My First Cyborg-iversary

© 2010 Jamie Valendy.

One year ago, today, I had a neurostimulator permanently implanted. My family and I had such high hopes that the stimulator would be the answer to our prayers - to help me better control my chronic migraines... leading to a more 'normal' life. Unfortunately, the stimulator hasn't helped as much as we'd all hoped for and expected (including my doctor).

I don't regret having it implanted, but I wish it provided more relief than it has. When I had my stimulator trial (a few months before the permanent implant), I was able to do a lot of things that I couldn't do before (including eating / drinking trigger foods / drinks, spending time outside in the sunlight without wearing sunglasses, etc...). I haven't really been able to do much of those things, since then. We're not sure why it seems less effective, now that I have the permanent one - it even baffles my doctor.

I think the stimulator has made my 'good' days better, even if it may or may not have decreased the intensity / duration / frequency of my migraines. Just the simple fact that it's made my 'good' days better makes it worth keeping. So, I'm definitely not ready to give up on the stimulator. My doctor and I will keep adjusting things and trying to get it to work as well as possible for me.

My experience with the stimulator has also given me some great opportunities to come into contact with some great individuals - sharing with them a possible way to help treat their chronic migraines. It's been great to be able to share my experience with others, and to make some great friends along the way.

Thankful for Friendship

Willow Tree "Forget-Me-Not"
Holding thoughts of you closely -
she represents timeless friendship
and love that spans any distance.

Yesterday, I received a gift from a dear friend that I met through the online chronic Migraine community. She's one of the sweetest, strongest, and most loving people I've ever known. Since the first time I came across her blog (almost a year ago), I've felt a strange bond with her... though our journeys are different, we understand each other in a special way. And, it's been my pleasure to get to know her more, and to communicate with one another through emails, texts, etc... perhaps, one day, our paths will cross and we'll have a chance to meet. I cherish this beautiful friendship, and I'm thankful for the heartfelt gift

It has reminded me that I still have friends out there that care... these friendships may not look like previous friendships I've had (especially since I haven't met most of these wonderful ladies), but I feel much closer to many of them than I do to some people I've known for years (and in person). There's nothing better than knowing that there's someone else out there that cares for you... someone that keeps you in their thoughts, their prayers, their heart. I'm so blessed!

"Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up. Also, if two lie down together, they will keep warm. But how can one keep warm alone? Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken." (Ecclesiastes 4:9-12)

The Gift of Uncertainty

The Gift of Uncertainty

I've written about the difficulty of not knowing, but I'm trying to view uncertainty as more of a gift than a curse. As I was searching for an image for my previous blog post, I came across a website that included a great article, "The Gift of Uncertainty," by Preston Parrish.

One of the many things it addressed is why God doesn't reveal His master plan to us... why He only reveals life one step at a time. Simply put, "we can trust God and His plans for our lives; He just can't always trust us!" We are very impatient beings. If we knew the grand plan upfront, what would keep us from doing things prematurely? On the other hand, we are lazy beings... we may drag our heals and procrastinate on taking the next step in God's plan because it might be uncomfortable. But, there are other reasons that God doesn't reveal the whole plan to us upfront.

God wants to spend time with us. He's our loving Father, and He wants to be intimately involved in our lives... He wants us to get to know Him, as He knows us. If He were to lay out the whole plan upfront, we would have no need to return to Him for guidance... no need to build a relationship with Him. By laying things out step-by-step, He offers us the opportunity to have an intimate relationship with Him. He wants to walk through life with us, not just hand us a map and step out of our lives.

I'm still trying to really let go of the fact that God is never going to give me the whole plan at once... or even a chunk of the plan. It's difficult to do. But, I believe that letting go of that can open me up to truly embrace my interactions with Him, the security of having such a loving God, and the mystery of His presence in my life. Releasing the desire to have the whole plan will allow me to focus on spending time with my loving Father... to build a closer relationship with Him... to "be still, and know that I am God" (Psalm 46:10).

There's a great part of the article, where the author writes about taking up a hobby (that he was horrible at), just so he could spend time with his Dad. He writes, "The whole point was to be with him; that was it! There was no other agenda... And sometimes, I think that might be the whole point of the water hazards and the sand traps that we have to go through. Sometimes I think that that might be the point of all the things that we have to lose in life along the way. Sometimes I think that the whole point is just to spend time with our Dad!" I love that! He wants us to spend precious time with Him. But, He's not going to just leave us without any direction...

The Father, Son, and Holy Spirit work together to guide our steps, direct our paths, and help us avoid the obstacles of life... to bring us safely home. Ultimately, it's really all about living our best life here on earth and getting to Heaven to be with our Father. God may not have given us the whole plan, but he did give us a map and a destination... "Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me" (John 14:6). So, we are called to seek and follow God's instruction, and then continue to do the last thing He told us to do, until we receive His next instruction. "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight" (Proverbs 3:5-6).

