Medications: Day 1

That's my girl on her dad.

Whoa, so not prepared for the first evening on the new meds. Savella is the type of medication where you have to introduce your body to it slowly, and let it build up in your system.
My first mistake was thinking I could eat a Frosty from Wendy's and then take the first dose and be fine. Such was not the case.
About 30-45 minutes after I took the first and lowest dose, I had some nausea and dizziness. It was so uncomfortable that I had to lay down in my car (we were out grabbing dinner and running errands) while my family finished dinner and made a grocery run. I was definitely out of it, so much so that I was slurring my words and not making much sense.
When we got home, I chowed down on some ramen noodles and felt so much better. The combination of more food, quiet and rest helped a lot. After that, I did feel better. I rested better too. I have to say it was one of the better sleeps I've had in a long time.
Tonight will be the second time I take the lowest dose and I will be better prepared. I have over the counter, anti-nausea chewable tabs, almonds, and more ramen.
I start classes tonight, so I'll have to wait till later to take my second dose, but at least I know better how to deal. The first night side effects weren't great, but I know I have to keep trying so I can get better and I am still trying to be positive (although more than anything I want to go home, skip class, and curl up in my sweats with my dog- see photo- and a good book).

Best and Most Uneventful Tuesday

From my Instagram Album

Today has been great. Seriously, I have never felt better. I mean that in the sense that I actually feel like I know where I'm going with my life. That still sounds weird...I don't have any life altering plans. I don't even know what I'm doing for dinner tonight. But after today, I feel like things are headed in the right direction.
I saw  my primary care doc today- she is the best, by the way and I'm so glad I finally found a doctor I like in a healthcare network I like- and now I feel like things are going to sort of go back to the way that they were or are at least back on track.
I went asking for a referral to a rheumatologist and what I got was a plan of care that is going to work better for me- which is what I need. Since I have already been diagnosed with FMS and I don't have any serious complications or autoimmune diseases, I don't need to see a rheumatologist. Instead, I can see MY doctor. I don't have to get to know anyone new and I don't have to pay the $40 specialist co-pay. What is even better is that my doctor listened to me and came up with a plan of care with me, instead of just for me.
So here it is:

• I start a new prescription for the Fibro called Savella (I will post about what it is and where to read about it).
• In one month, I go back to see how I'm doing. 
• She is going to treat my ADD (my last doctor insisted I see a psychiatrist once a week and would not prescribe a thing- so we were talking a psych visit once a week plus the cost of a prescription, and reporting back to my PCP. Yeah, that did not go over well). 
• If I need to see a counselor (which I may, because oh my goodness, I have never actually dealt with the emotional impact of being diagnosed with a chronic pain condition), I can.

All of these things, plus the sunshine, the fact that it's almost Labor Day weekend (read: long weekend) and I start classes again has made me hopeful. I hope I can get back on track with my health. I hope I can regain some control. I hope I can once again focus on my degree. My doctor did exactly what I needed: she listened and came up with a plan with me. Now I feel like I can have [most] of my life back (clearly without the somewhat self-destructive behavior of my early twenties).

Wake Up Call

Just a little something I took while walking the dog.

Friday I went to be screened to be part of a study on Fibromyalgia, and I had my doubts about my qualifications for the study, but not for the reasons I may actually not qualify.
I thought, just briefly, as I often do that maybe I don't have Fibro- it's all in my head and the pain I feel on a daily basis is actually caused my stress, lack of sleep or some other such ailment yet to be named. I walked into the office thinking I would walk out with nothing to show for my trip except for a few spins around the campus parking lot. I didn't think the experience was going to be easy, but I didn't expect it to be so hard- or rudely awakening (in a good way).
No, I walked in casually, trying not to make a big deal about anything even though I was nervous.  The girl who I met with was nice, she asked me questions about my Fibro that were easy to answer; I felt at ease and understood the tests- I had read the information and I didn't have any questions, and I was totally unprepared.

What I didn't expect was the response I got from the program coordinator, who I think is a nurse, but I'm not 100% positive. She was kind and honest, which I appreciate. More importantly, she knew more about Fibromyalgia than anyone I have ever talked to about it has. And more importantly than that, she opened my eyes to my reality.

