Saturday, May 31, 2014

True Blackout Window Covering For #Migraines and Light Sensitivity

I must share this with all of you fellow migraineurs out there with light sensitivities. You may remember back in December when I posted about covering the windows in our new home. I wish I knew then what I know now...

My sister, who is a nurse and sometimes needs to sleep during the day, went in search of some blackout window shades and ended up stumbling upon a product called Blackout EZ Window Cover. She told me that it was easy, inexpensive and blocked out 100% of the light in her bedroom. With that kind of a recommendation I had to check it out. 

I decided to start with our master bedroom because that is the area we are going to decorate first. The company's website is quite helpful. They offer a couple standard sizes available for purchase at VERY reasonable prices - comparable in price to vinyl mini blinds. They also offer custom sizing if you have windows that are larger than the standard (as our windows are) for just a little more. They also have a video tutorial at the bottom of their homepage that shows you how to properly measure and install their product on different types of windows. 

After exploring the website and armed with a recommendation from my sister, I decided to go ahead and order. Here's how it worked:

I chose to install on a cloudy rainy day because working with an uncovered window in the middle of a sunny day is madness when you are as light sensitive as I am. Doing so made it easier on my eyes and my head but I'm afraid the poor light diminished the quality of the pictures. Bear with me.

This is one of the two identical windwos I covered
 The shades are installed with hook and loop tape (basically it is velcro but since velcro is a brand name this material is referred to as hook and loop). My delivery included everything I would need except scissors. That's right - no tools required.

The contents of the package that was delivered

 Step one: I cut and placed the white hook tape around the frame of my windows. It was literally as easy as placing it and removing the backing and pressing it on the window frame.

If you look close, you can see I simply removed the backing as I went along the window.

 Step two: I did the same thing with the black loop tape along the edge of the blackout material.

Like so

Step three: is as simple as holding the material up to the window frame and pressing it together.

The black out material got a little wrinkled as I moved it about but all the wrinkles fell out overnight.
My camera wouldn't take a picture in the pitch black it made our room so I peeled back the fabric to show you what kind of light blockage was achieved.


It worked exactly as advertised. Here is what I love about this product and why I highly recommend it to everyone of you out there:

1. It really does block out 100% of the light.
2. It is affordable.
3. Installation was quick and easy enough that I managed it alone despite having very little energy AND I didn't even crash after. 
4. The hook and loop tape allows me to easily remove part or all of the blackout material whenever I want and just as easily replace it again.
5. Because the product adheres directly to the window frame I can still hang ANY blind and/or drapery of my choosing. For the first time in the 8 years since my migraines went chronic I am going to choose drapes based solely on the aesthetic of the room, instead of decorating a room around the thick, heavy, dark, brown "blackout" curtains. Curtains that, even when hung floor to ceiling with wrap around rods, don't come close to providing a blackout. 

This great success I've had with this product is literally changing my life. Hubby and I now sleep in total darkness. I now have a totally dark place to retreat during my migraines no matter when it hits. I am now thrilled to be thinking about draperies as just another design element instead of as something to work around and make do with. I am feeling relieved and a little more free and it hasn't even been a week. 

*QUICK NOTE: There is an additional step if you purchase one of the standard sizes as the material will need to be cut to fit your exact window dimensions. I didn't have to do this because we ordered a custom size. My sister did use the standard and reported that the cutting was really easy as there is a grid pattern on the material that easily allows you to follow a straight line. 

Wednesday, May 28, 2014

Whimsy Wednesday

The good folks at CBS Sunday Morning did a story last weekend about Barry Gibb, which reminded me of this great remix of Stayin' Alive from the 90s. I love this version, it always lifts my spirits and makes me want to dance.

Have a great day!

Tuesday, May 27, 2014

The Lost Days

My to-do-list is long. Full of all kinds of regular cleaning tasks, periodic cleaning tasks, things that need to be organized or put away, things that need to be painted or repainted, rooms that need to be designed and decisions that need to be made. Anyone out there who lives with chronic pain knows that to-do-list never gets completed. The terrible days outnumber the not-too-bad days. Even on the days when I can function fairly well I have to be careful not to overdo it and lose my ability to function at all.

