Friday, January 31, 2014

The Agonizing Decision To Treat A Migraine

To take my Triptan or not to take my Triptan - This is the question I'm constantly faced with. Having a rescue medication that takes the edge off the migraine pain in my coping toolbox is a big deal. The problem is that I hate the way it makes me feel. You may remember a while back I wrote about some of the crazy side effects I get in addition to the expected side effects when I take Sumatriptan (Imitrex).

Honestly, some of these side effects scare me. My migraine doc has assured me that I'm okay and it is nothing to worry about but I tend to think he is a little too cavalier about the whole thing - or perhaps I'm just a worrier and nothing he says will reassure me. But these meds are vasoconstrictors and I get the chest tightness, pains in my neck and even in my legs most of the time when I take it so I feel like a little worry is perhaps valid.

Being in all that pain scares me too. Back when I first started getting migraines as a young kid I was certain I was dying - nothing could hurt like this and be okay. All these years later, armed with the knowledge that my migraine pain is not cause by my brain exploding and seeping out through a growing crack in my skull, the pain still scares me. I still can't believe the horribly intense pain of a bad migraine is not the result of some catastrophic event. And since the pain went chronic, a new fear has taken hold. What if I can't escape the pain, ever. What if I can't handle it?

I can't treat every migraine so am I always trying to conserve my rescue meds and simply ride out the less severe migraines. Of course, it's hard to tell which ones are going to be less severe until it is too late to properly treat the migraine. It's a gamble - a tiresome game that I've been playing for the last 8 years now.

At times I've gotten overly confident after a handful of days pass without the need of my rescue meds and have begun to think that I should stop taking them altogether and just deal with the pain. Of course, as soon as I have that thought I get a really bad migraine. I might ride it out for a day, hoping that a night's sleep will take care of it, only to wake up in the morning feeling worse than the night before. Desperate for some relief, scared it will never come, feeling exhausted and beaten down, I'll take my rescue med, curl up under covers and pray for some relief. If relief comes it will only be temporary and by bedtime the pain will be returning and by morning I'll be right back to where I was the day before. A pattern takes shape and it may go on for several days or even a couple weeks.

Every single day of this kind of pattern I'm faced with the difficult decision of when to take my Triptans. The worst part about trying to decide is not knowing what, if any, impact the Triptans may have on my health. All I know is that each time I decide to take one it is because I'm at the end of my rope and I feel like I can't handle the pain on my own. Meanwhile, somewhere in the back of my mind, I'm fearing the day will come when my rescue meds no longer work.

On the surface deciding to treat a migraine sounds like an easy decision but it has become a far more complex matter over the years.

Wednesday, January 29, 2014

Whimsy Wednesday

Here is a great SNL spoof of Family Feud and several stars from NBC and CBS shows.
Have a great day!

Tuesday, January 28, 2014

A Love Hate Relationship

I've become quite dependent on my laptop. I'm on it every day, looking at facebook, blogging, reading blogs, reading about migraines and fibromyalgia, checking the weather, looking at the TV Guide, tweeting, checking the news, managing my Netflix queues... My laptop is my access to the outside world, it allows me to stay connected with family, friends and my fellow chronically ill peeps. The value this connectivity adds to my life is hard to even measure in light of my health limitations.

No matter how much I love the connectivity my laptop provides, I never have anything nice to say about the actual laptop. It is old, really slow, it randomly turns itself off, most of the programs I've installed (like Skype) have "fatal flaws" or have simply crashed, I frequently get locked out of internet pages when in the middle of using them and the only way to get back in is to restart the computer. Start up takes about 20 minutes (sometimes longer) and shutting down takes about 5. I can no longer watch any videos online without causing a crash. Honestly, my laptop drives me nuts. 

However, I've vowed to ride it out to the bitter end. Laptops are expensive and we don't have much extra money, especially now - after the big move. But the problems are getting worse and more frequent - I fear the end is near. As much as I hate my laptop, I hate the idea of spending money on a new one in the near future much more. 