For years, I have told myself that I can do this on my own and that nothing has changed. I told myself I could manage my pain through diet and exercise, and I let my fear of the unknown get in the way of the truth. The truth is, I can't. I can't do this alone or "naturally." Now that I think about it, the idea is almost absurd.
There I sat, in the chair in the lab, ready to give a blood sample, find out the next steps in this process, and go home to have a glass of wine and watch the sunset from my patio. What happened was an outburst of tears, something that has become pretty regular, and a reality check. I sat there, and listened as the program coordinator told me I hadn't quite registered enough on their scale for the study- I was too hypersensitive and they needed more. I won't go into the details of the screening process, but needless to say, I was floored. I thought I was in a good place, at least in a functioning place. 
She was surprised to learn I am not treating my FMS with any medications, and even more surprised when I told her I was trying to "do it naturally." I felt my eyes water, the lump in my throat, and I knew I didn't have control. What she said next was probably the only thing I needed to hear- I needed help and I didn't have to go through this alone.
She proceeded to explain how Fibromyalgia affects the brain, the role of Norepinephrine and Dopamine, and how there is a basic chemical imbalance in the brain of a person with FMS. She explained that the problem is not just the pain in the muscles, but also the chemical imbalance in the brain that can often lead to increased hypersensitivity- both physically and emotionally (hence the sporadic, uncontrollable crying- no seriously, she said the tearfulness is due to the hypersensitivity to everything). Without treating the chemical imbalance, it is almost impossible to treat the physical pain. She confirmed that I do have Fibro, especially since I have been diagnosed by a rheumatologist, that it's not all in my head, but often FMS patients feel that way.
I walked out feeling a little shaken up, but realized I needed to get help. I realized I can't do it by myself, and that's really ok.  In the long run, diet and exercise are going to help and need to be part of my treatment, but it can't be the only form of treatment. I've been more aware since I left the office; I've paid more attention to what I am doing and am trying to stop myself from over doing anything- so I won't spiral into more pain.

I've already made my doctors appointment to get a referral for a rheumatologist; hopefully for one who understands Fibromyalgia, who won't refer to it as "a junk diagnosis," and will be able to find a medication that will work for me. I will be going back in a week for a second try at the screening, fingers crossed it will go well.

Friday Night and Everything is Alright

Alright, Alright

I have been looking forward to today all week. I know, it's Friday, who hasn't been, right? Summertime Fridays typically include a post-work week beverage (lately it's been wine), a little grilling, and sitting on the patio with the hubsters while the kids run around in the yard. I, like most people with a M-F/9-5, look forward to the ritual that is Friday. 

This Friday will be different though. Today, I will be leaving work a little early to be screened as a potential participant in a Fibromyalgia study.  I've never participated in anything like this before, although once considered it several years ago.  I didn't participate in the first study for one particular reason: the side effects outweighed the benefits of the risk, and that scared me.

Avoidance is not always the best medicine

After having a not so positive experience with medications in 2008, I've avoided pharmaceutical treatment of my condition. In part, my avoidance comes from fear; I've been afraid of the side effects, afraid of the cost, and mostly afraid that the medication just won't work. The other part of my avoidance is a combination of my dislike for pharmaceutical companies and my desire to treat my Fibro symptoms as naturally as I can. Let's be honest, there isn't a magic pill for EVERYTHING, if there were (and it didn't cost your weight in gold), we would have a cure for AIDS, cancer, and any other disease that plagues our world. 

Sometimes it takes exercise and eating right to be healthy, and the responsibility for our health falls on us. I don't expect my husband, brother, mother, or doctor to tell they are sorry for my health issues; they aren't the cause of my condition and technically, I'm not either. However, I am in control of how I treat my condition and am therefore responsible for making sure it doesn't interfere with my daily life too much.

So, I have been avoiding prescription medications for my Fibro for some time, relying too much on over the counter, anti-inflammatory medications (which are just not enough for someone with my high level of pain). 

Diving In

Friday. Today. That's when I will be screened for the new study. I won't be going into details about it (unless they say I can). I stuck my big tow in and weighed the risk of the side effects against the benefit of participating. The side effects don't seem as bad as the first time I considered participating (less likely to gain weight, sweat more, and feel dizzy). I'm going completely out of my comfort zone to try this, to be part of an experiment that may help the Fibromyalgia community and potentially myself.  The thing is, I'm looking forward to it. I'm not as stressed about the side effects, but am more concerned I won't qualify.  What makes me look forward to the study the most though, is that there is a potential for the pain to stop. I would love to know what its like to live on a pain scale of 2, 3, or 4, and not a 6 or higher. I'm hoping I get to experience that, even if it's only for a 10 week trial.

I'll let you know how it goes.

Damn you Fibro, I'm trying to write thesis!

I've been trying to work on my thesis for over 1 semester or just around 5 months. At this point I feel like I should give up and forget about the whole thing. I'm tired, achey and kind of out of it. I've had espresso and still can't shake the fatigue. I want to ignore all of that, and crunch down on my thesis work because I love what I want to do and want nothing more than to focus on it.

But I can't; my body isn't letting and the Fibro is winning. I don't want it to win.