Image by vintageteaparty

All of this speaks to me, reminding me that I've been struggling so hard against the uncertainty, while I should be allowing God to grow patience (among many other lessons) during this season of my life. I must remember, above all, that I can trust Him... He is in control!

"Uncertainty is a quality to be cherished, therefore – if not for it, who would dare to undertake anything?" - Auguste de Villiers de L'Isle-Adam

"The quest for certainty blocks the search for meaning. Uncertainty is the very condition to impel man to unfold his powers." - Erich Fromm

"Embrace relational uncertainty. It's called romance. Embrace spiritual uncertainty. It's called mystery. Embrace occupational uncertainty. It's called destiny. Embrace emotional uncertainty. It's called joy. Embrace intellectual uncertainty. It's called revelation." - Mark Batterson, In a Pit with a Lion on a Snowy Day: How to Survive and Thrive When Opportunity Roars

Not Knowing

For me, one of the most difficult aspects of living with chronic pain is simply not knowing. Not knowing when my headache will get worse. Not knowing whether my medications will help this time. Not knowing if I'll be able to attend an event. Not knowing how the pain will affect my life from day to day.

Unfortunately, I don't think that dealing with the uncertainty is going to improve or even get easier with time. Even in "good" times, when my migraines aren't completely out of control, it can be difficult to enjoy myself because there's always that little voice in my mind wondering when things will be bad again... when the next migraine will knock me down.

Right now, I'm trying to face this uncertainty in my life. I've been pacing myself, in order to make it through and actually enjoy the holidays. Besides the weekly migraine due to weather changes, I felt like I was actually doing alright (now that I think about it, though, I'd deal with a couple days of migraine pain, and then have to deal with the migraine "hangover"... just in time to start the prodrome of the next big one). Anyway, I was doing relatively well, but then I had a huge crash late in the day on Thanksgiving.

When this migraine hit, it hit HARD... perhaps some of the worst pain I can remember. But, the pain just kept going... and going... and going. I called my doctor, and he had me take a course of a corticosteroid, but I don't think it really did a whole lot. I took my normal migraine med (a narcotic painkiller) late last week (around day 10 of the migraine), and I was able to get out of the house a very little bit (you know, groceries and visit a little with family). These outings exhausted me, but I was going crazy being stuck inside the apartment.

The pain has eased up some, so it's not constant unbearable pain... but, I've been on a roller coaster ride (just at or below migraine-level... to well-above migraine-level) this past week. The pain would start to get a little better, giving me this (false) sense of hope that the migraine was finally breaking. But, even later that same day, the migraine pain returns full-force, and I wonder if / how long it's going to stay around this time. It's scary.

Each night, I say my prayers and (finally) get to sleep... hoping that the pain will be at a bearable level the following day. And, at least lately, I find myself disappointed, when I wake up to bad pain. It's frustrating and discouraging.

A bit of a tangent... The mind is so fascinating to me. Somehow, it "forgets" some of the most painful things we've encountered in our past. Our memories of bad times sometimes seem muddled, perhaps in an attempt by the mind to protect itself... by graying over the memories of how bad the pain was, how long it lasted, how much it affected us. And, yet, there's enough memory for our minds to worry about when the pain will return, when the pain will dissipate, how it will affect us.

Thanksgiving was over 2 weeks ago, and Christmas is in 2 weeks. I want so badly to be able to enjoy the holidays and spend time with my family. I'm trying to take things easy now, so that hopefully I can better manage my migraine pain through the holidays.

"Uncertainty is the only certainty there is, and knowing how to live with insecurity is the only security." - John Allen Paulos

"Uncertainty is the refufe of hope." - Henri Frederic Amiel

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight" (Proverbs 3:5-6)

Holiday Wishes

What are you wishing for this holiday season? I've found that living with chronic illness can change what's on your list of holiday wishes. Most of the things I'm wishing for are things that simply cannot be bought (I have some other stuff on my wish list, but I'm going to focus more on the things that cannot be purchased):

DIRECTION. I wish to have more direction in my life. I feel lost in a vicious cycle of pain. I'm not quite sure what I'm supposed to be doing. I don't know what God is calling me to do in the midst of these trials.

HEALTH. I wish to have my health better under control. Ultimately, I'd want my health back... no chronic migraines, no back and neck pain, no stomach problems... But, realistically, I'd just like to find ways to better manage these health issues.

COURAGE. I wish to have the strength and courage to keep going, even when things are bad... such as, when my pain levels are very high and it seems like the pain will never end. I want to have the courage to continually face my trials.

I've been BLESSED with so much already. I have a beyond-wonderful husband and family. I have a roof over my head, food on the table, and clothing on my back. I have a merciful God that loves me unconditionally. What more could I really ask for?!

This post was written for the December 12, 2011 edition of the ChronicBabe Blog Carnival.

