Walking on Broken Glass

 

The past couple of weeks have not been the greatest.

Physically, I have been in a lot of pain. Pulsating, numbing, loss-of-interest type of pain stemming from Dystonia. This nuisance is something that I have not experienced before, so I am alarmed and that much more in-tuned to my body. I do not know if I did anything to aggravate my muscles like that, but I do not think so. It seemed to primarily attack my back without any notice. (Though I am pretty sure being notified would not have helped me much.) It felt like every back muscle was violently dancing out of sync, which angered neighboring limbs and muscles. And I’m in the middle of it all. My remedy: still trying to figure that out. But I did take (and will, if need be) a medication that my movement disorder neurologist prescribed to me as an emergency for severe Dystonia attacks. I took it more than once. And I slept a whole bunch, despite waking up tired. Oh, and wait…my feet still are causing trouble. Nothing to do with the whole weeble-wobble balancing act that I call walking, though that is and always will be an issue, but actual sharp bite-your-tongue pain. It started in my right foot, but the left one became jealous and now they either share the pain across both fronts, or allow one (not sure how it is decided) to take all the glory and have a solo performance.

I am doing better because I have the energy to write this. So, at least there is that. And a giggle, or two. Walking On Broken Glass

(I know this looks messy and not formatted correctly, and it is bothering me a bit but not enough to change it. I am just glad that I finally posted again.)

 

 

“Are we human or are we dancer” -The Killers

Yesterday I received my botox injections. Although I have been having this procedure for about a year, it makes me anxious. I had fourteen needles puncture my skin into my muscles with botox. Why would I do this you ask? Because it works. I have concrete evidence from my physical therapist that the injections has improved my walking as well as minimize my cramping and tremors/spasms. Every three months or so I have an appointment for the injections. Every time the dose increases and different muscles are poked since I have not had any negative reactions. Yesterday I had three new muscles (on each side, so I guess that adds up to six muscles) join the botox train. I rested all day today and feel fine, just fatigued but that is nothing new. It takes time to notice changes, about nine days, but I will report what I see and feel.

For more information about botox check out these sites:

Dystonia Foundation Botulinum Neurotoxin Injections

Barrow Neurological Institute – Dystonias

Pixie

I am trying, yet again, to write more consistently because it has been too long. And writing is very therapeutic for me, so I need to make the time.

I typically work on Saturdays, but I had today off and will be working tomorrow. I did not have any plans, but I still was anticipating a great day. I woke up to dull neck ache, that is the best way to describe it. No matter the position I was in I had to keep flipping and moving to feel comfortable. It was super early, so I decided to sleep a bit more with the company of Blueberry. Whatever aches and pains I have seem to vanish momentarily when I am with him probably because I focus my attention at him to make sure he is okay, like any mom would.

My neck still ached in the late morning, but I was determined to let it ruin my day. I went to hair salon that I normally do not go to, but I had received an email for a coupon that saved me $3 (apparently I had been to that salon one year ago, and that was a celebratory coupon). I was not sure if I would have my haircut or not, but ultimately decided that I no longer wanted the shaggy look. My hairdresser was so nice and helpful. Lou said that she always wears that much makeup because since she was a kid she wanted to be Barbie; I knew I was in for a treat! She talked to me, not at me like many of the hairdressers that I have been to. Lou gave me styling tips and compliments on my ginger color. It was a wonderful experience that almost did not happen. This little interaction completely made my day, and I was not consciously thinking about my ache.

Stung like a bee!

My doctor suggested that I meet with a physical therapist to, hopefully, improve my gait. I was apprehensive at first because many years ago I had physical therapy, but it did not help primarily because I, or anyone for that matter, did not know my diagnosis. This time around though was different: not only did I name for my condition, but the center is quite special. I received one-hour physical therapy sessions at the Muhammad Ali Parkinson Center at Barrow Neurological Institute at Dignity Health St. Joseph’s Hospital and Medical Center in Phoenix. Not only does the Muhammad Ali Parkinson Center help people diagnosed with Parkinson’s, but other neurological disorders including Huntington’s Disease, Multiple System Atrophy, Restless Leg Syndrome, Dystonias and more.

Being surrounded by pictures and quotes of Muhammad Ali became an inspiration. And I stung Dystonia like a bee!

At my first session I had an assessment that would show my physical therapist my strengths and weaknesses. About six or seven weeks later, I had the same assessment to see if I had made any improvements. Excitingly, I did. There is an exercise where I began seated and had to stand without the aid from my upper body for five repetitions as quickly and safely possible. I beat my first time by nine seconds! Since I have never been athletic, this record-breaking time has made feel like a champ.

