Wednesday, July 29, 2009

You Can Relax Now

Have you ever watched "Inside the Actor's Studio" towards the end where James Lipton asks a set of ten scripted short answer questions? Well there is one question that goes something like this: "If heaven exists, what would you like God to say when you arrive at the pearly gates?" My answer is quite simple: You can relax now, there is no pain here and no worries, relax. How awesome would that be? Well until then here is a list of things that can help you to relax, at least for a little bit.

1. Candles--I always have a candle going when I'm in my room. My favorites are all from Yankee Candle and are Spiced Pumpkin, Spiced Cocoa, Creme Brulee, Vanilla Cookie, and French Vanilla. As you can tell I'm all about making things smell like I've baked all day long =) Savvy consumer hint: check out and see if there is a Yankee Candle outlet near you...I always make around three trips a year to our outlet just for Yankee Candle and save tons of money!

2. Hot tea-- I only drink Cozy Chamomile Herbal Tea and Mint Medley from Bigelow Tea.

3. Music-- My relaxation music is my classical playlist on my iTunes. It includes all of Bach's Brandenburg Concertos (2, 5, and 6 are my favs!), Clint Mansell (he composed some amazing songs, especially the song from Requim for a Dream), David Garrett, all the songs from the Harry Potter and Lord of the Rings soundtracks, and all of the Trans Siberian Orchestra songs. My playlist has a bunch of other pieces, but those are my go-to songs.

4. Books-- There is nothing more relaxing to me than getting lost in a fictional (or sometimes a nonfictional) world that is so different from my life and my set of problems. It's nice getting wrapped up in someone else's life.

5. Comfort Food-- Unfortunately none of my go-to comfort foods are healthy, but hey, they do the trick! =)

6. Baths-- Take a nice warm bubble bath surrounded by candles with soft peaceful music in the background.

7. Expressive Art-- This can take many many forms, but I tend to either write, scrapbook, or make art journals. Sometimes I vent out about the stresses of life or I just scrapbook about silly stuff.

8. Movie/TV Night-- Plan a relaxing night in your PJs with snacks while watching your favorite movies or television shows. My go-tos are Gilmore Girls, House, The Big Bang Theory, the Harry Potter movies, or the Lord of the Rings Triology.

9. Breathing Exercises-- The only one I find to work is this: breathe in the good and breathe out the bad. While I take a deep breathe in I visualize fields of flowers, lit candles, or a warm snuggly bed. On the exhale I breathe out all the pain, stress, and heartache from the day. It really does work!

10. Hug!-- Hugs are universally great.

What are you waiting for?! Go off and relax!

Monday, July 27, 2009

Do Doctors Deserve Our Money? I think not.

So today was my second appointment with my new pain management doctor, and I pretty sure it was one of the worst appointments I've had in a looonng while. My appointment was for 12:30 and they finally put me in the exam room at 1:20 (I was checking the time because I was annoyed), at around 1:45 they ask me to go back into the waiting room because another doctor's patient needed to be seen. What about me? I need to be seen too! So I begrudgingly go back into the waiting room and by now I'm literally in tears. I was in a ridiculous amount of pain this morning and the uncomfortable chairs and stressors at the hospital only escalated the pain. Finally they put me in a different exam room and she finally comes to see me around 2:00. It's been an hour and a half past my appointment. She says she's sorry and then promptly asks why my faces looks like it does. I respond in an exhausted voice, this is what pain looks like. She half-assed another apology. Then she told me to stay on the pain management regime and to come back in another 2 weeks. I ask for something for the pain and she tells me that she doesn't want to prescibe any pain killers because I'll get addicted to them. I don't think so. Regardless she saw me for about 10 minutes, if that. I left in much more pain than I arrived in and more frustrated than ever. Sounds like an awesome doctor's appointment.

I think I'm going to find another pain management doctor. I found that whole experience to be terrible and no one deserves to be treated like that. Isn't this a pain management office? Shouldn't you be trying to make your patients as comfortable as possible and make the experience as easy and pain-free as possible?

