Monday, September 29, 2008

A Little Hitch in My Get Along

( Sherrie @ http://happytiler.blogspot.com/ made this for my birthday. )

I have spent the last nine days in a beautiful fog of joy and gratitude. I started this month with a fire in my belly for the ALS walk, to that familiar old fear of falling, to the anxiety of overnight family stays. Everything I have learned in my 17yrs with ALS was put to good use over the last 11 days. Gratitude for love, patience when things get hard and someone up there is watching out for me.

I had checked my emails in between outings, dinners and games. Imagine my surprise to learn that we have at least 20 walkers and have raised over $800 dollars. Some of my friend's and people I don't even know are fundraising on their own for me. I'm speechless, which is saying a whole lot if you know me. THANK YOU WARRIORS!

The fall last week could have ruined my birthday plans, but my brother saved it. He was there while Dave was working. I laughed through his whole stay and was grateful for his "don't sweat the small stuff" attitude. We have been seen racing through the Longs parking lot, me in a wheelchair, to catch a shuttle. Coming and going out of restaurants, without a walker, stumbling and laughing as if drunk. Trying to shove me, a 118lb one armed rag doll, in and out of his truck(gently). He even had to help me get untangled from my clothes while dressing, due to my one bad hand. Clean my tattoo and help me eat, without batting an eye. His joking manner took the hard things and made them fun.

My oldest came back up to visit with my dad and brother, while they were here. I started to stress out over details , but Michelle stepped up. She was VERY helpful and even showered and dressed me. Being one handed and tired, it felt great to be pampered. Women just instinctively know what other women need. Her and Dave worked as a team and that is how I'd always dreamed it would be. Everyone loved the house, especially my dad. Did I mention I also took everyone's money in poker. TeeHee

I took Friday morning to slip off to see my doctor about my sinuses. She spotted my swollen wrist and said we need to x-ray that. I said nah, it's fine see? wiggling all my fingers at her. It was not as sore as my re-injured shoulder, it couldn't be broken. Wrong! I broke my dang wrist! So Tuesday I go back to the Ortho guy to get fixed, splinted or whatever. I had refused to go to an ER on a weekend with more family coming in. My blogging and walking have been limited by the injury, but I've caught up with my blog reading. I must wait to see what they do before I start commenting and posting regularly. I'm a tad paranoid about falling now because I've been reminded that, for me, walking is a privilege. You can't use a walker with one hand.

My friend Renee' brought her whole family up for a birthday visit. She has been my friend since the fourth grade. I was at her wedding to Jack and watched these beautiful children grow up( Monica 16 & Jessy 21). That was a great gift all by itself, but she always makes swiss steak and real mashed potatoes for me too. She owns a day spa and brought spa goodies and a big bag of her special chocolate chip cookies She looks FABULOUS for 47!

When I am cured these emotions and kindness will be what I carry with me. This is why I fight and yet embrace the lessons ALS has brought. I watched "The Music Within" last night and it was about the man who fought for the passing of the ADA (American Disabilities Act). We have come along way in the way we treat the disabled. The money I raise will help money for a cure, but also to give patients resources for a better quality of life.

You can become a part of "Tammy's Warriors" on the Sacramento chapter ALS Walk on Oct. 25th. here http://web.alsa.org/goto/TammyWarrriors


Thursday, September 25, 2008

My Heart is Bursting!

My brother gave me these gorgeous flowers for my birthday. He came up for nine days to keep my birthday fun going in between all of my guests and Dave working. He is a big help as the next wave of guests come in this weekend. Thank you all so much for the cards and emails. SMOOCHES!




My week began with a newspaper interview from our local paper. It's a great way to make your community aware of ALS and join in the fight. I have been so moved by all of your support in my ALS walk. We have raised $585 so far, GO WARRIORS! To join us go to http://web.alsa.org/goto/TammyWarrriors. We have many walkers and virtual walkers joining us on Oct. 25th. We have virtual walkers from France, all over the USA, to right here in No. CA. THANK YOU GUYS!



