stamina when you have chronic illnesses where each day's limitations are so different.

"Increase Stamina" and "Chronic Illness" are like oil and water. Trying to do daily tasks on a regular basis is often impossible and exercising with chronic illness has a different meaning entirely than it does to the "average" world. But, increasing stamina. Ha! For the chronically ill, that is INSANE.

But, I kept thinking "What do I do? Give up?!" That seemed even more depressing than looking up at the million pound bounder I was gonna have to push up a never ending steep slope.

I figured I had to start somewhere. Mentally, I started in a place of grace. I told myself that I would not compare myself to anyone. I told myself that I would celebrate every baby step of accomplishment. I decided I would not beat myself up for what was not under my control. And I was determined to try...because really, what did I have to lose? I was starting from a pretty low bottom: I had already moved up from bed-bound with a mini-fridge and microwave on my nightstand, but was still someone who did not take a shower but once every 4-5 days because it was so draining physically and difficult Migraine-wise.

Next, I did what I know how to do really well: make goals. Now, making goals with chronic illness really is a different ball game in that actually accomplishing the goal is not really what is most important, but the fact that you tried. I started with  a long term dream goal. My long term dream goal was something that at that time I could not imagine doing, but would hope to do some day. It was not a fantasy, like climbing Mt. Everest, but a dream that might possibly maybe hopefully be accomplished if everything lined up right.

My Long Term Dream Goal: Volunteer in some form, preferably with my dog, Zoe, as an animal assisted therapy team. (Zoe and I passed our therapy test November 7, 2010, but unfortunately my health took a downward spiral and I never got to take the next steps.)

Then I wrote down a group of short term dream goals. Short term dream goals were things I could not do at all when I wrote them down, but really wanted to be able to do. In writing them, I knew it was a possibility I might not be able to do them, but they would be more possible than my Long Term Dream Goal. And finally, I wrote baby step items under the short term dream goals. Baby steps are things to work on each day to get to my short term goal. Baby steps are not necessary always building blocks leading up to the end goal, but may be something that helps me get there. I promised myself that no matter how bad I felt, I would pick one baby step from one of the goals and do it every day. My choice was "Go up and down the stairs twice a day." And if I did that, I could feel quite accomplished for the day!

My Short Term Dream Goals and Baby Steps (an * means completed as of today, June 5th) 

STDG: Walk Around the Lake (neighborhood pond) Regularly
-Stand up while reading, watching tv, on computer, doing laundry*
-Up & Down Stairs 2 times a day* (Stopped counting at 20 times)
-Stretch daily*
-Mini-exercise bike in front of tv or while doing a puzzle *
-Walk laps around back yard*
-Walk to 1st bench near lake*
-Walk to 2nd bench*
-Walk around lake* (have done this 3 times since May 27th)
-Pilates DVD: Abs* Arms/Shoulders* Buns/Thighs (currently every day)
-Recumbent Exercise bike* (I started at 5 minutes and currently up to 20 minutes! 4-5 times a week)
-Walk to friend's house

STDG:  Drive Regularly
-Drive once around the block*
-Drive around neighborhood*
-Drive to a neighborhood park*
-Drive on 45mph road for a few seconds*
-Drive on 45mph road for a few minutes* (As of June 23rd,longest distance driven: 7.0miles!)
-Drive to store in the next village over* Completed June 23rd
-Drive to store in neighborhood and shop* Completed June 23rd
-Drive to distance store and shop
-Drive to Whole Foods and do whole shopping list alone

STDG: Cook Every Meal*
-Gather easy & healthy recipes for crock pot*
-Gather non-crock pot healthy recipes*
-Stop relying on take out for every meal & eat healthy foods*
-Increase veggie and water intake* (Found I love peppers in this order: red, yellow, orange, green.)
-Cook one meal a week* 
 -Move up to increasing # meals cooked per week* (With exception of some weekend meals, I currently cook every meal every day from scratch!) 

STDG: Laundry*
-Sort laundry more often.*
-Do laundry once. *
-Do laundry every two weeks.* (Currently, do whenever needed.)
-Do linens every three weeks.* (Currently, do whenever needed.)

STDG: Get Out with George on Weekends
-A store.* June 13th
-A restaurant.*June 8th
-A local park.* June 15th
-Botanic Gardens* June 2nd
-Planetarium
-Field Museum
-Museum of Science & Industry
-Brookfield Zoo* May 13th
-Do any of the last 5 only partly with wheelchair.
-Do all of the last 5 without a wheelchair.

