Inspirational friends...

I am so incredibly lucky to have so many inspirational and supportive friends...
I feel like I am a part of all of you...
Such a big family of friends who have one love which binds us all together...
glass...
It is the common passion that keeps us all so interested...
glass inspires me to learn more...
try harder...
get better...
Knowing the traditions of Murano and glass history I know that I will not become great until I really work at it for at least 20 years...
Only if you learn many different techniques and hone your own craft then you can have an cohesive understanding of glass....
I see it in some of the glass artists I have been fortunate to watch and also learn from...
My experiences learning glass and becoming a glass artists has been the most rewarding, challenging and necessary pursuit I have ever taken...
I am blessed, I took this dirt road, away from expectation...
following my dreams...
trying to pursue things that I always thought was out of my reach...
Things I never dared to imagine...
I do have dreams, even with this disability...
its time for me to really battle through and make some of these dreams come true...
Dreams become reality...
Even now I'm amazed that my world didn't completely fall apart...
I am still here, modified...
I think facing fears beyond what I ever imagined has really helped reduce the amount of fear in my daily life...
I only have today...
Today is my tomorrow and I need to enjoy it...
I can plan for tomorrow but I feel like I am walking a tight rope of life...
Every time I get up...
I sprained my ankle on Super Bowl sunday...
Nothing broken but it hurts crazy bad...
makes it harder to walk and painful...
I feel like its slowly getting better...
I'm just super tired of having injuries as I am accepting that it happens....
I need knee surgery once I heal...
Maybe I'm secretly freaking out about the surgery?
Most of the time I internalize my feelings and thats when the welts come...
Hopefully no welts...
For a while there I felt like posting my injuries...
Not this one...
I'm tired...
I need to work on my body harder...
Its amazing how much a week of no exercise can mess with my body...

The trip and my ms...

Every trip is measured different...
I have been going to these conventions for years...
And then I started to change...
This twice a year event really tests my person...
Its exciting and fun seeing my peers, friends and amazing glass...
Also its vegas so theres something for everybody...
Good times abound...
The first trip after diagnosis was a serious trial...
We drove from Eugene, Oregon non-stop to Vegas...
Of course we all work like dogs till we get to the show,
Then party hard and come home,
Do it all again...
So I was pushing myself harder than I ever would do now...
I didn't eat right, that,
coupled with the fatigue led to a huge crying breakdown episode once we checked into our room...
My boyfriend at the time was great at handling me and helping me move through many hopeless and depressive thoughts...
I mustarded up just enough energy to visit my good friends for the first time since diagnosis,
They hadn't seen me since I got really sick...
They commented on how much weight I had lost...
Looking for signs of sickness..
I had a hard time walking through the hard rock to their rooms and the elevators...
It was bringing me down...
Feeling extremely self conscious...
I knew some people were finding out about my new diagnosis...
I felt like they were watching me...
Judging me...
I know I was...
It was a tough trip...
All my trips to glass events end with inspiration..
Mostly memories of good times, good people and a lot inspiration...
The next show I wised up and rented a scooter...
Changed everything for me!!!!
Helped to make me feel more normal...
Less self conscious...
Fortunately I have the kind of best friend who is fearless and rents a scooter with me!
We had the best time :)
Scooting everywhere...
We barely had to get a taxi the entire week...
Went up and down the strip...
All day and night...
The wind in our hair...
It was a great adventure!
Now every time I am in Vegas I rent a scooter...
Even just to walk through the hotel...
This trip I made some new changes to also help make me feel better in vegas..
Brought a vitamix blender...
Made green smoothes every morning...
I made sure I had sleep and didnt take shots or get really drunk...
Drank Kombucha in the mornings...
Kept hydrated...
Makes me feel good that I had made decisions that led to me feeling good...
Its always a battle...
Especially travel...
I just hope to have at least one night when I can go out and party with everyone else...
Usually I try and make sure I don't have to work the next day...
This time I brought my cane to the party just in case...
You never know how far your gonna have to walk...
In hind site, I should've taken my hurry cane...
Hide it when I had my hands full...
Usually at clubs and bars theres not enough room to fall anyways..
Plus drunks usually look like they have ms...
We saw a guy fall flat on his face as we walked into this party...
I brought the light saber cane my brother got me to Vegas but barely took it out...
I have such a horrible memory at times...
I knew I'd be drinking...
I decided to keep it in the room most of the time...
Its okay that I have to say no more often these days...
I am hoping that I know myself better these days...
The last few shows previous,
I kept getting these big allergic welts...
Didn't know if it was a food or medication allergy...
Apparently its both and I am highly allergic in general...
I have seen dr.s, had tests, etc...
I get these flare ups at times when I am emotionally stressed...
Haven't been taking care of myself...
Eating inflammatory foods...
Drinking and not resting enough...
Mostly its stress related...
My mind controls these welts...
Its one of the craziest side effects of ms that I really dislike...
This trip, I only had a tiny one...
It came and went quick..
Which is great because at times, my stress was off the charts...
I am hoping I am learning to deal better...
Putting the glass down...
Saving some spoons in my back pocket...
I hope that I listening to my body better...
Work in progress...

