Sugarless - How Sweet It Is . . .

I am a sugar addict! I did not drink, smoke or use recreational drugs. I even avoided caffeinated and carbonated drinks, but sweets were my weakness, but I kept my intake in check. I tried to eat as healthy as I could despite my busy schedule. Several years ago when I noticed that food with refined sugar made my hands tingle, I radically limited desserts, sweets and white breads. I immediately started losing weight of about one pound a month. After a couple of years, I became concerned because those few extra pounds were gone and some people commented that they wondered if I was anorexic.

My chocolate fix of choice!.

Looking back I recognize the symptoms of scleroderma and the noticeable negative effects of refined sugar started about the same time. Coincident? Maybe. What I do know that is if I gave in to my sugar addiction, I got ulcers that surfaced at the top joint of my pinky fingers. It took several weeks to get them healed. Part if my weight loss was due to my thyroid that had stopped working, so I started taking thyroid medication. In February 2013 when treatments for scleroderma started with 60 mg prednisone, I was able to gain some weight back especially after eating Pollo Loco bacon avocado taco salad with dressings that contains over 1000 calories. My appetite has returned, but esophagus issues makes eating time consuming and difficult.

For someone who used to eat because it was necessary, getting enough calories and nutrients has now become a main focus of my life. To satisfy sugar cravings, I treat myself to sugar-free candy and an occasional dessert if it is really delicious. Guylian makes sugar-free dark and milk chocolate bars that are exceptional, and is one of my addiction-satisfying treats.

Medical Baseline Allowance for Utilities

Let there be light for less$$

Scleroderma symptoms are complicated by heat and cold. Too much heat stimulates inflammation and cold aggravates Reynauds so to provide myself an environment that is temperate is a must. In this age of modern conveniences, furnaces and air conditioning compensates for what Mother Nature throws our way, but that comfort comes with a price. It is wise to check if the place you live has programs to help offset the high costs of energy. For example in California scleroderma patients can get additional quantities of energy at the  (baseline) price for residential customers. To qualify for  Medical Baseline, a California-licensed physician must certify that a full-time resident in your home has one of these medical conditions:

• Dependent on life-support equipment while at home,
• A paraplegic, hemiplegic, quadriplegic or multiple sclerosis patient with special heating and/or cooling needs,
• A scleroderma patient with special heating needs, or
• A life-threatening illness or compromised immune system with special heating and/or cooling requirements to sustain the patient's life or prevent deterioration of the patient's medical condition.

There is a link below to the PG&E California Medical Baseline Allowance Web site. There is also a link to the SCLERO.ORG by the International Scleroderma Foundation providing information on various assistance. 

Limited Scleroderma with an Unlimited Potpourri of Pills

To avoid one of the pitfalls in the quagmire of scleroderma land of messing up or forgetting to take medications, I recommend using a pill organizer. The one I like to organize my potpourri of pills and supplements is recommended by the arthritis foundation, the EZY-DOSE® Push Button Series Pill reminder with push button pop-up cover. It is easy to open and allows consumers access to their medications without using excessive force to pull open a latch or lift up a lid of a pill container. It has a contour bottom for easy pill removal. Its push button design is applied to numerous pill box designs including the 7 day, 14 day, and AM/PM models manufactured by Apothecary Products, Inc.

Having learned from past frustrations, I also take a printout of a spreadsheet I created with the history of my doctor visits including, dates, reason, telephone and FAX numbers and other pertinent information so it is available at an glance in case the doctor I am seeing at the moment needs to contact another facility or person for information. The print out includes a list of medications and the dosages, and my drugstore information. Since scleroderma has affected my speech, I find it easier to give them something to read with the information printed on it than repeating myself so they can understand. 

The Dreaded "F" Word

I have been taught that to become a truly spiritual person one must be stripped of pride and have humility. Gastrointestinal issues that sometimes come with limited scleroderma is a tool to help with that refining process! After my rheumatologist added several drugs to my prescription cocktail, I had to deal with the dreaded "F" word - flatulent. . . 

Excuse me!

