STORY LIVING WITH SCLERODERMA. A Cowichan Tribes Band Member. Booklet finished May, 2012 With Support of Ts ewulhtun Health Centre

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Emory Long
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1 STORY LIVING WITH SCLERODERMA A Cowichan Tribes Band Member. Booklet finished May, 2012 With Support of Ts ewulhtun Health Centre

2 2 Living with Scleroderma Sandra George Living with Scleroderma Sandra George 15

SUPPORTS STORY I found using too many mobility supports such as walkers and wheel chairs can sometimes make people become more dependent. You must always stay active.

I found air conditioners too loud to sleep near. I found that there seems to be a lack of financial support for people with scleroderma.

Blankets I knit help me relax and offer me an opportunity to share my gifts. I pray while knitting each blanket for the person I am knitting for. There is a story to each blanket.

I remember my grandparents down near the Clemclemaluts bighouse using a horse and buggy to get logs to help build houses for others. Everyone was working together as one.

We were not allowed to speak to each other. We all had numbers assigned to us; I still remember that my number was 50. That was how they called us.

3 SUPPORTS STORY I found using too many mobility supports such as walkers and wheel chairs can sometimes make people become more dependent. You must always stay active. Having a fan in my bedroom in the winter helps me breathe better. Having a humidifier in my bedroom in the summer helps to cool the air which helps me breathe better. I found air conditioners too loud to sleep near. I found that there seems to be a lack of financial support for people with scleroderma. I have learned that sometimes you can get financial supports for such things as Ensure (a food supplement) if you have a doctor s prescription. Blankets I knit help me relax and offer me an opportunity to share my gifts. I pray while knitting each blanket for the person I am knitting for. There is a story to each blanket. I was born in Duncan, BC, in the late 1950 s. I am one of the three youngest girls in a large, blended family. One of my earliest memories is of my grandparents helping others. I remember my grandparents down near the Clemclemaluts bighouse using a horse and buggy to get logs to help build houses for others. Everyone was working together as one. When I was in grade 3, I was taken from Duncan elementary school and put into the residential school on Kuper Island. I went with my two youngest sisters and the three of us were separated. We were not allowed to speak to each other. We all had numbers assigned to us; I still remember that my number was 50. That was how they called us. I stayed at residential school until I was finished grade 7. Around high school, I started canoe pulling; one of my sisters helped get me into it. I really enjoyed it. First I pulled with Lady Seven out of Pat Bay. For training, after getting off the water, we would have to clean our systems out and go running. After I moved back to Duncan, I pulled for Cowichan Queen and for Malahat. In Malahat, I remember running with dumbbells on my feet and in my hands along the highway. We also had to eat a special diet: no sweets, no sugar, no pop, no salt. It was a lot of discipline, but I enjoyed it. I travelled around BC with canoe pulling. We all had numbers assigned to us; I still remember that my number was 50. That was how they called us. Sandra describes her experience at a Residential School When I was 16, I joined the shaker church. It helped me, and I met a lot of people there. Later, I went back to high school. I was 21 when I graduated from Cowichan High School. After high school, my dad encouraged me to continue schooling. I started child and youth care up in Nanaimo but didn t like the program. I came back to Duncan and looked after my father along with my uncles. I enjoyed looking after my father; I cooked and cleaned and shopped for him. I looked after him for six years before he died. When my dad died, that was a very hard time for me. After this I went to go live with my older brother. 14 Living with Scleroderma Sandra George Living with Scleroderma Sandra George 3

Around 1992, I started showing symptoms of arthritis. I was sleeping a lot and found I was quite tired and weak.

At first I was angry, mad and felt all shook up because I had no support. It stopped me from going to school and working because of getting too tired and needing to rest.

I believe we have to go through the grieving and anger stages because we would end up bitter, moody and grouchy if we didn t go through these stages.

I learned that you have to take one day at a time and you can t really plan out your life. I then found the scleroderma group where we could talk about what we were going through.

As time went on, I knew I wouldn t be able to walk that far any more and walking was something I loved to do when I needed to work off anger. This illness affected me big time.

I miss volunteering at the breakfast program, making time for homeless people and baking for big ceremonies. I still like to keep busy, but I have to know my limits.

