New Year / New Diagnosis

I am not sure if it is fitting or just plain mean that I was at the doctor’s office on December 31 and January 1. On January 1, I received the definite diagnosis that I have EDS, which stands for Ehlers-Danlos syndrome.

New Year New Diagnois

My Story:

Last year, during EDS awareness month (May), another blogger in a closed group that is for other bloggers who blog to bring awareness to health problems shared a post about the symptoms of EDS, and I thought “Wow, that’s me. It fits me perfectly.” However, even after talking to the blogger, I couldn’t figure out how getting diagnosed would help me. It seemed like a lot of trouble for no pay off. Like, there would be no treatment or difference in my treatments. I was in so much pain, though, I also couldn’t and can’t think clearly.

Towards the end of last year, my mom emailed me information about EDS because she thought that it sounded like me. However, at this time, I was (and still am) suffering from multiple, debilitating bursitis points, need PT, but the therapists injure me, and I’m always wearing 2-4 braces. Not to mention, pain has consumed my life. I am housebound. I have a few acquaintances who are more of a problem to have because they only see me when I am well, so they expect more out of me and don’t take my limitations into consideration.

I also kept hitting a brick wall when I went to orthopedic specialists. I would leave with a 45 minute lecture on fibromyalgia and no one would do any imaging on my problem areas or help me in anyway. I thought I was losing my mind. I really can’t count how many times that I left a doctor’s office sobbing because my hope for help had been crushed.

After spending some time on inspire.com’s message boards, reading the stories of other people with EDS, I realized that a diagnosis would mean that other doctors would take me seriously and treat me with respect. And if they didn’t, I could know it was them, and not me. Unfortunately, I have suffered a lot of emotional pain and physical pain because doctors didn’t take me seriously. As I’ve talked to other EDS patients, I have learned that they get taken seriously after they are diagnosed.

While geneticists can diagnose EDS, in the US, no one doctor treats it, which is why I went to 3 rheumatologists and a fibromyalgia specialist who all said my hypermobility was off the charts, but never thought that I might have EDS, which requires specialized physical therapy, at a minimum.

I chose to see a specialist who works with diagnosing and treating EDS patients. His entire practice is devoted to 1 or 2 hour long appointments to fully address all of the patients needs because EDS patients can be complex. I had the misfortune of being one of the most complex to come in. I do think that is because I am almost 28 years old and have been to every specialist under the sun without any relief.

My EDS:

I have features that overlap types I and III, but they are essentially treated the same. Type I just means that I bruise more easily and have elastic skin. I have hypermobile joints all over my body. During the examination, I learned that I was hypermobile in places that I didn’t know could be hypermobile, and all of the cracking left me a little bit sick.

I did a little research and found this:

For each individual with EDS, the clinical story is unique. There isn’t a single answer as to why an individual might have features of more than one type of EDS. The first step that they could take to sort this out is to visit a medical geneticist. It is possible that they might benefit from laboratory testing to confirm the molecular or biochemical basis of the form of EDS that they have. Sometimes, but not always, the testing helps to clarify the clinical confusion. It may be, however, that they have features of more than one type of EDS because they have a connective tissue disorder that hasn’t yet been “described,” meaning that the underlying protein abnormality or gene mutation is unknown. Future research studies will be necessary to answer the question. Answered by Melanie Pepin MS, CGC

So, your EDS won’t look like mine or anyone else’s EDS, which is why it takes an exam.

Overall, what I have is a connective tissue disorder.

I haven’t gotten very far into the treatment process yet. I am meeting with my local physiatrist tomorrow to start working on getting the MRIs that I have been seeking for the last year. I will also see my other doctor soon to change my medications. And finally, I go back to the EDS doctor next week to have custom braces fitted and meet with him again. Oh, and at some point, I need to find a physical therapist who will read a 200 page book and spend 40 minutes alone with me each week to use those techniques.

