Why I Publish Non-Dystonia Posts


So, I’ve been reflecting on why I blog. When I started blogging, I wrote a lot of reflective essays. My goal for my blog was to raise awareness for all types of dystonia, but specifically to connect with Cervical Dystonia patients. I had no idea where it was going to take me. A year ago, I never thought that it would look like it does now.

Eventually, though, I changed how and what I wrote, so that more people would read my blog. I was willing to do that because I really wanted to raise awareness for dystonia. I didn’t write paragraphs upon paragraphs anymore. I would take an essay and break it into a list. Instead of a thesis addressed by paragraphs of writing, I would “defend my thesis,” so to speak, with easy to follow bullets. I started to understand how visual people are, so I had to break things down into a few sentences at a time, which ruined my favorite part of writing – my own, unique voice and point of view.

Why I write a full lifestyle blog, instead of a singly focused Dystonia blog.

In fact, this post originally had a different title and went well over 1,000 words. So, I decided to split it into two posts and provide you with these handy bullet points. [If I could have made this a DIY post, I would have 🙂 .]

Why I Still Publish Non-Dystonia Posts:

  • There are other blogs about dystonia, but there aren’t many, especially those offering any tips that are derived from personal experience. Yet, I belong to a private Facebook group with over 2000 members who all have cervival dystonia, which is only one type of dystonia. I knew there was a void of personal experiences, and I could fill it by writing what I wanted to read when I first got diagnosed. So, I made concessions in my writing style to bring in more traffic. Traffic means that my site will be seen and noticed. In fact, I’ve had posts get picked up by Healthcare Advocacy organizations.
  • If you saw my Instagram post from Monday, you can see why I am going to continue to blog and put out the content that people want to read, in addition to the content related to dystonia. More people than just people with dystonia are suffering, so I at least want to offer a common experience, a listening ear, and maybe connect with them about some other interest because it’s miserable to think about your pain all of the time.
  • Blogging is fun because I’ve learned about photography! I am learning to play around with graphic design, which is something that I never thought that I would touch. I have always liked to paint and write, but I never thought of myself as creative until now.
  • I’ve read more blogs and learned more about different lives and viewpoints than I would have by living in my own bubble, here in South Carolina. It’s also amazing how much we all have in common, too. The human experience is amazing.
  • Blogging has made me more creative. I have more discussions. Real life conversations become blog posts.
  • Blog friends. You know who you are.

More to follow!

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Categories: blogging, Cervical Dystonia, life thoughts Tags: , , ,
Cervical Dystonia and Depression: Lessons From Search Terms


*I am not a doctor. This post is based on personal experience.*

Cervical Dystonia and Depression: It's Ok to Get Help

Since I started blogging, I have consistently written about my personal experiences with Cervical Dystonia. As I’ve accumulated more information on my site, I’ve noticed a huge increase in search term hits. I am happy that my blog has allowed me to connect with so many Cervical Dystonia patients because we have been able to share our tips on dealing with the physical and emotional pain caused by Cervical Dystonia. Also, I’ve been able to encourage newly diagnosed patients and share helpful resources with them.

Some of the most common search terms (that I can see) are:
cervical dystonia
cervical dystonia dry needling
why does ice help cervical dystonia
ways to ease pain from cervical dystonia

However, I am writing this post because this morning, I noticed the search term (twice):
if you have cervical dystonia if you want to fall down some stairs would it break your neck

If you searched that term, please contact your healthcare provider or call 911 immediately.

For anyone else who is searching dystonia and feels despair, tell someone. It’s ok to talk about it and get professional help. The diagnosis can be a relief, if you’ve been searching for answers, but it can understandably cause depression. You have a painful condition that is coming in and WRECKING your life. I can’t say that it will ever be the same again, but it can still be a good life.

I’ve been there. I’ve not wanted to live with the pain from dystonia anymore. It does feel like the pain won’t end. Sometimes it take a long time to get your Botox injections scheduled, placed in the right spots, and at the appropriate dosage. It takes time to figure out what other therapies will work for you, like ice, heat, massage, or another oral and topical medications.

Pain management is an art, not a science. Every person needs to work with a doctor to try their own plan. There are tons of resources on the internet about ideas of things to try, but everyone reacts differently to medicines and complimentary therapies. It will take time, but pain can be managed over time. There is no quick-fix, but I encourage everyone to explore all of their options with an experienced doctor. I have a pain management specialist who will refer me to other practitioners (like physical therapy), if that’s what I need, but she oversees all of it. She’s the one who will prescribe lidocaine patches, if I want to try those because I don’t want to take anymore pills, when the pills drain the life out of me.

If your pain is not being managed well, you may need a new doctor. Maybe you’ve been in pain for years and years, but you only get pain killers and you’ve hit the limit of what you can take. That happens! The pain killers could only be masking the fact that your are not properly diagnosed and receiving adequate care for your dystonia in the first place.

