I had an outing yesterday and went to the Phoenix Art Museum. None of us had been there before. Every Wednesday from 3 to 9 p.m. entry is by donation. We were there a couple of hours, but you can spend a lot of time there and not see everything. They have a little gift shop and they even have a little cafe. We checked out the cafe but didn't go in because we didn't have enough time. We saw some really great paintings and sculptures; saw Monet, Georgia O'Keefe and Grandma Moses. The Firefly Room was some place you could spend hours in. It was so cool we didn't want to leave. We said the next time we go we're going to sneak in a bottle of wine and spend our time in the Firefly Room. They had some art that I considered real sculptures; and some that was "found object" art. I call it junk yard art. They had a clothing exhibit, which was temporary, and it runs through Christmas into the early part of January. Most of it was dresses from 1910 to current times. They had one section that was Japanese designers, and there were several groups of Japanese there checking it out. We may try going back around Christmas time. Some people, for whatever reason, didn't get to go; we have more people that want to go, and those of us who went want to go back.
A home is a home is a home!
Since I was in the hospital around my birthday in June I've been coming to terms with the fact that my health may not improve; that my body is failing, and that I can no longer say that I stay at a medical facility. Because I no longer stay, I live here. It may be unconventional but it is home, and probably always will be. I always suspected that I would end up in a facility, but did not expect to start this part of my journey while still in my late 40's. Since I am not married and have no children, it is logical that I would end up in a nursing home. I still hate that term "nursing home"; where I live it is called a medical and rehabilitation center. And that better fits this facility; there are a lot of people who are here strictly for rehab and get to go home, and then there are others who are not old, many younger than me, who live here. It may be a strange sort of family, but it is family none-the-less. Last week was the first time I actually told a complete stranger that I lived at a medical facility instead of saying that I was currently staying at a home. The lady that I told didn't flinch! What a relief! And yesterday, at our outing, people were polite but not overly attentive. The lady behind the counter of the gift shop even giggled when the respiratory therapist put a perfume pencil under my nose and insisted that I smell it. When I pointed out to the R.T. that people with trachs can't smell, she gasped and said "oh, I forgot!" The gal behind the counter found that amusing. Perish the thought but maybe this gal from Normal is more normal than she prefers to think she is. I guess we have evolved afterall.
Hope everyone has a terrific week! From my home to yours,
Love always, Darci
P.S. Boo to you! I am beginning to get in the spirit of Halloween, and am decorating my room - my home. The bears have masks on, and sock monkey is going "Hawaiian".
See you Thursday!!
Survivor Mode: My personal blog on my thoughts and feelings living in a nursing facility.
Thursday, September 30, 2010
Thursday, September 23, 2010
Slow Week
Did all my doctor appointments.
Got to go on an outing to "wally-world"; I'm broke now!
Still scratching! But only one more day on the IVs. The last two days have been lousy due to major bladder spasms. Very thirsty but afraid to drink anything.
That 's pretty much it for this week. I think I am going to call it a day... not getting much sleep at night. Tune in again next Thursday.
Love always, Darci
Got to go on an outing to "wally-world"; I'm broke now!
Still scratching! But only one more day on the IVs. The last two days have been lousy due to major bladder spasms. Very thirsty but afraid to drink anything.
That 's pretty much it for this week. I think I am going to call it a day... not getting much sleep at night. Tune in again next Thursday.
Love always, Darci
Wednesday, September 15, 2010
Trials and Tribulations
By the time I was in 4th grade, my desk was right next to the teacher's desk, very close to the blackboard. I once again failed the eye test, and even though my desk was close to the blackboard, I still had to have my classmate tell me what was written on the board. I also got very good at remembering what the teacher said as she wrote on the blackboard. My parents sent me to a new eye doctor who specialized in helping children. It was so funny - he put me in this room and asked me to look at the dangling ball that was on the ceiling!! And I looked and I looked - no ball!! The doctor came in the room and say "Oh My!" and asked "can you read the top letter on the eye chart?" Once again, I looked but didn't see an eye chart! Again, he said "Oh, My!!" I went through a whole series of tests for the next two and a half hours, and was instructed to come back the following morning for more tests. Two weeks later, I finally had my first pair of glasses. They were bifocals, they were pink and sparkly. I was so happy and just amazed at the world around me. All the way home, I kept staring out the window. Suddenly trees didn't just disappear up into the sky anymore! Lawns consisted of individual blades of grass. When we got home, I sat on the swing and went back and forth, back and forth, enthralled with the new world around me!!! My mother thought I was being silly at first, she didn't realize how blind I really was! But she was very apologetic when she realized that I wasn't kidding. When I was called in for supper, I went to the bathroom to wash up. I crawled on top of the toilet and then the sink so I could see in the mirror! There was my face - eyebrows, eyelashes and all! I could finally see myself as everyone else did. How ironic it was all those years Paul had been my charge - he couldn't hear and I couldn't see! I was his ears as he was my eyes!