I will continue to surprise myself by what I can achieve, even when I have doubts.

I am motivated.

And I will keep on stinging Dystonia!

[I purchased my very own exercise ball, which I have to keep reminding Blueberry (my dachshund) that it is not his!]

 

Sun Shiny Day

This month marks my first anniversary living in Arizona, and I have never been happier.

I took a leap of faith, or love, when I packed my small amount of belongings into mismatched suitcases and begin a new adventure in another part of the country. I moved for opportunities, change, and health. That is what I originally said, but I now say that I moved for love; I am engaged and our wedding will be in January!

I lived on Long Island, New York in the same house since I was three years old until the fall of 2005 when I ventured to college eight hours away into the much colder weather. I have not been that much of a fan of snow; sure as a kid I loved it because of snow days and building something resembling a snowman, or trying to. But as my Dystonia surfaced, my tolerance decreased. The wind gusts, wind chill, ice, snow, smog, slush, and frigid temperatures made my bones ache incessantly. Winter kept on getting colder and more harsh than the year before; I dreaded it. I should mention that the extreme winters were matched to very humid summers. The middle ground of Fall and Spring were diminishing; and my favorite season is Fall. When the opportunity for me to move finally arose, I was anxious, but excited.

Yes, it is very hot now in Arizona! I am prepared every time I need to go out with a water bottle, sunscreen, and my sunglasses. With that being said, I take a trip to the store in the early morning or evening because then it is bearable. It is the desert, and it is summer (yes, even in September). But I look at it as a trade-off: the summer in Arizona is my version of winter in New York, just without the snow; staying indoors more often than I would like.

Most importantly, my Dystonia is more controlled now. Not only am I receiving plenty of Vitamin D, but my limbs are more flexible and I am not as achy. I am not as stressed because I think the sunshine greatly contributes to my level of happiness. And when I can manage my stress, I am also managing my Dystonia. Sure, there are other factors that combine to elevate my mood and decrease my stress, but the sun does a play a large role.

Sometimes taking an unexpected journey is just the right medicine.

Six Things My Dog Has Taught Me

I adopted Blueberry in January from the Arizona Humane Society; I was volunteering the day he came, and knew he was a special dog. I became attached, but did not leave with him right away. When I was notified that Blueberry was still there hours later, I knew I was meant to adopt him; it was fate. Ever since Blue has been my shadow. Here are some of the things he has taught me:

1. Take your time walking: The pace does not matter, the key is that I am walking.

Blue is a wonderful walker, and really enjoys his walks. Sometimes he wants to run. But he checks-in, by looking back, with me to see how I am. He is a wanderer and an explorer, and I do have to tell him to slow down because I am not feeling too good, or I cannot keep up with him. I know he knows when I am not up to par, and we walk at our own pace. But when I feel good, we breathlessly run.

2. Nap as much as needed

Odds are that Blue will be napping if he is not eating or playing. He passes out in some of the strangest positions, and occasionally snores. I am fatigued very often, especially now living in the desert in the summer, but it is something that I will need to manage. It is better that I rest than continue with errands and to-do lists because I will feel worse. And I need to not feel guilty about how much I napped, and I should be spending my time. Besides, Blue loves to cuddle.

3. Be open to new adventures

Blue loves hopping into the passenger seat for a trip around the block, to the dog store, anywhere; he is my copilot. He really does not care where we go because it is all about the ride. Before I leave my home, I always assess where I am going, what I will be doing, if I will be alone or with others, and how I am feeling. And if something is not jiving, then I will stay home creating my own adventure. Living in the moment is wonderful, but I have to listen to my body and respond accordingly. Also, for my morale, it would help if I start each day positively for whatever adventures may come.

4. Touch is the best form of comfort

Bellyrubs, back scratches, and head rubs are my dog’s favorite things. He nudges hands and arms if he is not being petted; he is an only child, so he receives all the love and he cannot get enough. It is bliss being hugged by my soon-to-be-husband. Most of the time I feel better when he holds my hand, hugs and/or kisses me. Sometimes all it takes to be centered is a familiar touch; equally gratifying is seeing how I comfort my fiance and Blue.

5. Be confident in my skin

Dachshunds are nicknamed Hot Dogs and Wiener Dogs. Some people will stare, point, and holler at the sight of Blueberry in excitement; it does not bother him since he loves people. The stride in his walk exemplifies his confidence. Sometimes I feel uncomfortable when people stare at my unbalanced walk. Yet, I am gaining more confidence and have a pep in my step. It is not always easy, but Blueberry helps me along.

