I Won't Be Moving To Alaska

Last week TLC ran a mini-marathon of one of those home buying shows called Buying Alaska. Having never seen it before I went ahead and recorded the 8 episodes. To my surprise I actually learned a lot about life in Alaska from watching what was basically House Hunters in Alaska.

The big take away, Alaska is not a place I ever want to go. Some 30% of the "homes" have out-houses instead of bathrooms. During the summer they get 23 hours a day of sunlight. Many live without running water. You basically have to have a gun because the wildlife (bears and such) come right up to the houses. Food costs more because everything has to be shipped (except if you want to kill your own meat). It's super cold and snowy. Much of the state is only accessible by plane or boat.

A large part of the state seems to have been frozen in a time before bathrooms, electricity, running water, cable and such. Can't imagine living in a place like that. What was so interesting is that the people on the show truly loved it. They all hunt and/or fish. Some had their own planes to get around with. The whole out-house situation didn't bother them. To be fair a couple of the women were not crazy about the idea but they still bought places without bathrooms. Can you imagine running outside in the middle of the winter to do your business - in Alaska? They are indeed a hearty breed of people.

I've never been hearty, even before all this chronic pain, so it's hard to relate to people who enjoy living so remotely. At the same time, I admire them. They have skills and knowledge that I will likely never have. If something happened to the city water supply that we use I would be lost. Same thing with the sewer and electrical systems. This kind of living provides them with a connection to the natural world and themselves that is enviable. Even though I may never relate to these people there is a part of me that connects with the relative simplicity of their lifestyle.

Whimsy Wednesday

I can hardly wait for SNL to start running new episodes. In the meantime there are plenty of great old sketches to keep me entertained. Here is one of them:

Have a great day!

Phobias and #Migraines

Phobia is a common word and everyone knows that a phobia is an intense irrational fear of something. Personally I have a pretty severe case of arachnophobia, a fear of spiders. Okay, so we're all on the same page here, right? Phobia = Fear.

That being said, maybe you can understand why it bugs me to no end that phobia is used to describe the many sensitivities experienced during a migraine. Photophobia being a sensitivity to light, phonophobia being a sensitivity to sound and osmophobia being a sensitivity to smells. I object to these technical terms because I am not afraid on light, sound or smell. The experience of these sensitivities is so different than the experience of a phobia that just hearing the word used in association is unsettling. 

Obviously, doctors and patients understand what these terms mean and are not confusing them with fear. But that does nothing to stop it from bugging me. I want the term to fit the experience. Aren't migraines and migraineurs misunderstood enough? Do we really need a term like phobia (understood as an irrational fear) being used to describe our very real, very common symptoms, which have nothing to do with fear? It just feels a bit dismissive and very inaccurate.

I don't expect my disapproval to bring about any change on this matter. I don't even imagine there are many who are bothered by it all. This is simply how I feel. 

Running Out Of Patience

We've been waiting patiently for 4 weeks now. As anxious as we are for the house build to begin, permits from the city to do so are an absolute must have beforehand. We were told by the builders that it would take 2 to 4 weeks probably closer to 4 because the city has been slower than usual due to lots of storm damage from the spring. Ever since that day we counted on that time frame, looking forward to that call from the builder saying they could finally break ground.

Okay, in hindsight we probably shouldn't have counted so heavily on their time estimate because they have absolutely no control over it. The city has our applications and whenever they get around to it is when they get around to it. We are not privy to any information about how far behind they are, or how understaffed they are, or how many people are on vacation, or any other possible contributing factors. There is nobody to complain to, nobody who can help speed things up.

Even though this has been the reality of the situation for the past 4 weeks and 3 days, our faith in that time estimate lead to some big time disappointment when that 4 week mark came and went. Gone is that wonderful patience I felt. I'm still looking forward to that call but feeling a little like this may have all been a dream.

Now I just look longingly at the pictures we have of our lot, trying to imagine the house that is to come, at some unknown time in the future. It's driving me crazy. I need things to start moving forward here.

Food Rut

We've gotten in a bit of a food rut around here. Seems like I'm making the same 4 meals every week. I love that so many of my dishes allow for left overs but the flip side of that is those dishes get played quicker because we have them twice a week instead of just once. I have other dishes in my repertoire and,while I like them, they are ones that I get sick of easily. After a couple weeks of not making these they are out of sight and out of mind. Before I know it, we're in a rut.

These ruts are actually a bit of a blessing because whenever we get in one I pick up my cookbooks and start reviewing my food pins on Pinterest in search of new dishes. I'll find 3 or 4 dishes that are good possabilities to try out and, if all goes well, I'll have 1 or 2 that work out enough that I can adjust them into something we both like.