STDG: Oranization
-I won't list all the things I want/need to organize. But so far, I have done the DVDs, nightstands, medicine storage area, three food cabinets, the freezer and the fridge. Currently I am in the middle of organizing a closet I threw everything into for when our cleaning ladies came the first time in April.

STDG: See a Local Friend about Once a Week
-Text Regularly*
-Call once a week
-Have over about once a week (Been successful three times.)
-Go to her house.
-Go out and do something fun together.

I must note, that thankfully, my body has also cooperated. My CDH and Migraines are significantly down in frequency and intensity. I have changed some things to my protocol that probably made this happen. I could not have done this with pure determination. I could not have done this just because I wanted it to. It just so happens that my body was improving and allowed me to push it a little farther every day.

There were days when I pushed too far, and then the next day I spent "paying for it" on the couch or in bed. It was so frustrating wondering where my limitations were and how far I could push without "over-doing" it, which is so easy for those of us with chronic illness to do. I learned early on that RESTING was just as important as doing.

At first, I felt like I was not making any progress, but George would remind me what I used to be doing...how I used to be in bed or on the couch. How I couldn't even walk up and down the stairs without a struggle and support. Keeping a log of what I do on a daily basis has helped me see how far I have come.

I am really thrilled each day.  I have been wanting to share this with you all how much improvement I have made and how well I am doing. I hadn't yet because the computer takes me away too long from taking care of myself. But, now I am so glad I took the time. I know so many people have been praying for and supporting me and I just wanted to say thank you for cheering me on.

June 24, 2012 update: On Long Term Dream Goal, waiting to hear back on date for Zoe and I to take our annual test to begin moving forward in becoming an animal assisted therapy team.

Sunday, June 3, 2012

The Devil of All Migraine Triggers: National Migraine Awareness Month #3

 AwarenessMonth2012BC2Today's Prompt: Just shoot me now! What's your worst Migraine trigger? Can you avoid it? How do you handle it?  

There is no hesitation here that my hormones are my worst Migraine trigger.

Can I avoid it? Well, nope. I'm a woman. It goes with the territory.

How do I handle it?  I take a low dose estrogen birth control pill continuously going as long as I can between periods. My longest is 5 months! Then I have a week of the devil of all Migraines, menstrual Migraines, that keep me flat and in bed for 7-9 days. (You can see why I don't want them every month). I use Frova twice a day for five days and Toradol injections for the unspeakably horrid cramping. Basically, I just try to get through it each day by staying in my dark room, keeping horizontal with distraction by computer, television, movie or book on tape. Emotionally I keep reminding myself that it will not last forever.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Saturday, June 2, 2012

Tea with an Influential Journalist: National Migraine Awareness Month #2



Today's prompt: If you could invite someone (any living person) to your home for tea for the purpose of explaining Migraine disease to them so they would truly understand it, who would it be and why? 

There are so many people I would want to do this with: family members of Migraine friends, celebrities, law-makers. However, my top choice would have to be an influential television journalist such as Diane Sawyer or Barbara Walters, both who have done influential television pieces on topics that people may not know about or understand. Barbara Walters did a piece on transgender individuals that gave wide-spread attention and understanding on a topic some circles may have seen as a "taboo" subject. That piece certainly enlightened me on something I thought I knew about but clearly did not.  Diane Sawyer recently did a powerful piece on Native American reservation and the atrocities that occur such as frequent suicide, 90% rate of alcoholism and the wide spread depression that has come over this group of individuals that live in our own country.

Unfortunately many people think they understand what Migraine disease is and so it is not something that tends to get attention by the media. But, I believe if I could speak with someone like Ms. Sawyer or Ms. Walters (with the support of other Migraine advocates), we could help either woman understand the misconceptions of Migraine, something people think they know about but do not really know about. After helping them truly understand Migraine disease, I believe seeing how many unique, exasperating and provocative stories of  millions of people who are affected by Migraine disease would be something a newscaster would see as a unique opportunity to share. Our story is a story untold that needs to be told.

In lighting a fire of passion of one of these influential journalists, I believe we could get more awareness, more exposure which would hopefully lead to education of their viewers and most vitally,  pressure on congressional leaders to make change for the better of us all.

Ms. Sawyer and Ms. Walters, you may take this as a formal invitation for tea at my home at your convenience. Though the tea cakes will have to be gluten free as it is one of my Migraine triggers!

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

Friday, June 1, 2012

My First Migraine: National Migraine Awareness Month #1

http://terirobert.typepad.com/.a/6a00d8341ce97953ef016305ae7f84970d-pi
My goal is to participate in a majority of the daily Migraine Awareness Blogging Challenge in June.