While you are waiting on the pain to be managed, you can go through a ton of emotional turmoil. In fact, even after you’ve “managed” your pain, to use the term loosely, you can still have anger, frustration, and depression that stems from all of the pain you endured. Cervical Dystonia can touch every part of your life. So, please, know that you are not alone, it can get better, and it takes time.

Additional Information: Here is a great article that I found that explains the connection between depression and pain!

Both depression and chronic pain share some of the same neurotransmitters and nerve pathways. So pain is worse, function is poor, response to pain treatment is diminished and their prognosis is worse until they can get their depression under better control.

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Categories: Cervical Dystonia Tags: , ,
Cervical Dystonia Pain Relief: 5 Things You Probably Didn’t Know

Cervical Dystonia Pain Relief: 5 Things You Probably Didn't Know
Cervical Dystonia Pain Relief:

I wrote about 9 Ways to Ease Your Cervical Pain a few months ago. I thought that I should give out some more tips!

*I am not a doctor. These tips are drawn fom my personal experience, which has been a lot of trial and error*

Neck Support: I saw another instagrammer with this AMAZING bed wedge. I have a recliner, but it does get old sitting in the same place every day. Additionally, buying this Spine Reliever Bed Wedge is much less expensive than buying an entire recliner, if you aren’t ready to make that investment. Some of the Amazon reviews complain that the bed wedge is too soft, but I think it is perfect if you have dystonia. It gives you enough support to sit up comfortably, but is not like a board. If you want a little more support for your head, so you can use a laptop or read a book, simply add another slim pillow behind your head.

Stay Active: Sitting for prolonged periods can be really bad for you! It’s so tempting to sit in the recliner all day, but moving around just a little bit each day will keep you moving for the rest of your life. Losing a little excess weight, strengthening your bones (preventing osteoporosis) and enjoying the fact that you can still move around can boost your mood.

Take Care of Yourself: Self-care is super important. You need to be kind to yourself and show yourself some grace. I struggle with this, myself. Here is a great blog series that you can read about self-care. Maybe even do some research on your own. When you lose your health, you have to grieve. I recently learned about that concept. It has been interesting to think about. Here are a few workbooks and books that I’ve purchased (I haven’t been able to process through all of them yet):
The Grief Recovery Handbook
Managing Chronic Pain: A Cognitive-Behavioral Therapy Approach Workbook
Managing Pain Before It Manages You
Cognitive Therapy for Chronic Pain: A Step-by-Step Guide
The Pain Survival Guide: How to Reclaim Your Life

If you are able to leave the house and fit it into your schedule, don’t be afraid of professional help.

I won’t write anymore about it because I’m not an expert, but plenty of experts have written about Chronic Illness and self care on the internet and in books!

Icing & Heat: I mentioned this before, but I have a few new suggestions! I discovered (thanks to the wonderful Facebook Cervical Dystonia Support Group) this ice pack that I use to cover my entire cervical region! It’s called the Elasto-gel Cervical Collar, which is wonderful. I wish that it would stay colder, longer, but the Velcro on it is almost life changing. I used to have to ask someone to help me place ice packs in the right spot and the quickly lean back and use pillows to keep the ice pack in place. Having Velcro gives me freedom and independence. I’ve also noticed that moist heat helps my pain more than dry heat. Moist heat comes from microwaving heat packs. An excellent example is Neck and Shoulder Wrap.

Medication: It is important to work closely with a pain specialist to explore all of your pharmaceutical and non-pharmaceutical options. If you are already getting Botox from a movement disorders specialist neurologist who uses an EMG, a pain specialist can prescribe medications and give you new ideas! They can also administer trigger point shots, which help me so much! My pain doctor is also full of non-phamercutical ideas to approach pain, too.

from my personal experience, I would caution against is over-using any one medication. Building a tolerance is always a hazard, so I like to use them only when I’ve exhausted all other options, so that I don’t have to go up on my dose. The biggest reason I am cautious is because doctors don’t like to give out higher doses, and then I don’t have to beg for a higher dose, in addition to concerns about building a dependence . But, sometimes pain is very acute and needs to be addressed quickly! You deserve a good quality of life. Combining multiple approaches to pain works the best for me

Along with the medications and working with the pain specialist, remember that you must be your own advocate. Come to the appointment with a list of current medications, which ones are working and which ones aren’t, new symptoms, questions for your doctor, or things that you would like addressed before you leave the appointment. When you’re in pain, it’s so easy to be shuffled into the appointment, mumble some answers, and then accept whatever the doctor tells you – only to get home and realize that you never got to say what you wanted to say. So, when you are feeling well and clear-minded, write down the things that you want addressed during the appointment, not just what is easiest for the doctor. You deserve the best treatment, but you might have to fight for it.