The world goes on without me when I'm having a terrible day. The weather is beautiful and people are gathering to enjoy outdoor concerts and festivals, BBQ and games. There are pressing matters that need my attention and fun that I wish you could participate in. BUT instead I find myself battling insurmountable pain, nausea, exhaustion and whatnot. As much as I want to tackle my list, be productive or enjoy the beautiful day, I am stuck inside, trying to distract myself from the pain, manage the nausea and avoid all the painful stimuli that surrounds me.

The day is lost and there is nothing I can do about it.

We are all given a finite but unknown number of days on this Earth. Like everyone else, I want to make the most of the days I'm given. Admittedly I am saddened and frustrated by the high number of lost days I've had and will have moving forward. I never have days when I feel good and can just do what I want and stay active all day anymore, but I do still have days when I can be productive despite the daily myriad of unpleasant symptoms that accompany my chronic migraines and fibromyalgia.

I work hard to stay as positive as I can, laugh as often as I can, moderate or modify my activities so I can do more, and be thankful for all that I can do and all the blessings I have been given. It is so easy to get caught up in the sadness and frustration of my limitations but it is counterproductive. The extra effort that goes into combating that is 100% worth it.

Thursday, May 22, 2014

The Whirlwind Doctor Appointment

After several months of struggling with what I'm convinced is a shampoo allergy I finally decided to go to a dermatologist. I did a bunch of research into the options around here and narrowed it down to a few docs, all of whom are NOT taking new patients. Ultimately I ended up with a random doc and crossed my fingers that she would be any good. I guess until you go, you never really know anyway.

She couldn't have been in a bigger hurry. She took a quick peek at my scalp and decided she knew exactly what was happening, wouldn't listen to my concerns about her fast diagnosis, gave me a prescription without asking about my insurance so she had to redo it to reflect a 3 month supply required by my mail-order pharmacy and was out the door before I could ask any questions.


In the car on the way home my head was still spinning from the whirlwind encounter with this doc and suddenly I was thinking about this scene from Looney Tunes where Sylvester was supposed to be looking after a little mouse and a neighborhood cat devises a plan to get the mouse by pretending to be a vacuum salesman. His quick in and out is a lot like how this appointment played out.

Luckily I found the clip on YouTube for you to enjoy:

Wednesday, May 21, 2014

Whimsy Wednesday

30 Rock is one of my favorite comedies. Here is a great scene for your enjoyment on this Wednesday.

Have a great day!

Tuesday, May 20, 2014

A Compelling Reason To Think About Things Differently

I just saw this TED Talk by Derek Sivers who makes a very short but compelling point.

This idea that whatever you think the opposite might also be true, really struck a cord with me. At the core it is just a simple observation and yet when you spotlight it so simply, beliefs and points of view seem much more subjective than they often feel as we go about our days.

I was really struck by the part about how some foreign doctors see it as their job to keep people healthy instead of just treating illness. Although, getting paid for healthy patients instead of sick ones seems a bit wrong as health and wellness are not always within the control of human beings. Plus no doctor can control the choices of any patient and so shouldn't be punished when they don't make good health decisions. That being said, it seems like the philosophy behind this kind of thinking would probably put the focus on doctor/patient partnerships and preventative care to a degree that you don't see around here. Obviously we are doing something wrong in this country since we spend way more on medical care but have worse outcomes.

Beyond the health debate, I'm feeling like there is a great lesson here about tolerance and the value of seeing things from another point of view. But mostly I like that it challenges the feeling that I often have of being odd or strange compared to societal norms. If the opposite is also true then I am perfectly normal and society is odd.

Monday, May 19, 2014

The May PFAM Blog Carnival Now Available

The May edition of the PFAM Blog Carnival is now available. The topic this month is all about coping with transitions. Check out all the great posts and maybe discover a blog you didn't know you should be following.

Thursday, May 15, 2014

5 Lessons I've Learned For Coping With Transitions

I feel like I've spent the last 8 years of my life in transition. I've transitioned from living alone to living with hubby; from being single to being married; from being an active healthy professional to being so debilitated by chronic migraines and fibromyalgia that I can't hold a job; from thinking about my chronic pain as something to solve to thinking about it as something to manage; from living in Minnesota, to North Carolina, to Virginia, to St. Louis (where we continued to move around locally); from living near dear friends to living far from anyone except hubby; from being a renter to a homeowner to a renter and back to homeowner again; from being a 20 something to a 30 something... There has been very little stability over these past 8 years.

