Wednesday, May 30, 2012

So Glad I Never Gave Up

I just received my cap and gown, and I am officially ready for graduation! It took me nine years to finish with my bachelors degree, but I did it! The decision to go back was easy for me, because when my heart is in something I just go for it. It was working full time, taking care of a little boy, and everything else life brought in my way that made it a bit crazy at times. There were nights I would be working in the office till 9pm trying to get a financial report finished, only to come home and have to open a book to complete homework.

I took two years off when my Dystonia was at its worse, and I couldn't type anymore. I remember being in tears with my mentor Frances, at my college, having to explain to her my reasons for having to drop out of one of my courses I had signed up for in the fall of 2008. She explained to me that there were tools I could get my hands on, which would allowed me to use my voice and have the computer do the typing for me. However, I remember being so depressed and in so much pain that going back to school wasn't even an option for me. I held back a lot of emotions with my family, and besides the obvious of my friends seeing the pain in my face, I never truly shared my fears and concerns as to where I was going to be physically with this Dystonia. Two years after my treatments with Botox, I surprised Frances in her office and signed up for another semester. She told me that she was going to see me graduate if it was the last thing she does in her life!

So here I am today, sitting in my room and looking at my cap and gown for the first time. I am overwhelmed with emotions, and I keep stopping my typing to wipe my eyes. God has a plan for me, for all of us. Sometimes the road to get there isn't as pleasant as we may want it to be, but what are you gonna do? He put so many tools in my life to help me get through all the rough patches, so I grabbed them and used them. Whether the tool was in a shape of a little boy to bring me joy and make me laugh when I needed to, or a new job to make more money and help me stay in my home for all those years, a mentor to cheer me on towards graduation when she knew how physically and mentally drained I was, or even a husband to show me that I don't always have to do things alone. If I had given up and stayed stagnant, without accepting and allowing all the beautiful things God has put into my life help me get to where I am, I wouldn't be about to graduate in a couple of weeks!!!!!

No matter how much pain or discomfort you may be in, use the help that family and friends offer you. Get the proper treatment you need to help ease your pain. Don't sit and watch everyone else live their life, and be one of those who wants everyone to feel sorry for them. We all have a story. Dystonia can be debilitating, but you can live an amazing life with it.

Okay, so let me go and see if this gown even fits me! Lol

Monday, May 28, 2012

Easy On My Shoulders Lady!!!!

Saturday my husband and I went for a one hour foot massage at the foot spa by us that we love. Next thing we knew, we were both laying on separate tables having a full body massage. The ladies at the spa speak very little English, but are so adorable that we just do whatever they tell us to do. Lol

She started with my neck and then down my back, loosening all the tightness that's been building up inside me. Next thing I knew, she's climbing on top of the table so she can use the entire weight of her body to shove her elbows in between my shoulder blades!!!! I didn't know whether to tell her to get off of me or to press harder, because I know this massage was long over due. Lol. She apologized as she had to stop twice, once to use the bathroom and the second time to answer the phone. She kept me ten minutes longer than Bobby, so she can make up for the time that was lost.

When I finished getting dressed, she handed me a tiny cup of water, a handful of candy, and pointed to the door.... AKA, he was waiting outside for me in the car. He couldn't stop laughing when he saw me walk out. I looked like an unmade bed. My hair was a mess and my makeup was smeared all over my face!

It's been a couple of days and I still feel the pain. It's like she beat me up! Lol I literally feel as if I was in a brawl! I just finished doing a 1/2 hour yoga workout and I'm about to go to bed. Learning how to listen to my body and feel exactly where the pain is, I took the time to focus on those areas and use certain yoga stretches that will help reduce any pain. As I sit here and type, I can feel the stiffness in my shoulder blades, which carries on into my shoulders. However, I'm still able to control the twitching by breathing slowly and relaxing my body as my fingers are typing. The good thing is that I don't feel any pulling in my neck. Let's see what tomorrow brings, but right now I'm still going strong! I should be able to hear from Dr. Schwartz this week to make an earlier appointment.

Thursday, May 24, 2012

I Caved!!!!

Okay, so I caved.  I just called Dr. Schwartz's office and asked them to see if there has been any cancellations, so they can take me sooner than my appointment on June 29th.  I have to admit that I'm a bit down about this.  I really wanted to see if I could make my treatment last for 6 months, before becoming uncomfortable.  However, I have my graduation coming up on June 16th and I have a fear that I will be noticeably uncomfortable by then.  The last thing I want is to see photos of me at my graduation with my shoulders and neck twisted! Eeek!