Do I take my own advice and get rest? I'm not even sure I have the choice, but I want so badly to pretend I don't have this condition. I want the time back that I've lost. I want the memories back I can't seem to find. I want my masters without risking my health. I feel like I've been robbed of so much and I want so badly to have it all back.

Trying to find the strength to go on is half the battle for me and its made writing my thesis twice as complicated as I thought it would it be. I don't know if I'll finish. I hope that I can and I hope that will be enough to keep me going.

For tonight, I'm going to sink into my bed and try to sleep the pain away.

Remembering: of Myself, Part I

This how I started writing this post:
There are times when I feel great- and it shows. I wake up well rested, the dark circles under my eyes are almost gone, it doesn't hurt to put my feet on the floor when I get out of bed, and I'm not dragging myself through the shower just to throw something on at the last minute.  Those are my favorite days; those precious mornings I rarely get where I truly am putting my best foot forward. With Fibro, I don't get those days often, and so I try and make the best of them.

I had to stop there because I didn't want to lie, to myself or others.

I wanted to express the importance of what "my good days" look like; the days when my mind isn't clouded with Fibro fog and I generally feel pretty good. I wanted to focus on how hard it is sometimes to just get out of bed, but when you do and you feel good its important to let yourself reflect that in your outward appearance and demeanor. I really do feel strongly, at least for myself anyways, that it is important to look good when you feel good because that feeling carries you through the day and the positive attitude you share can spill over into days afterwards. But, I find this really difficult to share and to describe. It is by no means a simple task to do everyday and it is one I previously took for granted. The ability to get out of bed in the morning, to go through the motions of the day, when you know the moment you open your eyes that you aren't quite sure if your feet will hurt when they touch the ground, or if the water in the shower will wake you up or lull you back to sleep.

What keeps coming into my head when I think about remembering to love myself is to not forget who I am.  I find it easy to forget myself, and maybe that is also a symptom of living in the world we live in.  It's as though in my fog, in my struggle to live with Fibromyalgia and to just be human, I lose who I am and my sense of self is constantly being diminished or challenged. I know we all struggle- it's the human condition.  We live our lives trying to figure out who we are as a person in our social worlds (do you see what I just did there- sociologist geek shinning through!). I can't stand losing myself in the shuffle of life and I know there has to be away around that...or maybe that is just part of the struggle; to not forget.

I know I am a a bit different anyways- I always have been and have been described by others as "being cut from a different cloth". I have almost never felt like I could fit in anywhere, and yet find myself the constant social butterfly who can chameleon my way into any social situation (for better or for worse). Because of all these things, I find myself forgetting who I am in a sense.  I do not mean this literally, but I know when I am myself again because I sort of wake up. The fog lifts and my mind is clear again.  My convictions always become stronger and I remember that, even in the most difficult of times, I know who I am, what I believe, and what I am willing to fight for.  I am all at once reminded of how I got to where I am, and why I do the things I do. 


I remember and I refuse to let the Fibro, or anyone or anything, to take that away from me.  I have to remind myself that when I get dressed, I am beating my Fibro.  When I put make-up on it is my "war paint" for the day. When I stand firm in my beliefs and respond accordingly, no one is speaking for me but myself. 
When I remember, it is an act of both defiance and self-preservation.

Eating Well, Living Well

A Period of Adjustment

The first year of my diagnosis was weird. I don't know how else to describe it.  I went through a lot of basic adjustment, trying to get a grip on my health, to gain a new understanding of my body, and to figure out what the heck I was supposed to do next.  Prescriptions were the first thing that came along with the diagnosis. I remember being prescribed Tramadol for the pain; I can hear the jokes I used to make with a then friend of mine, "Take two and call me in the morning." I can laugh at it now, not that I didn't then, but after a while two didn't really cut it and it really wasn't funny anymore.

As many women do, I experienced a lot of body issues growing up; I was athletic (I played soccer and lacrosse in middle school and my freshman year of high school, and was a member of the women's lacrosse club in college), but not enough to have really sculpted muscles.  I'm on the short side, and have the frame for an athlete, but not enough drive for it to be a huge part of daily schedule (I'll talk about exercise in another post, because I, of course, have my two cents on it and it may surprise you). I never thought of myself as thin, just healthy, and that was all I really wanted: to look and feel healthy. When I the pain started, I found it difficult to move, to get out of bed, and just live. When I started on the prescription pain killers, it helped enough to get me to my job and to my parent's house, and occasionally to the grocery store for food and to cook for myself. In all honesty, I didn't really feel like it though. I found myself gaining weight here and there, whereas the year before I was eating healthy and going to the gym for a little cardio and strength training.

