Some thoughts on life

Some random thoughts on my life...type when I can keep my eyes open despite the fatigue...fight the pain with meditation until the hydrocodone can drain it from me temporarily...numb burning feet...muscles spasming in my legs, arms, back, neck...leaking bile...soaked clothing waking me in the night...waves of nausea nearly constant...try to meditate and focus away from my body...smelling a piece of bread or some fresh cooking veggies...but I can't take fighting the urge so I eat some to satisfy it...punishment with pain, nausea, vomiting...it all comes back out...tried jejunal tube feeding last night...it came out my stomach tube...my gut is working backwards...see my beautiful boy enjoying toys and bugs and clouds...wondering if I will be here to see him become a man...love of being a mother keeps me going...insurance lost so the bills pile up and I wait for more loans...medigap could have helped but the papers continue to say denied...gastroparesis...IV nutrition therapy...dystonia...fibromyalgia...written out in case I don't already remember why...working when I can...wondering if graduation could or even should become a reality...what will I do next...friends caring, sharing, giving...family loving, helping, never leaving but fearing...waiting...wondering...searching for my peace and freedom from suffering.

The photo is of my son playing in the surf on our recent summer trip to South Carolina. I loved watching him play in the waves.

YMCA class

We signed up our son for classes at the YMCA. It is just a general preschool class for two year olds for a couple hours three days a week. He just started going this week and he loves it. They have some free play before a circle time with a story, an activity and then a snack. He gets so excited about telling what he did at "school". On his first day he said "Mommy today is Monday!" I said "Did you learn that at school?" and he says "yes Mommy and we walked on paper". They apparently read a story about footprints in the snow and the art activity was stepping barefoot into a tray of paint and making footprints on paper. He is already making friends and even has asked to have some friends over to "my house to play with my big cars". It is wonderful to see him so excited and growing up. This will be a wonderful program for him and I am so glad he is excited about it.

In the picture he is bundled up for our first big snow this winter. He made snow angels and had a snowball fight with his Daddy.

Lazy Day

It's a lazy day. Warm and overcast outside. Me...inside on the couch with stomach pain and muscle spasms. The heating pad and hard candy are comforting and I don't want to move. My son demands "Mommy get up...Mommy play with me". Everytime I stand up or breathe deeply the spasms clench in my abdomen and my back. It has been this way since the surgeries and I wonder if I will ever recover fully. Dystonia seems to have spread into areas affected by the surgeries. I am resting today so that I might be able to go to a New Year's party tomorrow night. On days like today I wonder how will I ever be able to go back to work at the lab?

I am taking about 9 medications right now and it seems like it is always time to take pills. My GI doc has also asked me to count calories. Greg bought me a book so I can look up the foods, but I eat so little at a time that it always becomes a guessing game. Next week the dietician who works with the pharmacist to mix my TPN wants to know everything that I eat for the week. I will have to be more diligent about describing what I'm eating. I keep track of the calories and medications in a notebook. Like a person with diabetes, I also have to periodically check my blood sugar because I am easy to become hyoglycemic during the day and can get hyperglycemic at night during TPN administration. So far I have only had problems with low blood sugar rather than high. If I stop the TPN and don't eat for a while my sugar drops and I have to eat or take some glucose.

So, even on a lazy day life revolves around gastroparesis and dystonia. I feel a need to change this and focus again on school and family. It is a constant battle with these diseases. Getting back to the lab and doing dissertation research will help me let go and actively live with chronic illness. I plan to start working again next week. My son also does a wonderful job at distracting me from the pain. When I gasp from spasms or pain he brings me his stuffed animals and blanket and says..."Here Mommy...It be Okay...I love you!"

P.S. Creme Savers are awesome and make gastroparetic life worth living.

Happy Holidays

Happy Holidays to everyone. IU is one of the best music schools in the country. We love going to concerts, shows and opera here. Aren't these guys great!?

We are celebrating Christmas with our families, although they are coming to us this year because I am not yet fit for travel. We will also celebrate the New Year with friends and at the Tibetan Cultural Center with the monks and other buddhist friends.

I am doing a bit better on the domperidone and am able to eat small meals. I am still having difficulty using the j-tube for feeding. The TPN gives me about 1100 calories so I try to make up the rest eating by mouth now. It is a shame that I went through the surgeries and everything only to have so much trouble with the feeding tube.

My son is thoroughly enjoying the holiday gifts from our relatives. He has really grown up (2 and a half this month). My parents got him a tool bench that looks like the real craftsman tool bench and comes equiped with every tool you can think of including a handsaw, jigsaw and circular saw (which he was sure to point out "It's a wood saw Mommy")as well as calipers, a level and power drill. We are waiting to see what he will construct.

Terrific Twos

My son turned two years old this month. We enjoyed having some other children and babies over to celebrate his birthday. It is hard to believe that two years ago I was laying on my back looking at him after 22 hours of labor...14 hours of it with remarkable pain. I had him without the use of medications or epidural because of worry that my dystonia or the baby might be affected. He was a big baby...9 lbs. 11 oz. and 22 inches long. In the midst of the pain and relief of finishing the pregnancy I was in awe of him and I still am today. I love experiencing the world through him. Children have such unique ways of thinking and understanding that remind us of the splendor of life and the world around us.

He received a sand box for his birthday and is thoroughly loving it. He enjoys dumping the sand over his legs and feet and running his fingers through it. I still have to remind him to keep the sand in the box and not to throw it, but I am glad that he is so happy with it. Bubbles have also been quite entertaining to him lately and he is learning how to hold the wand far enough away to make it work. The few bubbles that he has blown successfully usually appear with a ppllbbfffttt and a bit of spit, but hey at least he's getting it. I'm looking forward to many more days of playing in the sand and blowing bubbles.

Isn't it amazing how much a child changes in two years. The pictures show him at 3 months old and 2 years old playing in his new sandbox.

Springtime Pleasures

I have always enjoyed the outdoors and Springtime is particularly pleasant. Dystonia has been hard on me lately. My left foot and hand are curling and cramping quite a bit and I have been feeling a bit frustrated that the Baclofen isn't working as well as I would like. It helps to have the nice weather. I love getting out of the house and walking in the wilderness or just sitting in the yard admiring the flowers. Today we enjoyed a picnic by the stream on campus. My son loves throwing sticks and rocks into the water. He would probably sit by the water throwing things for hours if we let him. His joys remind me to focus on the small pleasures of life and to try not to worry so much about dystonia and the demands of graduate school.

My Wonder Boy

My son is almost 23 months old. He is growing up quickly and amazes me on a daily basis. He reminds me the importance of living in the moment and finding joy in the little things in life. He is fascinated by caterpillars, butterflies, rocks and animals of any sort. He loves giving kisses, being tickled, throwing balls and playing in the mud. He prefers immediate gratification, but is learning the benefits of having patience. Emotions come and go from him like the wind...crying hysterically one second to laughing or smiling the next. I wish I could so easily be pulled out of my own sadness or frustrations. Enthralled by the wonder of nature and freedom of the outdoors, he constantly requests to go outside and play...bringing me his shoes and saying "ott-sigh, Mama, ott-sigh". It really is remarkable how much a child can lighten your spirit and make you easily forget about your suffering. I am so thankful that he has entered my life. It still amazes me that he came from me. It is wonderful to actually be looking forward to each new day just to see what he will learn and share with me.

I really like this picture because it shows how silly he likes to be sometimes. I often have trouble keeping him far enough away from me to get a good picture. He is fascinated by the camera and likes to get as close as possible.