Although I woke up with my shoulders up to my ears yesterday, I couldn't get myself to do any kind of exercising.  (It's been raining for day, so the weather isn't helping either.)  Today I did yoga and I feel much, much better.  Who knows, maybe when I hear back from Dr. Schwartz I'll tell him to forget it and that I'll wait till June 29th.  My body feels different every day.  I feel like that Seinfeld episode when Kramer wanted to see how far he could go in the car before he ran out of gas...and just when his friend was going to put gas in the car, they both decided to take it a bit further to see how much further till they ran out.  Oh no, I just realized that it didn't end well.  They ran out of gas and were stuck in the middle of nowhere.  lol  So this means that I should just go for the injections before my graduation, or my muscles will be in a pretzel by then.

Tuesday, May 22, 2012

Dog Walk for Dystonia

Hi everyone! I was just on the DMRF website and I saw a dog walk fundraiser being held in New Jersey. If anyone is from New York and would like to start a fundraiser, please contact me and let's make it happen together. We need to make more people aware about Dystonia. I still have plans on doing one on Long Island at a comedy club, but I need to do it when the time is right for me. In the mean time, please join everyone on September 23 or at least contact DMRF and find out how you can make a donation. Any amount would help!!!! Thank you. 7th Annual "DOGS for dystonia...a dog walk and so much more" September 23, 2012 Noon - 3:00 p.m. (at the lakeside) Turkey Swamp Park 200 Georgia Road Freehold, NJ 07728 An afternoon of games, contests, prizes, demonstrations, exhibitors, vendors and pet adoptions. Fun for children, families and dogs. You don't have to have a dog to participate, but you might fall in love with one and adopt it. For more information, please contact Len Nachbar at or 732-409-1112 x3.

Monday, May 21, 2012

Ditch My Old Yoga Mat? Who knew?

As I enter into my yoga studio, I feel a sense of surrender and calmness almost immediately. I don't know what it is, but I leave all negative energy that haunts my thoughts in life outside and I'm able to focus on nothing else but myself at this moment.
I sign in, take off my shoes, and find a spot in the studio to set myself up. My teacher usually does a good 20 minutes of warming us up before we get into the poses. First couple of poses I'm feeling good and able to achieve good posture in every pose. Quickly after I'm starting to feel my body sweat, but I'm still able to keep focus and concentrate on my breathing, which takes me right into the next pose. Oh no, she just told us to get into the dreadful downward dog position. My hands are actually sliding forward as if I'm going to do a belly flop right onto the mat! I had to wipe my hands a couple of times to continue into the pose. Now she wants us to stay in this position and hold one leg up towards the ceiling and then do the same with our other leg?...oh, I dont think so!!!!! I'm slipping and sliding all over my mat by now.
It never occurred to me that I needed to replace my old yoga mat and get a new NON STICK one. For months I've been getting upset thinking I wasn't physically strong enough for some poses, not even thinking that maybe it could be the mat. Immediately after purchasing my new beautiful mat I was able to hold poses, and found that I had even more energy towards the end of classes. Who new that old mats were not only smelly and slippery, but exhausting too??!!
I also found a site that had a natural mat cleaning solution that you can make at home....
Homemade Yoga Mat Cleaner Recipe
1/2 cup witch hazel
1/2 cup distilled water
40 drops tea tree oil
Essential oil of your choice (optional)
Add all the ingredients to a clean spray bottle and shake gently to combine. To use, just lay your mat out or hang it up and spray liberally all over the surface. Let it sit for a couple minutes and then wipe off with a wet towel. Let your mat air dry and you’re good to go!

Sunday, May 20, 2012

Is Botox Treatment For You?

I received a voice message from Dr. Schwartz, explaining to me that he had a woman come into his office who was just diagnosed with cervical Dystonia and was apprehensive about starting Botox treatments. He asked if I would be interested in speaking with her and talk her through my experiences with my treatments. I immediately called his office and told his secretary that I'm very interested and would be more than happy to comfort her. Dr. Schwartz is out of the office for the next two weeks, so I will have to wait to speak with him upon his return.

To anyone who's reading my blog that is also apprehensive about starting Botox treatment, please don't be. The treatment is quick, and the results can be life changing. I've had success with 11 injections for the past couple of years. I haven't had to change the dosage either. There's not one office visit where I'm not sitting in the waiting room with knots in my stomach. I wish I didn't have to be there, but the reality is that I do if I want to live a comfortable happy life. Every once in a while I still search the Internet to see if there has been any changes in the effects of Botox, because I have to admit that I do wonder what the long term effects will be on my body. However, I'm not going to let the fear of what could happen get in the way of how good I'm feeling at this very moment.

Botox may not be a successful treatment for everybody, but please don't let your fears get in the way of giving it a try. Just think if I had never tried Botox treatments, I would never had been able to start this Blog and help others with Dystonia. There was a time I had to stop typing because I couldn't keep my neck straight to see what I was typing. On top of all the pain I was in, I was also getting dizzy and nautious trying to focus on the keyboard.

