Medication: One Month In Reflection

I wanted to write sooner, but life has gotten busy. School has picked up again, and I have been focused on reading (lots of reading) and writing (there should be more, but I'm a little behind).
After 1 month on Savella, numerous web searches for drug interactions, phone calls to the Nurse Practitioner at my doctor's office, and two follow up visits (1 for vein health), I think the prescription is working. I've adjusted my eating habits to have a heartier and healthier breakfast: either organic oatmeal or Greek yogurt and a raw granola bar (I love Fage Peach Greek Yogurt and KIND Coconut Almond Bars- plus KIND has this amazing mission to give back to the global community, which as a sociologist, I get so jazzed about).  I drink a lot more water than I did before I started the meds and am trying to maintain a regular sleep pattern.

From my mother-in-law's garden.

I don't have much more to say about the experience other than to express my gratitude and that's it's been really positive.  I am so thankful I was able to talk openly with my doctor about what I needed and wanted to try, for the staff at the study I wanted to participate in for giving me a wake-up call, and for my husband who has walked this path me.  I am grateful that I have the clarity of mind I had before my diagnosis. I am grateful that I can function better- no sleeping on the couch after work, no naps in my car at lunchtime, and less painful steps first thing in the morning.

Now that I am better than I have been in a long time, I have a few agenda items to take care of. First and foremost, I need to get back on track with my thesis. For that, it will take reading, writing, and editing. I'm planning to do a content analysis of social networking sites, like Twitter, to better understand how social movement organizations create a sense of solidarity with their supporters, activists, and followers. It's very interesting and difficult as a new Twitter user not to skew my own data by tweeting and retweeting some of the organizations I follow. I've been called a nerd for my interests and growing knowledge on the subject, but I really don't care. It's almost funny to me now to see the look on people's face when I try to explain to them what I am doing, or what I hope to do at least. I love what I'm pursuing and that is all that matters- well that and the end result.

The second most important thing I plan on working on is my health. I've been out of shape for some time now, and I'm ready to get moving again. I've scoped out a few gyms and am planning on joining the Y; their sliding scale family rates are great and we are on a budget- so that matters. Plus the kiddos can take swim lessons, go to camp, and have a free place to hang out while my husband and I workout (or attempt to).

Finally, I need a hobby that is about me. While I love to read and have read some great books (which I will write another post on), I really want to get back to doing the things that make me uniquely me. I miss taking photographs with my dad's old camera, I miss going to yoga class, and I really miss playing the piano. I want to save up to get my piano fixed (it was my great Aunt's piano and the keys need to be refelted) and then I want to take lessons again. I tried playing the guitar, but the I can't turn my wrists the right way without experiencing some pain. I think I'd also like to be crafty too; I'd love to learn to sew, repurpose old furniture, and make our living space more organized and functional (can you tell I play on Pinterest way too much?).

So that's what I've been thinking about and working on this last month. I hope by my next reflective post I have at least started one of things things and continued it for more than a week. I'll let you know. In the meantime, if you are considering talking to your doctor about medication for your FMS, consider your options, do your research, and ask a lot of questions.  It has been so worth it for me to come out of my medication naivety, and to start taking better care of myself. It's helped me emotionally and physically, and now I can start focusing on living again.

Shoes: The Hunt Begins

When I think of shoes, I think of many things:

YouTube videos:
"Ohmygod, shoes."

"Shoes; I couldn't stop thinking about them."- I kept thinking about the "Ultimate Dog Teaser" video that went viral a few months ago on YouTube. I couldn't stop laughing at it the first time I saw it, and I swear I laughed so hard my sides were hurting.  I must have watched it 10 times first time I saw it (obviously, I had to share it with my friends), and occasionally I find myself tempted to look at it again, just for the comic relief.

Quotes from In Her Shoes (thank you IMBD for the reference)
Maggie Feller: Shoes like these should not be locked in a closet! They should be living a life of scandal, and pasion and getting screwed in an alleyway by a billionaire while his frigid wife waits in the limo thinking that he just went back into the bar to get his cellphone. These are cute too.
Rose Feller: Please tell me you just made that up.
Maggie Feller: Look, if you're not going to wear them... don't buy them! Leave them for someone who's going to get something out of them.
Rose Feller: I get something out of them! When I feel bad I like to treat myself. Clothes never look any good... food just makes me fatter... shoes always fit.

The rush I get when I walk into a shoe warehouse like DSW and the smell of new shoes surrounds me, and I find myself wanting to try on everything- including shoes I would never consider wearing or would ever wear, but want to own just for the sake of owning. this usually includes shoes with some sort of animal print, formal shoes, and to-the-knee boots (you may know them by their other, less blog appropriate name "f*** me boots"). Whew, that felt good.


