Wednesday, July 1, 2015

The power of Music therapy



I grew up in a family where music was very important. In fact the ability to read music was considered an essential skill that must be developed. From a young age my afternoons involved listening to my sisters practice piano and soon enough my turn came to take piano lessons. I hated every minute of piano lessons and made my teacher's life a living hell, but they did succeed in furthering my appreciation for music. Though I never gained much talent in playing the piano, I quickly latched onto music as a way to express and feel my emotions. I wanted to further my music education and stubbornness wouldn't allow me to pursue singing (because my sisters did), so instead I developed the ability to play several instruments. Along the way I played the clarinet, the flute, the saxophone, and for a brief period the french horn. I kept up my music education until I graduated from high school and lost my access to any instruments. In college I worked in the student center which had several piano practice rooms. I would longingly listen to the people practicing and wished I could do the same, but because my skill level is poor and everyone can hear you practicing I never did it. As I got older and more established I began to long for a piano of my own so I could practice and improve my skill, and a few years ago I was able to get one. I was thrilled to have music in my house once again, even if it wasn't particularly skilled music. But then the summer came and the problems with my hands stopped me from playing. I've made periodic attempts at playing since then, but it's rare that I can manage more than a couple songs, even on my good days.

Losing my ability to create music was very difficult. So many of my emotions are reflected in music. On a really bad day I could play "Moonlight Sonata" and get out my grumpy feelings. On a happy day I could play "Pachebel's cannon" and revel in my happiness. For a long time I just dropped music, disgusted my inability to produce any and thinking that I could no longer enjoy it like I used to. I felt depressed even by listening to others expressing themselves through their art. Until one day about 6 months ago when I was listening to Les Miserables "I dreamed a dream," a song I've heard a million times, but still managed to make me cry that day. It made me realize that music still had the ability to effect my emotions, even if I wasn't playing it.  Since then I have used other people's music to affect my moods. When I'm feeling weighed down by my illness and my inability to control it, I listen to something light and airy. When I'm feeling sad and need to be held, I listen to something haunting. When I'm feeling alone and burdened I listen to friendly music which eases my burdens.

I believe in the power of music therapy. I'm not sold on it improving my physical health significantly, but I absolutely think it improves mental health. Music therapy has been shown to distract people from pain, raise seratonin levels, and reduce stress hormones like cortisol.*  Additionally,

In managing chronic pain music therapy sensory stimulation that evokes a response in the patient. When the body encounters something painful — you step on a tack, for instance — electrochemical signals travel from the site of the injury to the spinal cord and on to the brain. There, several brain regions work together to process pain signals — ultimately resulting in the conscious experience of, “Ow, that hurts!” In contrast, brain scans reveal that listening to pleasing music increases activity in parts of the brain's reward center. “Pleasant music triggers the release of the brain chemical dopamine,” explains Robert Zatorre, of McGill University, who studies emotion and music. This change “is strongly associated with other rewarding and motivating stimuli, such as food, sex, and certain addictive drugs,” Zatorre adds. Scientists believe that music’s ability to make you feel good may be one way it helps to alleviate pain.*

Trained music therapists use music therapy as a means of conditioning the patient to relax and release pain and stress  Though I've never had an actual music therapist, I know music often helps to distract me from pain. It's easy for me to get lost in the music and temporarily forget how much pain I'm in. Music therapists take it a few steps further by getting patients to make music, write songs, discuss music and lyrics, and use music to meditate. Unfortunately there are not a lot of established music therapy programs and the therapy is of course not covered by insurance, but as a chronic pain patient there are a lot of ways I can use music for pain on my own.  On a bad day I can often feel my pain levels start to ramp up. When that happens I can use music to defray the pain a little bit or to help improve my mood when the pain makes me depressed.  At the end of the day, music is just part of a long list for coping mechanisms for pain, but it's a potentially effective option that costs little and doesn't involve medication, which is always a positive in my book.

