1. After giving them a haircut at home: You are ugly, but I still love you.
2. After Rylie chewed a book: I knew for sure that you were adopted.
3. When they have “accidents” in the house: I am going to make you live outside forever.
4. When one dog whines for for a toy that I can’t reach, either: I like your sister better.
5. Who pooped on the ottoman?
6. When Josie goes in my closet, looking for clothes she can run away with: Josie, come out of the closet! [this is daily.]
7. Quit licking each other’s faces!
8. Stop growing, or I’ll stop feeding you.
9. Get out of my way. My TV show is more important than you.
10. How are you still sleepy? You sleep 22 hours a day.
Do you say crazy things to your pets?
I am here to share my 5 favorite posts from this week! I loved even more, but I only have a little bit of time (and patience). The regularly scheduled Cervical Dystonia series is taking a break because… well, my dystonia prevented me from doing the researching and writing that I wanted to do this week.
On Making Time for the Things You Love (A Beautiful Exchange): I love this post because it is all about prioritization. I am such a time waster, so I set a lot of goals to motivate myself. I’ve experienced a lot of loss in my life recently, so I have also been thinking a lot about making the most of each moment and time with people (and dogs) that I love.
What I Wish I Knew in College (Sew My Soul): I would say a lot of these same things to myself. Maybe not my freshman self, but more like my Junior/Senior self. I know Kaitlin now, post college, and it hurts my heart when I think of all that she went through when she was younger, because she is like one of the most legit people that I know in real life and in blogging, but I am so happy to hear about how she’s grown. She is a role model for me – and I’m older than her! (Shhhh).
DIY Citrus Scrub (Latte Everyday): Last Christmas, I made a ton of peppermint sugar scrub for people. My husband has really dry hands, but hates to use lotion. I was able to get him to use it because he says it leaves his hands non-greasy. I’ve been thinking about making him something more manly – and Citrus seems to be the answer. I love this recipe because I don’t have to buy extra oils for scent!
French Press Latte Recipe (Seasons with the Strattons): No secret, I love coffee. I also really love french pressses and Lattes. I use an automatic heater/frother at home, but I love Martha’s idea to shake the milk a lot and then microwave. So, now when you see my recipes that use the heater/frother, you can use that technique!
Finally – An Update (Journey Mercies): I absolutely love reading about Whitney’s time in Cambodia. I have always known that it is a sacrifice for Americans who go abroad to become missionaries, but it has been eye opening to read along. Plus, she always has such wonderful thoughts. I’ve been following along on Instagram with her 31 Days of American Culture Shock, which has been convicting for me. I know my life is full of excess, but it really hits hard when Whitney reflects on it. Seeing her 7 month old son’s first experience with grass was also crazy! I take so much for granted.
So, Brian is pretty much the funniest guy that I know. I love talking to him. He might be a little quiet, but he’s so silly and sweet. I thought that I would share a little interview that I did with him, since we’re just about to celebrate our first anniversary!
What kind of questions should I ask you?
What? That’s lazy.
Who is your favorite Shih Tzu?
You know that it is wrong to choose a favorite child, right?
His silence speaks volumes.
What is your favorite television show?
What is your favorite thing about being married?
I get to do fun things with my best friend forever. I get to live with my best friend, so I don’t have to call you over to hang out. And will be best friends forever and ever and no one can stop it.
Share your thoughts on Gone Girl. [Interviewer's note: Gone Girl is the first and only book that I've ever seen him read.]
I thought it was really good, and I think anyone who hasn’t read the book should still see it because you don’t need to read the book in order to really enjoy the movie.
What is your favorite thing about my blog? Do you like my blog?
I love your blog because you’re so honest about all the stuff that you’re going through, and you give people a voice about invisible illness that other people are too afraid to share.
What is your favorite thing to make with the KitchenAid mixer, that we don’t need.
My favorite thing is probably the apple pie made last weekend.
[Interviewers note: Brian is the only one who uses the KitchenAid mixer. He is a better baker than me.]
