A funny story about my trip down to the Amish area of Ohio with my sister last weekend. The town of Berlin had what they called a 'Barnstorm' on Saturday. There was a long list of merchants involved. In each location, there was a painted wooden barn hidden. When you found the barn, you went to the counter and told them you found it, they would ask where it was, or what color it was, to make sure you had really found it. Then you would get a slip of paper to fill out with your contact information to put into a drawing at the end of the day. It was alot of fun, and we explored shops we would not have gone into otherwise. Some places we found ithe barn quickly, others we gave up after searching. That was hard, because neither of us gives up easily. After awhile, though, my brain started to hurt from scanning so many shelves and walls.
Neither of us got a phone call or email, so we figured we hadn't won anything. That was okay, it was fun anyway (though I really don't want to be on the mailng lists of the 10-12 places where we filled out the slips.) So today, I got a packet from Berlin. I won a $25 gift certificate to Coblentz Chocolates! YUM!!! My husband is more of a chocoholic than I am, but I like a little chocolate, and I can spend the rest on Jelly Belly Jellybeans, and other merchandise. My husband says that chocolate is one of the 4 basic food groups, I say that jellybeans are. What are the other 2?
Before I got a chance to call my sister, she called me. She got a $25 gift certificate towards a PUPPY!!! Sounds great, but neither she nor anyone we know is in the market for a puppy. That seems like an odd prize. I guess each merchant that participated donated a gift certificate. I think a gift certificate for pet products seems like a more logical prize than money towards a puppy, but I bet there is some kid out there who really wishes they got that one!
Some thoughts on relating this story to coping. (I can relate anything to coping if you give me a chance.) 1. The fun of getting involved with a game, hunting for the barns, kept our minds occupied and entertained. 2. The anticipation of possibly winning something gives something to look forward to- as long as you are realistic enough about it to not be disappointed if you don't win. I buy Lottery tickets once every few years or so, and spend a few days with pleasant daydreams. 3. The thrill of winning something, an unexpected and happy surprise. 4. The laugh my sister and I got about her winning $25 worth of puppy. 5. The anticipation of going back to Berlin to spend my prize. These are all things that gave us pleasure and made our lives enjoyable for awhile.
Look for ways to have fun, to play. Look for things to look forward to. Look for the unexpected in life, and learn to appreciate change. Look for things that make you laugh, and give you pleasure. Sometimes it is the little things in life that mean so much. Make sure it is the good little things that you amplify to mean more, and the not so good ones you keep little.
PAGES
BUTTERFLY BANNER
Papercut and colored pencil art by Sheryl Aronson X 5
Thursday, April 29, 2010
Tuesday, April 27, 2010
PLANNING A GETAWAY WITH CHRONIC ILLNESS
Going on a getaway with chronic illness may require extra planning. Make sure the person you are going with understands any limitations you have in energy and endurance. There may be times when you both cut short your activities so you can rest. Are they okay with that? Or, they may go on without you while you rest. Are you okay with that? We go through grief over and over again, when we discover new things we can no longer do like we used to. Focus on the pleasure you get from what you can do, rather than bemoaning what you can't do. Be flexible with your schedule.
Some people divide the day into 3 segments- morning, afternoon and evening. If you have activities planned for 2 segments, plan for down time the third segment. Adapt this to your own needs. You may need 2 segments of down time. Or maybe you can go 3 hours then an hour off. Your down time may need to be complete rest, or you may be okay with a passive activity, like a bus tour or movie. You know yourself best. Going on a cruise might be the perfect getaway. There are plenty of activities going on both on board and at the ports, or you can just sit by the railing and relax. Each person can chose thier own schedule.
Take with you anything you need to make your getaway go smoothly. My backpack was extra heavy for my getaway with my sister, because not only did I have my C-PAP (to help me breathe at night), but also water for the humidifier, because I didn't know what kind of water they would have at the B & B. Take any snacks you might need, and with Sjogren's, make sure you have enough to drink. Something to think about- If you are constantly sipping water, you may be washing away any protective saliva you do have. It is better to drink your water in larger quantities less often, and use artificial saliva in between as needed. I like to chew gum with Xylitol (I like Trident Wild Blueberry Twist- it seems to hold its flavor best) to keep my mouth moist while walking or hiking. Make sure you have all your medications, both perscription and over the counter. Include all your drops, ointments, etc. that you might need, including for an extra day or two, just in case. (I was wondering about the people in Europe who got stranded for days because of the ash cloud last week- what did they do if their meds ran out?)