The whole process is tricky because hubby and I are both kinda picky eaters. Neither of us eat meat. We don't like anything pickled or fermented. I can't handle the texture of tofu. Hubby doesn't like tomatoes and he won't eat anything with onions in it. I have yet to meet a recipe that hasn't required adjustments to make it work. I adjust not only to meet our weird food issues but also because so many vegetarian recipes are not hearty enough to be full meals, at least the tofu free recipes are that way. I add some things, I take some things out, and soon the recipe is mine and it's much better than anything published.

So here I go. Diving into the cookbooks in search of the next food gem to add to my repertoire. Wish me luck.

Whimsy Wednesday

Classic Michael Jackson to make you smile and get you snapping your fingers.

Have a great day!

One Less Trigger

Reasonable. That's the best descriptor I can think of for this summer. Considering the St Louis area is normally really hot and humid all summer long, this year's lengthy stretches of temps in the 70s and 80s with low humidity have been wonderful. We've still had plenty of ugly traditional summer days but we've also had plenty of really nice days. It's almost like a Minnesota summer.

These reasonable summer temps translate into one less thing that triggers my migraines. Instead of the daily suffocation by the thickness of the air, I've had entire weeks of dog walking and errand running free from this particular trigger. Woo-hoo!

I know this is an anomaly and will likely not happen again for a very long time so I'm being careful to truly appreciate every reasonable day that comes along. With a little luck, this winter will also be reasonable. I don't mean to push my luck but to say I'm not hoping would be a lie. 

The Awful Anatomy of a Long Migraine

My chronic migraines, while unpredictable day to day, do follow a bit of a pattern. Usually I'll have 1 to 3 days in a row with migraine pain and then have a day or two off before it returns. Every so often, I'll have a long stretch of migraines lasting anywhere from 7 to 15 days. This is a whole different beast from the usual pattern. Here's how it goes.

The first 3 days are hard the way all migraines are hard. They are filled with all the usual symptoms; pain, nausea, sensitivities, fatigue, irritability, sleep trouble and brain fog. It sucks but I'm confident that a better day is just around the corner. This is my "normal", as horrible as that is to say.

Day 4, 5 and 6 are harder. During this time the symptoms are compounding. I can't be sure that the symptoms actually get worse or if they just seem to due to my reduced ability to cope with them. One thing is for sure, without that respite of at least one day with less pain, ALL the migraine symptoms feel worse. During this time I start to suspect that I'm headed into a long migraine and that will begin to inform how I take my rescue medications.

Now on day 7, I will finally acknowledge the fact that I'm in the middle of a long migraine. I don't know how long it will go on but I am confident that it will end. After all they have always eventually come to an end. During this time I'm in full conservation mode with my medications. This will continue through days 8 and 9.

Day 10 is always a big turning point. I mean that in the worst possible way. This is the day that shatters my confidence that the long migraine will end. The day when all the pain and other symptoms overwhelm me. I find myself feeling defeated and full of fear. Fear that it won't end, that I won't be able to cope with it, or that the something has gone terribly wrong and I'm dying. From here on out the migraine is torture. I don't say that lightly. I actually feel like my body is torturing me.

Long migraines are horrible and they seriously complicate the usual protocol for my rescue medications. I'm allowed to treat only 9 migraines a month so deciding which ones to treat is tricky business. Normally I'm left guessing the severity and length of any given migraine. There is no way to tell for sure but after 7 years of practice I've managed to at least get better. Still I'm wrong frequently and, as you all know, if you don't take the meds soon enough you greatly reduce its efficacy. During these long stretches, it is almost impossible to tell if it is just one long migraine or if the migraine has just been retriggered. This makes deciding when to take a rescue med a complete crap shoot. The stakes are so high because you don't want to waste even one of your precious rescue meds. What an awful feeling.

Equally as awful is just hunkering in and suffering through the pain from the moment you wake up until the moment you finally get to sleep (ah, the precious escape that is sleep). Doing that for even one day is hard but having to do it for several days in a row, well, it is simply awful.

Social Media and Chronic Pain

For a woman with chronic pain, who wishes to be involved in the greater pain community (like me), social media is a great tool. I've been a little slow to adopt these tools, probably because of my age, but I'm so glad that I did.

Between Facebook, Twitter, Google Plus, BlogHer and Blogger I've been able to connect with so many amazing people. On some level I'm comforted just by knowing that there are other people out there going through the same things I am. Mostly, I just love the sense of community and all the support. I love learning about the different ways people handle and manage their symptoms. I find myself continually inspired by their stories and their courage in facing the immense challenges of chronic pain. 