What really kills me is that the office has a policy where if you're late, you have to pay $100. Where's my $100? I was there exactly on time. She was the one who was late.


Sunday, July 26, 2009

My Most Hated Phrase: "We'll See"

We'll see if I feel up to it. We'll see if I can make it to (insert event here). We'll see, as long as I don't have a doctor's appointment. We'll see if the medication isn't making me drowsy, sleepy, or slow. We'll see if I'm not in pain after my menial chores or errands. We'll see if my classes are going to wear me out.

I hate it. I hate the phrase and I hate that I have to say it. It's my own personal clause: Jenn, she'll have to see.

I feel like I can't make even the most impromptu plans anymore. I feel like it's a constant tug-of-war game between my social life and my health. Things I used to jump at the chance to do are passing me by. I'm either in too much pain or my stomach is feeling less than up to an adventure. I can't win.

I miss the days where a friend would call me up to see if I wanted to go into the city (New York City) and I would immediately say yes, excited and ready for the adventure. Now it's a different story. It's bad enough that I'm missing out on cool experiences but I also feel like I'm slowly losing my friends. They don't get it. They can't even begin to conceive the kind of pain I'm in. They don't know what it's like to be in horrible pain day in and day out. So they just don't get why I'm hesitant to go out and do x, y, or z.

I've read other blogs where the writers have said that they've just had to switch things around, mainly having more gatherings at their house. This is a great solution...for someone with their own place and own life apart from their immediate family. It's harder when you're a teenager or young adult. I live at home...a very very small house that barely allows its three inhabitants to breathe. There is no room to have friends over. And my friends are in the same situations, so having a gathering at their house is out as well.

It's hard in this transitional phase of life. We're adults, yet we still live like kids. It's not so great for our social life. Therefore I find myself saying "we'll see" far too often for my liking and it sucks. It really does.

Monday, July 20, 2009

How You Can Make a Change!

Here's your chance! In May I decided to take action. Well my professor made me take action. We were assigned to take some form of political action. I decided to write a letter to my senator regarding the National Pain Policy Act of 2009. I approached this assignment like any other--just get it done. What I found out was that it felt really good to take part in making a change (and it took me all of 30 minutes to complete). The most recent post over at reminded me of this.

The National Pain Policy Act of 2009 has already been passed in the House and is pending a vote in the Senate. The bill has five main goals or objectives.

1. Address the barriers that can prevent proper care for those in pain, such as research, knowledge, fund, and patients feeling free to open up about their pain.

2. Expand the program of pain research at the National Institute of Health.

3. Create a grant program which aims at improving a health care professional's knowledge and ability to assess and properly treat pain.

4. Create a conference on pain.

5. Requires the Secretary of Health and Human Services to create and execute a national outreach campaign to educate the country on pain, specialists, treatment, and other options available to those suffering from pain.

To give you an idea of what you can say when you write to your senator, here's my letter:

Dear Senator (insert name),
I am writing to you in regards to the National Pain Care Policy Act of 2009, S. 660. This bill has been passed in the House and will hopefully be passed in the Senate as well. This bill has a few, very important goals. One is to address the barriers presented to those in pain as well as expanding the program of pain research at the National Institute of Health. An additional objective is to create a grant program which aims at improving a health care professional's knowledge and ability to assess and properly treat pain. Finally, section five requires the Secretary of Health and Human Services to create and execute a national outreach campaign to educate the country on pain, specialists, treatments, and other options available to those suffering.

As on of more than 76.5 million Americans suffering from pain, this bill is incredibly important to me. To put this daunting statistic in perspective; pain affects more Americans than cancer, heart disease, and diabetes combined, and it is the number one reason people utilize their medical providers. I am a twenty-one year old female who suffers from Fibromyalgia, a chronic widespread pain disorder. I deal with pain day-in and day-out. For people like me, who will never be without pain, this bill could be our shot at living a more comfortable life.

Not only will this bill tremendously help pain suffers across the country, but it will also cut costs, for under-treated pain drives up costs. This is estimated at $100 billion annually in health care expense, lost income, as well as lost productivity. Personally, I spend around $5000 annually in medical expenses, co-pays, treatments, and medications, and I have health care, not including a loss of productivity or income. This is an unnecessary cost and burden placed upon myself and many other Americans. It can be prevented with your help.