An overnight trip may be too much for you. A one day trip can also be rejuvinating, or half a day may be what works for you. Even going to a park to sit for awhile can help. Anything that gets you out of your routine and rut will be refreshing. Remember to enjoy what you can do, don't focus on what you can't do.
Some people divide the day into 3 segments- morning, afternoon and evening. If you have activities planned for 2 segments, plan for down time the third segment. Adapt this to your own needs. You may need 2 segments of down time. Or maybe you can go 3 hours then an hour off. Your down time may need to be complete rest, or you may be okay with a passive activity, like a bus tour or movie. You know yourself best. Going on a cruise might be the perfect getaway. There are plenty of activities going on both on board and at the ports, or you can just sit by the railing and relax. Each person can chose thier own schedule.
Take with you anything you need to make your getaway go smoothly. My backpack was extra heavy for my getaway with my sister, because not only did I have my C-PAP (to help me breathe at night), but also water for the humidifier, because I didn't know what kind of water they would have at the B & B. Take any snacks you might need, and with Sjogren's, make sure you have enough to drink. Something to think about- If you are constantly sipping water, you may be washing away any protective saliva you do have. It is better to drink your water in larger quantities less often, and use artificial saliva in between as needed. I like to chew gum with Xylitol (I like Trident Wild Blueberry Twist- it seems to hold its flavor best) to keep my mouth moist while walking or hiking. Make sure you have all your medications, both perscription and over the counter. Include all your drops, ointments, etc. that you might need, including for an extra day or two, just in case. (I was wondering about the people in Europe who got stranded for days because of the ash cloud last week- what did they do if their meds ran out?)
An overnight trip may be too much for you. A one day trip can also be rejuvinating, or half a day may be what works for you. Even going to a park to sit for awhile can help. Anything that gets you out of your routine and rut will be refreshing. Remember to enjoy what you can do, don't focus on what you can't do.
Monday, April 26, 2010
SISTERS' REJUVINATING GETAWAY TO AMISH OHIO
My sister and I ran away from home for a couple of days. We left behind husbands, children, homes, jobs and everything else mundane and went down to the Amish area of Ohio, about 1 hour southwest of here. Other than a reservation at a bed and breakfast, we had no set plans. We had maps and brochures, and ideas of some specific places we wanted to go. We explored, making decisions as choices presented themselves. I can't tell you how many times we had to find a place to turn the car around because we saw an interesting place to stop as we drove past it. We saw GORGEOUS (but expensiive) hand made Amish quilts, along with the usual tourist tcotchkas (Yiddish for trinkets). We tasted our way through Amish cheese stores, chocolate stores and bakeries.
The best parts, however, were the company, and the freedom from routine. My sister and I shared a room growing up, and have usually gotten along. Since we both got married, had families of our own, and live about 45 minutes apert, we don't see each other as often as we 'd like. Several years ago we started having occasional 'sisters' days', where just the 2 of us got together to go on an adventure (like shopping, or a museum our families would not appreciate). This time we had 2 full (almost) days together. We both have husbands and 2 boys (mine now in their 20's, hers in their mid-teens). They don't enjoy wandering in and out of shops. We do. This past weekend, there was no one there telling us they were bored. No one else's needs to meet but our own.
This kind of getaway is very rejuvinating. No demands, except for those we placed on ourselves. No schedule to hem us in. When we got tired, we stopped. When we got hungry, we ate. Of course, like most people with chronic illness, I had to make sure I took my meds, which required getting food and water. It was a change from our routines, which woke up our senses. It got us out of our respective ruts. Those routines and ruts are still there, but perhaps we can go back to the routines with fresh eyes, and fill in the ruts before we fall back into them. That means paying attention to what we are doing, and not automatically doing the same old actions. Just because something has 'always been done that way' doesn't mean that is the best way to do it. Especially with chronic illness, the old way of doing things might not fit your current reality.
Future posts this week will include thoughts and ideas on doing a getaway with chronic illness, and some observations of the Amish way of life including some pictures from our trip.
The best parts, however, were the company, and the freedom from routine. My sister and I shared a room growing up, and have usually gotten along. Since we both got married, had families of our own, and live about 45 minutes apert, we don't see each other as often as we 'd like. Several years ago we started having occasional 'sisters' days', where just the 2 of us got together to go on an adventure (like shopping, or a museum our families would not appreciate). This time we had 2 full (almost) days together. We both have husbands and 2 boys (mine now in their 20's, hers in their mid-teens). They don't enjoy wandering in and out of shops. We do. This past weekend, there was no one there telling us they were bored. No one else's needs to meet but our own.
