My right hand...

I hadn't realized what a funk I was in until I fell and sliced my hand...
Here's the hand story...
I was walking back from the store where I had bought some drinks and a couple bottles of wine for my friends, we were getting our nails done.  I knew I should have been using my cane but I felt good, left it in the car and it wasn't that far?   I had previously promised myself that every time I drink wine, I use my cane, this day, I broke that promise, I had some wine with lunch...  The bag of drinks was kind of heavy so I was carrying it with both hands, not looking at my feet or the side walk like I need to do and tripped on the driveway.  As I got up, I started picking up the drinks, I noticed blood and looked at my hand.  The cut was wide open and I knew it was super bad, hospital, asap!!!!
My friend took me to the hospital closer to home.  At the hospital they went to stitch me up and the nurse realized that my tendon had been sliced.  She called a doctor in and they agreed.  I told them, I work with my hands, they are super important to me, I am a glassblower, I need a hand specialist!!!  The said there is a hand surgeons convention this week, all the hand specialist are out of town, so the earliest appointment I could get was 5 days from today...

Five days later, a great hand surgeon repaired my tendon, in his office...  It was hard core for me, he put on Sinatra while he worked...  He said that I it was 100% in half and I had also cut part of another tendon...  I had to wear a wrap like the one above for another week and then I went to Physical Therapy and got the Franken brace...

I was pretty stoked I had gotten my nails done before this accident.  I wore that brace for 6 weeks and it was noticeable!  Everywhere I went people would look or comment...  Also, I was using a cane, it so you certainly couldn't miss me. I heard all types of injury stories and saw dozens of people with permanently messed up fingers..  

I am determined to get 100% of my finger back because its possible...  Its the one medical injury I've had that can be fixed and will be fixed...  Currently, I have had 3 more braces for the rest of the recovering therapy.  The injury is one of the most painful ones I've ever had!  My p.t. says its the location of the cut which makes the pain so bad...  

So the big realization...
Until this injury I wasn't using my right hand.  I wasn't appreciating the fact that I could use it so easily...  I am so fortunate that ms has not taken my arms or hands yet! Getting numbness in my hands and arms scares me more than being in a wheelchair..  I love to create, write and touch...  I love to blow glass, paint, write and draw and I wasn't doing any of that... I was tired and sick but these days I am always tired and sick, I have to push through and really try at life again.  I was so discouraged and confused about my future.  Knowing that I couldn't push myself the way I used..  Not knowing how I am going to feel from one hour to the next, you get used to living with uncertainty and disappointment.  Its okay for me to feel this way but I can't stay there.  I need to appreciate what I have right now...  I need to use it or I most certainly will loose it...
This injury also helped me to open up, talk to people and the power words have.  I find that I am yearning to get back to work.  I miss glass and all that comes with it.   I know I am not the same person I was before and I can't have the same expectations but I need it to be part of my life.  I need to get lost in the glass and music again...
I also feel life passing me by and I realize I have to make the life I want.  I have to start doing the things I want to do or I may never have an opportunity to see if I can succeed as an artist.  I realize that up until this point, I haven't really listened to my artistic voice because I was so worried about paying the bills, I let that fear block me...
I do need to make money, I am trying my hardest to find something that fits with all I am going through...  I am caution to stay away from stress because its a killer for me.  I have had bouts of hives and welts, sometimes allergy related and sometimes stress...
I watched a very inspirational little video on the internet a while ago and the old man in it said, "Live everyday like its your first and your last."
I am trying to think of this whenever I feel sorry for myself...  I am truly blessed!

Waking up...

Mornings are painful for me these days...  I wake up super stiff, with crazy numb and tingly legs.   Sometimes I can't tell where my feet are in the blankets and it hurts to stretch but I have to do it to make them feel better.  Usually its very difficult to get out of bed and get my balance.  Takes me a few wobbly steps to get to the bathroom...
Once I am up, a warm shower usually helps warm me up and feel better.  I also take my meds in the am, zyrtec, anti-acid, flonase and my new favorite medication, Ritalin!  The ritalin really helps with my fatigue for most of the day.  Nothing crazy but I don't feel like I'm in such a fog...
The one thing that does makes me happy in the morning and helps me get up to face the day is my dog Pedro!  He needs lots of love and attention which I am happy to give it to him.  His routine in the morning is being lazy till he gets fed, then he wants to go outside and sit in the sun for a few hours.  Its so funny sometimes the ground is wet and cold and he will sit there and wait for it to heat up...  Knowing that vitamin D is important for people with ms, I should follow in his footsteps but it takes me a while to get everything done in the morning...  Then he likes to spend the day hanging out with my mom while she works from home.  Its amazing how he developed such a routine.
I also need to eat with all my meds in the morning so probably about one hour after taking my meds I get crazy hungry.  I'm usually not hungry so lately I have been making green smoothies, which I love!!! My favorite is spinach, frozen pineapple, frozen grapes, apples, banana, mango and coconut milk!  yum!

