Catching Up...Because, hey, its been a while

I've always been told that time flies when you are having fun. I wish I could say the last 6+ months have been fun, but I would be lying. In fact, it has been so long since my last post and so much has happened, I had to actually go back and reread what I last wrote. Time has flown by, but in that slow draining way that happens when you are coping with a chronic pain condition and the trials and tribulations of living in the world.

First and foremost I want to discuss medications and some "new things" I've encountered in my FMS journey. I've been taking the Savella for almost year and have continued with the same positive results; that is to say, my mind is still clear and I have recently had less pain issues. Thank goodness for that.

No Need to Study for These Exams

As for "new things" well...I've had 4 of 5 very new and interesting medical exams I wanted to post about. Before anyone cries "TMI" let me explain, because I have recently learned (after talking to my mom and following a Fibromyalgia support group on Facebook) that when you are diagnosed with one autoimmune disease (hypothyroid), it can lead to a diagnosis of others (FMS), leading to increased amounts of exams and medical tests to find out what in the heck is really going on (if anything).

First things first: Upper GI

I didn't post about the first exam I had back in February 2012, but I wanted to share. I hate a little bout with what ended up being a stomach virus, but was uncertain as to whether it was a gluten intolerance at the time. I noticed when I went GF I felt worlds better, so when I became very sick one day while at work, I thought "Oh no, I had a sandwich for lunch; maybe it was the gluten." So my doc ordered an ultrasound of my pancreas and upper GI. What was interesting though was my experience of seeing the inside of my body. It's hard to imagine the day to day complexity of our bodies and how they operate 24/7 to keep us healthy and moving. Having an outside insight into what my organs look like (other than medical illustrations) was fascinating. Of course I had a million questions, and felt completely juvenile asking them. I was like a little kid: "What's that?" and "Why?" and of course "What's it doing? Can I see?" Luckily, I was fine and there was just a really icky bug going around.

Then came the migraine: CT Scan

In the early November of 2012 I had a serious migraine. It last over a week; I could barely eat, was in constant pain, and just wanted relief. I ended up in my doctor's office on election day with my husband who had to drive me. My doc gave me a shot (in the rear no less) of phenergan and ibuprophen. I have no idea how much of each, but it was in shot form and eventually it worked wonders. And luckily for me, it didn't hit me all the way until AFTER I had the chance to vote-it happened to be election day and I will exercise my civil liberties, thank you! I can't remember the time frame after that, but I know I was sent home with a script for Immitrex and orders for a CT scan. Now, knowing my opinions towards taking meds from previous posts, filling two scripts was a big deal to me. I've gotten better, but sometimes am still bothered by carrying around a weekly plastic pill dispenser and a box of Immitrex "just in case". I don't remember the day of my CT Scan other than it was in late Fall and I was anxious about it. I do remember the scan itself because I was fairly disappointed. Not only was the scan uncomfortable- my head and neck felt very cramped and uncomfortable, and more pressure was on my head, making it hurt worse- but I didn't even get to see my brain scan. Boo. Again, nothing seemed out of the ordinary, so I was instructed to continue with the Immitrex as need. Boo again; I hate taking medicine.

The pain in my legs: Vascular Exam

Having Fibromyalgia makes you familiar with all sorts of aches and pains you never knew you could have. The stiffness that can occur can be even more alarming. It can feel as though your body just is refusing to work. So when my legs started aching and I found it difficult to walk up and down the stairs without begin completely exhausted, my doctor ordered a vascular scan. This may have been the most fun ultrasound/scan I've ever had. In fact, it was so interesting, I wish I had been allowed to record it. First of all, the tech takes images of your veins, so the image on the screen is of all the highways and by-ways in the human body, specifically of the legs. What made this exam really cool was the sound. Yes, that's right, you can hear the blood moving in your veins. Talk about a NOVA moment. For whatever reason, I'm fascinated by this element of the exam. Its one thing to see your organs and to know that they are functioning, its another thing entirely to hear your organs functioning that clearly. If I had a recording of this, I would share it. The best way to describe what it sounds like is a low, liquid, whizzing sound; like the sound of speeding cars, but more fluid. It's amazing, truly amazing. Again, no clots; all normal, all good.

The curse of the Thyroid: Thyroid Ultrasound

I have been struggling with my thyroid since I was 17, so it came as no surprise to me on my last check up that my levels were out of whack (but in a big, bad way). I was surprised by how badly my TSH (thyroid stimulating hormone) levels were off, but I was more disappointed than anything else. With my levels being into the 80s (that's right, its over 80 and the norm is something like 0.4), my doctor sent me for an ultrasound. This was one of the fast exams I've had. I preregistered with my hospital and was basically able to walk-in, check-in, and then go immediately back to the exam room. Ultrasounds tend to be the same no matter what is being imaged. The blue-gooey stuff was spread on the little scanner and the tech then proceeded to examine my thyroid. Hooray? I guess it was interesting. I was only able to view part of the exam because I had to turn my head away from the screen. I was also extremely tired (go figure, my body is practically killing itself) and the pillow was really comfy. I did ask the tech to show my my thyroid gland.
Normally, a typical, healthy thyroid gland looks like a small butterfly shape that covers the larynx at the front of the throat. Mine did not. My thyroid looked stretched out; like someone had tried to take a play-dough version of a butterfly and stretch its wings. I think this link pretty much sums up what mine looks like and give a good idea of what it should look like. **Sigh** My medication for my thyroid has been increased and I've now set a timer in the morning to remind me to take it before I leave for work. It's depressing, but its life, right? I'm hoping my six week check up will show better results because I'm not sure what will happen next if it doesn't.

