If Only in My Dreams

There have been way too many musical acts coming here during Christmas. If I have to listen to one more caroling group I am going to resort to throwing objects out of the room at them. I need a marshmallow shooter. I did pull up my big girl panties and try to go to one of the concerts. The man and his wife tried hard. But the line was crossed when they sang "I'll Be Home for Christmas". Totally not appropriate. There are too many people who are stuck here, many permanently, who would rather be home for Christmas but cannot be. This is my first Christmas ever without being with family or dear friends. I am finding it hard to really care. This year it seems like just another day at the Hotel California, where I checked in but can never leave. I am rocking my ugly Christmas sweater T-Shirt (it is too hot in here for a sweater) and my light up Santa hat and trying my best to care. It is just lonely, and frustrating, and sad. I guess this year I will be home for Christmas "If only in my dreams".

I get no respect

I am so thankful that I can speak up for myself and fight for my own dignity and respect. Two mornings ago I wanted to eat Breakfast in my room.  I avoid the dining hall like the plague infected chaos that it is. The CNA refused to help me back in bed and forced me to go eat in the dining room. When I got back from therapy, I asked to have help getting back into bed. She did this, not the gentlest but she did help. About 20 minutes later I realized I really had to go to the bathroom. I requested this and she went off. She was in another patient's room and stated screaming "I just put her to bed not 20 minutes ago. She should have gone then. She does nothing but lay around in bed anyway. I am not putting up with this. She is such a pain." Um, no. This is NOT okay with me. I ended up speaking with the nursing director who was as horrified as I was pissed. She took down detailed notes and spoke with the CNA about her behavior. This particular person will no longer provide care for me as I am not comfortable with it. She humiliated me by name in front of other patients and staff. I could hear her down the hall she was so loud.Since then the CNAs have been efficient but very cold and abrupt. I am sure her story was told to them very differently than what happened. Whatever.

Reflections One

I have not written an update in quite a while about how therapy is going. It is a hard three hour work out each day and I end up exhausted by the end of it. I push myself to do more, stronger, harder sometimes to my own detriment. I just want to get back to normal as soon as possible The rehabilitation doctor was in today and said I had a few more weeks to stay here. One day at a time.
Below are some things I have been doing in physical therapy.
* Kicking a ball (not soccer star, more like uncoordinated toddler)
* Opening my hand enough to pick up soft squishy beanbags
* Leg exercises (extending legs, marching in place while seated, rotating feet as much as possible, etc.) with a pound weight on each leg (the weight seems to help me be more aware of my leg and move it easier))
* Working on balance by sitting on the edge of the table/mat and reaching forward to place objects on pegs or to roll a ball
* Shifting weight into my left leg
* Raising my left foot high enough, and properly, to place it on a step
* Getting myself dressed and taking care of daily needs
* Practicing standing balance by standing with support and a walker and shifting weight from side to side or front to back
* Riding the exercise bike thing from Hell (not recently as my lungs have been bothering me)
* Working on swallowing different textured foods
* "Walking" with a walker and support about 30 feet (my left leg drags and does not pick up to step yet)

Sometimes I do not see the successes but looking back over it I have come a long way in two weeks. When I arrived I could not move my left side at all really. So there has been progress, hard progress, frustrating progress, slow progress, but progress.

I still have my migraine but now finally have pain medicine for it. So hopefully it will at least be controlled if not broken. I also started on breathing treatments 4 times a day because the Mitochondrial disease is making it harder to breathe.. It feels like the muscles in my diaphragm are week and difficult to work, making each breath an effort. My lungs also get tight. My pulse ox stays high enough to be safe, but it is exhausting and painful. The nurses and physicians assistants would not listen to me or understand, but the doctor knew what I was saying and was willing to do something about it. I am still waiting for something for sleep. He does not feel comfortable adjusting or adding medicine because I am on a lot of "psychiatric" medications (One is used for my muscles from the dystonia, the other is supposed to help me sleep) and he wants the psychiatrist to decide what to do.