Fingers crossed that it survives through 2014.

Monday, January 27, 2014

Unpacking Pain and Fatigue

It took 6 weeks but I've finally finished unpacking. To be fair, it wouldn't have taken quite this long if our kitchen had been done when we moved in. We've been waiting patiently for drawers that were never ordered to come in and be installed in the lower cabinets. On Friday, after learning that nobody ever ordered the drawers, I decided I wasn't willing to wait another 6 weeks to finish unpacking. Sure, I'll have to empty the cabinets and rearrange when the drawers finally arrive but at least this way I don't have to look at any more boxes or wait to use the packed items.

Waiting on those cabinets was only part of the reason it took so long. The biggest delay, of course, was my uncooperative body. The physical work of unpacking coupled with the mental work of finding a home for everything (not to mention the stress of the move) ushered in a new level of craziness. During those 6 weeks I had 27 migraines, 3 periods, and dealt with an extra bad dose of fatigue, brain fog and fibro pain in my arms and legs. It really is no surprise that my body has responded like this but that doesn't make it easier to deal with.

Over the past few weeks I've been slowly trying to re-establish a routine. I've been able to get back to blogging, doing my gentle exercises, cooking my usual meals and even making some sweet potato pies. It may be several more weeks before all the work of settling in is complete enough that it doesn't impact my daily life but the worst of it is definitely over AND the fun of decorating will begin as soon as I recover from the unpacking pain and fatigue.

Thursday, January 23, 2014

The Wonders of Autonomy

Every now and then I get to thinking just how glad I am that I'm not a kid anymore. Being an adult is lots of work, comes with a lot of responsibilities and the stakes are often very high but I wouldn't trade any of it for the restrictions, hormones and lack of autonomy involved in being a kid.

Adulthood is like a grand reward for 18 years of putting up with crap. I will never again be forced to take another gym class (oh how I HATED gym class), go to bed, or come home at a time determined by someone, be told what I can and can't do by someone, or be forced to stop doing something I enjoy. Don't get me wrong, I usually make responsible adult decisions but they are my decisions: I eat pretty healthy, I try to get a good night sleep, I work out, I keep things as clean and tidy around the house as I can, I'm taking care of my business, etc.

However, from time to time, I get a wild hair and just want to eat cookies for dinner or waste a few hours in front of the TV. Of course, these days what I can and can't do is often dictated by my chronic migraines and fibromyalgia but these wild hairs predated the onset of both conditions and certainly have continued despite them. Having the autonomy to indulge in such whims, that only happened when I became an adult.

That's really what this is about, autonomy. No matter how many obligations I have or how many restrictions my illnesses thrust upon me, I still enjoy the ability to choose how I want to live. I might be in pain 24 hours a day, 7 days a week but I choose to still get up and do things. I choose to put a lot of effort into being positive and present when my hubby is home so we can maximize our time together. I choose to cook healthy vegetarian meals. I choose rest on the couch instead of getting back in bed. My days are full of choices and for that I am very thankful.

Wednesday, January 22, 2014

Whimsy Wednesday

Here is a fun little clip from Conan for your enjoyment. I hope you all have a great day.

Tuesday, January 21, 2014

The Decision To Say No

I said no. I hemmed and hawed. I second, third and fourth guessed myself. I felt obligated and guilty but in the end I said no to a party being thrown for my husband's, cousin's 18th birthday. I had woke up with a migraine and never really got on top of the pain. I was having all kinds of cramps and feeling quite hormonal. I knew there would be screaming kids, loud conversations and there was no way I would be up to pretending like I was okay or making small talk with people I don't know.

The next morning we met up with hubby's parents to have some breakfast and they were telling us about how loud it was the night before at the party. They said the little kids were all running around, screaming and carrying on. They almost couldn't take it, which means it would have been a disaster for me. A disaster we drove 45 minutes one-way to attend. This conversation confirmed for me that I made the right decision.