Reducing Holiday-Related Migraine Triggers

The theme for the December 2011 Headache & Migraine Disease Blog Carnival is: "Reducing Holiday-Related Migraine Triggers: Share your best advice, tips, and tricks for minimizing triggers while still fully enjoying the holiday season."

I've been wanting to write about holidays and migraines, so this gives me a great opportunity to share and to learn some tips from others. There's a great post that I think approaches this topic so well - Surviving the Holidays: Give yourself the G.I.F.T. of a stress-free holiday - Guilt must go. Importance rules. Family matters. Think ahead.

Since my main challenge is dealing with chronic migraines, I'd like to write about the holiday season... how there are a million different triggers that can present themselves... all in just a matter of weeks... and all wrapped in tinsel and twinkling lights.

First, let's take a look at 3 triggers that we have the ability to manage / control:  food, sleep, and stress.

FOOD
The holidays often involve get-togethers and parties, many of which will have foods / drinks that might be migraine triggers. Sometimes, you simply don't know what ingredients were used to prepare the foods provided at the event. Though there is no universal list of migraine triggers, there are foods / drinks that have been found to be common food triggers.

Tips: Try to keep your eating schedule - eat small meals throughout the day, make sure not to go too long without eating (don't skip meals). Eat around the same time each day, and keep your food portions consistent. Going all day with little to eat and then splurging at an evening dinner can trigger a migraine. And, if you're going to a party or dinner, offer to bring a dish... at least then you know that you'll be able to eat at least one thing there.

SLEEP
Just as holiday events can affect your eating schedule, it can also lead to disruption in one's sleep routine / pattern. We may find ourselves staying up later, sleeping in later, napping, etc...

Tips: Try to keep your sleep pattern - go to bed and get up at the same time each day, and refrain from naps.

STRESS
The holiday season increases stress for everyone, regardless of whether someone has a chronic illness or not. But, for those living with chronic pain, there is stress in: not knowing whether or not you'll be able to keep plans with others, missing out on special events, being around crowds of people, spending precious energy and money on gifts, etc. While stress may not be a migraine trigger, it certainly renders the individual more susceptible to his / her triggers... so, it's important to try to reduce stress levels.

Tips: Begin holiday planning and preparation a month or two in advance. That way, you can get a little done each week, and you'll still be "on schedule," if you end up having some bad days. Set aside time for yourself - take frequent breaks and retreat to a cool, dark, quiet room as you need to. It's also important to monitor how you're feeling, and take care of yourself.

Now, let's take a look at 3 triggers that we have a lower (or no) ability to control:  environment, travel, and weather.

ENVIRONMENT
There are some environmental factors that simply cannot be controlled (see WEATHER, below). But, the holidays introduce another set of environments that we often have very little control over. Stores have fluorescent lights, different smells, a lot of people, etc... Holiday parties / events have smells, noise, lights, foods, drinks, crowds... a lot that we can't really control. Often there is no way to escape these triggers or the migraines that they generate.

Tips: If you're going to a party or dinner at someone else's house, offer to bring a dish. If you know the person well enough, perhaps you can ask them if there's a cool, dark, quiet room that you could escape to, if you need to. You may also ask him / her to not burn candles that may be a trigger for you.

TRAVEL
Traveling to other cities / states to visit with family and friends is common around the holidays, but it can lead to increase in migraines. Holiday travel can disrupt our eating and sleeping habits, and raise our stress-levels.

Tips: The holiday season comes with short tempers / fuses and long lines. Keep in mind that everything will take more time during the holiday season, so pace yourself. If you find yourself traveling during the holidays:
Car travel - stay hydrated, keep your regular sleep and eating schedules, take frequent rest stops to get out and stretch.
Air travel - stay hydrated, keep your regular sleep and eating schedules, and take your headache medicine as a preventive (if air travel is a problem for your migraines).

WEATHER
Changes in weather can also trigger some people's migraines - possible weather change triggers include: changes in temperature, changes in barometric pressure, storm systems, humidity.

Tips: Sometimes, by knowing when there are weather changes coming, you can take your abortive medication and prevent the migraine altogether. Also, by getting or keeping other triggers under control (such as sleep, food, etc...), the weather changes may impact your migraine levels less.

THE PERFECT STORM
The holidays tend to be a perfect storm of triggers: food, sleep, stress, environment, travel, weather, and so on. Even though migraine triggers aren't the same for everyone, the holiday season tends to bring on a multitude of different triggers that can wreak havoc with many Migraineurs.


Tips: Try to control the triggers that you're able to. Determine what's most important for you and your family, and let the other things melt away. Be patient, pace yourself, and go with the flow.

Ultimately, remember that the holidays are not about the parties and the gifts. It's about celebrating the birth of our Lord, with our family and friends. We shouldn't feel guilty, if we can't muster up the energy to meet the expectations we have of the "ideal holiday scene." Living with a chronic illness places limits on what and how much we can do, and we must stop being so hard on ourselves for listening to and taking care of our bodies. Be patient, pace yourself, and go with the flow.