Extremely grateful...

I am amazed...
speechless...
overwhelmed....
By the outpouring of generosity and caring that I receive from the amazing glass community...
I never imagined that anything like this would ever happen for me!
The people from one of the glass conventions,
put together an auction to raise money to help me pay bills, etc....
Completely overwhelmed by the whole experience..
So many people donated...
Artists I knew....
Artists I admire...
Artists I haven't met yet...
Companies and friends...
Donated glass to be auctioned off...
At the auction,
I could barely talk...
express thanks...
attempted to let it all in...
Took me about an hour and even then I was still incredibly nervous and emotional..
friends coming up to me to show support...
well wishes...
shared stories...
true friendships...
real support...
It was truly amazing!
Then, of course are those who bid on the pieces!!!
Spending money on glass for me!
People I knew...
People I didn't...
Amazing new friends who showed real support for me...
The cause...
Some said it was good to give to a good cause..
It was incredible receiving...
I couldn't really process it without completely loosing it,
so I held it in...
I felt stronger than ever...
Incredibly grateful that this community that I love so much,
loves me back!
Doesn't get better than this :)
Especially since I haven't been able to do my glass for the last 2 years...
One of my friends and fellow artists,
expressed comfort in this auction...
Its like an insurance policy for our community!
For friends in need..
The people who put on the auction gave me the pieces that didn't get bid on...
To auction off myself or try and sell...
I don't want to let those who donated down...
I wasn't able to see all pieces that were donated and haven't seen a list yet...
I hope that the artists realize how grateful I am...
But I guess if you give,
its not about receiving...
I have renewed dedication to this movement and this glass community...
I plan to get more involved and give back...
I need to get back to creating,
even if its just a few little things...
I miss the glass routine...
With this money I can rebuild my studio...
Get some tanks in there so I can get back that part of myself...
I have this radiating hope...
Even though I am battling this ms,
I don't and can't give up on my dreams...
Its just not the way I had planned....
I met two other glass artists who have ms...
That really was the greatest gift I got on the trip!
It was great to talk with them and see how they are dealing...
What symptoms, meds and diet they are using...
They both seemed to agree good nutrition is important....
also balancing stress...
It was truly great to have them come up to me and open up so freely...
It is like a secret club...
I am hugely grateful I have been so open and honest about this experience...
I hope this the beginning of a new direction in my life...
Hoping I will surprise myself...
Extremely grateful...

An emotional day....