The next fun event was a five day visit with my youngest daughter, hubby and my TK! I had a bad fall on my wrist 15min. before they arrived. They found me on the floor and it freaked them out. Getting me up was not easy, but TK laying on the floor next to me, asking if I was OK, really helped. I was stuck in a wheelchair all week, but I was surrounded by family and friends. Annie from http://inmidreamz.blogspot.com/2008/09/memory-making-apple-hill-style.html came out with family and friends to enjoy a day at Apple Hill. She wrote all about our fun, with photos, so check it out.


Guess who LOVED the pool even though the water was a cold 68 degrees? He really had fun at gramy's



The Big Surprise!

Dave and I are a pretty conservative couple, but I wanted to step out of the box and do something wild for my birthday. Dave was not a fan of my idea, but was very supportive. He had to work and wanted to be there to hold my hand, but he couldn't. I picked my son in law to take me on my birthday adventure instead. TK and his daddy took me to the Electric Pencil while the rest of the gang gambled. Yup, I got my first tattoo! I bet you didn't guess that one. ;) My son in law knows a lot about tatts. TK said "gramy tattoo, ouch."


Why? I wanted a symbol of how I have lived the last 17 years of my life. I have lived with a heart of a warrior, embraced in love and faith. The amazing Kat at The Electric Pencil came up with this.





Yes, it hurt like hell, but I love it and Dave likes it too. :) I put it on my lower back (also known as a "tramp stamp"). lol No one will really see it and I did have a "moment" of what have I done. I loved the adventure and symbolism of it. Dave is taking great care of it. Thanks Kat!


Dave bought me a few favorite movies and a hypoallergenic baffle box feather mattress pad. My sleep number bed and memory foam pad are not enough any longer to protect my pressure points. Cross your fingers that it works, the alternatives only fit hospital beds. Not an option for us because they are not made for two. ;)


More birthday to come...




P.S. After this weekend I will get to all my favorite blogs.

Tuesday, September 16, 2008

I'm Walking the Walk

I have lived so long with ALS my own family does not even see it anymore. Now that we live an hour and a half from an ALS walk, I'm walking. I have asked my family and friends to walk by my side as "Tammy's Warriors." This walk is not just about a cure, but also the money raised goes to survivors like me to live a better quality of life. Equipment, resources and support are so important as we progress. To walk with the people I love is invigorating. Just think how much hope a 17yr survivor can give.

A few bloggers will be joining the walk but you can be a virtual walker with "Tammy's Warriors" by being a sponser. If not, join us in spirit on our walk. You know I'll share my big day with you all right here. It's Oct. 25th and if you would like to be a part of it in any way go here http://web.alsa.org/goto/TammyWarrriors

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My first birthday celebration weekend started with my oldest, Michelle. She brought hubby Jake and my grandpuppies, Sampson and Max. Toddlers without diapers! Poor Nikki needed a doggie spa day after these two pups invaded her world. lol

I was spoiled with a basket of "Whole Foods" goodies, dinner and a homemade big breakfast. We played Wii as Dave and Michelle physically played tug of war with my hips to see who could hold me better as I golfed. Michelle won the tug, but it gave me a peek into Dave and Michelle's future with me. They get along great, but Michelle naturally does the caregiving she was raised doing. We also played Cranium Wow, a must have game. They enjoyed the weekend and I'm hoping her anger at my move is gone. I don't mix my family for many reasons so there is more celebrations to come. It also stretches out my birthday. :)

I have a HUGE birthday secret to be reveled on my birthday. I'm doing something really wild for myself. ;) If you already know it, don't tell!

Baby Max, a minature doxie.


Max and, 3 month, older brother Sampson


Don't ya just love puppies!

Monday, September 15, 2008

Monday Photo Shoot- "Water in Motion"

Carly has started a Monday photo shoot and I had to join. She lives in San Francisco and is a wonderful photographer/blogger.
Come join my friend Carly!
My favorite sprinkler was perfect for this prompt!
Click to enjoy.

Click to capture

I recieved a visit with my blogger friend Amber at http://believingsoul.blogspot.com/ last week. It was as if I'd known her for years and she brought lil G, who is a doll. HAPPY BIRTHDAY AMBER!