I am not an expert or a doctor. But, if something is wrong with your body, remember that you know yourself the best and that you have to advocate for yourself. I haven’t been an EDS patient for long, but I’ve been a professional patient for a long time.

Anyway, I wanted to share my story, so readers if anyone else is struggling with hypermobility and or unexplained pain and thinks they may have EDS, I want to encourage them to bring their concerns to a trusted doctor. [Sidenote: I had plenty of doctors tell me not to waste time getting examined because it would hurt and be a waste of time because they didn’t believe that I had it, when I have a severe and complex case. Once of the doctors that discouraged me had only met me once and just looked at my knees.] Also, do your own research to bring to the doctor. My great doctor didn’t know the process about how to get diagnosed. You don’t go to a rheumatologist. I waited two months to see one and get laughed out. You need to get an appointment with a geneticist ASAP.

If you think you have it, please look into the symptoms further, and approach your most trusted doctor.

I recommend going to your local EDS support group and joining inspire.com to ask about the best places to get diagnosed.

Please note that comments with links that are not relevant to the discussion will not be approved. Personal signatures with blog URLs will be deleted. Please use the Disqus profile to add your blog’s URL, so that I can find you.

Categories: EDS, Health Tags: ,
Rethinking Hospitality


Rethinking

I know that I see a ton of great blog posts that address opening your home and serving food as a way of showing Biblical hospitality. There are a lot of verses that support the home as the center of Christian hospitality. (Here is a great resource!) As we just passed Thanksgiving and are getting close to Christmas, I would like to address some other ways of thinking of hospitality.

There are a myriad of reason that people are unable to leave their homes or travel to your home. Some of these people may seem perfectly healthy, but invisible illnesses or social anxiety can contribute to isolation. According to the CDC 1 in 2 American adults suffer from a chronic illness. Not all people are housebound, but sometimes it can be difficult for people to make it to dinner after working, on a bad day, or a flare in symptoms. The CDC says that a quarter of people with chronic illnesses have significant limitations in their daily activities.

I would encourage people who read this to think about their peers, their neighbors, coworkers, and members of their churches. They may be people that you interact with on a daily basis–people who you see every Sunday morning–people you wave to as you go to work. What you might not realize is that attending church on Sunday morning wipes them out for the rest of the day; working a full day is more than they can do without damaging their health; or that you wave to them in the neighborhood, and they really wish that you would be a friend because being sick is very lonely. As I get older, I know that family is so very important, but there is still the 26 year old in me who wants friends. I want girls to laugh with, talk about make up with, and generally have a good time. My “good time,” though, looks a lot different than it did before I got sick. Now a good time is a movie night, not trying to get to three Christmas parties in one night.

I know that when I was in middle school, my Sunday school class would go visit the church members who were homebound; however, there are many people who are much younger that need some extra attention and care. I know that no one purposefully leaves their 20-something friends out, but not every 20-something has the physical capabilities that other people have.

Tips for Hospitality:

+ Be understanding when someone has to cancel at the last minute.
+ If you know someone is sick, offer to bring them food. If they don’t need food, just the offer can bring them a lot of joy because they won’t feel abandoned.
+ Try to plan events that would allow a sick person to be more comfortable. A dinner that is drop in or not on a Friday night would be a good alternative.
+ Ask your friend how you can help them! Maybe they would like a Christmas tree, but decorating the tree might pose a problem. Bringing cookies, sharing some hot chocolate, and decorating a tree would be very fun. They may need help shopping for Christmas gifts, wrapping presents, or even unpacking the Christmas decorations.
+ Meet your friend for coffee/hot chocolate. Sometimes it is nice for a sick person to get out of the house, but they can’t be gone for long. And one on one might be better for some people.

+Think about non-food centered, restful activities:

-Christmas movie night
-Ornament decorating (this allows for sitting down and standing up as needed)
-Assembling gifts for charity (example: Operation Christmas Child, etc.)
-A relaxed game night or afternoon. Something like Apples to Apples or Scategories. Laughing is great medicine. Prolonged strategy games can be too exhausting.
-Anything that is on a Saturday or Sunday afternoon might be easier for people who have a hard time getting up and are exhausted by the evening.