* Source here
* Source brainfacts.org



Monday, June 29, 2015

What it's like traveling when you're chronically ill

Me in Greece. I was annoyed about how many steps I had to climb and how hot it was. The Acropolis was not worth it. 

Traveling when you're chronically ill can be difficult, especially when it involves traveling in an airplane or international travel. I just got back from a trip to the Mediterranean and though it was an amazing vacation, it was rough on my body.

Flight from Home to Toronto Canada- 2 1/2 hrs

Layover- 4 hrs

Flight from Toronto to Spain- 7 1/2 hours

Total travel time= 14 hrs

Time of arrival in Spain= 9:00 am

Hotel check in time- 3:00 pm 

Time I finally get a chance to sleep- 6:00 pm

Total hours without sleep= 28 hours

Result= exhausted, hurting, and sleep deprived me

Plane travel is not for the faint of heart. They do not make airplanes to accommodate someone with chronic pain. My legs were in so much pain after being cramped for so long. I even had the aisle seat due to my careful planning, but it wasn't enough. Sleeping was an absolute joke. I'm in too much pain to sleep in my bed most of the time, so sleeping on the plane was never going to happen. I knew that and was prepared, but going without sleep for so long definitely took it's toll.

Traveling when chronically ill involves so much preparation.  Since I knew I was going to be without my luggage for a very long time I made sure my carry on bag was stuffed with prescription medications. I have no doubt the TSA agent thought I was some sort of druggy, but I have a lot of medications I use on a as needed basis and who knows what I might need over the 20 hours before I got to my hotel or if the airline lost my luggage. I felt like a walking pharmacy.

Another way I prepared was before my trip I spent hours researching which tours I was going to take and how much exertion they involved. I carefully planned my days to allow for adequate recovery time. For example, I knew that visiting Rome was going to be a rough tour requiring lots of walking, climbing hills and steps, but Rome is a must see so I chose to do it anyway. So the next day I made sure I did an easy tour. It was kind of a bummer to miss most of Naples, Italy but I knew that I couldn't kill myself  trying to see everything or I'd eventually collapse and I would see nothing. The principal of pacing which I attempt to apply in my daily life is essential to traveling as well. Oddly enough I'm better at pacing when I'm on vacation then in real life.

Another thing that was really tough at first was feeling like I was holding back my husband. There were a lot of things he wanted to do that I was too tired to do. At first he kept pushing me to do things I knew were beyond my ability. We quickly got annoyed at each other and I snapped at him that he should just go do what he wanted and leave me alone. After that he realized that it wouldn't hurt my feelings if he wandered off, so he did and I didn't have to feel guilty anymore. I think eventually he learned that he needed to respect my boundaries more, and I learned that sometimes he needed permission to leave me behind so he doesn't feel guilty.  By the end of the trip we had a nice system going wherein I would seek shade and a place where I could sit, and he would wander off and explore without me.

I knew beforehand that Europe was not disabled friendly, I've been to Paris before and noted the distinct lack of elevators, but I really noticed on this trip that I take America's ADA concessions for granted. Six different countries and most of the time there were no elevators, and the few elevators I saw were all broken. There were so many staircases I had to hike that I couldn't help but wonder how any disabled person gets around. I did not see one person in a wheelchair the whole trip, and I have no doubt that is because they can't even leave their house without encountering stairs. Every bus station, every train station, every museum, every restaurant, all had stairs and no elevator (or at best a broken one). The only exception (and it was an awesome one) was at the Acropolis in Greece. It was pretty impressive that they had an elevator, considering the Acropolis is at the top of a huge hill. It was probably mostly for use in archaeological excavation but still, bonus points for Greece.

Overall I'd say the most important part of traveling is extensive preparation. It makes things stressful before you leave, but if you're prepared for anything you might come up against it makes for a more relaxing vacation. Despite the miles of walking I came home from my trip feeling nice and relaxed, it couldn't have been any better.