I really don't know why I am so emotional today...
I suppose I haven't felt this way in a long time...
I've been strong for my friends and family during the holidays...
Perhaps now, 2 days away from my next infusion, its getting to me...
It sucks sometimes when my family and friends ask me,  "how are you doing?"
It sucks because they really want to know...
I can't bear to tell them the truth...
Sometimes I feel its best to smile...
Give the usual easy answer,   "I'm good"...
Which is true, for the most part, I am good...
I am just not good physically...
My body is not doing good...
I am doing what I can...
I try to diet, exercise, practicing patience and let go of stress...
Then I look at my bank account...
I have no job right now...
I am not making anything so I feel so behind...
I am busy 24/7 working on the diet, exercise and life maintenance stuff...
I feel people want more from me at times...
36 years old...
I have more in common with my elderly neighbors than most of my peers...
Most of the time I am good...
Ignoring the pain and uncertainty...
Its always there, never letting up...
I will let this sadness and frustration out right now but thats it...
Sometimes it all gets to me...
I can't stay here...
I can't allow myself to indulge too much in negativity...
I must go on to try and make tomorrow better...
I will take my supplements...
Eat as good as I can for the day...
I will exercise...
Keep moving because I can feel it...
At least its something I can control...
I can still move...
But then theres never ending pain...
I banged my eye today on the sink...
Bending over without really looking...
Not paying attention and now I have a black eye...
My first black eye of the year...
I fell a few times last year...
Two of the falls sent to me to the dr...
A sliced tendon and a banged up knee cap...
I don't want to get another surgery...
I can't exercise the way I want to with my knee like this...
I had to let my hand heal so I could use crutches...
I really want to fix my knee...
Try and get my balance back...
I am going to work on my balance and exercise as much as I can with this knee injury...
I see the dr. next month, then the neuro...
So many bills...
So many doctors, appointments and tests...
So many bills...
Exercising and getting the knee strong...
The knee is nothing compared to the everyday ms pains...
Never ending...
I feel pain when I move from side to side...
When I stand...
When I sit for a long time...
I am so very self conscious...
Aware of the way I move...
Some of the only times I feel at ease...
When I have had a few drinks...
Sounds horrible...
I'm trying to be honest...
I have good moments without drinking as well...
These days its about a week after my infusion...
For about a week or two...
If I have my meds...
Its so hard to get things done day to day...
I have so many intentions...
Unfulfilled...
It really gets to me...
Makes me feel stress...
I am feeling this right now so I am writing it out...
Knowing stress is only a thought...
Writing it out...
So its not stuck inside me anymore...
Righting it out...
So I have the power to stand up....
Fight on...
A smile on my face...
I really am truly blessed...
As sad as I get...
All I have to do is look around....
I see what great people I have around me...
I am trying to get better...
Letting people in...
Letting people help me...
I am lucky to have people who want to help me...
Seems to be a challenge for me at times...
I like to be the helper not the helped...
I am definitely a work in progress...


Update:
After writing...
Exercise, writing, good food and weed...
I feel like the positive me again...
Thanks for reading...

How hard it is to be honest...

I just wanted to start sharing my experience in a blog because its so tough for me to be honest about how I am feeling...
Life has been super tough for me lately...
I was diagnosed february 14, 2011 and ever since ms has been a part of my daily life...
So hard...
I still look good...
In fact I look better than I ever have!!!
Minus a few white hairs...
But then stuff starts piling in, my injuries, infections and allergies...
Time passes in a flash...
Everyone asking I am okay...
Missing opportunities...
Not able to reach out to friends...
Inside I want to write everyone, let them know I miss them and love them but the ms troll get in front of me...
The true challenge is to be truly honest and that is the only thing people relate too...
otherwise there is no point...
Everyday I learn valuable lessons..
by the time I am old I will be smarter...
Nothing like a good dress to cheer a woman up..
I want to share all day long...
I want sharing to be a habit, a release and also help others...
I need to be honest about it all...
bladder issues...
battle with pain...
foot drop...
fatique...
ms hug, tension around my mid-back/ribs...
the cog. fog...
the miracle stories of a friend of a friend...
is that a relapse or a bad day?
Is this symptom lasting for more than 48 hours?
How can you plan when you feel different every other day?
Pain upon arising every morning...
Tight muscle cramping...
stretching every morning in pain when I wake up...
Terribly stiff hours of the day...
Have to eat...
Eat clean for good health but that takes a shit ton of energy...
Tired by lunch and havent done anything but life matinence...
I have hand controls on my moms car now because I cant afford a car, nor have the energy to drive that much...
I dont miss driving that much...
Hand controls and a handicap pass... super vip!
the cane that is as much a part of me as my phone except I can go longer without the cane...
Super emotional, but trying harder than ever to be honest which comes with tears...
Tears of fears and disappointment...
I hope that after these few years of adjusting I will be able to conquer this ms thing...

my flight was delayed....

I had a great time traveling from Seattle to Los Angeles...   I was at the airport for many extra hours but met so many nice people.
I don't remember ever having such a good time traveling and meeting so many interesting and kind people?  Maybe it was my cool clear cane or maybe more than that, maybe it was me?
I was more willing to talk to others and be kind...  It was amazing...
An older lady bought me delicious oysters at the airport bar and we had a great conversation.  I also talked with a 24 year old from Alaska who was super excited to be traveling in the lower 48...  He wanted to travel and see the world and his excitement was tangible.   He loves working hard so he said he was trying to save up and try and travel every three or six months, somewhere new.  These people were so nice.  Of course there was also the guy who checked me in.  With a cane he made sure I had proper accommodations but I was early I insisted on walking.  There was a guy behind me who asked me if I needed help and ended up talking to everyone in our security line because we were all surprised we didn't have to take our shoes off.
Our flight was delayed over an hour so Virgin gave us free movies and a free drink or snack.  Having the tv and watching movies I think really helped with peoples attitudes about the delay even though we didn't land till 1am..

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!