Tysabri...

Tomorrow I will get my 7th, monthly infusion of Tysabri.  So far, its been the best ms med I have been on.  It takes 2 hours at the infusion center, one hour of meds and one for observation and flushing with saline.  After the infusion I usually feel more fatigued than usual, stiff and full.  It usually takes a day or two for me to start feeling better.  On a good month, I have a few weeks feeling good then the symptoms start getting stronger as I get closer to my next infusion...
We are hopeful that I might improve even more after being on this medication for a while but mostly the medication is hopefully slowing down the progression of my ms.   I am willing to try anything that doesn't make my everyday unpleasant...
I am also trying to be health conscious, trying to reduce my intake of gluten, dairy and processed foods.   I try to exercise or stretch everyday which takes a lot of energy, this makes it tough to get a lot done in a regular day.  I am trying not to stress myself out thinking about what I am not doing but enjoying the things I am doing.  Learning my new limits and avoiding denial which can lead to injury is my new full time job...
I am hopeful I will be able to create work and at least work part time.

Sharing my experience...

I have been wanting to share what is going on me with my many friends and family who are interested.   It has become hard for me to reach out since I was diagnosed with multiple sclerosis...
In the summer of 2010, I did a cartwheel and pulled/tore my groin muscle.  For a few month I rested hoping it would it heal, only getting feeling worse, unable to heal.  I lost weight, my back, muscles, joints and bones ached and screamed.  There were times when I felt like the incredible hulk, like my back muscles were moving on their own, I knew something was really off.   I decided to find the best doctor I could find and after a few questions and he suggested I see a neurologist right away!
This neurologist ordered an mri and spinal tap right away.  He suspected I had multiple sclerosis.  I remember being in shock leaving the doctor, I was completely numb, in total disbelief as I walked out of the building and called my mom.  She was in greater shock than me, thinking this had to be a mistake.   Hours after I had my first mri, the neuro called me and suggested I go to the hospital and taking a 3 day solumedrol steroid infusion.  I was ready to do anything to make me feel better so I went right away without even understanding what all this really meant.
The steroids were intense and I feel like that were all my ms symptoms came up and stayed up since then.   My symptoms include and are not limited to, numbness and tingling in the bottom of both of my feet along with numbness that crawls up my legs, weakness on my right side, foot drop, urinary hesitancy/urgency, cognitive fogginess, the ms hug (feels like you are wearing a girdle around your waist/ribs) and severe loss of balance.  Everyday is different, different apparent symptoms and different limits.  This led to my inability to drive a regular car.  About a year of not driving, my mom bought me hand controls for her car so I could drive again.  I am cautious about driving these days due to the difficulty it can be at times, the energy it takes to pay full attention and the cognition it requires.
My walking has been severely affected, I walk with an unusual gait, like I'm drunk which has led me to having to use a cane.  Ive been trying to turn this into a positive, starting to collect cool canes for each outfit, I have a handicap pass which is like v.i.p. parking and get wheelchair service at the airport!
  At the time of my diagnosis I was living in Eugene, working at one of the best glass shops around, Living Glass Works!  The fatigue, balance, pain, cog. fog and other symptoms got to me while I was struggling to find a new normal and get a handle on my new body.  I tried Copaxone and Rebif, which were daily/every 3 days injections I administered myself.  These two meds had terrible side effects for me, flu-like symptoms and incredible fatigue.  It became harder and harder to work which took its toll on me emotionally, thinking I was done blowing glass for sure.
The whole experience was terribly heartbreaking and depressing for me.  For a while I just gave up, took stock of myself, my life and how was I going to make it in this world with this new challenge ms. I became determined to try and be a more healthy person which requires a lot of energy for everyone but even more with someone with ms.  Luckily, I was approved for SSI which gives me a little help during this time but its not enough for me to live on.
A few months later, my boyfriend who was helping me with my saber business and I decided to move down los angeles, to be closer to my family.  Together we kept the sabers going for about 1 year after I got sick.  It was increasingly difficult for me to keep the orders in order, packing and shipping.  Later, after breaking up, we decided to stop making the sabers for a while or until I want to make them again.
Luckily I have always had an incredibly supportive mother, friends and other family, who made sure I had the best care possible even if it put her in the poor house.  Being a self employed glassblower and a person who is not so good with money, I had very little saving and the worst insurance (in case of emergencies).  This was a huge emergency which has become my life and I am forever grateful for everyone who has been with me for this battle.