People suffering from chronic illnesses are also likely to be very isolated. So, if someone who is chronically ill has you in their life, they are very blessed. You can easily increase the blessings in their life by being purposeful in showing them hospitality in the season of celebration.

Categories: Cervical Dystonia, Health, Holidays, Sick, Tips
Thanks, Everyone!

I just wanted to throw up a quick post today to thank everyone for their kind words on my “shot day.”

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I’ve been having “shot day,” now for several years. It never gets any easier, but I was encouraged by all of the comments, texts, emails, and tweets that I received. My friends know that I get my shots and that they hurt, but I’ve never sat down and laid out what the day looks or feels like before.

My life revolves around these shots. I live my life relative to when my last set was and when my next set will be. I even scheduled my wedding so that my neck would be at its best. I’m not kidding about people asking “how much longer until your next set?” when they see me feeling unwell.

Mostly, though, what really helped me on Monday was the extra encouragement. I think that when I’ve asked friends to pray for me, they don’t know much about what they’re praying for. I hope they read Monday’s post because I want people to know what dystonia does to those who are affected. Botox is a wonderful help, but it doesn’t work perfectly and it’s a painful process. It only reduces pain. Nothing can eliminate it.

Again, thank you from the bottom of my heart to every single person who has reached out to me this week.

Categories: Cervical Dystonia, Health Tags: , ,
Fave & Easy Recipes: Losing Weight

These are a few of my favorite recipes that my husband and I have been making since I embarked on my weight loss journey (which you can read about by clicking the link) in January! These are just things that we make–I also eat a ton of fresh vegetables, yogurt, cheesesticks, and Grazebox snacks to keep me full throughout the day!

favorite recipes

{I know that I am not a food photographer, so I won’t even try!}

Breakfast:

Taste of Home Breakfast Casserole: My husband loves this one. I started out my journey by having this for breakfast. It’s one of my favorite things, and I still eat it as a treat. If you’re starting out and have a higher calorie allotment, try using full fat sausage to get used to this creation, instead of whatever you were eating before. Trust me, it’s better than fast food. Now my husband has reduced the milk to 1.5 cups and adds half a bag of spinach (chopped) to the recipe. This one freezes particularly well, if you pre-slice the servings.

Egg whites & Veggies: No recipe. Most mornings, it’s just pouring some egg whites in a bowl, adding frozen vegetables, and microwaving!

Entrees:

Mexican Quinoa: We tried a bunch of variations, but this one has been our favorite. It’s the most flavorful!

Mushroom Kale Lasagna Rolls: Especially if you plan on freezing this, don’t overfill the rolls. We do a thin spread to cut down on calories and make it easier to freeze. Also, the original recipe is a little bland, so throw in your favorite Italian spices! I have something called “Italian Spice Mix.”

Rosemary and Mustard Baked Chicken: This one is simple to make! If you haven’t had time to prepare the day before, you can easily make this and serve it within the hour.

Slow Cooker:

Turkey, Sweet Potato, and White Bean Chili: When you click this link, you’ll notice that it’s actually called “No Bean Turkey and Sweet Potato Chili,” but that just wasn’t good enough for me. I was highly disappointed the first time that we made it because it called for 20 oz of ground turkey, but only made about 4 decent sized servings. Instead, I double all of the vegetables and spices, plus add 2 cans of Navy Beans and cinnamon. The key here is cinnamon! You all won’t regret it!

Slow Cooker Garlic Sweet Potato Mash: I won’t lie. I eat this one as a snack. It’s so good!

Crock Pot Balsamic Pork Roast: We serve this on good bread–aka the kind from the deli. In the words of my husband, “I would pay for this.” So, I guess he means at a restaurant.

Snacks:

Skinny Chocolate Chip Buttermilk Scones: I love this, but because I love it too much, it is on limited rotation.