Monday, June 8, 2015

5 tools for dealing with chronic pain



I'm a big proponent of taking pain medication when you need it, but oftentimes it is not available or isn't the best option. Because I have young kids I generally do not take any pain medication during the day so I've had to look at other options. I've spent a lot of time and money trying to find the right things to help me cope, so here's a few things that have found.

1. Heating pad

Despite the ridulously high temperatures I am nearly always glued to my heating pad. I cannot sleep without it because it plays such a big part in reducing my pain levels. When I'm in pain I tend to tense up which leads to even more pain. It's a nasty cycle of misery. Luckily, my heated pad helps to relax my muscles so I'm not so tightly wound. It doesn't perform miracles, but it usually lowers my pain level a notch or two.  I love my heating pad so much I even wrote an "Ode to my heating pad."

2. Muscle rub

I've tried all different kinds of muscle rubs with varying amounts of success. My favorite muscle rub was a prescription from a compound pharmacy, but my insurance decided to not cover it anymore. Luckily I found another good option in the CBD muscle rub from Fay Farm*. It's fairly expensive so I use it only when my pain levels are through the roof, but it is absolutely amazing. It is the only thing I have ever found that reduced the pain in my hands.

3. Yoga

I know everyone always says exercise is helpful for chronic pain, but for me most exercise just makes me miserable. However, yoga adapted for people with chronic pain has been transforming.  My muscles get so tight that I can barely walk, and yoga helps me to work out those muscles. You have to do it on a regular basis to see results, but it has really cut my pain levels when I stick with it. There are so many yoga videos on youtube, it's easy to pick out a particular part of your body that is hurting and find a yoga video dedicating to stretching that part of the body.

4. Meditation

Lately I have really struggled with focusing on things. My attention span seems to be about the same as a three year old, and that makes meditating somewhat difficult. However, I've found that if I just take 10 minutes and follow a guided meditation, it really helps me to relax. I end up relaxing not only physically, but emotionally as well. A guided meditation helps me to leave behind all the guilt I feel about my illness, as well as the loneliness that sometimes comes with being sick. I've noticed that I feel much better emotionally on the days I mediate compared to the days I do not.

5. Epsom salt baths

I take a bath every single day before I go to bed. It's a spectacular waste of water, but it helps me to relax. When I first heard about epsom salt baths I thought they were another made up "alternative" treatment that someone came up with to fleece sick people. But then I heard that my nephews who are heavily involved in sports take baths after their especially strenuous workouts. So I figured I didn't have too much to lose and I tried it, and it was amazing. They really are helpful if you regularly suffer from sore and tense muscles. Plus, Fibromyalgia sufferers tend to have a magnesium deficiency and epsom salts bath can help with that.

* I get absolutely nothing from the company for recommending this. It really is the best muscle rub that I've ever tried. 


Tuesday, June 2, 2015

9 reasons summer is just the worst



Please don't let it be summer, please! Summer kicks my trash. For one thing the weather  makes me feel horrible and leads to me swell up like a balloon. Also my hands are virtually unusable from the months of April-October. For another thing, my kids are out of school. Now I love my kids very much, but I've found since my illness my tolerance for a little person talking to me for 12 straight hours has diminished. I love that my son is curious, but holy cow I get so tired of answering the same questions over and over and over and over again. He has been out of school for less than four days and I'm about to climb the walls. How can one tiny person have so much energy? He literally bounces around all day long while I'm dragging my tired carcass from place to place. I wish I could just siphon off some of his energy. Then there is my daughter whose mission in life is to see how many times a minute she can whine about her brother. So all this has led me to think about:

8 reasons summer is just the worst

1. Bikini bods

It starts in February. "Summer is coming, it's time to get working on your bikini bod!"

As if.

This body isn't getting in anything more revealing than a bath robe because five years of chronic illness has left it's mark.