This post contains Amazon affiliate links.

What do you do for pain relief? I would love to hear your experiences because I like to try new things!

You can find more dytonia-related posts here.
contact me dystonia

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: Cervical Dystonia Tags: ,
But You Don’t Look Sick: An Open Letter (Updated)


So, I’ve been sick a few more months than when I originally wrote this post. Every single day, I learn more about what it’s like to be chronically ill and live with all of the ups and downs related to my conditions, as they take turns flaring and receding. I wonder if the conditions use some sort of lottery system, but I digress. Anyway, I’ve put some more thought into this post and updated it, hopefully for the benefit of all the sick and healthy people everywhere. As I talk to more people with chronic conditions and see that the perception of what being sick looks like has an impact on more people than just me. It affects so many areas of life for every chronically ill person.

You Don't Look Sick: An Open Letter- I originally published my open letter back in October. Since then, I have thought more about how invisible illness affects more people than just me. So, I've rewritten the original post to talk more about how the assumption of what illness looks like has a broad reaching effect in the areas of support (both emotional and financial), treatment with dignity, and access to medical care. Check out my new thoughts on how the phrase "you don't look sick" can hurt someone and generally does a disservice to everyone who suffers from an invisible illness. It is time to reassess what chronic pain and chronic illness looks like in our society, so that people can receive the necessary medical attention. #spoonie #chronicpain #chronicillness #invisibleilness #fibromyalgia #POTS #CFS #depression #ptsd #dystonia #dystoniaawareness #notalone

Hi there,

You may have just met me. You might be my good friend. You might even be my family member. I just wanted to take a moment to talk to you about the phrase “you don’t look sick.” You know what, you’ve never seen me at home alone. So, yeah, I don’t look sick right at this second. To borrow a phrase from the ever wonderful writer Ariane, my pants should not have to match my pain level. Sometimes, putting on a dress helps my mood, even if it doesn’t help my pain. I’m sorry if that messes up your idea of looking sick.

I don’t mean to sound ungrateful for what you mean as a compliment, but it is kind of insulting. The phrase you don’t look sick minimizes and dismisses my pain. So, if we just met, and I opened up to you about my painful neurological condition (and I didn’t even mention the other conditions with which I live), please don’t think you’re complimenting me. If you follow it up with “but you’re so beautiful,” you are implying that being sick should make me ugly. Maybe you think I’m exaggerating my pain because you perceive me as beautiful. Beauty fades, but my pain won’t.

This letter is not about only me, either. By telling me that I don’t look sick and that I’m beautiful, you are reinforcing the idea that if anyone wants his or her medical conditions taken seriously she should look a certain way. Maybe I should not take any pride in my appearance if I am sick, so your conceptions of illness and my illness will fit together. The preconceived notions of what being chronically ill looks like is what prevents people from seeking the medical attention that they need, receiving the benefits that they deserve, and being treated with dignity. There are people who cannot even get the much needed family support during their illnesses because their families do not understand that being sick can present in many different ways. Sick looks different for different people on different days.

I would like you to know that it probably took me twice as long to look passable for public viewing than it did before I got sick. Instead of wearing contacts, styling my hair, putting on make up, and wearing an outfit that isn’t entirely from the “active wear” department absolutely every day, like I did in the past, I only do that once or twice a month. [Side note: We can talk about the irony of wearing active wear in my condition later.] You don’t see me at home. You don’t see me the way my family does. My situation is so excruciatingly embarrassing that even my doctors do not see all of the pain. My mask is reinforced by years of negative experiences with showing vulnerability. I dread necessary doctors’ appointments because I know that it will mean that I have to take a shower with energy that I do not have.

I only let you see what I want you to see because you would be uncomfortable with the truth. Plus, I do not want to be humiliated. I want to be treated with dignity. So, I only leave my house when I can be presentable, which is not often. Therefore, I become isolated and lonely because I don’t have energy to make myself look like my former self. There should not be any stigma when I can’t wash my hair because I am that sick, but there is judgement because you can’t see my whole story in a glance. That’s why you only see me when I don’t look sick.

If you are another person with Dystonia, I feel really bad for you. We share a common bond, which I thought you would appreciate. But when you tell me that I don’t look like I have Dystonia, just because Botox helps me to hold my head straight for 8 out of every 12 weeks, you are insulting me, too. I am sorry if Botox doesn’t help you hold your head straight, but I experience life altering pain, just like you.