Black Eyed Pea Dip: I have never taken this to a party where people did not absolutely love it. I can’t stress how good it is. Watch your portions!

tealdivider

I would love to make more of my own snacks, instead of relying on “diet” snacks and protein bars, but when I weigh the cost and time vs the convenience, the store bought stuff wins–for now. I definitely try to watch the sugar in each serving and make sure that there is protein. If anyone has great snacks that they make, please send them my way!

 What are your favorite “lite” recipes? Snack recipes?

Categories: Food, Health, Recipe, Recipes, Tips, Weight Loss
All Sorts of Fun

So, I had quite a few fun posts planned for this week, but on Monday night, I woke up with so much pain that I couldn’t go back to sleep–and I know a lot about pain that prevents pain.

Long story short, I ended up in the ER. Since I’ve had my fair share of scans over the years, they did every blood and ultrasound type test possible, but they were all negative. In the end, the scan showed appendicitis. Needless to say, the morphine shots had worn off at that point, so there was a lot of crying, calling my parents, and coordinating getting my overnight things and getting the dogs let outside.

I went into surgery much more quickly than originally expected, so I didn’t get to see my parents. Normal Sarah would have been freaking out, but I guess they gave me more medicine. My wonderful husband was with me through it all–he even snapped this pretty picture!

pre op

 

I will say that the hospital staff was wonderful. If you’re ever in the South Charlotte area and need an ER, shoot me an email. I can’t say enough good things about the staff or the facilities. If you have to get an organ removed, they will take care of you.

post op

 

I tried to take a pool/beach shot, but it wasn’t quite the same.

no cone

 

At least I don’t have to wear a cone, now that this is over. However, I gave her full permission to make fun of me. But, let’s be honest, my dogs do what they want.

2014-06-04 18.39.06

 

At least now I have an excuse to eat a lot of toast and bananas… covered in Nutella. But, on a brighter note, I’ll get a good head start on everything that I wanted to read during June. At the rate that I’ve been going, I might even type up a few real reviews. Also, I decided to watch finally watch Dawson’s Creek from the beginning on Netflix. I don’t think I ever saw the first season. Most of my memories of the show are from much later episodes. I’ll admit that I’m totally scandalized by Pacey in the first few episodes.

Has anyone else had an appendectomy recently? I just want the shoulder pain to go away! 

My grandpa did tell me that he had to spend 15 days in the hospital when he his removed, back in the 1940’s, so I definitely can’t complain!

Categories: Health Tags: , ,
Achieving My Blog Goals

When I started my blog, I wasn’t sure what I was doing. I liked to paint and do crafts, so I thought that I would throw up some tutorials. So, I really didn’t know what I was doing at all, but I did know that I wanted to raise awareness for Cervical Dystonia.

achieving blog goals

Not only have people contacted me to thank me for bringing awareness to something they don’t know about, recently, I received several touching emails from other people who suffer from Cervical Dystonia. Everyone who suffers has their own story of torture and how long it took to be diagnosed. It’s a long, hard road to diagnosis and even longer and harder once you start treatment. It’s a merciless tease when you feel better, grab life with zest again, and then fall back into pain. I’m still learning to live within my own limitations, but it’s hard.

I can’t begin express how grateful I am to connect with other people who want to swap tips for dealing with the pain or navigating life with such a fragile margin for error. One late night night and a little too much excitement can set my neck off with excruciating pain. The stresses of life (both bad stress and “fun” stress, like a vacation) make me sick. I desperately don’t want to let CD destroy my relationships, my job, and everything else that I hold dear.

Since CD is something that I think about almost all day, every day, it does show up on the blog a lot.

If you have a minute, there is a campaign with a deadline of June 26 to make September National Dystonia Awareness Month. Right now, there are not many doctors who specialize in this movement disorder. Furthermore, it can become completely debilitating. While getting disability is always very hard, a lot of people with Dystonia have an exceptionally hard time because people have never heard of it, even though it easily falls under the Americans with Disabilities Act. I am grateful for how far medicine has advanced and some people can control their symptoms with Botox injections and other complimentary therapies; however, it breaks my heart into a million pieces when I read other people’s stories of their own families dismissing their symptoms.