2. Children everywhere you go

Now I like children, I have two after all and I even like my friends' children, but I hate being around other people's children in public places. Exhausted parents take their kids out to give themselves a break and let them run around like crazy hooligans. So if I'm out in public I not only have to parent my children, I have to parent the kids whose parents are too lazy to parent. Like when a 14 year old thinks it's appropriate to beat my kid and the parents are too lazy to get up and stop it, so I have to lecture the 14 year old on how if he wants to avoid JuV he better stop following his parents example and find a way to be a productive citizen.

3. Boob sweat


I hate heat, sweat, and bras. Put them together and you've got the worst thing ever, boob sweat. In the summer bras are the devils underwear.

4. Melting ice cream/ Popsicle

One of the greatest summer conundrums is the need to buy cold treats, but trying to keep the cold treats from melting from the store to home. It's bad enough that there is no Blue Bell this year (this is a tragedy of epic proportions for Texans), but even though I put my Popsicles under the AC vent on the way home from the store yesterday, they melted before I could get them to the freezer. First world problem I know, but it's freaking hot here and I need Popsicles. Making them at home solves this problem, but said kids and weather are sucking up all my extra energy.

5. Electric bills

It's June 2nd and it's already 90 degrees here. I'm a sweaty mess after just blow drying my hair for 10 minutes. From the hours of 3-7 pm my AC doesn't ever stop running. I try to turn up the temperature to give the AC a break, but when your AC is set to 82 degrees it feels like you're living in a sauna. And then the cost for that sauna is still several hundred dollars a month, resulting in me being much poorer in the summer. Plus, because heat makes my pain and stiffness worse, I really need to keep the temperature at a reasonable level.

6. Sand, sand everywhere

When people find out that I live near the beach they always say "That must be so amazing, I'd love to live by the beach. You are so lucky!"


Hurricanes aside, I hate the beach because sand is the "gift" that just keeps on giving. It gets in your car, which you then have to vacuum. It's gets on your sandals, which you have to hose off. It gets on your kids, who wash it off in the bath, and then you have to wash the bath. Then you put the sandy towels in the washer and then you have to wash the sand out of the washer. It's the nightmare that never ends.

7. Never ending light

I need the sun to live, I really do. I love laying in the grass and feeling the warm sun on my skin, but in the summer that feeling results in sunburn in 15 minutes or less. And then the sun never goes away! It cheerfully wakes you up at 6:00 am when you don't want to be cheerful, and then it won't go away until 10:00 pm when you just freaking want your kids to go to sleep.

8. Shaving your legs and *ahem* swimsuit areas

I wear shorts 9 months out of the year, so I'm pretty down with shaving my legs, despite the olympic level contortions it involves. However, in the summer I HAVE TO SHAVE THE TOP HALF OF MY LEGS. *Shudder* This involves contortions on a whole new level that I do not appreciate. And then I have to wear a swimsuit almost every day because I live on the sun and the only way to survive is to be in the pool.


9. Bugs

Here in Texas there are bugs year round. The roaches never actually die no matter how cold it gets. However, in the summer the bugs reach a new level of gross. Roaches, bees, wasps, fire ants, mosquitoes, june bugs, ticks, beetles, spiders, cicadas, flies, gnats and more are all more prevalent in the summer.



Don't worry though, this post is only half true/half sarcasm so not only will I survive I might even like it a little bit.  As long as the roaches don't eat me.

Friday, May 29, 2015

How to celebrate the small victories



I've been having a hard time lately watching friends and family achieving different milestones. A new baby, a new job, a promotion, an award, it just seems like everything is happening to everyone else. While there a certain things I don't necessarily want anymore because of my health, it's hard to see other people living the life that I always assumed I'd have. I feel like like I'm standing outside in the rain peering through the window watching the world go by. It makes me feel like I'm completely isolated and on my own. So instead of feeling sorry for myself I've decided I need to celebrate the small victories. Because I have achievements, even though they aren't exciting and most people don't notice them.  For example:

- At the moment all the surfaces in my house are clean all at the same time. This is a rare achievement as it's hard for me to physically keep up with the mess makers I live with.