The next day when I went to school, I was finally able to push my seat back away from the teacher's desk and sit among the rest of my class!!! I didn't have to ask for anybody's help.
I could look across the room and see the color of other student's eyes. It was all I could do not to stare!
Another thing that caught my eye was food! Suddenly it looked better to me, more appealing!! Therefore, my appetite picked up as did my weight. I actually began to get pudgy!
When I started junior high, I developed allergies, asthma, and began to have numerous kidney infections that were very painful. I also began to have more serious bouts of bronchitis. I had a really deep cough that my Mom called my "barking dog cough." My eyesight continued to worsen, and when I was 15, I was told that I might be blind by the time I was 30 or 40, but that there were new advances every year.
When I was in high school, I hurt my hand playing baseball. I twisted all of the tendons in my left hand! That was the first time I can really remember a doctor saying "oh, I have never seen that before!" He said "I have seen a few tendons twist before, but you managed to do all of them in your hand!!" This was also the beginning of my developing arthritis when I was 17.
Thus concludes my trials and tribulations of my childhood. Some ailments would go away, and others would worsen. Such is life! Se la vive!!
It's been kind of a disappointing week; two more weeks of IV antibiotics and more doctors appointments in the near future. And more testing to come to determine whether I have another form of arthritis and possibly lupis. Both of which are additional forms of auto-immune diseases which is already a "favorite" of mine. More pokin' and prodding' to come! Woo Hoo!!! Will keep you posted! Back for more next week.
Love Always, Darci
P.S. Yes, I still have the rash all over my body, and making good use out of that back scratcher from the dollar store. Now I'm really done!
The next day when I went to school, I was finally able to push my seat back away from the teacher's desk and sit among the rest of my class!!! I didn't have to ask for anybody's help.
I could look across the room and see the color of other student's eyes. It was all I could do not to stare!
Another thing that caught my eye was food! Suddenly it looked better to me, more appealing!! Therefore, my appetite picked up as did my weight. I actually began to get pudgy!
When I started junior high, I developed allergies, asthma, and began to have numerous kidney infections that were very painful. I also began to have more serious bouts of bronchitis. I had a really deep cough that my Mom called my "barking dog cough." My eyesight continued to worsen, and when I was 15, I was told that I might be blind by the time I was 30 or 40, but that there were new advances every year.
When I was in high school, I hurt my hand playing baseball. I twisted all of the tendons in my left hand! That was the first time I can really remember a doctor saying "oh, I have never seen that before!" He said "I have seen a few tendons twist before, but you managed to do all of them in your hand!!" This was also the beginning of my developing arthritis when I was 17.
Thus concludes my trials and tribulations of my childhood. Some ailments would go away, and others would worsen. Such is life! Se la vive!!
It's been kind of a disappointing week; two more weeks of IV antibiotics and more doctors appointments in the near future. And more testing to come to determine whether I have another form of arthritis and possibly lupis. Both of which are additional forms of auto-immune diseases which is already a "favorite" of mine. More pokin' and prodding' to come! Woo Hoo!!! Will keep you posted! Back for more next week.
Love Always, Darci
P.S. Yes, I still have the rash all over my body, and making good use out of that back scratcher from the dollar store. Now I'm really done!
Wednesday, September 8, 2010
My Beginnings
This week has been a very hectic week. I was very sick over the weekend and today has been complete chaos. Now on top of everything else, I have a yeast infection and a rash all over my body! Which means another trip to the dermatologist. One more doctor for one more ailment.
Last week I promised that I would answer questions and talk about various obstacles I had growing up. When my mother was almost 8 months pregnant, she was hospitalized because she was bleeding profusely. So the doctors decided to deliver me by Caesarean. That's when it was discovered that my mother has a very rare blood type; her blood type is ABC with a negative HRH factor. I was very tiny--I was as long as a sub sandwich and just over 3 pounds!! Because I was premature, my bronchial tubes weren't fully developed. The doctors decided that I needed specialized care, so I was taken by ambulance to a hospital 90 minutes away that had a NICU devoted to premature infants. My parents visited me as often as they could while my Dad's parents took care of my two older brothers. My grandparents' farm was only a few miles from my parents' farm. After a month I was deemed fit to go home. I now weighed 5 pounds.
