Golden Age Indeed

During this year's Emmy celebrations the question has been posed over and over: Are we in the middle of a new golden age of television? I think the answer is clearly yes. In fact I would suggest that it is the first golden age of television but that's an entirely different discussion. 

There is certainly a whole lot of truly terrible crap on TV but mixed in with all the crap are some amazing gems. Shows that are smart, creative, funny, scary, nail biters, beautiful and overall just well done. Shows that don't follow the same old formula that has been fed to us year after year. 

Hubby and I don't spend nearly as much time watching movies as we do watching our favorite TV series. Movies are frequently a disappointment. Every year a few stick out but most of them feel like a waste of time. But those series... Season after season, hour after hour, we just grow more attached to the characters, more enthralled in the story, more excited to see what comes next. And it's not just one or two shows. We have a long list of series that we love.

In addition to these wonderful gems there are a plenty of entertaining, fun shows that make me laugh and keep me distracted from my pain and other symptoms. Plus, we can't forget about all the wonderful home and design shows that draw me in, give me great ideas and inspire me to create beautiful spaces of my own. 

I sincerely hope that this is just the beginning.

Friday Thoughts

Some thoughts on this Friday morning:

* Can't wait for the season premiere of Saturday Night Live tomorrow night. Making it even more exciting, Tina Fey is the host!

* There has been a bit of a delay with the house build due to busy carpenters. I fear this is just the beginning of the delays and it is bumming me out.

* Can hardly believe it's almost October. I love October!

* I've been fantasizing about taking a nap since I got up more than 5 hours ago. Another half hour and I should be in business.

* Express Scripts is making my life difficult again. They take advantage of every opportunity to make things much more difficult than they need to be.

* Why is all formal wear now sleeveless? Not that I have much need for formal wear but still...

Whimsy Wednesday

Enjoy a laugh about hashtags with Jimmy Fallon and Justin Timberlake. 

Have a great day!

Being in Pain is an Activity

Frequently conversations start out with questions like "What have you been up to?" or "How are things?". My gut response is that I've been busy. But then I can't exactly point to much of anything specific that has been keeping me busy so I often find myself actually responding with "not much" or "nothing". This isn't accurate either because I am doing things.

The trouble is that a word like busy has a very specific meaning to healthy people. Heck, I can remember being busy before chronic pain hijacked my life, spending almost every waking minute hard at work at my job, or on a play, or on a fundraiser, or socializing with friends...I was truly busy then. The thing is, I feel just as busy today as I did back then. I simply have a much smaller well of energy and time to draw from, which has redefined the concept busy for me.

What I've come to understand is that just coping with pain and all the other symptoms of my chronic migraines and fibromyalgia takes up a great deal of time and energy. It doesn't sound like much but the toll it takes on the body is profound. Add in daily activities like showering, grooming, preparing food, etc, and suddenly most to all of what little remains of my reserves are consumed. Then if anything else comes up, which is always happening because that's how life is, I feel busy. 

Right now I feel busy because we're building a house. There is a fair amount of coordinating that needs to happen. We are figuring out the financing, researching appliances, window coverings, colors, style, the many details of the physical move...there is a lot of additional stuff going on right now and it makes me feel busy. 

However, saying I'm busy to any of the healthy people in my life usually results in funny looks. 

I get that it's incredibly difficult for healthy people to understand that just because I don't work and don't have kids that I can still be busy. How do you even begin to explain to someone how being in pain is actually an activity? Everyone has pain so everyone thinks they understand it. How do you then get them to understand how different chronic pain is from regular pain? How do you get them to understand the cumulative effects it has both physically and mentally? How do you get them to understand that pain is just one of many symptoms that need to be dealt with?

As much as it looks like I don't do much or that I'm doing nothing, the truth is that I'm always doing something. The horror under that truth is that most of what I do is suffer and try to minimize that suffering. It's hard work. It's taxing. It's the hardest misunderstanding to overcome, in a long list of misunderstandings about my life. 

Relearning a Hard Lesson About Chronic Pain

Hubby and I had accepted an invitation for the christening of his cousin's baby yesterday. The invitation was for the event and a reception after. Since neither of us had ever attended one of these, we really didn't know what to expect. I grew up in a church where baptism was something that only happened when a person was of an age that they could decide on their own that they wanted it. Without any first hand experience assumptions were made based entirely on movies and TV shows, cause that's always real, right?

The biggest assumption made was that a christening would be its own event. I thought all the family and friends would show up at the church to watch the parents and god-parents gather round the baby. The pastor would pour water on the babies head, pray and we would be out of there is 20 minutes - max. This could not have been further from reality and, if I hadn't been so attached to the Hollywood image of a christening, I would have figured out that a church event taking place at 11am on a Sunday was an event that was part of a church service and not a stand alone event. I simply was not thinking.