It sounds obvious - the decision to not go. But boy, that feeling of obligation weighs on me so heavily when in the decision making process. All signs can point to me not being up to going someplace but if I feel obligated to go then the decision will be difficult to make. If I had gone I would have ruined what turned out to be pleasant, paced, 3 day weekend. I may not have felt great but I was able to get some stuff done and spend some quality time with hubby. A stark contrast to the bad decision I made to attend Thanksgiving dinner out of obligation.

I think having made the right decision this time and then having it confirmed by others has empowered me to it more. I need to do more of this sticking up for myself and making decisions that are in my best interest, even when it runs contrary to social protocol. Maybe this will be the year that I make the right decision more often. Who knows, maybe it will even get easier. A woman can hope.

Thursday, January 16, 2014

Stylish Shoes and Fibromyalgia Don't Mix

Shoes are important because feet are important. Shoes are also big business. Women love to wear the beautiful, high heeled, works of art being produced by Jimmy Choo, Louis Vuitton, Manolo Blahnik and the like.
Manolo Blahnik

They come in all kinds of colors, patterns, shapes, styles-the variety seems endless. They elongate our legs, push our butts and boobs out, basically making us feel and look a little sexier. Even a practical shoe gal, like myself, can't help but feel drawn to these heeled beauties in the stores. Unfortunately, everyone agrees that these shoes are harmful to the body. The toe boxes are now triangles that squish and mangle the toes, the heels that create all those sexy lines also cause back and leg pain, not to mention they change our gate.

To most women, it doesn't matter. I hear women saying the same thing the celebrities and the industry say - that the pain is worth it. I don't tend to agree. For one, I can't afford to be that cavalier about pain. If I put on a pair of shoes that pinch, rub my foot wrong or mess with the shape of my back, I will trigger my fibromyalgia and pay the price for days. I have enough pain already. At the same time, I am youngish and still want to wear things that are fun and express a sense of style. For two, I hate that our society puts so much pressure on women to look sexy that we feel compelled to completely disregard the physical damage and pain being inflicted by stylish shoes.

Why can't comfortable be sexy? Imagine a world where we all cared so much for our valuable feet that we wore soft shoes with plenty of arch support. A world where stilettos were considered ridiculous. I bet if this world could exist that people would find a way to make shoes be both stylish and good for our feet. If only our creative energy and ingenuity were focused on that end.

Since this world exists only in my imagination I am left looking forward to the day that I'm old enough to start wearing orthopedic shoes.

Wednesday, January 15, 2014

Whimsy Wednesday

Here is a fun bit from the Jimmy Kimmel Show with Juan Pablo.

Have a great day!

Tuesday, January 14, 2014

The Power of a Made Bed and a Shower

Morning is a busy time for us. Rupert (rabbit) needs food, hay, fresh water, litter and a towel. He also needs some supervision while out of his cage during this morning ritual. Gypsy (dog) needs a walk and breakfast. I fix lunch for hubby to take to work, get some breakfast for myself, make the bed and see him off. While I'm still up and moving I get myself into the shower. By the time this is all said and done I'm exhausted and ready for a nap. 

For the most part this morning ritual is made up of necessary tasks like caring for our animals, eating breakfast, fixing a lunch for hubby. Tasks that, by the way, only get done every single day because I have hubby helping out and picking up the slack when my pain just won't allow me to function. Also included in this morning ritual are a couple things that I chose to do like make the bed and take a shower. These two tasks have a surprisingly large impact on me, large enough to make them important to each day.

Making the bed is a quick way to make a big visual impact. Even if there is a pile of clothes on the floor and I can't see the top of the nightstand the bedroom looks fairly put together when the bed is made. Plus, I have to admit that pulling back the covers of a made bed at night gives me the feeling that this night is a fresh start. As if making the bed erases all the difficulties of the night before when maybe I couldn't fall asleep, or couldn't get back to sleep, or woke up feeling terrible. It doesn't actually impact my sleep but it gives me some hope at bedtime - and that is a very powerful thing.