I also want to take a minute to address a few more problems with the phrase you don’t look sick. You may know about my illness from my blog or from me telling you about it. Either way, neither on my blog or in conversation, do I lay out my entire medical history. I can’t even explain it all to a single doctor during an hour long visit, even if I bring notes and timeline. I don’t tell you about the hours and money that have gone into biofeedback and neurofeedback, the tests that I’ve had run, and all the extra things that I require to maintain a manageable pain level. I’ll never tell you how many doctor visits that I average a week or how many pills that I’ve tried and had horrible side effects or allergic reactions. I won’t tell you about the pain of when the doctors don’t know what to do with you — yes, I have been turned away by primary care doctors because I’m too complicated — they either throw a lot of pills at me or they take their frustrations out on me by yelling at me. It may sound crazy to you, but you probably only see the doctor when you have a sinus infection. So, in addition to dealing with pain and being sick, I deal with more frustrations than you could ever imagine. When I first got sick and didn’t understand why the doctors were yelling at me, it felt like I was slowly losing my sanity. That makes me feel even worse. So maybe I brush my hair and try to look ok when I leave the house, but I carry so much pain behind the facade.

When I hold my head straight really quickly, so someone can take a picture, because I’m wearing makeup and plucked my eyebrows for the first time in two months, don’t think that’s my everyday experience. I go out of my way to document the moments that I can enjoy life, so when everyone else is living life, and I am alone in the recliner, I can see some evidence of that one time I enjoyed playing with my dogs at my grandparents’ house.

So, I if you’re a close friend or family member, I appreciate it when you tell me that my voice sounds strong or notice an improvement in my symptoms. But, if I don’t know you or you don’t think I look sick, you aren’t complimenting me.

Thanks,

Sarah

Related Posts:
Rethinking Hospitality (for the Chronically Ill)
Cervical Dystonia
Managing Cervical Dystonia Pain
Invisible Illness

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: Cervical Dystonia Tags: , ,
Check Your Side Effects: Antipsychotics Cause Dystonia


I know this isn’t the most Christmas-like post, but, in my opinion, it is. I am giving back to the world a small lesson that I learned in a life changing way. I want write a Public Service Announcement. I want shout “CHECK YOUR SIDE EFFECTS” from the mountain tops. I want to save families from emotional and physical pain. I can’t save everyone from pain, but I might prevent extra pain. I hope that you are on this page because you were doing research. I hope a search engine brought you here, and that I can at least raise some new questions in your mind.

antipsychotic side effects

There are a lot of medicines with a lot of terrible side effects, but today I want to talk to you about something that is personal to me: antipsychotics that can cause Dystonia.

I know that a lot of people take antipsychotics for a variety of reasons. There is the most obvious, schizophrenia. Additionally, antipsychotics are used to treat a lot of different conditions, which is why people may not even know that they’re taking them. Antipsychotics can treat:

+ Bipolar Disorder
+ Tourette’s Syndrome
+ Depression
+ Dementia
+ OCD
+ PTSD
+ Autism
+ Insomnia

There are very well known anti-psychotics, like Haldol and Risperidone. However, I’ve noticed a large number of commercials in the past few years advertising antipsychotics that are being marketed to help with depression. Here is a list of antipsychotics that you might not know that you’re taking:

+ Seroquel
+ Abilify
+ Clozaril
+ Geodon
+ Zyprexa

Why am I telling you about this? Dystonia is a known side effect of antipsychotic medications. Many people happily accept Seroquel from their doctor to help them with their depression or take Risperidone for Tourette’s Syndrome because the what they are currently suffering from is terrible. I would never argue against trying to get help with all of the above listed conditions. They’re horrible. But do you know what is also horrible? Dystonia. Certain conditions can only be treated with anti-psychotics, and the newer ones (called A-Typical) are “safer.” However, I am saddened to see commercials for Seroquel and Abilify because people have NO idea that they could end up ruining their lives. Treatment resistant depression is something with which I am extremely familiar, so I’m not knocking your pain. I battle it each and every day. Tics from Tourette’s Syndrome are painful and sometimes embarrassing–I know because I’ve had Tourette’s Syndrome since my earliest memories.

I see a lot of parents online talking about using a-typical antipsychotics on their children for Tourette’s Syndrome. I took them. I now have Dystonia–and would trade it for worse tics.

If you are considering any of the above medications or any other antipsychotic for yourself or your child, please take a moment to read this article from PsychCentral.com. It explains the connection between those medications and dystonia. There is even a video at the bottom of the article, which I will include here, which shows what dystonia did to one child. The video is produced by the University of Florida. He developed dystonia in his legs and it affected his ability to walk, sit, and stand. His case was so bad that he had to have Deep Brain Stimulation surgery, which is reserved for the worst cases.