Fecal incontinence, bloating and swallowing air while working food down a weakened esophagus, paired with loose sphincters is a recipe for fanny halitosis and embarrassment. After I took my meds each morning, I could produce burps that would make a teen-age boy proud, but I was not pleased. So back on the Internet I went looking for solutions. I started adding wheat grass to my vegetable smoothies, and after several days, I dared to go out in public again. My primary-care physician gave me a prescription for anti-gas/simethicone that I take on occasion. I also try to avoid foods that produce excessive bloating. I always keep clean underwear, wipes and panty liners with me in case of emergency. I scout out locations of restrooms when I am out shopping etc. so I will be prepared if I need them and do not have time to search. There are many other issues with scleroderma that are painful or inconvenient, but for me, the indelicate subject of these "F" words, farts, flatulent, fluffs, flurpies or flabbergasters and fecal incontinence is the most annoying, especially unexpected sharts, but I have to admit they are pride strippers, and you find out who your friends really are!

Yoga Pants and Yoda

Yoga Workout Pants

My daughter and her friends nicknamed me Yoda because they claimed I was small and wise. One thing that has changed most in my life since I entered scleroderma land is what I wear. No more blue jeans with buttons that were hard to undo. Wearing Yoga workout pants has been a wise decision! Because I am only five feet tall, it was hard to find ones I did not have to shorten, and my stiffened hands have made using a sewing machine more difficult. I discovered that Target has XS, petite, short yoga pants in several different styles. The ones I like the most are polyester and spandex so they do not fade fast. I also bought a pair of Everyday Yoga Pant from Fit Contour on Amazon that I liked because they did not have the Champion label embroidered at the ankle. Target is also a great place to buy a large variety of tanks to layer with tops and sweaters. Because scleroderma tends to strip pride away, I have changed some style for comfort.

Clean Mouth but a Tied Tongue

Waterpik Ultra Water Flosser

One of the most frustrating thing about having scleroderma is what it does to the mouth. I can no longer drink from a straw, enunciating words is difficult, my tongue is tied because the ligament under the tongue has became shorter and rinsing out my mouth is messy. Because of issues with my teeth from childhood and a car accident, I have had paid thousands of dollars in dental work over the years. Keeping my teeth and bridges flossed because my hands do not grasp dental floss and threaders well is a problem. Also it is now harder to rinse my mouth because my lips are less flexible because of scleroderma. After I eat I find bits of food settle along my gum line. To help keep my teeth and mouth clean I bought a Waterpik Ultra Water Flosser from Costco that also came with a smaller travel flosser. With the help of disposable floss picks to floss between the teeth that are not bridged, my mouth feels nice and clean. I also bought an electric toothbrush that helps because it does the work although it can sometimes be a little rough on sensitive gums even on the gentle cycle, but I like the small head and how clean my teeth feel.

Happy Feet and Warm Hands

Carolon Champ Hotmitt

With scleroderma, I suffer with Reynaud’s Syndrome. A challenge is to keep my hands and feet warm and in better condition. From now on, I will spend my winters in San Diego instead of suffering in the -20 degree weather in Utah. I have also lost some flexibility in my fingers from swollen knuckles and tight skin, and my hand therapist suggested reusable, microwavable Carolon Champ Hotmitts. Because the mitts are large enough, I use them to warm my hand and force my fingers to bend while inside the mitt by attempting to make a fist and sitting on them. I can now almost close both hands into fists. I wish I had found these little jewels sooner because they would have helped warm up my hands after shoveling snow etc. Although I often used disposable hand warmers when away from home, these mitts are warmed in the microwave, stay warm for several hour and are reusable. I also have a hot wax unit and a hot-water foot bath with a heater so I can soak my feet to soften calluses so they are easier to remove. To help relieve cracked heals, I put several strips of 1-inch Johnson & Johnson waterproof tape across them, and after several days they soften. Since I have started on prednisone, most of the rash and cracking is gone. The warmer, more humid weather in San Diego is also gentler on my skin. 