I am getting used to having a roommate after over a week of a room to myself. She is a sweet older lady, but there are some issues. She must be hard of hearing because her TV is always set to jet engine loud. She is also incontinent and struggling with diarrhea which makes for late night visits from aids to clean her up, and oh the smells. But she is kind, and she provided me with information on a way for my Mom to be able to visit me here (the city buses do not go this far and neither one of us can drive). I am hoping to see Mom on Christmas Eve.

By Its Cover

I usually try not to judge someone without knowing them and spending even a little bit of time with them. However, last night I totally looked at the cover without seeing the wisdom in the pages. I received a roommate (they were switching rooms around all day) and my first impression was that she was rude and deaf (her TV was up so loud for my headache). Then a visitor had a tantrum because I have a tray table between her bed and mine. I am allowed two tables because I cannot life and move my laptop every time I need a surface to eat or color or whatever. I am very careful to turn it tightly but this woman was just going off. Finally I discovered my roommate is incontinent and has the world's worst diarrhea right now. Oh the smells alone almost did me in. But then this morning I was able to meet her. We talked for a little while and it turns out she is a delightful woman. She even helped me find a way for my Mom to visit me while I am here.I was so mistaken and judgmental that I am ashamed of myself. I needed to relearn that lesson and this sweet, kind woman has taught it to me.

Small Victories

I have been very impatient with therapy. To me it seems like I should be able to do so much more than I can right now. I see people who are elderly and fragile doing things that seem like they are impossible for me. But I have noticed the small victories, the ones that do not seem to count but that add up to massive success. Often these small victories are more important and worthy of celebration than the one huge success. I have been here 10 days and have noticed many small victories that I choose to celebrate.
* Being able to get dressed almost completely by myself (everything but the bra and shoes)
* Being able to stand with the assistance of one person and a walker
* Increasing the foods I can swallow
*Being able to start to take "steps" with help
* Being able to pick up a beanbag with my hand
*Improved balance while sitting
* With a railing and one person assisting I can get into and out of bed
* I have found tricks to allow me to position myself in bed and move independently when lying down
* Brushing my own teeth, washing my own face, putting on deodorant, and brushing hair
* Kicking a slowly rolling ball with my bad leg (not soccer star style, but my foot hits the ball)
* Being able to independently eat with adaptations (food cut small, special plate/"scoop dish")

I have the Right...The Right...

Today (Tuesday) I hope to meet with a social worker as I have requested. There are several issues in terms of care that need to be addressed. I have the right to go to the bathroom when I need to, not an hour or more later. I have the right to not be ridiculed to my face or behind my back. I have the right to access my doctor when requested, instead of being ignored. I have the right to make my own choices about what I do and when I do it. I have the right to freedom of speech and to be heard. I have the right to know my own body better than anyone. Yet none of these rights are being fully given. The sad thing is that this is an average nursing home/rehab facility (definitely not the worst) and many people do not even have the ability to know or state their rights. I do not think I am asking too much or being unreasonable. I want to have dignity, self determination, access to proper medical care, and respect. I want to be treated as a human, not bed 205 or my diagnosis.

First Steps

Today at therapy I had the honor of witnessing a woman take her first steps with a walker since her disability/illness. She was so very scared and anxious. But she overcame that and walked!! It was not far, but distance was not the point. When she sat down she was in overwhelming happy tears, and I almost joined her. Sometimes the biggest things are the little things, the act of beginning, the start of the journey. That pride in her heart and on her face, along with amazement, was priceless.
I had my own small victory at therapy today. I "walked" 8-10 feet (last time was about 4-5) and was actually able to lift most of my left foot off of the ground. It was hard, so hard, but so worth it to feel and see myself moving. It takes so much work but I have improved in just a week. It is all a journey, a process of learning and discovery, a series of lessons and struggles and victories. It is about how you see the world and the perspective that you seek.