Thankfully it does seem that this time of continuous change is winding down. Hubby has a great job that he is settling into so we've finally been able to buy a house that we fully intend to grow old in. After 8 years I've gotten better at living with my chronic pain. Settling into a more permanent location will only help me to better manage my pain in the future. I can finally look for good doctors without the stress of relocating and starting from scratch again and again and again. A tremendous relief has been setting in over the past few months as we settle into a more stable time.

Transitioning is stressful and difficult for most people but it is even more so for those of us living with chronic pain. Why? Well mainly because the essence of change runs contrary to optimal pain management. I need a routine of sleep, food, water, rest and pacing in order to function even at my lowest level. It is near impossible to maintain this much needed routine when making big transitions. But life is a series of changes - it is inescapable. Learning to cope through these big transitions in life is an important skill. Here are some lessons I've learned:

1. Don't allow yourself to spend too much time dwelling on what was left behind. As natural as it is to compare now to then, this doctor to the previous one, this new set of limitations to the old abilities, etc. I find that it prevents me from moving forward in the present. I give myself a little bit of time to think back and miss or mourn what was, but then I pull my focus back to the here and now. I look for the positive aspects of my present situation and try to keep that in the forefront of my thoughts as much as possible. Then I can set about changing the things that are within my control.

2. Take your time and be patient. Adjusting takes more time and requires more effort now that I'm dealing with chronic pain. It just does and that's okay. I find that when I'm patient with myself and don't allow myself to get caught up in comparing my time frame to that of a healthy person the process is smoother and more enjoyable. Eventually, a new routine will develop and things will normalize. It always does. Then it changes again. Such is life.

3. Lean on the people around you. I find that having love and support from my family and/or friends is never so critical as it is during big transitions. Being able to talk about the changes, be heard and get advice from trusted loved ones helps in so many ways. There is just something so elemental about love and friendship, I can't imagine where I would be without it.

4. Try to always keep something of comfort and consistency nearby to lend some level of normalcy to these big transitions. The consistency of walking, feeding and tending to our pets has made the past 8 years of constant big changes easier for me. I also find that watching old movies or shows that I've loved most of my life can lend a level of comfort and consistency when struggling through a difficult transition.

5. Find the fun and laugh. That's really good advice for every situation, isn't it? I find that my natural tendency is to take myself too seriously but everything is always easier when I take the time to find the fun and laugh, especially when I can do it with loved ones. It relieves tensions, reduces stress, pumps positive chemicals throughout the's like a reset button.

What do you do to cope through transitions?

Wednesday, May 14, 2014

Whimsy Wednesday

I wish I could get Gypsy to do yoga with me like this. Looks like fun.

Have a great day!

Tuesday, May 13, 2014

May Migraine Blog Carnival

The May Migraine & Headache Disorder Blog Carnival is now available. This month's topic is all about hope. Check out these great posts and learn about how you can participate in next month's carnival.

Friday, May 9, 2014

New Friendship Update

Not long ago I wrote about the potential for a friendship to develop with our new neighbors. Since then things have progressed and I wanted to quickly update all of you. Call it over zealous, call it silly, call it over sharing - whatever, it's probably all true.

You see, I haven't had a friend nearby since we left Minnesota at the end of 2006. Partly because we've been moving around so much but mostly because making new friends as an adult living with debilitating, frequently misunderstood chronic pain conditions is really hard. Honestly, I was beginning to believe it wouldn't happen unless or until I was able to get my migraines and fibromyalgia under better control. You can imagine how badly I want this.

Filled with excitement over the possibility, nerves about not messing things up, anxiety about building a friendship for the first time in a decade and with the awareness that hubby and I are maybe a little odd I keep imagining this will turn into a sitcom story-line. You know how it goes. The main character(s) meet somebody new and they hit it off right away but they end up trying too hard or being too weird and things fall apart for our amusement. Remember when Grace befriended Molly Shannon's character on Will and Grace? 

I guess this hasn't been a quick update. Let me get back to the point.

We continue to run into each other - exchanging misdelivered mail and getting drawn into long exchanges. The woman and I have been texting each other about paint colors and other small topics we discuss on our run-ins. We've talked about finding an evening to enjoy a firepit together but weather and my head has prevented that from happening yet. Then earlier this week they invited us over to meet their daughter, who has been studying abroad and just joined them. We put on our nice casual attire and walked over for what we promised ourselves would be a short visit. After two hours of great conversation and fun we headed home. 