After a visit to a podiatrist who diagnosed a bone spur in my toe and fallen arches, I bought several pair shoes with arch support shoes that are somewhat stylish. I will consider having the bone spur removed at a later date since it might be slow to heal because of poor circulation in my toes and the pain is not too bad for now. I pad between the two toes that are sore with lambs wool or toe padding. I also treat myself to an occasional pedicure and manicure, and my feet and hands are much happier!

To Eat and Not To Eat?

Electrics Hot Oil Kettle Countertop Popcorn Maker

In the last three years I lost about 30 pounds before I was correctly diagnosed with Scleroderma and my esophagus was weakened. I thought that weight loss was due to me giving up refined sugar that caused my arms and hands to tingle, but blood tests showed that my thyroid was not working. At this stage of the disease, eating is a challenge! I find that if food has a texture it is easier to swallow such a fresh fruit and vegetables except for lettuce. Foods that are difficult to impossible to eat are those that turn gooey such as french fries. Food also goes down easier if I lean back a bit instead of sitting straight or leaning forward.

One of my favorite snacks is popcorn because it tastes good and is so easy to eat. Since I am trying to gain some weight, I do not worry about calories. I bought a Nostalgia Electrics Hot Oil Kettle Countertop Popcorn Maker like the one my son has that made popping corn easy and fun, and it is delicious! I bought Flavacol Seasoning Popcorn Salt from Amazon. They also have Wabash Valley Farms Real Theater Popcorn Popping Oil and others, but I am not comfortable that is good for the heart although it makes the popcorn taste like the movies. I like peanut oil or canola oil. When the hot popcorn is done it tastes almost like what you buy in a theater. Yum!

 Flavacol Seasoning Popcorn Salt

Vitamix - My New Friend

Vitamix 5200

It is easy to take for granted the things we do each day such as eating. I have never been one that lives to eat but I ate to live. Scleroderma has caused eating to become a main focus in my life, and it has changed what I purchase because of the necessity. Because my esophagus muscles are weakened, it is easier to drink my vegetables than to eat them. During a recent visit to my daughter’s home she juiced vegetables for me to help my nutrition. I believe that lots of raw vegetables and fruit are crucial to fighting this disease. My new “toy” is a Vitamix 5200. I place vegetables, frozen fruit and some nut milk to thin down the mixture in the blender and blend it to a juice. I also add fruit juice or vitamin water to thin it more if necessary. I have found that adding wheat grass helps prevent so much gas that comes with taking all the medication and swallowing air while trying to eat.

Sclero Journey

One of the positive things about my journey through scleroderma land is the love and support of my friends and family and the adventures along the way such as the exciting ride with my son who had driven me to my first rheumatologist appointment at UCLA Medical Center. He had a trade show there so I planned to take the AMTRAK Pacific Surfliner train back to San Diego where my daughter-in-law (who has taken hours out if her busy schedule to take me to doctor appointments) would meet me. We raced through rush-hour traffic in Los Angeles in his BMW to try to catch the train to Solana Beach. I think my finger prints are still embedded in the dashboard. We did not make it in time so he hung out with me until the next one came to make sure I got on. My other son who lives in Solana Beach picked me up after midnight with a smile on his face despite the inconvenience. During a recent visit with my daughter, she spent hours working on my feet to remove hard skin and calluses. It made me feel human again. A close friend has watched over my house for the last six months and also kept my plants watered. My sister in Saint George welcomes me with open arms as I travel through and stay at her home so I do not have to make the trip between central Utah and California in one day. 

These are just a few examples of their love, support and concern that is invaluable and appreciated. It is during difficult times like this when ones priorities fall into the right place and what is most important is reinforced.

Scleroderma . . . Why Me?

When a chronic disease strikes it is only natural to ask, "Why me?" I was on the board of Directors of the International Association of Near-Death Studies (IANDS) in Utah for about 5 years and heard many near-death experiences (NDE). One gentleman who has since passed on told me about some things he learned during his NDE and that he was shown that he chose his disease so he could learn lessons quickly. He said we face five pains in this life that are our mentors not our tormenters which include:

• emotional,
• intellectual,
• mental,
• physical, and
• social pain.