In conclusion, please support the National Pain Care Policy Act of 2009, S. 660. This bill has the potential to change my life and those like me.


Jenn Z.

So what are you waiting for? Go write your letters!

Sunday, July 19, 2009


I wasn't diagnosed with Osteogenesis Imperfecta at birth or at a young age like most people with OI are. My diagnosis came when I was seven, and it was a clinical diagnosis at that. There was no lab work done or anything. When I went for a second opinion the biopsy and DNA test came back inconclusive. The third opinion said that he was pretty sure I had it and I was better off going with that diagnosis since I would never have a true diagnosis of anything. Since OI is a genetic disorder we were always curious if I really did have it and if so, from which side of the family. Tonight I discovered that my four year old cousin has it. On the upside it reconfirms my diagnosis, on the downside it means one more person who has to deal with all the pain and suffering that I have dealt with. And for that I wish that I didn't have a more conclusive diagnosis.

Wednesday, July 15, 2009

Lessons and Life

Sorry I've been MIA lately, things have just been stressful, hectic and extremely emotional. As always we learn and discover things that haven't been thought of before when we go through tough times. My lessons-- friends can be amazing if you let them, you need to express yourself, and we really do need to take time for ourselves. Three big whoppers all at once.

It all started when things "blew up" with me and my boyfriend of two years. And by blow up I don't mean some dramatic event, but essentially we realized that things were really off lately. Looking back I realized that I was mostly to blame. Why? Because I wasn't expressing how I truly felt. Yes I would let him know that I was in pain and that I was sad/upset/fed up, but I never really explained it to him. And because of that we began to grow distant. He would get upset with me and I would get upset with him and honestly neither of us really knew why. We sat down and talked about it, well I mumbled incoherently through tears, but I digress. We decided that we would take a break and in order to give me time to get my stuff together. Well as soon as we said those words, everything clicked and started to fall into place. (We've since gotten back together =)

I realized that I needed to truly express myself and my feelings. What I've never realized or admitted to myself was that being in pain all of the time is ridiculously taxing mentally and emotionally. There was such a great disconnect in my mind. Yes I knew I was in pain but I never stopped to think about how that affects my mental state and my emotional state. What a breakthrough!

Once I realized that, I knew that I needed to start focusing on myself more. Take more "me time."

I also realized through this that friends can be truly wonderful if you allow them to be. I never really told anyone how I was really feeling because I was afraid that I'd wind up being the "Debbie downer." I just wanted to be normal. Well, if you sit down with a friend and express how you're actually feeling without editing the icky stuff, you'd be surprised how receptive and understanding they can be. I sure was.

It's exactly like what Jenni from says...we need to build a supportive team. And through this almost break-up I've started doing that. I now let my friends know exactly how I'm feeling. If they suggest going to see a movie and I'm not feeling up to snuff and not really down for sitting in agony throughout a movie, I'm going to let them know that at this time my body isn't ready to sit still for two hours, but I could be up for x y or z. It's really simply once you initially do it.

Onto the last lesson. This one was probably the most difficult for me. I decided that I had had enough of my doctor throwing random prescriptions at me without listening to me and I dumped him. So I made an appointment with a pain management physician at a local hospital and she seems pretty good. We've got a plan--Elavil, Lyrica (again), Zanaflex, and Lidocane patches. I'm not sure about all these medications but I'm willing to give it a go. I've also started doing "Body Balance" which is a liquid vitamin whose resorption rate is much higher than regular vitamins. In addition to this I've worked out a plan with my old chiropractor who is now willing to give me light adjustments every couple of weeks. (I can't have them as frequently or as "rough" as others because of my bone disorder, OI)

It's a start, I'm not sure if any of it is going to work out, but I'm excited about it and I am willing to try it.

Isn't it amazing how something can seem so horrific but can really bring such joy and happiness?