I think with this illness you have to think positive because if you think negative you will go downhill and you might not be able to get back up. A rheumatologist diagnosed me with scleroderma.

The hospital is an important place to go if things go wrong. Getting checked if you are not feeling well is needed because you don t know what could be wrong.

4 Around 1992, I started showing symptoms of arthritis. I was sleeping a lot and found I was quite tired and weak. I saw physical changes in my hands and found that both my hands and feet would easily turn purple and get cold. My right hand was affected first by aching and curling up. I thought it was arthritis. At first I was angry, mad and felt all shook up because I had no support. It stopped me from going to school and working because of getting too tired and needing to rest. I went to my health centre for support. It affected me personally; I couldn t have a normal life with my child because I couldn t go out and play with her; it sucked. I did a lot of grieving. I believe we have to go through the grieving and anger stages because we would end up bitter, moody and grouchy if we didn t go through these stages. I had to change my way of thinking and tried to be positive. My prayers and being positive helped me a lot in my life. I learned that you have to take one day at a time and you can t really plan out your life. I then found the scleroderma group where we could talk about what we were going through. We fund raised and had golf tournaments; it was really fun and helped a lot. As time went on, I knew I wouldn t be able to walk that far any more and walking was something I loved to do when I needed to work off anger. This illness affected me big time. I told myself that the disease would not control me: I would control it. I notice it is getting harder on me now. I have to stay away from people that are negative or sick which kind of isolates me. I miss volunteering at the breakfast program, making time for homeless people and baking for big ceremonies. I still like to keep busy, but I have to know my limits. Sometimes I dream about being normal, walking without getting tired, having straight fingers and not always being in pain. I used to be ashamed of shaking hands because my fingers were curled. I think with this illness you have to think positive because if you think negative you will go downhill and you might not be able to get back up. A rheumatologist diagnosed me with scleroderma. I think that it is really important to be sent to a specialist right away to ensure that you are quickly and properly diagnosed, and then you will learn what you need early on. The hospital is an important place to go if things go wrong. Getting checked if you are not feeling well is needed because you don t know what could be wrong. It is important to find out what is it is that has caused the illness so that you can get better. I found taking the ambulance to the hospital can be safer than having someone drive you because they have all the supplies to help you. With scleroderma it affects your lungs and you shouldn t take chances with your breathing. I have found that having lots of water can help with getting an IV or when you have to have blood taken. I have learned that having supports are necessary. You need people to understand what you are going through and to not be afraid of the disease. Find people to support you who will listen to you like nurses, counselors, doctors and other people who are going through the same challenges. I have learned that support groups that are physically active and busy can be a very good way to stay motivated. As well, eating with company/ friends help to keep up your appetite up. I found that sometimes doctors don t believe you when you tell them about your concerns. You have to trust in the fact that you know your body better than anyone else. Sometimes you have to convince the doctor to listen to you. Whatever you have experienced in your life, you have to work through it before you heal and help others. Dealing with tragic things in your life makes you stronger and your life becomes more manageable. A way of healing is to give back, I am sharing my story with others as a way of help them and myself. 4 Living with Scleroderma Sandra George Living with Scleroderma Sandra George 13

Spiritual I believe it is important to find a way of grounding yourself

I have also found praying helps me in my life, it keeps me going.

You have to believe in your prayers and anything that you pray for.

but you have to believe in the water for it to help you.

5 Spiritual I believe it is important to find a way of grounding yourself and calming stress. I use knitting to help me relax. I have also found praying helps me in my life, it keeps me going. I pray for my family and for myself to have strength. You have to believe in your prayers and anything that you pray for. If you use herbs to help your scleroderma you have to believe they will work in order for them to really work. I have also found it important to go to places or for walks like the beach to pray and calm yourself. Going to places where I got support like the Shaker church has helped me to keep my spirits up. Water can also be very healing like the ocean, lakes and even bath water, but you have to believe in the water for it to help you. I learned that you have to take one day at a time and you can t really plan out your life. I have also found it important to go to places or for walks like the beach to pray and calm yourself. 12 Living with Scleroderma Sandra George Living with Scleroderma Sandra George 5

Fatty Foods Sour Oranges Sugar Hard Candies & Rice Coke or Pepsi Hamburgers, Stew, Red Meat, Pepperoni Spices; Taco

diarrhea Cause acid reflux Bad for arthritis Hard to swallow and can cause you to choke Can make it hard to breathe.