The more pain I was in, the more I stopped going to the gym and the more comfort food I let myself have.  Eventually, the pain medication I had was not enough, and I would increase my dosage (bad girl!). The combination of all these things lead to more weight, which lead to more pain- it's a cycle really, and it was trap I fell into.  The healthy image I wanted for myself was slipping away, and in 2008 it became worse.

I had started a new job, which ended up being really stressful, so of course my pain levels increased and my then prescription did little to alleviate. With my new job came a lot of time in the car and the need for excessive energy (it was a marketing job- I had to be a peppy little cheerleader for 90% of my day).  Since I was on the road a lot and needed "extra energy" (that's almost funny now too), I would down large amounts of energy drinks, and stop for a quick bite to eat at the nearest fast food joint- usually some place I could get a fully loaded cheeseburger. I even saw a new doctor to treat my pain, who put me a drug cocktail of Lyrica, Abilify, and Lexapro. I'm sure that combination works for some people, but for me, I found myself lethargic, my digestive track was messed up, and was almost unable to drive (not what you want when you are in marketing). To combat this, I chugged more energy drinks, switching to sugar free thinking it would be "better" for me. Ha! In one month, I gained 40 lbs and felt no better than I had before. I was told there was a period of adjustment, and everything would level out, and blahblahblah.  After almost three months, I had to stop. It wasn't working, I was miserable, felt unhealthy, and the cost of buying my meds was like lighting dynamite to my bank account. I couldn't afford any of the costs- financial or health. Beyond my physical discomfort from the weight gain, I started to feel like the inside of my body was a toxic dumping ground.
I had been prescribed physical therapy too, but at $100 a session (for 10 sessions), of which my insurance did not cover a dime, I just couldn't do it. I decided my money would be better spent at the gym with a personal trainer (and I will tell this story in another post, because it too is lengthy).

A few months went by; I was off my little drug cocktail, had started working out at the gym again (very slowly with well planned routines).  I started thinking more about what I had put my body through- the fast food stops, the super size energy drinks, the stress, and the medication. Once the effects of the prescriptions wore off, the feeling of being a walking toxic waste dump really grew on me. In October of 2008, I was terminated from my marketing position for not bringing in the numbers (I was told I was just not mean enough and there were no open positions for me to transfer into).  At first I was devastated, but after a week saw my chance to start over as a blessing in disguise. And so, that January I started working for a local natural food store, and my life changed once more.

"When the going gets weird, the weird turn pro."

I had already started paying more attention to what I was eating. I had started making my own food instead of going out to get it.  It took more time to do, but there is something about being involved in making what I was going to eat that brought my mind and body together. I was starting to feel a greater sense of harmony and balance, and more importantly I was starting to feel less animosity towards my self.  While I was working for the natural food store, I learned more about eating healthy foods, about how important it is to read the labels and to know where your food comes from. I felt like I had been completely miseducated about food up to that point. As a kid, I remember we didn't keep table salt around- it was only used while the food was cooking, but never as seasoning on the table. We didn't eat a lot of red meat, and we always had skim milk. I had always considered my family a healthy family; we didn't overeat and our diets were mostly well balanced. Overall, I felt like I had a healthy attitude towards food.

In the months that followed after beginning my new part-time job, I absorbed information about food and eating well.  I wanted to cleanse my body from all I had put into it, and I felt like I had the means to do so. So, I learned about label reading. I learned about organics versus conventional food. I learned about local versus supermarket suppliers.  I learned about different food movements- like vegetarian, vegan, raw, and gluten free. I learned cooking could be fun, and not a chore. And I learned that living in harmony with my body was so much better than trying to tame it and beating it down with medication. (NOTE: This is NOT the case for everyone, consult your physician about your pain medication and ways to manage your pain. I am only speaking from experience.)

I tried different dietary options, the most challenging being the raw foods diet, which I still want to do, but need to really focus on how it works (its especially tough if you have children). The one thing I have been able to stick to the longest and that helps the most is eating an almost exclusive organic diet. There are some things we don't buy organic because of the cost; rice for example is a staple in our home, and to buy organic brown rice would really break the bank, but we never buy "instant" rice.

If you decide to explore different diet options to help manage your pain, I recommend consulting with your physician and maybe even a nutritionist. Here are some things I have tried, reflected on, and might be an option for you.

Organic Food 

It may seem costly at first, or maybe you don't have access to organic foods (I know some small town grocery stores have a limited selection), but organic foods have become a key player in my pain management.  When I kicked processed food to the curb, and went organic, I not only started losing weight immediately, but I felt better just as quickly. Over time, my body has adjusted to the organic lifestyle, and I can tell when I'm eating organic and when I am not. The more I read labels on food packaging, the more I didn't like what I saw.  If you have never read the label on your food before start wit