Please research dystonia. Research your medication’s side effects–understand what they mean. If I had read that dystonia was a side effect many years ago, I would have looked right over it because I didn’t know what it was. Now, if I don’t know what a side effect means, I look it up. You should watch videos of people who are suffering. Find out about their battles to get Social Security Disability because they are literally unable to work, even with a diagnosis and treatment. A lot of people live for many years in extreme pain without any diagnosis or treatment. Some of those people experience permanent damage to their neck, spine, or whatever part of their body is affected. Know what could happen to you if you take that pill. You may be depressed now. Your child may be hurting from Tourette’s. You may think there are no other options; however, I urge you to make sure that there are no other options. Be your own advocate. Challenge your doctor try a different pill or therapy first. Find another doctor, if your doctor thinks that pills are the only way to go. I know it is very hard to be your own advocate when you’re experiencing physical and emotional pain. I live it every single day, but I am writing this because Dystonia will only compound your problems.

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Categories: Cervical Dystonia
Bloom Where You Are Planted + Win $100 for Charity



I am so excited to talk about the Bakken Invitation honorees! One of this year’s honorees is  Haruko Sato, who not only bravely underwent Deep Brain Stimulation surgery (DBS), but also is the founder and former vice president of the Dystonian Friends Association. The Bakeen Invitation honorees overcome a life-changing medical challenge, like dystonia! I’ve heard dystonia described not as a death sentence, but a life sentence. I really know the feeling. Persevering through the pain to give back to other people who suffer is extremely inspiring.

Bloom Where You Are Planted

You can read more about all 10 honorees here!

Sato, who resides in Japan, says that she wants to raise awareness for dystonia (woot woot!) and get information about DBS out to people who are considering the surgery. The surgery can really help a lot of people who suffer from dystonia. It is two separate surgeries that involve placing something in the patient’s brain and a control box in the chest. Personally, I have met several people who have benefited from the surgery. However, the severity, location, and cause of the dystonia, can all effect a person’s eligibility for the surgery.

Once, I heard a researcher from NIH mention that it is believed that there are more undiagnosed people suffering from cervical dystonia alone than the number of people who are currently diagnosed with every type of dystonia. It is an extremely underdiagnosed condition–the average patient waits 5 years from the onset of symptoms before finally being diagnosed. I hate to think what the average number of years would look like if all of the undiagnosed people were factored into the number.

So, raising awareness is not only important for getting research funding, but simply getting patients diagnosed is extremely important. Furthermore, raising awareness gives people a sense of community and belonging. Until I attended a national conference, I had never met anyone else with my condition in person. It is extremely lonely to suffer from dystonia, even when you have a wonderfully supportive family and good friends. And, just from being a member of an online support group and emailing with people who have found my blog, I seem to be in the minority when it comes to having a supportive family. Dystonia patients need emotional, physical, and even financial assistance.

My diagnosis inspired me to start my blog. I want to give back to the dystonia community and people who suffer from chronic illnesses, in general. I don’t have the physical capability to go out and talk to people or provide assistance, but through technology and my English degree (who knew this thing would come in handy?) I feel like I contribute in a small way. I may never be on the board of a dystonia group or lobby for funding in DC, but I have learned tips and tricks for dealing with dystonia. I want to consolidate all of the information in a comprehensive way, which I hope this blog does for people with dystonia.

There are so many gaps in information about life with dystonia and pain management–and even treatment options–when a newly diagnosed person does an internet search. Sadly, doctors aren’t a great resource for that type of information. A good neurologist will be able to give a patient Botox in the right places at the right dose every 12 weeks, plus maybe prescribe an oral medication or two to help patients deal with the dystonia. But, like I said earlier, it is really hard to find information about pain management and even relationship advice. Dystonia touches every part of my life. Through my blog, I not only want to raise awareness so that the undiagnosed will be diagnosed, but I want to let other new patients know that it’s not an easy road, but they can and will survive.

Now it is time for me to get off of my soapbox and tell you about how you can get involved with giving back to your community!

10 tips

I know that I am super partial, but I love what Haruko Sato said about blooming where we are planted. As a new college graduate, I had a million plans for my life. Just over a year later, my diagnosis meant letting go of 999,998 of those plans. (I got to get married and have a dog, so two out of a million isn’t too bad, right?) I am planted in a place with a diagnosis that needs awareness. I was more fortunate and blessed than words can begin to express because I already had Tourette’s Syndrome. So, I was already seeing a movement disorders specialist once I realized that my symptoms were a little more than just tension headaches and fibromyalgia. It can take months to get an appointment with a movement disorders specialist in the first place, plus most people don’t even know that they need to go there. They just head to the chiropractor and try to manage their pain.

So, my early diagnosis prevented permanent damage to my spine. It also gave me a little bit of a head start on learning about living with dystonia, since I knew what I had. Some days it is really hard just to survive. The pain can be indescribably bad. But, I want to bloom where I am. I want to use the knowledge that I’ve accumulated to help people. Before I got sick, I was very social. Now I want to take those skills and translate those to the virtual world, where I can create community for the chronically ill. Being sick makes it hard to show up to physical support groups, but it only takes an internet connection to communicate with other people.