I have experienced strong doses of emotional, mental and social pain, but had been spared chronic physical pain. Although I tried to understand what others suffered, I did not have genuine empathy until I faced the physical limitations and pain that comes with scleroderma. My heart has become much more tender toward those I see who physically struggle.

At a very young age I received a strong belief in God, and contracting scleroderma has not shaken my faith in Him. I can see his handiwork in orchestrating my life such as having children move to California where I can get proper treatment and enjoy a more moderate climate. I believe we face the challenges of mortal life so we can gain the maximum benefits possible for learning each vital principle necessary for us to adequately progress. The process might seem tedious at times and often difficult, but the results are worth any suffering each trial demands. The pains of this life will reap eternal rewards for those that diligently strive to face each hurdle head on and use faith in God and his son Jesus Christ to rise above them and move forward with steady strides. Although we might stumble on occasion, they are there to pick us up to help us reach our goal. It is my goal to face scleroderma with, patience, strength and courage and focus on what I can do instead of my limitations.

I Can Spell Scleroderma . . . Now What?

Once I was diagnosed with scleroderma, something I  had never heard of it was time to do research. My children also surfed the internet and became informed so they could support and help me.

Here is a Penn State site that is informative:
http://pennstatehershey.adam.com/content.aspx?productId=10&pid=10&gid=000088
There is a link to this site below named Penn State Scleroderma Summary.

Tied tongues, cracked heels, loose sphincters . . . Oh my!

Like Dorothy, I am not in Kansas anymore, or any other normal place. . .  I have entered the Land of Scleroderma!

When I was finally diognosed I had never heard of scleroderma. Maybe neither had the doctors that had all misdiagnosed me for about three years. Some diagnoses were carpel tunnel, (the neurosurgeon wanted to operate on both wrists and elbows) dermatitis of the hands and feet and rheumatoid arthritis. After I retired to the small town where I had renovated my Victorian home, an eruption on the joint of my pinky finger became infected with staph and I went to see a local doctor to get it treated. He immediately recognized my symptoms as scleroderma, at least now I had a name for my physical ailments (my body was filled with inflammation). 

Here are some of the symptoms that affected me:

• Dry and patches of hard skin on hands and feet that often led to cracking,
• Burning sensation in the balls of my feet,
• Stiffness in joints, 
• Fingers turned white when cold,
• Tight tendons in my forearms and my hands lost some flexibility,
• Weight loss,
• Itching especially across my back between the shoulder blades,
• Finger and toe nails became thicker and stronger,
• Fatigue and body weakness,
• Silent acid reflux
• Trouble swallowing - gastroesophageal reflux disease (GERD),
• Ulcers and calcification on pinky fingers and
• Last affected was ability to speak clearly. 

So now what? I had my own designer disease, scleroderma that affects each person differently. On October 17, 2012, the day I received the official diagnosis, I flew to California to visit my son for Halloween. While there I was able to see a GI doctor who scoped my esophagus and upped my dosage of pantoprazole sodium. For the first time in several weeks, I was finally able to eat more than soup. Because I was having trouble finding a rheumatologist that would take me as a patient within six months in Utah (not really Kansas), I opted to seek treatment in California. 

I joined a scleroderma support group and chose to receive further diagnosis and treatment at UCLA medical center. I was fortunate to get in to see Dr. Philip Clements one of the foremost experts on this rare disease who has diagnosed and treated patients for over 40 years. In February 2013 after a battery of tests to check lungs, liver, kidneys and other functions, he prescribed medication. I was one of those 1% that had developed inflammatory vasculitis, and at that point my muscles had become so weak because of the inflammation I had trouble getting from a prone position to sitting up. The doctor said my muscles were like mush. I could no longer drive, my walking was unsteady and I would have to lift my leg up with my hands to step up on a curb. I was afraid if my body got much weaker, I would be bed ridden. I tried walking so get some exercise, but it did not help..

The 60mg of Prednisone immediately took effect and my muscle strength began to return. Within a few weeks my hands and feet stopped cracking, my hands became more flexible and the itching stopped. As a grandma on steroids, I feel better every day! 

The purpose of this blog is to share what helps me on my challenging journey to deal with or conquer my ailments. Also to share what did not work.