Upon arrival at the church we were shocked to see that:
A. We were about to attend a church service
B. We would have to sit in the 2nd row which had been reserved for those of us attending the christening
C. That it was a contemporary church with a full band

As you can imagine, these are all things I really needed to know in advance in order to properly prepare and avoid severe pain. If I had known the time commitment involved I would have brought water. Had I known they were going to have a band playing for a full 30 minutes and that the band was going to be unnecessarily amplified in the small room I would have explained to my cousin-in-law that I can't handle that level of noise and let her known that I would watch the christening from the back of the church and sneak out after - meeting up with them later for the reception. Had I known that the ridiculously loud music would be followed by a half hour of the pastor, who was also well amplified, unnecessarily yelling his sermon, I would have walked out during the music portion (again, we were in the 2nd row and I just couldn't bring myself to stand up and walk out in the middle of his sermon). This was like no church I had ever attended.

When the pastor had finally finished and I saw the band take their places on stage we just left. I wasn't about to sit through one more minute of that crazy loud music. I get that I'm sensitive to noise and that it was painful for me in a way it wasn't for everyone else there. That being said, there is no reason to amplify a live band in a room as small as that sanctuary was. It was loud to the point that it was damaging to the ear drums. Why would they do that? I'm getting off track here...

The actual christening and the reception were lovely but the whole thing was a disaster for me. We left the reception early, thankfully hubby had another commitment, but the damage had been done 10 minutes into the service. By the time we got home I was well on my way to a bad migraine. An hour later I was lost in pain. I blame myself. I should have known better and I should have asked questions. I'm simply not in a position to go with the flow anymore. If only I had been thinking.

PFAM Blog Carnival Now Available

The September Patients for a Moment blog carnival is now available. This month's topic is: What does your illness feel like. Check out all the great posts.

Whimsy Wednesday

If you're a fan of Breaking Bad, you'll love this. Jimmy Fallon as Walter White.

Have a great day!

PFAM What it Feels Like

The September prompt for the PFAM blog carnival is: "What does your illness feel like?"

As many of you already know, I live with chronic migraines and fibromyalgia. Finding the words to describe what that feels like has been a real challenge. So many symptoms. So many feelings. Where do I even begin? I've tried several different approaches, starting over 3 times now. Doing so I discovered that I just don't have the words yet. Instead I'm going to tell you what I feel like.

I feel like a freak, a misfit, a square peg in a world of round holes. My illnesses have pulled me outside of societal norms and left me misunderstood and judged by the masses. I can't work a normal job. I don't have the energy expected of a woman my age. I can't participate in the kind of activities most people can and do. My days are filled with things most people don't have to worry about and certainly don't understand.

As aware as I am of how much my life has changed since the onset of my diseases, it's only when I interact with people (other than hubby) that I feel just how different I am. It's in the looks people give me, everything from pity to disbelief. It's in the comments that make it clear what I'm saying is not being understood. It's hearing about all the things they are doing and realizing I either can't do them or don't want to do them because of my chronic migraines and/or fibromyalgia.

I am different. My illnesses have made me different. I don't say this to impose a judgement on myself. It is the simple reality of my situation. What I hope people will understand, what I fear people won't understand is that I am more than just my diseases and the chasm of differences they have imposed.

Living With Chronic Migraines and Fibromyalgia

I was stuck this past weekend with the reality of what I'm going through; living with chronic migraines and fibromyalgia. Don't get me wrong, I deal with both conditions every day and it is very real to me each moment. It colors all my thoughts and decisions. It has a huge impact on what I do. Heck, I'm here writing about it regularly. But I spend so much time in the thick mud of coping and living with these diseases that sometimes I don't see it clearly.

Then I will have a moment, like I did on Saturday when we were out walking our dog, when it occurs to me just how much my life has been impacted by chronic pain. I think about the last 7 years of doctor appointments, pills, lost days, physical and mental challenges, brain fog, nausea and the like. I'm both a little impressed that I've managed to make it through this for so many years and intimidated by the thought of the years ahead dealing with the same.

The truth is that I never could have imagined ALL of this. When I think about the totality of my experience with chronic pain so far I feel...sad.

Undone By Things Undone

So many things go undone around here. Everything from projects that should have been taken care of months ago, to weekly cleaning tasks that might not actually get done every week. After a while these undone things start to drive me crazy. I can only look at an undone project or chore for so long before the perfectionist in me gets frustrated and mad.