It's important for us young people to really communicate with others. Explain things in detail. Yea we might come across as weird, abnormal, freakish, hypochondriacs, a waste of time, etc. but we aren't! We deserve the right to feel stress-free, pain-free(ish), and happy. Unfortunately we're the only ones who can change that, we're the only ones who can make a difference in our lives. And it really does start with opening up and just talking. Make sure that those you surround yourself with know what you're going through. You can't expect them to understand and empathize if they don't know anything. My one friend told me that she had not idea what kind of pain I was in, she assumed that it was like her when she woke up with a crick in her neck or whatever. By simply telling her that my pain is different and in an attempt to describe it she now has a better grasp on what I deal with day-in and day-out. And I'm not saying that you need to share every single detail, but just open up the lines of communication.

I promise you, you won't regret it.

Saturday, July 4, 2009

I Dreamed a Dream

Has your disorder or disease ever stopped you from fulfilling your dreams or aspirations? I'm sure it has. I just spent the majority of my evening listening to and watching musicals. From the time that I was a wee little one I've been in love with musical theatre. There is nothing more magical than watching someone perform onstage. Ever since I was little I've always wanted to be a part of musical theatre. I was in dance classes, choir, orchestra, and plays. As injuries progressed each aspect was slowly cut out of my life. As I got older the pain would worsen and it would take longer for my back, wrists, and neck to recuperate. I would have loved to have focused my life on musical theatre, but it's not realistic for me to pursue that because of my phsyical condition. My body would not be able to take the rigourous lifestyle that would come along with it.

It's a tough pill to swallow, knowing that because of your health, you are not able to chase after your dreams, whether it be a music or dance career, an athlete or firefighter. All of these wonderful professions demand so much of your body and realistically you cannot have that occupation and physically okay.

Lately I've been really struggling with this concept. Living a life based on what my body can safely do. I want to be able to do all of the things I've dreamed of, the things that I am mentally and emotionally capable of doing. It stinks sitting on the sideline and watching those do what you've so desperately wanted to do. And this goes beyond a career choice. I hate basing my everyday decisions, such as going out with friends, or going into NYC, or going to party, on my health and how I'm feeling that day. It sucks, plain and simple.

There is a magnificent show currently on Broadway called In the Heights that talks about Latinos finding their place in the world and in their community. Some characters wistfully think about what their life could have been like if they or their parents stayed in their native countries, while other characters wish to get out of Washington Heights to move onto better things. I relate to it because I'm a sick girl living in a society where health and wellness are so greatly valued.

Do I suck it up and trek on or do I sit and take care of myself and potentially risk missing out on fun and important things? How do I balance being "sick" and being "normal"? Where is my place in the world?

Wednesday, July 1, 2009

Experience Serenity

Music plays such a huge part in my life, so it's not surprising that I turn to music when I'm having a bad Fibro. day or when I'm just fed up with everything. I find that it's so hard to stay positive when your body is telling you to never leave bed and the people around you don't understand what you're going through (as hard as they may try). So I've compiled a playlist that always makes me smile and breathe a sigh of relief. So I thought I'd share it with you =)

(1) "I Got the Sun in the Morning" from the play Annie Get Your Gun
(2) "Here Comes the Sun"--The Beatles
(3) "Innocent"-- Our Lady Peace (David Cook's version is cool too)
(4) "Good Day"-- Jewel
(5) "The Middle"-- Jimmy Eat World
(6) "Love is All Around (Mary Tyler Moore Theme)"-- Joan Jett
(7) "Carry On My Wayward Son"-- Kansas
(8) "These Hard Times"-- Matchbox 20
(9) "Float On"-- Modest Mouse
(10) "Smile"-- Nat King Cole
(11) "You Get What You Give"-- New Radicals
(12) "This Town"-- OAR
(13) "Downtown"-- Petula Clark
(14) "Stand"-- Rascal Flatts
(15) "Beautiful Day"-- U2
(16) "Stuck in a Moment"-- U2

I seriously recommend listening to all of these songs. Most of them have inspirational lyrics to them, but a couple just make me smile.

What about you? What do you do when you just feel like you can't move on? Do you have a special playlist too?