Here is some information about the petition:

Join volunteer Mike Delise in his efforts to promote dystonia awareness by asking the Obama Administration to recognize September as Dystonia Awareness Month.
We have just 30 days to generate 100,000 online signatures. If we meet this threshold, everyone who signs the petition will receive a response from the White House. Signers must be at least 13 years old.
To add your name today through a simple registration process, visit here!
Please share this link and encourage family and friends to add their name. We the people can make a difference!
Several dystonia organizations came together and voted to coordinate awareness efforts by commemorating September as Dystonia Awareness Month beginning in 2014.

The registration process took a minute or two. I guess they want to make sure that you really want to sign it!

Also, if you still aren’t sure what Dystonia is, here is a little bit from the petition’s website:

Dystonia is the third most common movement disorder after essential tremor and Parkinson’s disease, but remains largely unknown to the public. Dystonia is a neurological disorder characterized by involuntary muscle contractions causing abnormal, often repetitive, movements and/or postures.
Symptoms may impede the ability to walk (as in generalized dystonia or limb dystonia), control the posture of the head (as in cervical dystonia), speak (as in spasmodic dysphonia or oromandibular dystonia), see (as in blepharospasm), and/or write (as in hand dystonia). Many patients experience debilitating pain. There are numerous manifestations of dystonia, affecting people of all ages and backgrounds. Individuals are frequently misdiagnosed, which delays access to appropriate medical care.

In Other Blog News (!!!):

I am now accepting sponsors and ad swapping! I love the blog-friends that I’ve made, and I’m hoping to create a greater sense of community! I would love to swap ads and feature you on my blog! Email me or check click here. I would love to do giveaways to promote all of the blogs, but nothing is certain yet. If you are interested in that, too, let me know!

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I would love to hear about causes that are near and dear to your heart! If you want to collaborate on bringing awareness to a cause or sharing your story please email me or leave a comment! You don’t have to have a blog to share your story.

 

 

Categories: blogging, Cervical Dystonia, Health, life thoughts Tags: , , ,
Invisible Illness

You may have noticed my rant about medical advice the other day. Or maybe you didn’t. Either way, I wanted to address when illness is not always invisible, when it is chronic, and how much courage it takes. I am not writing this because I am brave. I am writing this because I cried on the way to work.

This is not a lifestyle blog about sipping mojitos (who likes those, anyway? Pass the Jack–pre-Cervical Dystonia!) and spending the weekend some place awesome. This is about writing my way through an impossible situation and maybe adding a little levity along the way.

Last week, my Cervical Dystonia was causing me a lot of pain. The only way that I could go to work and concentrate was to wear big lidoderm patches on my the muscles that were tight and pulling. These patches aren’t pretty to begin with. In addition, they don’t stay on well, so I have started using strong tape to hold them in place. I like to wear my hair down to cover it, but I was just feeling so poorly that I couldn’t bring myself to style it. A ponytail was the best I could do, if I wanted to get to work before noon.

invisible illness

 

I had to place pain relief and quality of life over my vanity. It was on that day, that everyone in my office (thanks fire drill!) that everyone could see my invisible illness. Most of the time, I like to think that it is invisible, but the pain is written all over my face and in the way I walk. My head tilts to the side. My hand tremors. I cry. It’s fairly miserable on a regular basis.

However, if you notice the picture, I can’t help but smile. I’ve been conditioned since I could learn–you always put on a happy face. No matter what. It’s exhausting. It’s probably the worst part of having an “invisible illness.”

invisble Collage

I want other women of all ages to know that they aren’t alone when they have to face the public looking disheveled because they’re sick. They aren’t alone when they have physical signs of a much deeper condition. It’s hard, but my dad told me that those patches were my badge of courage. It’s been hard for me to work while I’m so sick. Pushing through the pain to sit in a desk all day is so taxing on me–physically and emotionally. But I have to believe that I’m not alone. I’ve found an amazing online support group and am eagerly anticipating the national conference in September.

