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.

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).

Perspective: Sharing Words of Wisdom

Mind Deep: Loosening Mind's Bad Habits

Today my mom sent me a link to a wonderful blog she follows, after we had talked last night about relaxation practices. I told her I was blogging, what I was blogging about it, and what direction I want to go with my blog.  Last night it all made sense to me, as it had before I started blogging- my reasons for writing and sharing- and then today I was reading some amazing posts and information from the National Fibromyalgia & Chronic Pain Association, and I realized I am not doing enough to manage my own pain, not in the way I think I should. It shook me a little; how can I share my experiences if I'm not even really taking care of myself the way I should be or even could be. 

Only after I had opened the message from my mom did I realize I can't let negativity become rooted in my mind. My personal negative thinking was (and still is in some respects), feeds on itself and I am guilty of letting it.  I am now following the Mind Deep blog, and recommend that you check it out. Here is the post my mom shared: Mind Deep: Loosening Mind's Bad Habits.