Your Turn!

Here is the even more exciting part; it’s where you get to help your community! One person will be selected at random, on December 30, to win a $100 Visa Gift Card that they should use in giving back to their local community!*

Just (1) visit the website for the Bakken Invitation honorees and let me know which honoree inspires you the most and why, in the comments section. (2) An additional entry will be given to each person who tells me a little bit about how they give back to their community OR how they would use the $100 for charity!

Fun fact: My college’s motto is Dum Vivimus Servimus, which means While We Live, We Serve, so community service has always been a huge part of my life!

*You must be 18 to enter and based in the United States.

Many thanks to Medtronic for sponsoring today’s story and encouraging me to live on and give on!

Categories: Cervical Dystonia
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
Diagnosis Dystonia: Dealing Injection Pain

*Disclaimer: I am not a medical professional. These tips come from my personal experiences with dystonia injection pain.*
Dystonia Injection Pain: Dealing with Post Injection Site Pain // Cervical Dystonia

Ok, if you’ve decided to get Botox for your dystonia, you probably know what I’m talking about. There is definite pain that comes from the shots. I’ve had three different doctors give me injections. There is always burning after the shots, but depending on the technique of the doctor, I had different amounts of pain after the shots. I’m not talking about pain that comes from waiting for the Botox to kick in or when the Botox is too strong. I’m talking about pain right where the shots go into your body.

I am not a doctor. These are just techniques that I use:

-Ibuprofen for two days before the shots. In order to prevent some of the inflammation from the shots, the ibuprofen helps prevent some of that. If you can’t tolerate taking it orally, there is a prescription cream that is an anti-inflammatory called Voltaren.
If you think about it, getting the shots if fairly traumatic to your body. The needles are long and go into very tight muscles. I know that I feel like I’ve been in a car crash the next day.
-Pain killers. I take a prescription pain killer about 30 minutes before I get my shots. I don’t take enough to make me fall asleep, but I think it helps. If you are new to getting shots, your doctor may still be trying to figure out where to put the shots, so I would ask the doctor about taking anything that could relax your muscles. Since mine go in the same place every time for 3 years, I feel ok about taking it. My doctor only consults a chart from the previous time, even though she uses an EMG machine. She goes so fast that there is no way she can hear it.
-Ice. While heat might seem like a good idea, it will only increase blood flow to the area, which will increase the inflammation.
-Rest and support your neck. If you are experiencing pain, don’t push yourself. If you can sit in a recliner, rather than a regular chair, sit there!
-Listen to your body! If you need to sleep, sleep. If you need pain medication or a muscle relaxer, this is not the time to be stoic.

I hope some of those tips will help you through getting your Botox shots. I know that it’s only 3-4 times a year, but they are very disruptive in my life. It took a few years of shots in order to get my routine in order.

The biggest reason that I wrote this post is because no matter how I worded my search terms, I could not find any tips on dealing with the pain associated with botox injections for dysonia. The Mayo Clinic’s website offers the common side effects like headaches, flu-like symptoms, and swelling and bruising at the injection site, but there are no tips on dealing with those pains! Dystonia injection pain is likely different from the pain you would experience if you were getting the injections for another condition. It took a lot of trial and error to come up with the right combinations of medications and topical treatments for me to be able to withstand the Dystonia injection pain. I had to come up with a strategy with my pain specialist, even though my neurologist gives me the shots. My neurologist didn’t really care. She just referred me to a pain specialist, when I already had one. So, if your neurologist is not sympathetic, please find a good pain management specialist.

Other Diagnosis Dystonia Posts:

Why You Should Consider Botox
Why You Should Join a Support Group
9 Ways to Ease Your Cervical Dystonia Pain

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Categories: Cervical Dystonia Tags: , ,
I Got Old When I Was Young

I Got OLD

When I was 23, my body started shutting down. It became my own worst enemy. It didn’t literally shut down, but I lost the ability to control my movements. Movement disorders are so scary. My neck became locked in place, which had the effect of bringing pain to the rest of my body. The tics in the other parts of my body wouldn’t stop. My world collapsed as my health failed. Instead of growing into a strong, independent woman, I slowly rescinded back into a state of complete dependence on other people. When my body couldn’t work all day, have fun, and allow for intellectual pursuits, I rebelled. I pushed myself to do the best I could at work, to accept every invitation to a party, and enroll in grad school. I was so young, yet my body was not in the same place that my mind was. My priorities were temporary and unimportant in hindsight, but they came at the expense of potentially damaging my life.