I like for things to be neat, organized and clean. No, that's not worded quite right. I need things to be neat, organized and clean in order to feel like I can move forward doing anything else. Clutter, dirt and unfinished projects make me feel cluttered, dirty and unprepared internally. Whenever I'm feeling like that all I need to do is look around and notice all that is undone and suddenly these feelings make sense.

Dusty table

Piles of papers that need to be dealt with

planters that need to be checked for spiders and put away 

Etc...

I give myself a pass on some tasks because of all the pain, nausea, fatigue, brain fog, etc., etc., that regularly assault me. The frustrating truth is, I can only do so much on any given day so some low priority projects go undone for far too long. Once I reach my limit and start to feel undone by all that is undone around me, the pass I give myself expire and things must start getting done.

This is where I am now. Undone and needing to get things done, a.s.a.p. Time to enlist some help from hubby and push myself to overdo it a bit. I will pay the price in pain and such but it will be worth it in the end because it will clear my head and help me to move forward.

I Tried Pot

Quite unexpectedly, the opportunity to try pot fell in my lap. Long story short, it turns out my brother-in-law has a vaporizer and some product that he rarely uses. He offered to let me try it and since it's something I've wanted to do for a long time I took him up on the offer.

In my head the perfect situation for trying pot to manage my chronic migraines and fibromyalgia symptoms would be as follows:
1. To have a doctor with the expertise to prescribe a very specific kind of pot for my conditions.
2. To have a legal dispensary nearby where I could get that prescription filled with full confidence that I'm getting what I'm promised.
3. To be able to get this prescription in the form of baked goods or candy so I wouldn't have to smoke.
4. That insurance companies would recognize these pot laced baked goods just like they do any other prescription drug.

This day is very far away for those of us living in Missouri and certainly isn't how things turned out. I did like the idea of using a vaporizer instead of just smoking because it is a cleaner delivery system. Unfortunately, you still have to inhale the vapor into your lungs the way you would if you were smoking and that was very difficult for me to do. My body doesn't want anything in my lungs so it would involuntarily close up. It took an embarrassing 5 tries to get a good inhalation.

I managed to get two good hits and it did get me high. My upper lip went numb and my head got that buzzed feeling. I felt relaxed and quickly got super tired. As far as treating my pain, well, it didn't. I liken it to an air freshener. If you are trying to cover up a bad smell with an air freshener you often just get scented stink (at least that's what happens when you have a great sense of smell). I still felt my pain, it was just a bit masked by the effects of the pot.

When the pot wore off, my pain got much worse. I believe it was that buzzed feeling in the head that made my pain go from bad to worse. That's why I don't drink alcohol of any kind anymore. It's not the drink, it's that buzzed feeling that always triggers my migraines.

Since we don't have any ability to get different kinds of pot around here that might be more appropriate for me, I guess my vaporizing days are over. Maybe someday Missouri will progress and I can try it again under more ideal conditions. As disappointed as I am that it didn't help me, I am glad for the opportunity to have tried it.

Whimsey Wednesday

Okay, I'm generally not a cute cat video kind of girl but I just need something super light and cute today. This one is both of those. Enjoy :)

Have a great day!

The Stink of Fresh Air

Back in the day I loved to throw open the windows and let the breeze pass through, bringing all the freshness and wonder of the outdoors in with it. It was great after a long frozen Minnesota winter or a hot humid summer to finally open things up and feel the changing of the seasons. It was a relief, it felt like a fresh start. It was energizing.

Throwing those windows open is no longer the great experience it used to be. The main reason, the great outdoors stink - literally smells bad. Now I can't actually smell the air (unless someone is creating a smell by smoking or whatever) but the "fresh" air seems to make everything it touches smell bad. Whenever we take our dog for a walk or run errands we return stinking. It's in our hair and in our clothes. Eventually the stink wears off but I don't care to smell that way every time I go outside.

I'm the kind of person who always has a glass of water by my side but for some reason whenever the windows are open the water will quickly take on the smell of wet dog making it undrinkable. Then if they stay open long enough I feel like that same stink will attach to my hair and clothes the way it does when I actually go outside.

What is going on? What happened to the magical freshness of the outdoors? I haven't enjoyed fresh air since leaving Minnesota - is it the location, living in a big metro area instead of a small city? Is it my migraines that have made me more sensitive to smells that have always been in the air?

Whatever happened, the days of throwing the windows open and experiencing all that wonderment are long gone. Our windows remain closed and, most of the time, the shades are drawn too. At least I have the vivid memories of what it was like back in the day. Memories, that I can call up any time I want.