Would you ever own a dog that is not a Shih Tzu?
I think the only dogs that should ever exist in the world should be Shih Tzus.
[Interviewer's note: It has been hypothesized that Brian is a Shih Tzu.]
Why don’t you sound like you’re from Mississippi?
I have missed flamingo day but I learn how to speak with a neutral accent.
What is your favorite thing to do when I go away for the weekend?
Probably do things around the house annoying you like doing laundry and playing on the computer.
Any other thoughts for my readers?
My wife is the best, and I love her so much – everyone should read her blog every day.
What is the best thing that I have taught you since we have been married?
Cleaning tips and dressing Tips. They helped me transition out of bachelorhood.
When I first started dating Brian, I realized that he didn’t know how flamingos became pink. I wasn’t sure if he wasn’t paying attention in school or if he had a deficient education. His brother, who went to the same school, knew why flamingos were pink. Now whenever Brian doesn’t know something, he says that they taught it on the same day that they taught about flamingos! We have so many inside jokes that I had to get rid of a lot of interview questions because the answers did not make sense without a very long side note from me.
I hope you enjoyed reading some silly questions and answers from the very best man in my life.
So, most of my organic search terms are either for my blog address or related to Cervical Dystonia. I thought that I would share a few of my favorites with some commentary.
jen hatmaker botox – 6 – Ok. The high number of hits on my blog for this term is hysterical. I blog about Botox for Cervical Dystonia a lot more than I blog about Jen Hatmaker. But apparently at least 6 people think that Jen Hatmaker gets Botox.
sephora rouge infusion – 3 – This is good stuff. Use it.
anberlin – 2 – This is an awesome band. You should listen.
dawson’s creek – 2 – A very interesting show. I wish Netflix hadn’t taken it off without warning!
best day ever mason jar tags for weddings – We had a Best Day Ever sign at our wedding. I recommend getting one.
buffy your cervix – Hello? What?
china glaze shocking punk – I am going to hope you were searching for the nail polish.
chopping off long hair – I regret chopping mine. I don’t recommend it.
cutting off hair for summer – See above.
dawsons creek logo – Again, Netflix, you let me down.
dietbet transformer – I lost mine. But if I hadn’t gotten really sick
friends or neighbors unsolicited medical advice – Oh yes. I hate when they do this. Tell them that you are already seeing a witch doctor, then watch their faces.
girls braces – Fun fact: I’ve never had braces. Well, on my teeth. I’ve had plenty on my wrists, ankles, knees, etc.
holcomb snapchat – Drew Holcomb & the Neighbors is an excellent band. Ellie Holcomb is a talented singer and songwriter. Snapchat is awesome. Unfortunately, I do not have access to their snapchats. Because you better believe I would totally abuse it if I did.
i just hate my self – I kind of want to reconsider my blog now.
ice pack with her sick – This is a rather vague search. Who is she? What’s wrong? Is the ice pack for her?
if your hurt it pains me pic – I think you meant you’re.
insta shih tzus – Oh yes. My instagram is pretty much flooded with Shih Tzu photos. They’re the best type.
joey dawson car gif – Joey doesn’t have a car.
lacedwithchrist instagram – An awesome blog. It is not mine.
my fitness pal before and after – It works!
myfitnesspal tight_fit – I am concerned about the second part of that search term.
passionfruit ads lack of customer service – Oh hell yes. If you are buying an ad, be prepared to lose the money.
september national dystonia month – Unfortunately the petition didn’t work, but I think it raised a lot of awareness.
shih tzu hair cuts – I give mine at home haircuts. And it shows.
shower gift sarah – I’ll take a gift.
sip it backyard makeover sweepstakes – Not sure what this one was about, but I would totally take a backyard makeover.
south carolina flag – It’s a beautiful thing.
starbucks giveaway – Honestly, do people really like Starbucks, other than it’s convenient because they’re EVERYWHERE.
sugar cervical dystonia – Sugar is probably bad for you, but it tastes good.
who is sarah buffy married to james dawson – Buffy didn’t get married, did she?
wine and cervical dystonia – Yes, please.