Friday, September 05, 2008

New Sight and Inspiration

(I'm slowly returning to blogging and did not intend this to fit SS's "Miracle" prompt, but it did)

I finally got my glasses! I got progressives over a year ago and realized I could not walk with them on. My poor balance and glasses did not mix. Before I could return them I lost them, and then we moved. I can't believe how beautiful everything is now. My big TV makes me jump with the HD and my yard is so awesome. I'll be 47 this month and have thought of many ways to celebrate the gift of another year and the new sight is a cool start. To live with ALS for 17yrs and still be walking is my miracle.


While being fitted for our glasses, the glass fitter asked if I knew of Jason Becker. He's a guitar legend that got ALS 19yrs ago, at the age of 20, and lives in CA. He is thirty and is still composing with a blink of his eye, one note at a time. I had to share this video, it blew me away!



This documentary is worth your time and you will be inspired!


http://video.google.com/videoplay?docid=177512802874313037

if that don't work try this

http://www.youtube.com/watch?v=OFjQgDe_a0E&feature=related

Somewhere


There is a rainbow
with a bow of colors
that makes us pause
in awe and wonder.


It covers the hopeless
blankets the poor, the sick
the chaos, the tensions of life
a magical reminder of hope.


In our fast pace lives
with heads down
simply trying to get
through til tomorrow.


We forget to look up
at the signs, the beauty
the promise, the desire for joy
in a arch of shimmering glory.

Tuesday, September 02, 2008

In Sickness and in Health

When I wrote my wedding ceremony I kept the part about in sickness and in health, until death do us part. I conveniently and purposely left out obey. ;) Don't get me wrong, I have complete faith in Dave's love, but I feel there was a smidgen of denial when he said "I do." When we fall in love we rarely think about our spouses personality realities. We don't scrutinize our spouses, before marriage, to see if they could handle the other getting a devastating illness. Most of us put our faith in love, but in my case I had to ask the hard questions. He passed with flying colors. So why is it I fear becoming a burden?

Some people are natural nurtures and some are just not. In many marriages it's not always a 50/50 deal. There is usually one partner who is the "glue" that binds the family together. Ironically, if that is the spouse to fall ill the family can fall like a house of cards. It starts with the healthy spouse and they set the example for the kids. The healthy spouse can get angry that ALS has stolen their dreams, changed their future and has no cure. Good caregivers are hard to find and very expensive for full time care. The spouse must continue to work and then becomes a stressed out caregiver once he returns home. Finances get drained by part time care. The spouses might yell, bully, don't listen to the doctors, are physically rough and threaten to put their loved one in a home. The once strong spouse is put in a resentful atmosphere feeling like a burden. THIS IS NOT ACCEPTABLE! They did not ask for this and deserve love and understanding. They do not enjoy the "luxury" of being bathed, a stranger wiping their ass and being stuck in a chair!

I'm reading more and more about stories like these. Some get divorces to afford home care, but may lose their children. Some have gone to a home for their families sake but receive horrible care. I am shocked by the fact that this is not rare for families living with chronic illnesses. The abuse has got to stop! Barack said in a debate with McCain he wanted more help for patients with diseases like ALS, but will he do it? I'm holding him to it because I am sickened at the thought of these stories. There are many spouses who are excellent caregivers, but what about the many others? We need covered home health care added to more affordable heathcare. These families have to be poor to receive help, so what happens to the sick middle class?

I see Dave through new eyes and I'm very lucky to have him. I'm working on not asking for something when he's busy because I hate that impatient "WHAT?" I tell him I can't see through walls and he apologizes. Is that just a man thing? He is a wonderful man, married to a handful and yet he still loves me. We have a plan that we must save for now. I will have part time caregivers and I am willing to go to a hospice for respite care once in awhile to give Dave a vacation. I know where Dave will struggle and when I will need to be more patient. My mantra is "don't sweat the small stuff" which I really suck at.

If you have a sick friend, single or married, don't be afraid to lend a hand and include your kids. Most people will lose friends on their journey so they could use a real friend. Even if it's a visit and a hug, because you never know what's going on behind closed doors.

This truth needed to be told.


Photo by Deviant Art called The Rainbow
by fearless vampire