A Small Weight Gain

Okay, I don't want to jinx it but I've actually gained a few pounds. At first I thought it might have been a fluke. It is not unheard of for me to swing up and down as much as 5 pounds over the course of a week or so. At least it wasn't unheard of before the all the nausea and pain started me on this path of weight loss. This time it actually seems to be sticking.

The change I made was a simple one, I've been eating 2 or 3 bowls of dry Cheerios every day for about a month. Yep, just plain old fashioned Cheerios. It was a small change but a very doable one because dry Cheerios can be consumed mindlessly while watching TV, they are bland enough to not aggravate my constant nausea and so far I haven't gotten sick of them. The perfect combination.

I'm still about 15 pounds away from my goal weight and I don't know that this addition of dry Cheerios will be enough to get me there but seeing that scale go up for the first time in years is so encouraging. Now I actually feel like my goal is attainable even if the pain and nausea remain all out of control.

The Style of Chronic Pain

Yesterday was day one of the house build. The ground is now broken and, if all goes well (knock on wood) then we'll be moving in sometime early December. Now that the clock has officially started I can think of little else besides design, style, color, blinds, curtains, rugs, appliances...basically all the details of making this house our home. I'm watching design shows and spending way too much time browsing for inspirational images on Pinterest.com. 

Since we won't be able to afford to do much to the house for a while after we move in and even then it will be one thing at a time, I want to be clear about the overall design direction we are headed in. Nothing worse than wasting money on stuff that won't work long term. This is really the first time I've ever put any energy into really figuring out my design style. In the past I've always just enjoyed playing with different styles and colors. Several different styles appeal to me so playing is just what made sense. 

As I look to define and create the perfect space for us, I can't deny that my chronic pain plays a big part. It has already informed many of the construction decisions we got to make. Now, as I sort through the finer details of the aesthetic and look to edit the stuff we already have, I see just how much chronic pain has also impacted my sensibilities. 

No matter how much I love the clean lines of contemporary spaces my pain makes me shy away in favor of warmer, softer spaces. No matter how much I love the details and craftsmanship of a Victorian space my pain makes me shy away in favor of a space that is easier to clean and less formal. No matter how much I love bold colors and playing with different designs my pain makes me shy away in favor of something more timeless because I just don't have the energy to keep changing things up anymore. 

Good thing I have such broad taste, otherwise it might be difficult to make these adjustments. On the flip side, defining my style would be so much more difficult to do if not for the chronic migraines and fibromyalgia. Wow, I may have just stumbled on the one upside of chronic pain.

While I have yet to truly define my style the new rules are as follows:

1. Everything in the space must be something we love.

2. Everything in the space must be beautiful and functional.

3. Less is more.

Thankfully hubby doesn't care much about these things so it is all in my hands. Thankfully for him I am not drawn to anything overtly feminine. 

Whimsey Wednesday

This is so funny: street pranks with a guy doing the the movie trailer voice.

Have a great day!

Labor Days

Hubby and I spent the entire Labor Day weekend looking for a couch for the new house. Our list of requirements for this purchase were simple enough: it needs to be comfortable, the back needs to be high enough that we could rest our heads on it, the bottom needs to be close enough to the ground that our little rabbit can't get under it and chew things, it needs to be made of fabric (no leather), it needs to be stationary and it needs to be a neutral tan or beige color. Considering the massive size of the furniture show rooms and the number of different show rooms around here I had full confidence that we could find just the right thing. 

Now you may be wondering what we are doing trying to buy a couch for a house that is still 3 months away from completion. Well, we have three big purchases to make between now and then (the couch being one of them). We've decided to space out our purchases to keep them more manageable. Plus, Labor Day weekend is always a great time to get good deals on furniture. 

We visited 5 showrooms. We walked up and down each isle sitting on all the couches that we thought might fit the bill. By the time we had made our way through ALL our options we hadn't found a single couch that fit all our requirements. 

Here's the thing, the vast majority of all stationary couches are not tall enough to support the head. The 3 (that's right, only 3) we found that were tall enough, low enough and comfortable enough, were all a really ugly, dirty looking, gray/blue color that we hated. Now, because we have a lap dog who spends all day on the couch we have been planning to buy a couch cover so we can keep it clean. That being said, I had hoped to some day not have to cover the couch, which is why I wanted it to be tan or beige. 

Unfortunately the perfect couch just doesn't exist. Since color was really the only area where we had some wiggle room, we ended up with one that that fit all the other requirements (that's it in the picture-the color was worse in person). We'll just have to always keep it covered. Despite making the one compromise I'm really pleased with the purchase. We got a good deal on a high quality couch that is migraine friendly and works for our family's lifestyle. Now we need to start researching appliances.