Reaching out and connecting with others from around the world from the comfort of my couch wouldn't be possible without all these social media outlets. Today, only a few short years since dipping my toes into the world of social media, I can't imagine my life without it. Now if I can only manage to keep up with the latest and greatest changes. 

Whimsy Wednesday

This clip is of a round table discussion about Seinfeld between Larry David and the stars. If you're a Seinfeld fan you will love it.

Have a great day!

August Migraine Blog Carnival

The August Migraine Blog Carnival is now available. This month's topic is Suicide and Migraines. Check out all the great submissions on this very important topic.

Bowling for #Migraines

I've always enjoyed bowling even though I've never been all that good at it. I'm the kind of bowler who gets an occasional strike or spare along with gutter balls. Frankly, I'm satisfied if my final score breaks 100. Despite all that, I keep doing it.

So what does this have to do with migraines? Well, I've come to learn that in many areas of the country bowling and smoking go hand in hand. Having grown up in a progressive, health conscious community, where smoking in public was banned when I was still very young, I was spoiled by being able to go anywhere. Needless to say, I've bowled a lot less since we left Minnesota.

We did find a bowling ally that is smoke free not too far from our current location. It is a very family friendly place with a restaurant, arcade and a really huge bowling area. In the two times I've been there, it's clear that family friendly means that they cater to kids. The music is tween music (Justin Bieber, Selena Gomez...) and it's played so loud you have to shout to communicate. Kids are all free range, running around all hopped up on sugar and shouting. Parties are celebrated with cosmic bowling. That's when they turn off the regular lights and replace them with strobes, fog, lasers and black lights. It's a migrainista's nightmare.

Having been given a gift card to this place, my husband and I decided to give it a second chance over the weekend. Having been through cosmic bowling hell before we called ahead to see when we could bowl and not have to worry about it. They said we would be safe between 3pm and 10pm for regular bowling. We went at 4pm and sure enough once we get going they announce it's time for cosmic bowl. Apparently they had a late birthday party and so they made an exception to their policy so they could still make the party money. We made a stink and they relocated us to a different part of the ally and only did the cosmic crap on the side with the party.

The whole thing just left such a bad taste in my mouth. As much as I want to bowl a game now and then I don't want to put up with the loud music, the cosmic bowling, smokers, or anything else for that matter. What happened to just bowling?

The final nail in the bowling coffin was the bill. It cost $40 for just my husband and I to bowl - $40! When did bowling get so expensive? In my head I think a regular bowling ally wouldn't be as expensive as this massive kid complex (the only smoke-free ally around here) but I don't know for sure. In addition to the money I also paid with a migraine and a fibro-flare in my bowling hand/arm.

Yep, I think I'm done with bowling. Just one more thing added to the list of things I don't do because of my chronic migraines and fibromyalgia.

The Vulnerability of #Chronic Pain

I feel an intense vulnerability because of how disabling my chronic migraines and fibromyalgia are. Back when I was able to work I felt a sense of control over my life. I was a hard worker and dedicated to my career and my clients. This allowed me to be confident that my career would continue to progress and that no matter what I would be fine. I felt independent and challenged.

When I stopped working I was certain it would be a temporary thing. I was going to figure out what caused my migraines to go chronic, fix it and then resume my professional life. Since then I've learned that it's not that simple AND I got an additional chronic pain diagnosis of fibromyalgia. As things stand right now, there is no fixing either condition. I do believe I can manage my symptoms better and will always strive to do so but there is no cure or even good treatment for either.

My life will likely never get back on the track it once was. I'm learning to be okay with that. I have learned to really love my role as a housewife and am embracing my domestic side. I feel so blessed to have such a wonderful husband who takes great care of our little family. That being said, I just can't escape feeling super vulnerable because I can't work.

Even though everything is okay right now, you never know when something awful is down the road. What if something happened to my husband and he couldn't work anymore? What if he got laid off? What if we lost our insurance. If I were working I wouldn't worry so much about these things because we would still have my income. Not having that earning potential is scary. There is no way around it. We need money to live. Even if I did magically get better I've been out of the work force for so long I don't know that I could resume my career. Who is going to want to hire someone with my health background. Not to mention we no longer live in the city where I have all kinds of great professional contacts and am familiar with the programs and laws. Would I be doomed to working minimum wage jobs? Would I ever have the earning potential I once had?