6. Listening is enough

He knows. He knows when I am happy, disappointed, stressed, relieved, upset, etc. Blue will look at me as though he understands. And sometimes that is all anyone needs: to be heard. “I have Dystonia, but it certainly does not define me.” 

Lovestruck

Love will happen when you least expect it. I must have heard that line from friends and family hundreds of times. As much as I agreed, I wanted a mate. I wanted all of those cheesy and corny movies and songs to be associated with a real-life guy. Everyone was right; I found love when I least expected to.

I told him I have baggage: Dystonia. I told him shortly after we began talking online; I knew I had to tell him, but I feared that he would no longer feel the same way about me. And if that was the case, then he would not be the guy for me. But it was nerve-wracking thinking of the outcome. We talked about it, and he reassured me that he could not change how he felt towards me, which left butterflies flying in my stomach. Now, I laugh because I really had nothing to worry about.

He sees me: a bookworm, dog lover, volunteer who is compassionate, stubborn, unique, and caring; he does not see me as a person with a disability, but he sees Lisa.

He has been and continues to be incredibly supportive. He does his best to comfort and relax me when I am having a bad day. When I have shaky fingers, he holds my hand(s). When I have back and neck spasms, he massages. He always asks how I am, but when I have had a rough day he is more invested. He will suggest I nap when I look I tire. He will ask, not condescendingly, if I need help opening a jar, draining water after cooking the pasta, bringing in groceries from my car, and so on.

I compare our relationship to matching puzzle pieces; we are each other’s perfect fit. I am so lucky to have him in my life.

Sun, shiny day

I do not know what type of day I will have until I wake, like everyone. However, my good and bad days are determined by how stiff, or achy, or tense, or tired, unbalanced I feel which is a result of my disability: Rapid-Onset Dystonia Parkinsonism. Sure, I try to feel better when I am having a bad day, but it is not the easiest. When my fingers become stiff, I have to end whatever I was doing on my laptop; I cannot read a book because turning the page adds to my discomfort; I cannot adventure somewhere without thinking that I am too exhausted, and that it will have to wait until tomorrow, maybe. Yet, I have to try to look, think and act positively about I can do: I talk to my mom regularly (on-the-phone); I volunteer at a Humane Society; I lead a book club at a library; I walk my dog twice a day, once in the morning and the other at night, for twenty minutes each; I cook dinner for my fiance every night before he leaves for work (night shift); I am planning our wedding and decorating our new place. So, maybe some days I need to nap for awhile, and I walk a little funny, and I sometimes use a handicap parking spot, but that does not define me, not even close!

I thought I would write, since I have not in months, but I did not expect to feel better after pouring out my thoughts onto the screen. I was very tired earlier; I could not keep my eyes open. Now that I have more energy, and filtered some thoughts my day is brighter. And I live in Arizona, so it is a super bright day! I guess I need to trust my instincts more because I have been wanting to write but either Dystonia and/or Depression required my attention. When I do feel good, I will write. That is a therapeutic commitment I will make to myself.

It is a small world

To my surprise, my blog linked myself to a young man. Well, his wife discovered my blog, most likely from a keyword search of Dystonia, and sent me a wonderful comment which included her husband’s same diagnosis as myself: Rapid onset Dystonia Parkinsonism (RDP). I cannot even begin to describe the rush of butterflies and announcing “I really am not alone.”

I have so many friends who have Dystonia, but I did not know anyone who has my type, and neither did he. Although he and his wife live in another state, we will stay in contact with each other.

I cannot help to think that had I not created a blog to document Dystonia and other adventures, he and I would never have met. I am very inspired and will continue to blog, and making connections with readers. And maybe I will have contact with someone else who has RDP.

The Power of Music

Music can make us filled with joy as we sing along, dance, tap our feet, clap our hands, etc. Music, any kind, does something to the brain that triggers a rush of emotions.

I had the privilege and honor of watching first hand how music can affect an individual who cannot speak and has very limited movements. While the other nursing home residents were banging on drums and tambourines, I gave her a maraca because it would be easier for her to grasp. Initially, she just held the musical instrument listening to the others. I kept showing her how to make music by shaking it, and soon enough she was making her own music banging the maraca on her board that has phrases that she points to when she needs something. I was taken by surprise when I first heard her playing; it looked like something clicked with her, that is the best way I can describe it. She was smiling, and yelling out and enjoying herself. Her husband was so happy to see her in this light. In fact, she did not want to let go of the maraca as I was collecting the instruments.

She warmed my heart, and made me believe that anything is truly possible if you try.