Taking a shower is other thing that I feel is important for me to do every day. Much like making the bed, for me, the shower is a fresh start. It might be the only thing, or one of only 2 things that I get done in a day but it makes a big impact on my frame of mind. I've tried skipping the shower a time or two but I found my mind is constantly distracted by my greasy hair. My hair is quite oily - no exaggeration it looks almost wet after about 24 hours. Outside of the aesthetic, my chronic migraines have left me with an incredibly sensitive scalp that becomes pained by the cooling effect of wet hair, even if wet from grease. As a result I can't let my hair air dry and I need to wash it every day. 

On any given day, if I am to have any hope of accomplishing anything, I need that shower - even if I need to nap immediately after, even if nothing else gets done, even if the process is painful (it usually is). It may sound a little silly but it makes that big of an impact on me. It makes me feel fresh and semi put together. Everything else might still be a mess, I might still be in lots of pain but at least I'm clean. For whatever reason that is enough to put me in touch with my humanity and that is a very powerful thing indeed. 

Call me crazy but it works for me. 

Monday, January 13, 2014

Negative Emotions are Valid Emotions

Here I am again. In that emotional/mind space of frustration, disappointment and sadness over all my limitations. Despite having periods of time when I feel like I'm dealing with everything pretty well, I also have these periods of time when I'm not. Call it the natural ebb and flow of emotions, or perhaps just a piling up of undone stuff and canceled plans that eventually just wear me down - whatever the impetus, here I am.

Part of me wants to employ some positive thinking. Put things in perspective by focusing on all the wonderful blessings in my life. Truth be told, I am a very lucky woman with many blessings. No doubt this would be a great way to lift myself out of this funky space. But, another part of me wonders if it isn't better to just spend a day or two allowing myself to mourn my losses. Just to be clear, I'm not talking about dwelling for weeks or months on end. But...

Isn't sadness and anger a completely natural and valid human reaction to living with chronic illnesses?

I tend to think so and, because I do, I feel like it's okay to allow myself some time to just feel sad or angry for a bit. I don't want to ignore or stuff my feelings. I don't want to pretend like I only ever feel positive emotions. It simply is not true or even realistic. So here I am, feeling blue and it's okay. Positive emotions will prevail again in the days ahead.

Friday, January 10, 2014

Getting Back on Track

Feeling a bit like a bad blogger in light of the recent infrequency of my posts. First the move, then the holidays and then our modem died leaving me internet-less since Monday afternoon. Circumstances beyond my control for sure but still, my posting has been sporadic and for that I apologize. Things are getting back on track now and my posting should become more regular again - knock on wood.

This has been a week of errors. The winter storm messed up our roof and crippled the city all week, our modem died, our 3 week old washing machine broke and several other smaller hiccups I won't bore you with. Fingers crossed that this bad luck streak will come to an end as does the week.

In the meantime I'm just thankful for our dry basement, working furnace and the clouds in the sky today. I'm sure you fellow migraineurs understand that there is not a bit of sarcasm in this sentiment. I'm actually really thankful for the clouds. It is only on days like this when I can pull open the curtains and save some electricity.

Monday, January 6, 2014

Blanketed in Bitter Cold and Snow

Hubby trying to get a head start on the shoveling early on.
We've been hit by this system of bitter cold and snow that is now headed to the East Coast. Temperatures have plunged well below zero and the 8 or 9 inches of snow we got yesterday ended up getting redistributed over and over and over and over through the last 24 hours as the winds whipped about violently. As night fell we could hear our shingled being pulled up and mangled. NOT what we want to hear just 3 weeks after moving in.