Then came the analysis. Did we stay too long - or too late into the evening? Did we make a good impression? Do we think they really like us? Are we still thinking we can have a good friendship with these people? Let's say something so they know we didn't mean to overstay our welcome next time we chat...

The next day I got a nice great-to-see-you, thanks-for-coming-over text from her. So I went ahead and sent a thanks-we-had-a-great-time, hope-we-didn't-stay-too-long response. She replied with her own worry that they were not great hosts as they hadn't offered us anything to drink. 

I guess we're all a little nervous about making good impressions. What a relief. 

Wednesday, May 7, 2014

Whimsy Wednesday

I'm a big fan of Larry David in Curb Your Enthusiasm. Here is a funny clip poking fun at tipping.

Have a great day!

Tuesday, May 6, 2014

5 Things That Give Me Hope Despite Chronic Pain

Hope is one of those words that makes frequent appearances in inspirational quotes. I guess because it is essential. We all NEED some shred of hope to help us through dark times. My years of living with chronic migraines and fibromyalgia have certainly brought about many of those. It would be safe to say that I don't go much more than 24 hours without need of assistance from hope. Fortunately, a little of it goes a long way.

 Here are some of the hopes I cling to as I make my way through dark days.

1. I try to always have at least one project that I'm working on that gives me a sense of purpose. Even on days when I can't manage doing anything other than the most basic things like eating and going to the bathroom, I can think about my project and look forward to working on it when I'm able to function more. This blog is a great example of a project I'm always working on but I've also done things like create a photo sharing site for my family and I dabble in DIY gifts for Christmas.

2. I wake up each morning hoping that I won't have too much pain. Even if I'm having a great deal of pain, there is always hope that tomorrow won't be as bad. I live for the not-so-bad days because then I get some stuff done and feel a productive (well relatively so).

3. I still hope to better manage my symptoms so I can have more not-so-bad days. I know there is no cure for chronic migraines or fibromyalgia, nor is one likely to be one discovered in my lifetime but I still believe I can do better than I am doing now. I sure do hope so anyway.

4. I can still laugh and enjoy things. Maybe it sounds strange, but I feel like this is a very hopeful sign that I am not defeated. If I can still laugh and experience fun despite the hell I've been through in the past 8 years then I can probably keep doing it.

5. My husband gives me hope. His love and support has meant the world to me. He expresses appreciation for the things that I do around the house. Even though I wish I was healthy enough to be excellent at it, he makes me feel like I'm doing a great job and that he values my contributions to our home. Beyond that he sees my innate value. He loves me for who I am, despite all this chronic pain crap. Loving him and being loved by him gives me hope.

Monday, May 5, 2014

How Chronic #Migraines and #Fibromyalgia Changed This Morning Person

I was born a morning person. All my life I have been the first person awake and I'm talking the first by at least 2 hours, frequently more. When I was really young, I would get up and watch old sitcom reruns of Donna Reed, Mister Ed, The Patty Duke Show, I Love Lucy and Leave It To Beaver on Nick-At-Nite. Then I would play Super Mario Bros and get ready for school.

Sleep overs were always a double edged sword. It was all fun and games until I woke up at 3:00 or 4:00 am, a good 6 hours until anyone else would wake up. I was convinced that I was the only teenage girl in the world who couldn't sleep all day, certainly the only one among my peers. This made the mornings after quite boring and frustrating.

When I was older and living on my own I would often venture out to do my grocery shopping in the wee hours of the morning. I could get groceries, hit the laundry mat and clean my entire apartment before 10:00 am on a Saturday. Leaving me full of satisfaction and feeling ready to take on the world.

That's the thing about being a morning person. It is not just that my body naturally always woke up early, it's that there were psychological consequences (positive and negative) associated with what time I woke up. On the rare occasion that the sun rose before I did, I felt like I had already missed out on the day. Things were happening and I was going to miss them because I was sleeping. Doesn't sound like a big deal but it felt like it at the time. I liked being the first one up. I felt like I was able to get a jump on the day and have some time to just do whatever I wanted. Early mornings are quiet, peaceful and full of possibilities. Being awake during this time made me feel prepared, fresh and ready for whatever was to come.