This kind of getaway is very rejuvinating. No demands, except for those we placed on ourselves. No schedule to hem us in. When we got tired, we stopped. When we got hungry, we ate. Of course, like most people with chronic illness, I had to make sure I took my meds, which required getting food and water. It was a change from our routines, which woke up our senses. It got us out of our respective ruts. Those routines and ruts are still there, but perhaps we can go back to the routines with fresh eyes, and fill in the ruts before we fall back into them. That means paying attention to what we are doing, and not automatically doing the same old actions. Just because something has 'always been done that way' doesn't mean that is the best way to do it. Especially with chronic illness, the old way of doing things might not fit your current reality.
Future posts this week will include thoughts and ideas on doing a getaway with chronic illness, and some observations of the Amish way of life including some pictures from our trip.
Friday, April 23, 2010
EARTHDAY-ITS IN OUR HANDS
There is a Jewish concept of 'Tikkun Olam', Repair of the World. I will write about that in a future post, and how repairing the world repairs us, as well. Right now, I gotta run- my sister will be here any minute. We are going to run away together for our first sisters' overnight. I will write about that when we return. "Its always good to get away and renew your spirit with someone who really means something to you." Said Marcy, who arrived as I wrote this. "Let's go to the park," she said. "Come, Spot, come Sally. We will go to the park." Mother said "Take your sweaters. I am cold." TTFN
Thursday, April 22, 2010
WHAT IS SJOGREN'S SYNDROME?
Sjogren's (pronounced SHOW-grins)Syndrome is an autoimmune syndrome in which your own body attacks the exocrine, or moisture producing glands. The classic symptoms are dry mouth and dry eyes, but it can affect any system in the body, including the kidneys, gastrointestinal tract, blood vessels, liver and central nervous system. Patients often experience joint and/or muscle pain and fatigue as well.
According to the Sjogren's Syndrome Foundation's website, www.sjogrens.org, as many as 4 million Americans are living with this disease, 9 out of 10 of them are women. Some people have mild symptoms, others are debilitated by this disease. Since the symptoms are so diverse, and appear different in each person, it often takes up to 7 years to get a diagnosis.
Sjogren's Syndrome is chronic, there is no cure, and as of this time, no medications that control it. Most treatment is symptomatic, though some people have found that immunosuppressive medications are helpful in controlling intenal organ manifestation. There are many over the counter products that help, such as a variety of eye lubricants, saliva substitutes, nasal moisturizers, etc. There are 2 prescription medications that help increase saliva: Evoxac (pronounced EE-vo-zak),and Salegen, and one prescription eyedrop which helps increase tears, Restasis.
I was diagnosed with Sjogren's about 5 years ago, by luck. I went to the doctor for something or other. He wasn't there, so I saw someone else in his practice. With my own doctor, I would just talk about the current issue, but with this new doc, I had to catch him up on all the things that had been going on. He put it all together, and said it sounded like Sjogren's. He sent me to a rheumatologist, who confirmed it. My first symptoms, chronic pain in my hip, arm and neck, had started years before, but I never thought of them as connected (Other than in the 'hip bone's connected to the neck bone' kind of way- that sounds very uncomfortable). Several years before my diagnosis I had to give up wearing my contact lenses, which I had worn since age 16, because my eyes were too dry.
These days I am doing really well. I have a little pain, and fatigue some days, but I have saliva, thanks to Evoxac, and tears, thanks to Restasis. I take way more medications than I like, but they seem to be doing the trick, so I will stick with them. (more on that in a future post).
APRIL IS SJOGREN'S SYNDROME MONTH! The Sjogren's Syndrome Foundation is doing a '30 Days to Imagine Having Sjögren's' campaign, with one statement for each day to educate people about Sjogren's. Since I am starting late in the month, I am posting 5 today, more to come in future posts. Try imagining what each of these situations would feel like...
1. IMAGINE seeing ten doctors over ten years and still not knowing what you’ve got.
That is Sjögren's!
2. IMAGINE having chronic fatigue that can take the living out of life.
That is Sjögren's!
3. IMAGINE your dry mouth and tooth decay is connected to an autoimmune disease. That is Sjögren's!
4. IMAGINE your dry mouth makes you lose your public speaking career.
That is Sjögren's!
5. IMAGINE that it’s terrifying to be without your water bottle to alleviate your dry mouth. That is Sjögren's.
HAPPY EARTH DAY EVERYONE!