- I've been exercising more than I have in years. It's not unusual for me to walk a couple miles, even after I've spent my day hustling kids and cleaning floors.

- I've made it to almost all of my kids' end of school year events.

- I've been doing a better job of maintaining boundaries and saying no when I can't do something.

- I've mostly maintained a good attitude of late, despite having the flu, followed by kidney stones, followed by a cold.

After taking stock of my small victories I noticed that there were a few things to remember for next time:

1. Remember that it takes tremendous courage to get out of bed every day. No one applauds you for doing it, but by fighting back the pain and getting up to face the day, you are a warrior.

2. No one else may recognize your victories, but you deserve to reward yourself. Take a moment to remind yourself how awesome you are. Enjoy your happiness, you deserve it.

3. Remember that even a small win can show you the progress you have made and will provide you with encouragement to keep fighting.

4. If you are feeling discouraged make a list of all the things you did that day that were hard for you to accomplish. You will notice that you are accomplishing more than you think.

5. Focus on what you have done right, not what you have done wrong. Every day is a new battle when you have a chronic illness, so don't get down on yourself if things don't go the way you planned.




Sunday, May 24, 2015

Why me?



One of the phases that I went through at the beginning of my health problems (and admittedly still go through occasionally),  was the "why me" phase. This was not one of my most shining moments. My poor husband listened to my whining and crying for a long time. I felt like I was being picked on. As my friends were having babies, creating successful careers, and running marathons while nine months pregnant (seriously, so annoying) I was so sick I could barely get out of bed. My husband asked me why I was jealous of people having babies, did I want one? The answer was NO, but I wanted the option to have one. I also wanted the option to run a marathon while pregnant and then run another marathon one month after the baby was born.  I wanted the option to travel the world, to get my Phd, to have an awesome career, and those options had been taken away from me.  I was resentful that while everyone I knew was accomplishing something, I was a 27 year old with a body of an 80 year old.

Why me? For months I wallowed in my own self pity. There is nothing wrong with wallowing when things are at the worst, especially when your life takes a dramatic turn like mine did. However, eventually it helps to realize that bad things just happen in life, even if you're a good person. Sure there are people out there whose lives are just perfect and everything goes as planned and they accomplish all these great and wonderful things, but more often than not those people are the exception. As I talked with more people and got to know the struggles of many others I realized that sometimes I was on the other side of the "why me" question.

Why me? It took only two years for me to receive a diagnosis, for many it took decades.

Why me? I wasn't completely incapacitated by my illness and was never housebound.

Why me? I was able to find a doctor who took my insurance while many people don't even have the luxury of insurance.

Why me? I had a good support network of family and friends who for the most part believed and supported me.

I realized that there were some good things that were happening to me, even if they were smaller than I would like. Still it took me a while to give up on asking the "why me?" question and accept the positive things. I kept thinking just because other people's lives suck, why did mine have to? Why couldn't I be one of those people who get to lived charmed lives? Honestly, I think there is no good logical answer to that, because as my Dad always said, "life isn't fair" and "fair is where you go to see the pigs."  Sometimes bad things happen and sometimes we don't get lucky. but when things get rough maybe we need to focus more on the times that things do go our way. Even if it's a different way then we would prefer.


Thursday, May 21, 2015

This is your brain when you're in pain


My blog has just been sad lately, I blame the kidney stones. My brain is barely capable of full sentences at the moment, much less coherent thought.  So all I've got today is some pain humor.

This is your brain...




This is your brain when you're in pain...




If you don't remember the awesomness of Rachel Leigh Cook that I'm refering to, here it is for your viewing pleasure.



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