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.
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 change 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!
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 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 “you’re so beautiful,” are you implying that beauty protects people from getting sick? Or that being sick should make me ugly? Perhaps I shouldn’t take any pride in my appearance if I am sick? I don’t know, but you should probably stay away from that phrase.
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 don’t tell you about the hours and money that have gone into biofeedback and neurofeedback. The tests that I’ve had run. How many doctor visits that I average a week. How many pills that I’ve tried and had horrible side effects or allergic reactions. 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.
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. But, if I don’t know you or you don’t think I look sick, you aren’t complimenting me.
It seems like the Fall is prime time for conferences. I spent a few days at a Spasmodic Torticollis Symposium a few weeks ago, and I’m about to head to a church conference soon. I’m not a huge fan of traveling, but when it comes to traveling, picking the right outfit is important! For instance, the symposium required us to dress up one night, but have comfortable clothes for another part. Therefore, I was all about multi-tasking!
Meagan at All the Joys did a great positive spin on what she likes about people’s blogs awhile back (read it!). It was awesome. But, after a few aggravating incidents recently, I thought I would share why I don’t like your blog.
-You pimp your blog in my comments section. I use Disqus, which allows you to put your blog in your profile. Additionally, if you do something like link back to your post from a link up in the comment section, there is no way in hell that I’d ever click it or approve your comment. And I have a comment policy right above the comments.
-You have stolen something that I’ve tweeted about or done by writing a blog post about it before I got around to it. Don’t think I didn’t notice that I tweeted about blog-related program or made a change to my online accounts, only to see you post about it within the next day or two. Hello, you favorited the tweet.
-You post way too many “updates.” Yes, every blog has some filler content, but if you just throw together last week’s instagram photos (or even worse, you have a single post with a single instagram photo and one line of text), I won’t be reading your blog. I don’t know you, so why do I care about your weekend? If you post helpful content on a regular basis, so I feel like I know you a little bit, I am interested in your weekend.
-Your pictures are too small. Unless you are the next big thing to hit the world of writing, your blog should look nice. Part of that is having full sized pictures. I was afraid to post large photos at first, but really, they make your site look better.
-You haven’t realized that grammar matters.
-You use captcha. It is 2014. There is no excuse not to have Disqus or another comment program to catch spam.
When I heard about the link up Operation Read Your Shelves, I was very excited! One of my 101 in 1001 goals is to read all of the unread books on my bookshelf. I have a lot of those, unfortunately. I tend to purchase used books with the intention of reading them immediately, but I always get put off. Recently, I have developed a problem holding physical books, of which I have a lot. However, my the severity of my tremor comes and goes, so I was able to read a book that I have been meaning to read for many years.
I read Michael Chabon’s Wonder Boys. I fell in love with Chabon’s books when I had to read The Yiddish Policeman’s Union for my Postmodern Lit class in college. After that I read a few more of his novels. Even though Wonder Boys is one of his most famous books – it has been turned into a movie – I never read it.
I was more than pleasantly surprised by the novel. The novel is about an English professor, which would be my dream job. This English professor also happens to be an author with an unfinished novel. Wonder Boys takes place over the course of a single weekend, where the English professor, his friends, and students have quite an adventure. Even though the main character is not Jewish, like almost every Chabon novel that I have read, it is heavily influenced by Jewish symbolism. While the entire plot did not revolve around Judaism, one of the most significant scenes in the entire novel takes place around the Seder table.