We're being responsible and doing what we can to ensure that I would be okay in case of a worst case scenario but I just can't shake that feeling that I'm more vulnerable than a paid worker to the vicissitudes of life. This vulnerability has given birth to all kinds of worry and fear. I try not to dwell on these things because we can't control everything in life. All we can do is take reasonable, responsible measures to safeguard ourselves. But in times like this, when big changes are happening, I have trouble not being a bit overwhelmed with those worries and fears.

Do you ever feel this way?

Whimsy Wednesday

Napoleon Dynamite may be one of the funniest movies ever. If you haven't seen it already, I highly recommend that you do. Enjoy this classic scene and have a great day.

Looking For Some Inspiration

I've been feeling rather uninspired for the past several days. I suspect it's due to an unfortunate combination of fatigue and thinking too much about the house build. Now usually I can find inspiration by checking out beautiful images on Pinterest.com or looking at lovely lifestyle blogs. After spending a couple hours doing that this morning, I've come to the realization that it's going to take more this time.

Maybe a trip to the art museum and a stroll through the antique mall will be enough. Gosh I hope so, as those are the only ideas I can come up.

What do you do when you are feeling uninspired?

Best Movies of All Time Part 1

Last month Entertainment Weekly came out with their list of the 100 greatest movies of all time. Reviewing the list, I found myself getting increasingly annoyed at many of the mentions and at many of the omissions.

Problem #1: Citizen Kane is ALWAYS listed as #1 best movie. Have you ever seen it? It's a terrible movie. The story isn't all that compelling, the storytelling isn't captivating and the characters do not draw you in. I barely made it through to the end, honestly only doing so because it's supposed to be the best. Now I do understand that it was innovative at the time it was made, but that is not enough to make it the best movie of all time. How can anyone say it's better than Schindler's List, Gangs of New York or Pan's Labyrinth? Heck, it's not even better than Clueless.

Problem #2: The vast majority of the films listed are really old. Don't get me wrong, I think there are plenty of great older films (Wuthering Heights, Jaws, It's a Wonderful Life, Gone With the Wind) but just because a film is old and was the first of it's kind, that does NOT make it one of the best of all time. Seems like no matter who compiles these best movie lists, movies get highly rated out of some elitist ideal of what makes a good movie. This particular list had only 24 films made since 1980. Clearly there is not much respect for modern film making.

Problem #3: I can't believe how many amazing films didn't even make the list. Okay, so this is probably all a matter of taste but to me a great film is one that makes you feel something, makes you think, makes an impact on you in some fashion. And I tend to believe you have to separate films into at least 3 genres in order to rank them: drama, comedy and family. What makes a great family film is so different from what makes a good drama, and the same goes for comedy.

All this frustration over this list leaves me with no other choice, I must make my own. I've already started to compile a list of movies I love as a nomination process. Unable to escape the feeling that I'm forgetting some great films I want to open it up and take nominations from all of you. What films do you think should be included as the best of all time?

Chronic Pain Made Me a Party Pooper

Party pooper: that's me. No matter the situation I always feel like I'm bringing people down, disappointing them or just being a big ol' bummer. 

Whenever people try to make small talk with me at a party they find themselves awkwardly trying to respond to my unexpected situation. Even those who already know my situation keep expecting me to be suddenly better and again have to fight through the awkwardness of not knowing what to do or say around me when they learn that I'm not better. 

When I get invited by friends or family to get together I can't respond with the traditional excited acceptance or disappointed explanation of prior commitments. I always want to see friends and family but I need to take a few moments to consider the timing, the environment and circumstances before I can accept or decline. I know that these hesitations makes it seem like I'm not interested but that's never the case. I just can't answer right away. 

Even if I am able to make the plans I can't guarantee that I'll be able to actually follow through. Even if I am able to follow through I can't guarantee I won't have to leave early. Even if I am able to stick it out I can't guarantee that my mind will cooperate with conversations or that I'll be able to fully participate in the festivities. I can't drink. I don't eat meat. I'm always nauseated. I'm always in pain. I have Migraine Resting Face. I can't take loud noises, bright lights, strong odors and extreme temperatures. I no longer have the energy for small talk or large crowds. 

Most disturbingly, those closest to me, who try their hardest to understand my limitations, still have to deal with the disappointment of wanting to go and do with me and me not feeling up to it. I traveled all the way to Wisconsin to visit with my mom just a couple weeks ago, but after that big trip I wasn't able to do much of anything but hang out. As much as she says it's fine, I can tell that she was disappointed and a little frustrated that we couldn't do more. 

There is no way around it, I'm a party pooper, a wet blanket, a big ol' bummer. I hate being those things. I hate that I'm not dependable and fun. Guilt has become a dark shadow over most of my social interactions and I hate that most of all. 

Do you ever feel like this? How do you deal with it?