So, I moved closer to home after a year of being diagnosed and treated. Treatments were not enough to get my life back in order. When my dad came to visit my apartment, he said that it was like a DEA raided crackhouse. There are photographs – it was that bad. During college, I always prided myself I’m doing great work, keeping myself organized, and having a full social calendar. But by the time I left my first two years of work in DC, I was performing at a minimally adequate level, completely unable to care for myself, and was isolated. People always say that you just have to push through the pain. While that attitude might work for some people, most people with my condition can’t push through the pain. The more you push the further backwards you go.

The cruel part of this disease is that my mind stayed intact. I know what I want to do. I know what I could do in the past. And I know what I won’t be able to do in the future.

As usual, this post was inspired by a few song lyrics:

Ain’t it funny how the simple things in life
Are the only things that really matter?
Your life is complicated, found your dreams are overrated
Now you’re old and wanna go back
But you can’t

You spent your life running away from your family
In your old age it’s all that you’re wanting

Being sick forced me to grow up a lot faster than I would have before. As I heard someone say recently, everyone has been hit by something. Some people have been hit by a tricycle, but other people have been hit by semi trucks. In the end, we are all dealing with something. We all have disappointments, longings that are unfulfilled, and aching hearts.

I feel like I got old, while I was young. I either had to completely reevaluate, rearrange, and create new priorities, or I was going to only get worse. My body needs a lot of sleep, gentle movement, and general care that is above and beyond the normal 26 year-old. Overall, it is simplifying my life – something that I am still working on – that is going to help me. It is hard, though, when my peers are excelling at their jobs, having children, and on the go more than me.

But, I also learned that family is what matters the most. Family is different for everyone, but for me family is my parents and my husband. And the pain can make it hard to maintain those relationships because pain can make me bitter and mean. I am also still working on this, but I know that I have to stop running away from family and stop running towards the overrated dreams. Of course I have goals that keep me motivated. But my goals at 26 look significantly different than they did when I graduated college at 22. I thought I could have it all. I could have the world. Maybe some people can, but for my quality of life, I had to realize that there were only a few things I needed and wanted. And I have to work hard at those things – finding pain management, taking care of myself, being humble enough to accept help, and enjoying the precious time that I have with my family. I have seen too many people lose their family members far too soon, recently. I don’t want to regret anything at the end of my life. And I know that I won’t ever regret putting my energy, which is also a precious resource, into the simple things in life that really matter. I will regret wasting my energy on the complicated, the messy, and the unfulfilling.

Categories: Cervical Dystonia, life thoughts
Diagnosis Dystonia: Why You Should Consider Botox for Cervical Dystonia

I am writing this series because it is what I wish I could have read when I was newly diagnosed. When I was diagnosed with a life-altering disease, you better believe that I google-d the heck out of it. There were a lot of things that I never found, so a few years into this journey, I am here to offer the little bit of knowledge that I found.

I have been very surprised at the number of newly diagnosed Cervical Dystonia patients who avoid Botox injections. Needles are scary, but I think that having your spine hardening into place is a lot more scary. Plus, Botox is injected locally, which is an advantage over oral medication.

*Disclaimer: I am not a medical professional. These are my opinions, as noted.*

Cervical Dystonia Botox: Why you should consider Botox as a treatment, even if you're scared!

When I attended the ST/Dystonia Symposium in Charleston, SC a few weeks ago, a doctor gave a presentation about the complications that can occur from leaving Cervical Dystonia untreated. Several people mentioned that it is believed that there are more people with undiagnosed Cervical Dystonia than all of the people who are diagnoes with every type of dystonia, combined. So, awareness is very important because untreated cervical dystonia leads to permanent spine damage.

From my personal experience, I had to wait almost 2 months in between the time I was diagnosed and my first Botox injections. This was due to insurance paperwork. Additionally, this does not take into account the onset of symptoms prior to my diagnosis. I have not been able to pinpoint my onset of symptoms exactly, due to other movement disorders from which I suffer. But the moral of my story is that while I was waiting for my Botox shots, I went to see a massage therapist and found out that my spine was already out of alignment. I had a myofascial pain release massage. (If you have ever had one of these, you know they are not for relaxation purposes). The massage therapist even took measurements of my range of motion to see how much I improved after the massage. You are a blessed person if you have never had to drive with Cervical Dystonia. Turning at the waist to check your blind spot is now a habit, but before I knew I actually had a disease, other than just loss of range of motion, it was necessary. When the massage therapist started, he mentioned that my spine was out of alignment. I have since had x-rays of my back, due to lower back pain, and my spine is not currently out of alignment. I can only attribute the one alignment to my untreated Cervical Dystonia.