Since I was so tiny, my mother had to trim down my cloth diapers and fashion sewing patterns out of old newspapers and sewed all of my wardrobe rather than purchase babydoll clolthes. I was given the bedroom that was directly above the old coal furnace as the heat kept me nice and toasty during cold months. Because my eyes were very sensitive to light, there are very few baby pictures because they couldn't use they flashbulb on the camera and I could not be kept out in the sun except very briefly. My Mom told me that I slept a lot and often had to be awakened at feeding time.
I wore booties on my feet until I was two years old as there were no shoes small enough for me to wear. As soon as my parents were able to buy a pair of shoes that fit me, I began to walk. It was too hard to try to walk in booties on a hardwood floor. Even though I lagged behind as I was so petite, I think my mother would agree that I more than made up for it because I began to talk very early, and I haven't shut up since!!! Although I was very talkative around family, I was otherwise friendly, but shy. As a toddler, I enjoyed feeding our various animals and our chickens until one of the roosters took a hunk out of my face! Since the wound was so close to my left eye, the doctor was unable to stitch me up, so just bandaged it. I still have the scar as a reminder of the encounter.
1962 was not a very good year for me. I have no immunity to measles; therefore I have had them numerous times. The worse case occurred when I was four years old. I had measles in the lining of my stomach and in my throat. The stomach lining is made of blood. I vomited up copious amounts of blood. I was sure that I was dying. That was also the year that I had two hernia operations. I have a lasting picture in my mind of me jumping on an old mattress down in our basement when I suddenly felt intense pain. I have no other memory of either occurrence. Isn't the mind a wonderful thing?
I began first grade when I was six years old. We had no kindergarten at that time. My parents considered holding me back a year as I was so small, but decided to go ahead and enroll me in school as I was very eager to learn. I considered myself a big girl and wanted to go to school like my brothers. I was permitted to attend school with several considerations. A fellow student was assigned to be my "bathroom buddy" to make sure I was able to use the restroom without any mishaps and was able to reach the sink and the papertowels. To keep my legs from dangling all day long, the janitor built me a wooden box and painted it white on which I rested my feet.
At almost eight years old, I was pretty much the size of a three-year old toddler. I was three feet tall and just over 30 pounds. For the second year, I was sent home with a note from the school nurse informing my parents that I had once again failed the eye test. It was at this time that my parents began to follow-up on it and I was sent to various specialists. One doctor even had me wear an eye patch for awhile. I was told that while I did not have perfect vision, I did not yet need eyeglasses. That winter was exceptionally bitter and I began to have severe ear aches. My teacher kept warm cloths on the radiator for me to cover my ears with to try to ease my ear pain, and allow me to continue to remain in class. Back in those days girls were allowed to wear pants to and from school and during recess. But at times, I was given a pass and allowed to wear my pants all day.
When I was young, I did not have a hearty appetite like my brothers. But I was always very thirsty. I drank a lot of water, wonderful well water. This concerned my parents, so from the time I was little I was tested regularly for diabetes. I was generally tested every two years. Even though I had no other symptoms of diabetes, it was part of my family history.
Well, my time is up for this now, so will pick this up again next week. Hope you'll check in with me next Wednesday. Have a great week!
Love always, Darci
Last week I promised that I would answer questions and talk about various obstacles I had growing up. When my mother was almost 8 months pregnant, she was hospitalized because she was bleeding profusely. So the doctors decided to deliver me by Caesarean. That's when it was discovered that my mother has a very rare blood type; her blood type is ABC with a negative HRH factor. I was very tiny--I was as long as a sub sandwich and just over 3 pounds!! Because I was premature, my bronchial tubes weren't fully developed. The doctors decided that I needed specialized care, so I was taken by ambulance to a hospital 90 minutes away that had a NICU devoted to premature infants. My parents visited me as often as they could while my Dad's parents took care of my two older brothers. My grandparents' farm was only a few miles from my parents' farm. After a month I was deemed fit to go home. I now weighed 5 pounds.
Since I was so tiny, my mother had to trim down my cloth diapers and fashion sewing patterns out of old newspapers and sewed all of my wardrobe rather than purchase babydoll clolthes. I was given the bedroom that was directly above the old coal furnace as the heat kept me nice and toasty during cold months. Because my eyes were very sensitive to light, there are very few baby pictures because they couldn't use they flashbulb on the camera and I could not be kept out in the sun except very briefly. My Mom told me that I slept a lot and often had to be awakened at feeding time.
I wore booties on my feet until I was two years old as there were no shoes small enough for me to wear. As soon as my parents were able to buy a pair of shoes that fit me, I began to walk. It was too hard to try to walk in booties on a hardwood floor. Even though I lagged behind as I was so petite, I think my mother would agree that I more than made up for it because I began to talk very early, and I haven't shut up since!!! Although I was very talkative around family, I was otherwise friendly, but shy. As a toddler, I enjoyed feeding our various animals and our chickens until one of the roosters took a hunk out of my face! Since the wound was so close to my left eye, the doctor was unable to stitch me up, so just bandaged it. I still have the scar as a reminder of the encounter.