Yep, I have a long and beautiful history with the early morning hours.

But something happened.

Years of living with chronic pain has taken a toll on my ability to enjoy this sacred morning time. I blame it on the accumulative nature of my chronic migraines, fibromyalgia, pills, fatigue, poor sleep quality and difficulty falling and staying asleep. It took years of this crap to change what was both a natural function of my body and a deeply ingrained, beloved habit. But change it did, slowly over time. Unfortunately, after 8 years there is no trace of the woman who used to wake up and be propelled out of the warm, comforting embrace of bed by the excitement of tackling the tasks of the day. Instead, I wake up sore literally from the the tip of my toes to the tip of the hairs on my head and every spot between, as though I had just spent the hour prior to waking running one of those American Ninja Warrior courses. In addition to the daily pain and soreness that greet me each morning, I also wake groggy and tired as though I had been awake all night and only just fallen asleep 45 minutes ago.

Waking up feeling rested and refreshed is now just a distant memory. I'm still a very disciplined person and so I manage to get myself moving every morning despite serious urges to the contrary. I feel like it is important for me - for this early morning soul that I'm certain still resides deep inside me - even if getting up and getting some food and pills is the only thing I can manage before laying back down.

Let's just add this to the long list of major life changes that chronic pain has brought about.

Thursday, May 1, 2014

Why I Don't Carry Advertisements On My Blog

To monetize or not to monetize - that has been the question for the past couple years. Every so often I ask myself if I want to start showing ads or if I want to promote pain products/services on this blog. As you can see, the answer I keep coming up with is no. 

Here's the thing. I have very specific intentions about what I want this space to be and what I don't want this space to be. I am an educated woman whose entire life has been seriously affected by chronic migraines and fibromyalgia. I am blogging to share my journey, the ups and downs, the lessons and the struggles, the ugliness and the beauty of it all. 

Being completely open and honest about all of this has been very important to me from day one. This is why I don't allow any of my friends and family (except one cousin who is also dealing with chronic migraines) to look at my blog. I know myself well enough to know that I would edit myself if I knew they were all reading. This is also partly why I don't have my full name attached to my blog.

I take this honesty thing seriously - in my life in general and here in this blog. I want all my readers to be able to trust me and everything on my blog, Twitter, Facebook and Google+ pages. So when I receive requests from companies to try their products and blog about it, I always take a long hard look at them. What I've found is that they have ALL turned out to be snake oil. Either they contain ingredients that are common migraine triggers, or they will make false claims about curing migraines or fibromyalgia, or they try to pretend like they are not companies but individuals who are also suffering like me (gosh this one really makes me mad), or they are super secretive about what is actually in their products. 

I have no philosophical issue with promoting products and/or services that are beneficial for those of us suffering with migraines or fibromyalgia. In fact I do so from time to time, informally. The trouble is that I've never found a migraine or fibro specific product that I felt was worth promoting and I refuse to put anything on my blog that I don't believe in and/or exploits the vulnerability of those of us who are battling this every day. Whenever I talk about products or services on this blog, it is always stuff for the general public but happens to provide comfort, entertainment, or have some other relevant benefit to life with chronic pain. 

My continual decision to not have ads on my blog is related but slightly different. Whenever I revisit this question I consider the same 3 issues. 
1. Can I find ads that are relevant to my content and/or truly loved by me?
2. What kind of time commitment is involved?
3. Will it distract from the intention of my blog and/or annoy my readers?

As a reader of many blogs I am often turned off by ads, especially pop-up ads that require me to click on a tiny X to get to my content. I don't mind them so much when looking at lifestyle blogs or when they are relevant to the health related blogs I read. But, sometimes the ads just take over and it is hard to tell the difference between the ads and the trust worthy content. I simply don't want that for my readers. I also never want to be put in a position where I am pressured to be supportive of a company because they advertise on my page. Plus, I don't want managing ads to become a distraction from living life or blogging. I have such limited energy to begin with.

All of that being said, I can think of only one company I would like to advertise on my blog: Netflix. I'm a huge fan - have been for years. I believe in the company and honestly think that their services have been of great benefit to me as I struggle with all this chronic pain crap. I've sung their praises over and over on my blog and would be comfortable carrying their ad. 

I don't know if this will change over time or not but for now this is where I stand. I would love to hear what you readers think about ads and product promotion on blogs.