Categories: Cervical Dystonia, Health Tags:
Thanks, Non-Doctor

So, not to sound bitter, but I saw this wonderful picture in a Cervical Dystonia forum the other day, and I felt like it totally encapsulated everything that I feel:

 

hahahaha

 

To paraphrase a few other people who also have cervical dystonia, there is really nothing more annoying than unsolicited medical advice. I have a friend who has a similar medical condition to mine, so we share tips. But, that’s a special relationship.

Even if I was perfectly healthy, I would never see a chiropractor. I went one time and started screaming when he tried to chiropract-er on me after acupuncture. The acupuncture didn’t work, either.

Perfectly nice people inquire about my condition and I try to put it in the simplest terms possible:

My brain tells my muscles to squeeze, and my brain never stops. If I didn’t get Botox to weaken the muscles, my head would be stuck like <insert head tilt>.

So, no, I don’t want to try the herb that your sister’s brother-in-law’s mother used for her totally unrelated condition. In fact, at any one time, I am juggling 5 different strong prescription medications, so that’s a freaking terrible idea. When I normally know more about my condition than any doctor but my neurologist, you can’t tell me thing I don’t know.

 

/end rant

Categories: Cervical Dystonia, Health Tags:
Headaches and Anxiety

headaches

I’m not just writing this post as a filler post because I have a migraine, and I want people to feel sorry for me. I’m writing this because I was talking to a friend, who I would definitely describe as anxious (I would be too, in her circumstances), and she told me that she has had daily headaches for TWO years. Two years, folks. She’s been to the doctor about a lot of other ailments, but she’s never brought that up. She thought it was normal. She didn’t know it could be treated. It interferes with her work and personal relationships. It’s not just a “I think I’ll take two Motrin, please,” kind of headache.

lightpinkdivider

According to Migraine.com:

In the U.S., more than 37 million people suffer from migraines. Some migraine studies estimate that 13 percent of adults in the U.S. population have migraines, and 2-3 million migraine suffers are chronic.

Almost 5 million in the U.S. experience at least one migraine attack per month, while more than 11 million people blame migraines for causing moderate to severe disability.

Those are some serious statistics. I would venture to say that at least half of my friends suffer from migraines. Out of those, almost all of them suffer from tension migraines, like me. Migraine.com calls these Mixed Tension Migraines, which has symptoms that include:

Symptoms of mixed tension migraine

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Everyone has different reasons for their headaches, and everyone will need a different treatment, but living a life where you can’t even concentrate on what someone is saying because of pain is just not acceptable.

That brings me to my second point. Anxiety. Tension migraines/headaches/whatever you want to call them are generally caused by anxiety. Sometimes circumstances can create anxiety, but other times, you might just be wired funny, like me. Like my brain, it just doesn’t “get it.” Ashten, at Always Ashten, wrote this amazing post last month that really resonated with me. After reading the comment section, I think it resonated with a lot of people. And again, when I look at my own friends, I know that they get panic attacks, take prescription medications to deal with anxiety, and then also deal with their anxiety in some really unhealthy ways.

I think our culture that values success and achievement at the price of personal well-being is driving this epidemic. It has to be an epidemic. I don’t have that many friends, but almost all of them are stressed to the limits and looking to cope. Their mentors tell them, “run more,” or “you have it a lot better than so-and-so,” but those statements fail to address the underlying issues.

When the media (and I mean advertising), talks about relaxing, they talk about “letting loose,” and “having a good time,” but staying up all night and drinking a lot of alcohol are actually very bad ways to get the kind of relaxation that is required for relief from anxiety. I would know. I tried it.

I don’t know about you, but I get really frustrated. I have seen more doctors than I can count, and I’m still trying to find a long term solution. I spent Tuesday in the hospital getting an IV infusion of Depakote and a CT scan. At the time of writing, no improvement.