Contact me if you still have any questions or concerns. I can only tell you about my experiences, so if you have any medical questions you will need to contact your doctor.

Saturday, May 19, 2012

Love and Appreciate Your Family

Today my husband and I went to a Communion. Our friend's father was recently diagnosed with a malignant tumor in his brain. As I was sitting at the table mingling with others, I found myself turning towards the table where my friend's father was sitting. He looked weak and a little out of it as everyone was taking turns giving him hugs, kisses, and whispering things to him to try and make him smile. You would have thought he was a celebrity by the amount of photos that were taken of him. First they took a photo of him and his wife, then they added his three children, then the grandchildren, and then anyone else who could be squeezed into the frame. My friend made a couple of runs to the restroom to let out a good cry, then fixed her make up and walked back out like she had just arrived to the party.
I'm the one who cries at Hallmark commercials, old photos and movies, and tears usually run down my face when I'm listening to friends tell me about things that they're going through that's upsetting to them. However, I sat there with a smile on my face as I watched all the love that was surrounding this man. It was priceless. It was almost as if the party was for him and not the little boy.
Life goes by so quickly. We often forget how important family and friends are. We take it for granted that we will be meeting up with them at another time. We don't usually wonder what if this was the very last time we're going to see this person. We only wonder this when we find out that someone is terminally ill. Perhaps hearing that kind of news, as devastating as it is to hear it, is a blessing because you get the chance to show how much you love that person more than you ever had before.
With all the aches and pains I get, at least I know that I'm not terminally I'll. What I witnessed this afternoon has made me realize how living with Dystonia isn't that bad. It also made me realize how much I love and appreciate my friends and family!

Friday, May 11, 2012

Little Blessings

It's just the little things that seem to make me happy in life; a warm good morning from my husband, a special hug and kiss good morning from our son, being around my family, being around my friends, receiving a call just to say hi, a smile to feel acknowledged, a hug to feel loved, a friendly text or email to feel remembered, and a beautiful house we made a home!

Don't take anything for granted.  It's hard not to feel that way when you're not feeling your best, but you need to look around and thank God for what you do have in your life.  I'm very blessed that I have so many people who care about me and who I care about, that make each day brighter than the day before.

When you're feeling pain because of your Dystonia, acknowledge who's next to you and thank them for helping you today.  Thank them for being the hands that cut your food for you when it was too painful for you to do it yourself, thank them for canceling plans with their friends and stayed by your side on the couch when you weren't feeling your best, thank them for being the arm that you needed to hold your hair back when you're getting the injections in your neck, and thank them for the times when they took the time to listen to you complain about what you're going through and cheered you up by wiping away your tears and holding you when you needed it.

God has put all these people in our lives.  We need to thank them and let them know that we appreciate all the help they give us.  Botox does mask the pain, so at times it's easy to forget when we needed that help from them prior.  We need to always give thanks!!!!

Tuesday, May 8, 2012

After Three Months...

It's been three months and I'm due for my next set of treatments.  I'm noticing that at the end of the three months, I can actually feel the Botox leaving my body.  I feel achy and have chills, as if I have the flu.  I've been told that this flu like feeling is usually experienced about a week after each treatment, but I'm feeling it towards the end.  The stiffness in my neck is slowly coming back, and my muscles around that area are sensitive to my touch.  However, I'm still able to do yoga and feel the difference immediately after.  Yesterday I woke up and my shoulders felt like they were in my neck, but after a half hour of stretching I felt completely relaxed and was able to get through till the evening before I started to feel stiffness again. 

My next appointment is at the end of next month.  I purposely made the appointment 5 months from my last treatment because I want to see how my body is responding to the changes I've made in my life these last couple of months, and not always depend on the Botox to mask the pain.  I've stopped working at the end of December so I can concentrate on finishing up my degree.  Although I liked the company I was working for and I've made very good friends there, the running back and forth to work, being a mom, a wife, taking care of the house, and doing my own homework (when I found the times I was awake enough to pick up a book) has added a lot to my Dystonia.  All the stress, even though it was all good stress, was carried on my shoulders and into my neck.  Being home has given me the opportunity to slow life down a bit and enjoy every moment with our son and my husband.  The things that used to annoy me, like straightening up all the time, cleaning, cooking and driving all over the place, are all the things that I look forward to every single day now.  I'm also taking time to take care of myself by listening to the needs of my body.  When you're in an office all day long, you don't have time to eat, exercise, or hydrate yourself.  Coffee is what kept me going through out the day.  Now I eat when I'm hungry, I drink more to hydrate myself, and when my body hurts I stop and take time to stretch.

The purpose of this blog is for me to create a diary of my progress and hopefully be able to help others who are also in desperate need to feel better!