1962 was not a very good year for me. I have no immunity to measles; therefore I have had them numerous times. The worse case occurred when I was four years old. I had measles in the lining of my stomach and in my throat. The stomach lining is made of blood. I vomited up copious amounts of blood. I was sure that I was dying. That was also the year that I had two hernia operations. I have a lasting picture in my mind of me jumping on an old mattress down in our basement when I suddenly felt intense pain. I have no other memory of either occurrence. Isn't the mind a wonderful thing?
I began first grade when I was six years old. We had no kindergarten at that time. My parents considered holding me back a year as I was so small, but decided to go ahead and enroll me in school as I was very eager to learn. I considered myself a big girl and wanted to go to school like my brothers. I was permitted to attend school with several considerations. A fellow student was assigned to be my "bathroom buddy" to make sure I was able to use the restroom without any mishaps and was able to reach the sink and the papertowels. To keep my legs from dangling all day long, the janitor built me a wooden box and painted it white on which I rested my feet.
At almost eight years old, I was pretty much the size of a three-year old toddler. I was three feet tall and just over 30 pounds. For the second year, I was sent home with a note from the school nurse informing my parents that I had once again failed the eye test. It was at this time that my parents began to follow-up on it and I was sent to various specialists. One doctor even had me wear an eye patch for awhile. I was told that while I did not have perfect vision, I did not yet need eyeglasses. That winter was exceptionally bitter and I began to have severe ear aches. My teacher kept warm cloths on the radiator for me to cover my ears with to try to ease my ear pain, and allow me to continue to remain in class. Back in those days girls were allowed to wear pants to and from school and during recess. But at times, I was given a pass and allowed to wear my pants all day.
When I was young, I did not have a hearty appetite like my brothers. But I was always very thirsty. I drank a lot of water, wonderful well water. This concerned my parents, so from the time I was little I was tested regularly for diabetes. I was generally tested every two years. Even though I had no other symptoms of diabetes, it was part of my family history.
Well, my time is up for this now, so will pick this up again next week. Hope you'll check in with me next Wednesday. Have a great week!
Love always, Darci
Wednesday, September 1, 2010
Happy Labor Day!
Happy Labor Day Everyone! It has been an interesting week as I have been unconscious for most of it. Between the infections and two IVs antibiotics working in me, I have been very sleepy, in a lot of pain, and I feel like there is a war going on in there. The medicine gives me bad dreams and nightmares. The worst nightmare was that in my dream I was walking and I got lost. There was a parade going on, and suddenly the crowd of people turned on me, jumped on me and literally started tearing off little hunks of me!!!! Thankfully, I woke up! I have also had very weird disjointed dreams-- partly due to the medicine and also due to fever, which has been up and down!!
I had my appointment with the surgeon this morning. At this point I don't need surgery on the abcess but I have to return in two weeks. Next week is full of various appointments. Three different dr. appointments for three different diseases. Yippee!! and Zippee!!! Lucky me! Came back from my appointment today to find that Teagen, my big boy bear, had fallen, and had bandaged ears and right arm. Poor baby now has his own medical disabilities!!! Silly staff!!!
Happy Birthday MOMMY! She will be celebrating her 77th in Las Vegas on the 5th of September. Look out Las Vegas!! Here comes the little old widow lady and her friend Peg is going with her!!
Haven't heard anything about the MD Telethon. If they do have it, please contribute as they help with ALS research, which helped my Grandma Spears. What an awful way to go!
I have had several people ask me to write about obstacles I overcame growing up, and hope to have that finished next week for you. Have a great holiday! Hope to see you next Wednesday!!! Same time, same station!
Love always, Darci
I had my appointment with the surgeon this morning. At this point I don't need surgery on the abcess but I have to return in two weeks. Next week is full of various appointments. Three different dr. appointments for three different diseases. Yippee!! and Zippee!!! Lucky me! Came back from my appointment today to find that Teagen, my big boy bear, had fallen, and had bandaged ears and right arm. Poor baby now has his own medical disabilities!!! Silly staff!!!
Happy Birthday MOMMY! She will be celebrating her 77th in Las Vegas on the 5th of September. Look out Las Vegas!! Here comes the little old widow lady and her friend Peg is going with her!!
Haven't heard anything about the MD Telethon. If they do have it, please contribute as they help with ALS research, which helped my Grandma Spears. What an awful way to go!
I have had several people ask me to write about obstacles I overcame growing up, and hope to have that finished next week for you. Have a great holiday! Hope to see you next Wednesday!!! Same time, same station!
Love always, Darci
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