According to the Sjogren's Syndrome Foundation's website, www.sjogrens.org, as many as 4 million Americans are living with this disease, 9 out of 10 of them are women. Some people have mild symptoms, others are debilitated by this disease. Since the symptoms are so diverse, and appear different in each person, it often takes up to 7 years to get a diagnosis.
Sjogren's Syndrome is chronic, there is no cure, and as of this time, no medications that control it. Most treatment is symptomatic, though some people have found that immunosuppressive medications are helpful in controlling intenal organ manifestation. There are many over the counter products that help, such as a variety of eye lubricants, saliva substitutes, nasal moisturizers, etc. There are 2 prescription medications that help increase saliva: Evoxac (pronounced EE-vo-zak),and Salegen, and one prescription eyedrop which helps increase tears, Restasis.
I was diagnosed with Sjogren's about 5 years ago, by luck. I went to the doctor for something or other. He wasn't there, so I saw someone else in his practice. With my own doctor, I would just talk about the current issue, but with this new doc, I had to catch him up on all the things that had been going on. He put it all together, and said it sounded like Sjogren's. He sent me to a rheumatologist, who confirmed it. My first symptoms, chronic pain in my hip, arm and neck, had started years before, but I never thought of them as connected (Other than in the 'hip bone's connected to the neck bone' kind of way- that sounds very uncomfortable). Several years before my diagnosis I had to give up wearing my contact lenses, which I had worn since age 16, because my eyes were too dry.
These days I am doing really well. I have a little pain, and fatigue some days, but I have saliva, thanks to Evoxac, and tears, thanks to Restasis. I take way more medications than I like, but they seem to be doing the trick, so I will stick with them. (more on that in a future post).
APRIL IS SJOGREN'S SYNDROME MONTH! The Sjogren's Syndrome Foundation is doing a '30 Days to Imagine Having Sjögren's' campaign, with one statement for each day to educate people about Sjogren's. Since I am starting late in the month, I am posting 5 today, more to come in future posts. Try imagining what each of these situations would feel like...
1. IMAGINE seeing ten doctors over ten years and still not knowing what you’ve got.
That is Sjögren's!
2. IMAGINE having chronic fatigue that can take the living out of life.
That is Sjögren's!
3. IMAGINE your dry mouth and tooth decay is connected to an autoimmune disease. That is Sjögren's!
4. IMAGINE your dry mouth makes you lose your public speaking career.
That is Sjögren's!
5. IMAGINE that it’s terrifying to be without your water bottle to alleviate your dry mouth. That is Sjögren's.
HAPPY EARTH DAY EVERYONE!
Wednesday, April 21, 2010
ARTIST AND THERAPIST
Welcome to my blog. This blog is about art, healing, and using art for healing.
ART: I am an artist. My favorite media are colored pencils, papercutting, stained glass and silk painting. I like bright colors, and often contrast them with black. My themes are Jewish/spiritual, nature, humor, and anything else that calls to me. Sometimes I will show a piece of my art, and tell what inspired me, and about the techniques I used, and sometimes I will have patterns and instructions for projects you can try.
HEALTH: I have Sjogren's Syndrome, fibromyalgia, and a variety of other odds and ends. For people who don't know what these are, I will help you understand. For those people who know all too well what they are, I will write about coping, and about living your life the best you can with chronic illness, chronic pain and fatigue.
ART FOR HEALING: Evidence has shown that art can heal in many ways. The process of creating art can be soothing, can be a release, can be similar to meditation, and much more. Art also provides a means of expressing thoughts and emotions for which we can't find the words. I will write about these processes and benefits, and sometimes provide projects or ideas for you to try.
So, who am I? I am not an art therapist, but I play one on TV. Actually, I sometimes play one at my job on an inpatient psychiatric unit at a hospital. I am an occupational therapist, I work with a team that includes occupational therapists, art therapists, recreation therapists and chemical dependency counselors. I don't work full time, I work PRN. That means I work 'as needed'. Whenever someone else on the team is out for vacation, conference, sick or whatever, they call me in to cover for them. I lead groups on a variety of topics, including stress management and anger management, with a different slant depending on who I am covering that day. I am also a founding member and co-leader of our local Sjogren's Syndrome support group. My actual title is 'education chairperson', though I sometimes accidentally refer to myself as the 'science officer'. I am the one who either finds a speaker for our meetings, or leads the session myself, on some aspect of coping.
I also love books, and will share with you some of my favorites creative and self help books.
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