This particular brand of misery is nothing new to me. It is in fact a regular occurrence in Minnesota where I grew up. Down here in St Louis, it is fairly rare. Sure it gets cold, but not this cold. Sure they get snow, but this much and not coupled with such strong winds. Generally speaking this city is not experienced enough, prepared enough nor properly equipped to handle a winter event like what we find ourselves in.

Yesterday we hunkered in with our fur babies for the day. Rupert, blissfully unaware that anything was happening, hung out on the floor as usual.

Poor Gypsy spent the day under blankets, fearing the frozen temps and cruel winds that she would have to endure while doing her business.

Still in the grips of the bitter cold, with road crews still trying to clear the roads and hubby still working on clearing the driveway (a slow process in these dangerous temps), the whole family is again stuck at home today. With plenty of unpacking yet undone, I can easily keep busy but, honestly, I'm looking forward to getting out of the house tomorrow for my dentist appointment.

Friday, January 3, 2014

Doggy Drama

To say that our dog is a drama queen would be an understatement. In addition to being an archetypical Chihuahua, she is very sensitive, delicate and gets anxious about everything that is outside of her usual routine.

The move has been difficult for her. Most of the new house has hard flooring, which makes it hard for her to maintain her footing, to run around and jump onto and off of furniture. She clearly doesn't quite feel at home here yet (then again neither do hubby and I - this kind of thing just takes time). She isn't yet familiar with all the sights and smells. With the unpacking and arranging yet unfinished things are still unsettled. Further complicating things is the bitter cold, snow and wind that has made walking the new neighborhood very difficult. Even all bundled up in her coat, she simply can't handle this weather. She is very small, very skinny and has very thin hair - a dog clearly designed for warm weather.

She absolutely hates going to the vet and makes sure that everyone within ear shot knows it. There is screaming, crying, pleading, pooping and even attempts at biting. She gets so worked up that even the most benign touching makes her scream out as if in terrible pain. It has gotten so bad that I also now experience a good amount of anxiety when it comes time to take her in.

But it became clear last week that she has an ear infection. No matter how much we both hate going in, she needed to see the vet and get some medicine. As the drama was winding down and she was allowed to just sit on my lap I decided it was time to take action. I asked if we might discuss medicating her prior to these visits.

I felt kind of bad even bringing it up but things have just gotten so out of hand. And it's not just the vet's office that elicits this kind of a response. She freaks out when we take her to get her nails done and whenever someone comes over, or (as we just learned) when we try to give her the prescribed ear drops to take care of her infection. Our sweet baby girl turns into a terror the second she is confronted with something that scares her and frankly there are a lot of things that scare her.

The vet tells me it may or may not work but thought trying it was a good idea. Based on her freak out this morning over the ear drops we've decided to try it tonight when we have to administer the drops again. Fingers crossed that the meds help her enough that we can treat this infection and take care of all future nail and medical needs without all this anxiety and drama.

Thursday, January 2, 2014

Hope For The New Year

The new year is officially under way but I've hardly had the chance to take notice. Hubby and I did spend some time chatting about what we hope for the year ahead and took in an hour or so of end of the year recap programming on network TV, but that's not exactly celebrating. We may be youngish still, but since we're not big party people, we don't drink and we aren't night owls we never make plans of any sort to ring in the new year.

If not for the extremely loud fireworks going off so close to our neighborhood, we would have happily slept through midnight. Being woken by the festivities, our poor little chihuahua was terrified and needed to join us in bed. As nice as that sounds, her presence in bed meant none of us got a good night sleep.

Despite our lack of proper New Year's Eve celebratory spirit, I usually do feel some sense of renewal or beginning this time of year. Usually, but not this year. The business of life has distracted me from all things usual. Such is life. But every now and then, for a minute or two, I'll catch of glimpse of that new year feeling and these are hopeful moments. After all, isn't that what the future and new beginnings are supposed to make us feel? Hopeful.

I tend to think so.

So here's to the year ahead. May the unknown smile upon us.