Today's prompt: Share the story of your first Migraine, what it was like, if you knew what it was, what you did, how you felt.

It was starting to get brisk towards the end of October in 2005. I was driving to Delacey Family Education Center where I was one of fourteen Speech Language Pathologists working with children with disabilities aged three to five years old. One of the special education classes I worked in was going on a field trip to the pumpkin farm that day and I was tagging along to do integrated language therapy.

Working in that old moldy DeLacey building for two years, by around May of 2005, I had started to have a daily headache whenever I would go into work. Then my head would improve when I left. I have had headaches my whole life though daily headaches was a new thing. In high school, I popped four to five advil at a time (*do not do this*) for my frequent headaches. 

But October 25, 2005 was different. I opted to drive myself rather than take the bus to the pumpkin farm. I was feeling woozy and nauseated as I interacted with the children. Toward the end of the time, I started to feel like I was going to vomit and I could not think straight. So, I drove back to the school to tell my boss was going home.

On the twenty minute drive home, I could barely make out the road. Vomit was gurgling in my throat, threatening to cover the steering wheel. I was not thinking clearly. Though it was cloudy, the bright skies were making me squint and every movement and sound seemed to pierce through me like shrapnel. I hastily dialed my fiance and then my mom but got voice mail for both. By the time I pulled into a parking space of my condo complex, I didn't think I would make it inside. I crawled up the stairs to the second floor, reaching up and fumbling to get the key in the lock. I crawled three feet to the bathroom and vomited.

I clearly remember laying weakly on the sea green plush pile bath rug and feeling the sharpest pain I had ever felt in my life inside my head. It was so painful that I could not believe that such physical pain was possible without it killing a person. I could not move, and I thought I was dying. I do not know how long I lay there.

The phone rang and I heard the voice of my fiance of just ten days, George, coming from the land line answering machine and I thought he was going to find me dead laying on that hideous sea green plush pile toilet-hugging bath rug.

I had no clue what was happening to me. I vaguely remember crawling into bed. The next day I made a futile attempt to return to work, only to leave early and barely making it back to my bed. George took me to immediate care that night.

That first Migraine did not abort. In the first two days, I was at the immediate care twice and emergency room once. My mom, who lives out of town and is a nurse, flew in to take care of me. By November 2nd, I was admitted to a hospital for dehydration as I wasn't eating drinking because I was so nauseated from the Migraine.

The neurologist that treated me in hospital and eventually outpatient was arrogant though obviously did not know what to do with me. I was under his care from November 2, 2005 to February 14, 2006 and I was given daily medication that gave my brain NO chance to abort the Migraine and only perpetuated it. Over those four months, that neurologist never said the word Migraine to me or mentioned that he thought that was what it was. However he wrote "Migraine" on my FMLA papers I asked him to fill out on February 14th, 2006. That same day, when George asked him what was wrong with me, the neurologist told George in front or me, "She has depression."

A Migraine that lasts more than 72 hours is called Status Migraine. By the time I had an appointment with a headache specialist in downtown Chicago on February 17, 2006 I was so bad off that the Migraine/headache specialist who admitted me to their inpatient care said he could not believe the poor and neglectful treatment I had received from the prior neurologist.

I cannot say when my first Migraine finally aborted because I was Status Migrainosus for a long time and my body had become non-responsive to medication.

I hope that what you will gather from my first Migraine experience is that what you do from the beginning (choosing a doctor, finding treatment, self-education, community support) can affect not only the progression of your Migraine, how your brain chemistry changes and how well you cope.


After my first Migraine experience:
-I wish I had not blindly trusted a doctor. Your gut instincts are usually the best.
-I wish I had investigated and read up on the medications I had been given and not simply taken them with blind trust they were the appropriate treatment and would not be harmful to my system.
-I wish I had listened to the nurse in the first immediate care I went to that told me I should seek out a specialist in the city and not a neurologist in the suburbs.
-I wish I had gotten online and educated myself by reading research articles, and going to trusted medical websites. (Migraine.com, Migraine at Health Central)
-I wish I had plugged into a positive, encouraging and educational support community earlier than I did.

I am thankful I have learned so much from that first experience and am in a much better place than I was then!

June is National Migraine Awareness Month. "National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com." There are so many activities to be involved in and you can read about the events in a comprehensive way at Somebody Heal Me: 2012 Migraine Awareness Month Events: Chats, Blog Prompts, Giveaways & Much More #NMAM. If you want to take part in the blogging challenge you can find them HERE.