Now, I don't know how most people are, but I am a woman who loves my shoes. When I was in college, I was passionate about pink.  Pink makes my skin look fresher and clear, and it, as my grand-step mom Marion would say "It goes with everything." So, when I graduated, I wore a pink floral dress that had just a little bit of pink tulle under the skirt and the most magnificent, perfectly pink suede shoes.  The toe was pointed and the heel was about 2" high.  They made my feet look a little less hobbit-ish and my legs look a little longer. They looked great with everything- dresses, jeans, slacks (navy and black). I quite honestly think they were made for me.  In one word they were STELLAR. I will never forget them (RIP perfectly pink shoes). I wore those shoes through graduation, through the rain, to meetings, to bars, on dates and job interviews.  I wore them till they wore out, and when they did I packed them into a shoe box and said goodbye. I didn't know at the time that I probably would never find another pair of shoes quite like that and it may seem silly, but I have been on the hunt for another perfect pair of shoes since 2010, only this time my criteria has changed.

When it comes down to it, all I want to do for this post is talk about buying a pair of shoes that won't destroy my feet and cause me to spin into a Fibro flare. When I was younger, I never thought about how my shoes would impact the rest of my body, with the exception of whether or not the shoe just didn't fit- literally (and I guess figuratively too). 

Now that I've become more Fibro conscious, I am very particular about my wardrobe, especially when it comes to my feet.  For the last couple of years, I've primarily purchased flats and wedges for work. I've found these styles to sort of work for me, but they are always the best. Flats tend to cause pain in my heels and arches.  Wedges work well, but the balls of my feet can hurt and I find my legs get tired a lot faster (again, I try not to exceed 2" and never anything more than 3").  I also usually wear comfortable and sensible shoes into work, and then change at the beginning and end of each day.

Currently, I have a pair of gray wool blend wedges for the fall/winter, a pair of black patent flats for anytime (both from Payless), and a recently purchased but not yet worn pair of black patent wedges with a black and white patent bow I bought from TJMaxx (I think they are by Etienne Aigner).  I also have a pair of suede platform heels (3") that I wear for weddings.  When it comes to actually wearing anything with a heel, I get a little nervous for 2 reasons (and the first is ridiculous). 1) I am so self conscious about my weight and body that my wardrobe is limited.  I don't wear a lot of skirts and dresses, as much as I love them, and I usually wear darker colors to hide the 40 pounds I've put on since my diagnosis (I'm only 5'3", so any weight gain shows). 2) I'm nervous about the effect the types of shoes I wear will have on my feet and my overall level of pain.  Because of these reason, I usually stick to what's safe and affordable. Well, too bad so sad for me- this isn't working anymore and I'm going to have to branch out. Weekends, I still plan on sticking to my tennies, birks, and TOMS (unless attending a formal event).

So, I am on a mission: to find the perfect pair of shoes.
Here is my criteria:

1. Comfort- I have to be able to walk
2. Style- Following Marion's golden rule, it will need to go with everything (nude, black, gray or navy)
3. Style 2- They should be age appropriate- not too old and not too young. I know I have pain issues, but for Pete's sake, I don't want to wear a pair of shoes that look like I bought them off an old lady (no offense old ladies, I love ya, but I'm not there yet).
4. Comfort 2- I need shoes that will support my high arches and that won't pinch. 

Medicaition Week 1- So Far, So Good

Smooth sailing, Petoskey MI

I haven't had the clarity of mind that I have right now for several years. It seems odd to me that after so long, I could feel this way, and I am beyond grateful for it.
After 1 week of starting a medication to treat my Fibromyalgia, I am feeling confident that I can say I think its working.
Adjusting to the medication itself hasn't been easy; it's caused a lot of nausea while my body gets used to the meds. The first night was awful- so much that my husband invested in Dramamine, Nauzene, Pepto, raw almonds, and ginger ale all in an effort to make the nausea go away.
After my body adjusts to the increase dose (I'm still on the titration pack, and my doctor has me using two packs so that I get to the regular dose over 1 month rather than 2 weeks- which is brilliant), I feel better; I sleep better, my feet don't hurt when I get out of bed (so I'm not afraid to get out of bed anymore), and I'm finding my energy levels increasing.


I was worried about starting the medication when I did; my cousin was getting married the Sunday after I had just started and I was nervous that I would be out of sorts for her wedding. I think the trip actually helped me adjust more. I slept a little longer, had home cooked meals (we stayed at the Bay View Inn, in Petoskey- go there, you will thank me), and walked around town. I went to Walloon Lake, where Ernest Hemingway spent his childhood summers and even went on a ride in my cousin's speedboat. I was afraid I wouldn't be able to toast my cousin on her wedding day, but found that the alcohol didn't effect me that way I thought it would (I thought I would be instantly sick).

What I have found is that eating right before taking the medication helps reduce the nausea, and drinking plenty of water throughout the day helps reduce dry mouth (which I found increased when I started the meds). There are still some wonky side effects I haven't gotten used to: increase night sweats, and some mild irritability. I imagine these will pass with time.

Overall, I am relieved. Next up- adding exercise...and that pesky little thesis!

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.