Can hurt your stomach Can hurt your stomach Hard to digest because of the acid in it Sometimes cause heartburn Can

medicine that fits for you. I use Indian medicine. Indian medicine can only work if you believe in it.

Snow berries in BC can help with pain, arthritis pain in the joints and across the chest.

Frog leaves found in BC can help with the healing of sores, helps to take out puss and helps to relieve pain.

Tylenol extra strength taken every 4 hours helps with pain.

Penecillamine is used to help soften the skin but you have to have weekly blood tests because of the effect it has on

Salt mixed with warm water can help with ulcers on your hands.

6 Fatty Foods Sour Oranges Sugar Hard Candies & Rice Coke or Pepsi Hamburgers, Stew, Red Meat, Pepperoni Spices; Taco Mix, Hot Spice Tomato Soup Pears Pepper Coffee Canola Oil, Shortening Lard FOODS Bad Foods Cause upset stomach and diarrhea Cause acid reflux Bad for arthritis Hard to swallow and can cause you to choke Can make it hard to breathe. I found them to be more difficult later in the disease. Can hurt your stomach Can hurt your stomach Hard to digest because of the acid in it Sometimes cause heartburn Can cause acid reflux Cna make you more tired Can cause an upset stomach and diarrhea You have to find your own herb medicine that fits for you. I use Indian medicine. Indian medicine can only work if you believe in it. You must be careful not to mix prescription medicine with herb medicine because they might conflict with each other. Snow berries in BC can help with pain, arthritis pain in the joints and across the chest. You boil the branches and berries then add the water to your bath. Frog leaves found in BC can help with the healing of sores, helps to take out puss and helps to relieve pain. You can wrap the leaves over sores. Bathing helps with pain especially before bed. Tylenol extra strength taken every 4 hours helps with pain. Tylenol #3 and an oxygen mask has been good for me when I get a cold. It helps to stop coughing and with breathing. Penecillamine is used to help soften the skin but you have to have weekly blood tests because of the effect it has on your liver. The Rheumatologist came up with this medicine. Salt mixed with warm water can help with ulcers on your hands. You just soak you hands or fingers in the solution and the salt water helps to heal and dry up ulcers. Gravol has helped to keep food down. I didn t need it at first but after 17 years of scleroderma I need it now. The prescription of gravol that works for me is (APO Dimenhydrate 50mg). Mild Manuka Oil can be used for ulcers on your fingers. Cedar / Cedar bark for healing Cheese, Milk Can cause stomach upset Most Pastry Cause heartburn 6 Living with Scleroderma Sandra George Living with Scleroderma Sandra George 11

STRESS Gatorade Good Foods Can help with bowel movements and to pee more.

If possible, lift the head of your mattress to help reduce acid reflux, coughing and helps with breathing.

Don t lift heavy things. Find your own comfortable position to sleep in. Bathing helps with sleeping.

Look after yourself. Being chilled is hard on the body and makes it ache.

Fruit (sweet cantaloupe, sweet grapes, sometimes apples, sweet oranges). Some canned fruits can be good in the winter time.

Becel & Butter Chicken, fish Brown Wraps Chinese Noodles Cream of Wheat 3 min.

Don`t overeat; eat about 6 small meals per day. Eat slowly and don`t eat when you are too hungry.