The Dreaded...: Colonoscopy

Every time I time that word, spell check wants to change it to "endoscopy" and I'm like "If that's better, then let's do that instead..." I have not had this exam yet, but my doctor wants to rule out Crohn's. I won't go into details as to why, but I will say that FMS effects all part of the body, including the digestive track. I'm going to leave this part of the post just as it is. I'm not looking forward to this exam at all, but I suppose knowing is better than not knowing at all and I refuse to be ignorant of my health.


What all of these tests and exams have taught me, and in speaking a lot with my mom, I've come to learn that when you have one autoimmune condition, it typically tends to lead to another. I was diagnosed with hypothyroidism at age 17 and Fibromyalgia at age 24. I don't doubt that there is a link there. I don't doubt that all the aches and pains I have, all the other symptoms and scares are all related to those two things. I am trying to remain positive that I can control my symptoms, so that I can achieve all of the things I have set out to achieve. I've even started going back to the gym to control my fatigue. It's not been easy and I feel like I've had major life set backs; having these conditions wears me out most days. This last week was particularly exhausting (and depressing). Coping with all the exams seems like an easy task when compared to coping with the condition itself; I do what I have to do to make sure nothing gets worse. In the meantime, I get so tired, I can only manage the small things in life: getting to work, making sure I'm presentable, and getting my bills paid on time. I'm grateful I can call those things "small" and even more grateful I have the support of my family, and the health insurance to cover all these medically necessary tests. I can't imagine what it would be like if I had no one to rely on and no insurance to cover my medical expenses. I know others are not as lucky as I am.

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.

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.

Departure: The end of one journey, and the start of another

I have moved and traveled for the majority of my short life. I was born in Texas and moved to Kentucky, Virginia, and Maryland before I reached my freshman year of high school. At the end of my sophomore year, my mom moved to Montreal, where I lived with her for a year before moving back to Maryland to live with my dad for my senior year of high school. After graduation, I wanted to move back north, and found myself in the Eastern Townships of Quebec for 4 years of college. In college, I moved from campus, to an off-campus apartment, and then back to campus again. During that time, my dad and step-mom moved to Indiana to care for their aging relatives, where I joined them after graduating. I am no stranger to moving, relocating, and starting over, and have always considered myself able to adapt to new things in my life with ease. I dreamed of living and working in Paris or London, enticed by the idea of big city living, in foreign places; I day dreamed about holidays spent in traveling through Europe, possibly going to Southeast Asia and all points beyond. There were no limits to where my imagination could take me, no journey I wouldn't embark on if given the opportunity; I knew where my roots were, but I wanted to see how far my wings could take me. 

It was 2007, and I was waking up for work. My alarm had gone off, and I had just begun to open my eyes to the sunshine that had flooded my apartment. It was almost summer, and already getting warm inside and out of my one-bedroom. I had the brief flickering thought that I was possibly late for work, and as the panic set in I realized I would never forget this morning. I thought I was going to scream, but I wasn't sure that would really resolve the intense pain I was feeling. It didn't take long for me to realize the cause of my intense discomfort; my arms were crossed tightly across my body, my hands were clenched into fists and locked shut, my jaw was locked closed, and my legs were bent at my knees. I felt like my body was a discarded, crumpled piece of paper. I'm not sure how I managed to come untangled. I'm not even sure now how long it took, but it felt like hours before I could put my feet on the floor and drag myself to my shower.

The next few hours are fuzzy, a now common occurrence in my life. I remember driving to work almost two hours late, explaining to my boss over the phone the intense pain I was feeling. I remember my tears were hot streaming down my face, and I was grateful for the flexibility in our office- I was wearing jeans and no make-up. I remember turning around when I was almost to work, convinced by my boss to call my doctor, stay home for the day, and rest. I remember the short burst of relief I felt when my doctor managed to fit me in that day, but my pain was still there. My doctor was able to give me a two week script for a pain killer, enough to get me by until I could see one of the three arthritis doctors she referred me to. When I asked what was wrong with me, she replied "It could be one of three things: rheumatoid arthritis, Lupus, or Fibromyalgia." None of my options sounded too good.

In between doctors’ visits, blood work, reading up on all three of my potential diagnoses, and waiting at the pharmacy for whatever remedies that could be supplied; I knew my life was changing. I felt like I was on a merry-go-round of emotions, contemplating my own mortality, doubting my sanity, and blaming myself and my actions for what I was going through (I thought my experience was part of some cosmic, universal punishment; my karmic fruit if you will). A few weeks later, my diagnosis was confirmed by a rheumatologist: Fibromylagia was the big winner.

That was the day I began my journey into something I knew nothing about- chronic pain. That was almost 5 years ago. I was 24.