To sum it up, if you are in pain or having problems with anxiety and depression, get help. I am not trying to sound trite. It might take 2, 3, hell, even 10 tries to find the right doctor for you, but don’t give up. Now, people who know me, don’t think I’m a hypocrite. I am writing this post for myself more than anyone else. I am the first one to give up after a doctor appointment!

Categories: Health
Swimming the English Channel With Fibromyalgia?

chronic pain

I wanted to take a quick moment to talk about this amazing article I read in the Washington Post on Tuesday: Fibromyalgia sufferer takes on her chronic pain by training to swim the English Channel

Katie Pumphrey, 26, has had Fibromyalgia for almost 20 years. She wasn’t diagnosed until college. As someone who also suffers from Fibromyaglia, I can’t imagine going through teenage years with that kind of pain. It’s the kind of pain that turns you into a depressed recluse, if you are not careful. Even in my early 20’s, I would stay out all night with my friends, in horrible pain, just to be normal. Pumphrey had to endure all major social events in her life with that pain. Now I know my limits and don’t do things that will hurt me, but testing boundaries is what being a teenager is about, so I honestly don’t know how she survivied.

Now, I would like to talk about her training to swing the English Channel. Swimming the English Channel is a big freaking deal no matter who you are! Pumphrey’s intense training includes putting in:

25,000 to 30,000 meters a week now, plus running, core exercises and yoga, a training program she expects will peak at about 60,000 meters of swimming each week as the channel crossing nears. Though the workouts are taxing, the exertion actually helps reduce her pain, Pumphrey said. Staying in shape and producing endorphins and other natural painkillers by working out are two common strategies for addressing fibromyalgia, according to Edwards [medical director at Duke Pain Medicine in Durham, N.C.].

When I was first diagnosed, my doctor told me to go to the gym. I got active in pilates and yoga classes. However, not long after the Fibromyalgia diagnosis, everything was complicated by severe migraines that resulted in my Cervical Dystonia diagnosis.

Pumphrey told the reporter that training was important to her, so she could take control of her pain. If you’ve read my blog for long, you might have noticed that taking control of my pain is also important to me. It is so easy (and tempting) to lay down and give up. In some cases, people really do need to take it easy. I had to take it easy for almost two years. After that, I still go through time periods when all social activities are canceled because it’s all I can do to be alive.

I’m not saying that everyone should train to swim long distances in order to beat their Fibromyalgia or chronic pain. I do think that having a sense of control is important, though. Doctors steamrolled me, belittled me, and generally verbally assaulted me when I brought them my symptoms. I hope there is a special place in hell for rheumatologist who diagnosed me. He was cruel to me in every way possible. Thinking that it couldn’t get worse, I saw a second rheumatologist. Not only did she poke and prod me until the tears were pouring down my face, she yelled at me for not making the pain specialist appointment yet (anyone who knows anyone with Fibromyalgia can attest to the fact that their brains can get a little bit foggy with details, especially in the midst of so much pain), then I heard her yell at the nurse for even letting me make a second appointment with her. I didn’t know doctors could be like that!

crazy

Overall, not any one single doctor has been able to help me. I had to take control, with the help of my unrelenting parents. I am still seeking appointments from specialists and trying new treatments all the time. I had to beg for a simple lidoderm patch that has made a huge difference in my life–for almost a year.

Now I exert control over my pain by walking 10,000 steps a day, or even making it through a full work week. The control looks different for everyone, but when it happens, it means the world to the patient. So, if you know someone who is chronically ill, please encourage them to set a (realistic) goal and go for it. It can be the difference between emotional agony and freedom.

Please note, though, that there can be unexpected frustrations when simple goals aren’t met; therefore, even new hobbies are a great way to take control. When I got sick, I started painting. My paintings are not good, but I have a box full of them as a way to remember how I got through those first few months. I guess my point here is to go slow and do what is comfortable, but whatever you do, do something!

Categories: Cervical Dystonia, Health