Two Years Later

It has been two years since I first saw Dr Clements to begin treatment. I am down from 60 mg of prednisone to 1 mg and will be off it at the end of March. I still struggle to swallow food, but my weight is now normal. Some of the joints in my fingers will not bend because of calcium deposits so I am considering surgery.  Some times it is difficult to tell what ailments are from aging and what is because of scleroderma. All in all I am doing quite well, but when I see posts on the scleroderma support site, I mourn for those that suffer so much. I thank God for any relief we find!

Dr Clements has Retired

I am sad to report my rheumatologist Dr Clements has retired, but I am confident the next one I visit in April that is his college at UCLA will be great. I really appreciate all he did for me to help me live a more normal life. Competent doctors are golden!

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.