7 STRESS Gatorade Good Foods Can help with bowel movements and to pee more. It also helps to prevent constipation, getting thirsty and a dry mouth. If possible, lift the head of your mattress to help reduce acid reflux, coughing and helps with breathing. Rest often, knowing when to rest will keep you from getting sick. If you feel tired, REST. Don t do too much in one day. Don t lift heavy things. Find your own comfortable position to sleep in. Bathing helps with sleeping. I will often have a bath first thing in the morning and just before bed to help relax my body. You need a quiet place to rest. Look after yourself. Being chilled is hard on the body and makes it ache. Boiling Food Baking Food Foods that Help Bowel Movements Chicken and Fish Potatoes Good Oils Foods easy to Digest Reduces fat Is good Fruit (sweet cantaloupe, sweet grapes, sometimes apples, sweet oranges). Some canned fruits can be good in the winter time. Easy to digest Need to be mashed to allow for easier swallowing. Becel & Butter Chicken, fish Brown Wraps Chinese Noodles Cream of Wheat 3 min. Egg Lactose Free Milk McGavins & Oatmeal Wonder Bread Blending your food can help with making it easier to swallow. Don`t overeat; eat about 6 small meals per day. Eat slowly and don`t eat when you are too hungry. Denial When I first was told I had scleroderma I was alone. I was very sad and emotional. I went to the health centre right away but after that I kept to myself. I kept in my room. I cried a lot. I stayed there for a month grieving. I went to a counselor to help me understand and grieve. I then met another woman with scleroderma and we spoke and she taught me a lot about the disease and how to live a healthy way. Some people I think don t know how to live healthy. A lot of people get scared and don t want to know. 10 Living with Scleroderma Sandra George Living with Scleroderma Sandra George 7

Challenges Dust Rugs should be removed, they hold dust that causes you to cough and have a difficult time breathing.

Changing your Routine With scleroderma you get tired much easier; it can be very painful to push yourself too hard but you do have to keep moving.

Rain (damp weather) can make your body ache. Cold temperatures can make your hands and feet go purple, become stiff and cause pain.

Be careful in the public as you can get sick easier than others. Ulcers can form on your hands and nose.

I use a Q-tip to put antibiotic ointment because it is easier to handle.

My hands are sensitive to the soap and are too stiff to wash the inside of dishes.

I have also learned that things like detergent that smell too strong can make my nose run.

Sheep s wool is also too dusty and causes me to cough and my nose to run. I also found sheep s wool too heavy to lift while I was knitting.

8 Challenges Dust Rugs should be removed, they hold dust that causes you to cough and have a difficult time breathing. (Drinking water helps) Window blinds and the space under your bed are other places that hold a lot of dust. Changing your Routine With scleroderma you get tired much easier; it can be very painful to push yourself too hard but you do have to keep moving. Staying active and motivated can help to keep you from feeling down. Having someone to shop with and help with lifting and reaching can keep you safe. Rain (damp weather) can make your body ache. Cold temperatures can make your hands and feet go purple, become stiff and cause pain. Putting your hands under warm water helps. As time goes on healing from sores and illness takes longer to recover. Be careful in the public as you can get sick easier than others. Ulcers can form on your hands and nose. It can be difficult to put on medicine on your ulcers because your hands are stiff. I use a Q-tip to put antibiotic ointment because it is easier to handle. I have found that I need a dishwasher and gloves to clean my dishes because my hands are sensitive. My hands are sensitive to the soap and are too stiff to wash the inside of dishes. I also have to have a personal care helper and homemaker come over to assist with my daily living needs. I have also learned that things like detergent that smell too strong can make my nose run. When I get wool from the second hand store it can be full of dust and can make my nose run. Sheep s wool is also too dusty and causes me to cough and my nose to run. I also found sheep s wool too heavy to lift while I was knitting. If you are a First Nation person you might get assistance from your band with having someone go shopping with you and help with personal care and home making work. I had to learn how to get out of my bathtub by myself safely. You have to turn around and get on your knees to stand up. I have a pole bar in my bathroom to help me get in and out of my tub. I have also used a tub chair that will lower and rise you into and out of the water. The problem with the chair is it does not come out of the tub easily for others to use the bath. With scleroderma you get tired much easier; it can be very painful to push yourself too hard, but you do have to keep moving. Staying active and motivated can help to keep you from feeling down. 8 Living with Scleroderma Sandra George Living with Scleroderma Sandra George 9

CYSTIC FIBROSIS & YOU

I N F O R M A T I O N CYSTIC FIBROSIS & YOU A guide for children with CF aged 8-12 years Cystic Fibrosis Trust. Registered Charity No. 1079049. Registered Company No. 3880213. The Cystic Fibrosis Trust