Overall, the book is an excellent example of Postmodern literature’s relative morality. While I don’t personally agree with relative morality, I can enjoy a literature for what it is. Literature is the suspension of disbelief, so I can still enjoy and learn from novels the don’t necessarily fit my worldview. All of the morality and social constructs within the novel are relative. There is no absolute truth for anyone. Each character finds his or her own meaning and truth. The novel is about a man who maybe never quite grew up. It is a coming-of-age novel for a middle-aged man. I find that a coming-of-age novel for someone over 40 is indicative of our culture’s mentality of perpetual adolescence. I don’t think anyone would have written a novel like it is 100 years ago. Books like Revolutionary Road, which was written over 50 years ago, deals with late blooming in coming-of-age issues, but the characters are also only late 20s and grappling with the issues of suburban and family life. People have probably always never wanted to grow up, but only in recent years has it been socially acceptable to stay in a state of prolonged adolescence without any public censure. In Wonder Boys, the unfinished novel is meant to be symbolic of how the main character is still working on himself, but only because of outside pressure. He would be happy to stay in perpetual adolescence, just like he would be happy to never finish his novel. He only works on the novel because he was advanced money for it. He has pressure coming from his publishing company to make good on his promise. In the same vein, if external pressures of an unwanted pregnancy with his mistress, among other things, didn’t force him into growing up a little, he would stay smoking weed and never honoring his commitments.
If you were clearing out your shelves, what would you read?
I spent the weekend at a Cervical Dystonia conference a little bit ago. The symposium was put on by ST/Dystonia. The website has some usual information, but I learned even more at the conference. While I was there, I talked with so many people who, like me, had never met other people with Cervical Dystonia. Furthermore, the newly diagnosed were going through some of the same emotional turmoil that I went through after my diagnosis. They were all trying to find pain relief, too. Going to the conference has inspired my new weekly post that addresses Cervical Dystonia topics.
This week I want to talk about why you should join an online support group, go to conferences, or even find an in person support group.
When I was first diagnosis, I was not in any physical condition to travel to an in person support group, even if it was close. My parents got really involved with a Dystonia support group in Birmingham, Alabama, while they were living there. I was living in Washington DC. I was just trying to keep my job and grocery shop. Living by myself without help was more than I could do. However, their participation in the Dystonia support group there helped me learn about my treatment options.
Meanwhile, my parents found a great online support group. They didn’t tell me at first because they thought that it might be too overwhelming. In hindsight, I do think they were right. There are so many people with different complicating medical issues. When I was first diagnosed, my doctors were trying to tease out what symptoms were neurological, which were fibromyalgia, and what were medication side effects.
Now, I am a member of this online support group, which I must encourage you to join! You do need to weed through some posts that aren’t helpful, since there is only one page (so things can’t be separated by topic), but there are so many members. If you have any questions, like what pillow do people use to get comfortable enough to sleep, do other people do physical therapy, has anyone heard of a certain doctor, etc., people can almost always answer. I even use the search function along the side of the top to find out if a question has been asked before. I love the online format because, if you suffer from Cervical Dystonia you know, it can be hard to drive or get somewhere at a certain time.
Right now, there is not an in-person support group near where I live. However, my parents learned a lot by participating in a group for me.
My weekend at the ST/Dystonia Symposium was very inspirational. I think that over 3 years after being diagnosed and starting Botox, it was the first time that I could have gone. Traveling is very hard on my body. Sitting during the presentations was also very hard. Fortunately, most of the people there had the same issue, so there were a lot of breaks and people standing in the back or resting in the high backed sofas in the lobby.
There were a few topics at the conference that I can’t wait to write more about in the coming weeks. So, sign up for my monthly newsletter (at the top of the page) and check back each week!
I have decided to start the newsletter because most of my readers do not suffer from Dystonia. I want to send out a monthly email where I compile new research, articles from other people with Dystonia, and any other information that will be interesting to Dystonia patients!
Please feel free to email me any questions that you have! I know it’s awkward to leave them in the comments section, sometimes. I started this blog to share information. Please do not feel slighted if it takes me a few days to get back to you. I don’t always feel well enough to send back a thorough reply at first. I have found a nice way around that, though–see How I Blog with a Disability.
You can read through my archived Cervical Dystonia posts here.