One of the presenters at the conference I went to showed a photograph of a woman who had not been treated for her Dystonia in time. In the photograph, her neck was completely twisted and pulled backwards. The doctor explained that anesthesia should cause even dystonic muscles to relax. In the second picture, the same woman was under anesthesia. Her neck was in the exact same position, because even though her muscles were relaxed, her spine had hardened into that uncomfortable/horribly painful position.

The presenter went on to say that untreated Cervical Dystonia can lead to a hardened  spine. The only way to correct a hardened spine like the one he showed us a photograph of would be with extensive surgery to the spine, which would require pins. I am fairly certain that most people would rather prevent something like that from happening. Furthermore, the presenter cautioned that osteoporosis can also make living with Cervical Dystonia much harder. I have since resolved to take as many preventative measures as possible against osteoporosis, since it runs in my family. I don’t want any extra strain on my neck.

People who I have talked to who are avoiding Botox shots, usually are doing so due to a fear of needles. I’ve never been a fan of needles, but seven years of allergy shots helped me prepare, I suppose. Botox injections are painful. I won’t lie about that. They burn about 20 minutes after they are injected. And depending upon the skill of your doctor, the amount of post injection pain can vary. But I am here to tell you that a few days of pain is worth getting your life back. I am crying as I dictate this post (read here about how I blog with Cervical Dystonia and a hand tremor), because I would beg everyone to at least try. You don’t deserve to live in pain.

Botox is not perfect. It will not take care of all of your problems. It takes a week or two to start working and can wear off before you are allowed to get your next set of shots. It can take your neurologist many tries to get the right shot pattern. It can take many tries to find the exact right amount of Botox that you need. But I am imploring you to stick with it. You will need complementary therapies to help you deal with the pain during those weeks when the shots are wearing off; however, those precious few weeks that your neck is not twisting or pulling can make you feel like yourself again. I know what it is like to feel like your life has been unalterably changed by your diagnosis and your pain. So, a few weeks of relief can let you have a wedding and enjoy it. You can visit with your family, without being distracted by your neck. You can make memories again! You will be able to enjoy some parts of your former life. Not every activity will still be possible, but if you have suffered like I have, just getting one or two things back can transform your life. It can make your life worth living. Everyone’s life is worth living, but when you are in the depths of unbearable pain it can feel like your’s is not.

Those few weeks can give you back a small semblance of your former life. Pain has changed my personality. My husband did not know me before I was diagnosed, but I guess he likes my newer personality well enough. However, he really gets the best of me and my real (aka awesome haha) personality during the weeks that my Botox is working. Some college friends and old acquaintances who I only see sporadically, may never even know that anything is wrong, if they happen to see me on a good week.

Give Botox a chance to work for you. I could not find any statistics on how many patients respond, but since it is a first-line treatment for Cervical Dystonia, it must work fairly well. Some people will build up an immunity, but there is a new drug that will be available within a few years, which does not have any proteins for your body to build antibodies against. If Botox is not working for you, the problem is most likely your neurologist, not the Botox. I travel an hour and a half to see the best neurologist at a movement disorders clinic that I could find. And most doctors who are movement disorder specialist are trained in Parkinson’s disease. So, if they tell you that they see a lot of Cervical Dystonia patients, ask how many is a lot. I have spoken with people who travel five hours or more to get to the best doctor. The technique of your doctor will determine the effectiveness of the Botox. Just because someone puts it in your neck does not mean they are putting it in correctly. Find a local support group or a national cervical dystonia foundation and look at their doctor list. Join an online support group and ask people in your area which doctors they go to. When you find the right doctor, don’t let go. My first doctor was an excellent shot giver. However the second doctor that I saw, once I moved, did not have great technique. So, I suffered for 12 weeks because the shots were completely ineffective. I was fortunate to get a third doctor who was able to give me effective shots. While I would love to stay close to home to get my shots, I am unwilling to let some one mess up 12 weeks of my life with ineffective shots.

I was not able to find much research on the Internet to back up this post, like I wanted to. So I hope that my story will inspire you to take a chance and get the shots. Even if you hate needles, you should talk to your doctor about taking a medicine to help relax you before the shots. I will be posting soon about how to deal with post injection pain because getting through those few days after the shots can be challenging. I am always trying something new or perfecting existing techniques to manage my pain, so I can resume a sort of normal life.

Please email me if you have any questions about my journey through Botox injections. I would love to talk to you about your decision to get Botox or not to get Botox. Also I would love to hear what you do to deal with the pain of getting the shots!

While you’re thinking about it, please read some information on the effectiveness of Botox! Don’t let your fears hold you back from a viable option.

Other Diagnosis Dystonia Series Posts:

Why You Should Join a Support Group

How to Deal with Post Injection Site Pain from Botox

Other Cervical Dystonia Posts:

Shot Day: A Look at What Getting Botox Shots is Like

9 Ways to Ease Your Cervical Dystonia Pain

Invisible Illness

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