Walk A Day in My Shoes

I have a challenge to present to those who are brave, bold and adventurous. I would like to invite you to walk a day in my shoes. You may be thinking, "How hard can that be, and what point would it serve?" My answer to these two questions is fairly simple, but I will break it down.

1. Depending on the day, it can be extremely hard. I believe wholeheartedly that it would be much more difficult than most would believe, especially from observing me from the outside. I do not look ill and seem fully functional to the onlooker.
2. The point would be to experience the physical and emotional feelings that I do on a regular basis and develop an understanding of what it is like. My pain and fear is very individual and can only be felt by me. You cannot see or feel my pain.

I have scleroderma, a rare and progressive autoimmune disease. Its trademark is the hardening and tightening of the skin and connective tissues of the body. From a clinical standpoint, it is an incurable disease with multiple types, degrees and symptoms associated with it. From a human standpoint, it is much like a tornado due to its unpredictable nature. You cannot know for sure what path it will take or at what speed it will travel. It can leave its victims feeling alone, isolated and fearful.

The fact is that, unless you have walked a day in the shoes of a scleroderma patient, you cannot know what it is like. Since it is not possible to actually know what it is like, ask yourself what you can do to help. I would like to encourage and invite friends and family members of patients to consider the following:

• Become educated about the disease and its effects. There are many resources available online, at your local library and in bookstores. Do not be afraid to ask questions. The more knowledge you have, the more help and understanding you can offer.
• Be willing and able to be that much-needed sounding board. Just being a good listener is sometimes all a patient needs.
• Encourage your loved one to remain positive and help them to locate good resources for themselves, be it online reading, support groups, counseling and/or physical therapy.
• Ensure your loved one is seeing a rheumatologist regularly and is receiving the medical treatment they need in order to manage the disease.

Please see my full article link at http://www.suite101.com/profile.cfm/jjromero.

Working the Scleroderma Puzzle

Having had symptoms of scleroderma for the past several years, and finally being diagnosed recently, I have experienced the challenge of "working the puzzle." I look at each new symptom as a piece of the big puzzle that needs to be completed. This puzzle is not just big, it is also difficult and frustrating to solve. It is one you want to scramble up and throw back into the box. It is one you wish you never looked at. It is one you want to walk away from and forget about entirely.

Being diagnosed with scleroderma is not typically a matter of yes or no, and its colors are not black and white. Scleroderma is a unique shade of grey, and yes it is an ugly and dark one. Unfortunately it is not uncommon for patients to be labeled as hypochondriacs. This is because something always seems to be wrong with them, and it is usually something new and strange. Patients appear to be fishing for something that is not there. The patients are frustrating the doctors, and the doctors are frustrating the patients. How sad for the patient who knows there is something wrong, but no one can seem to find it. Their fears and concerns are not validated.

Due to my own personal experiences, I tend to feel more for the patients than the doctors. All too often the doctors I met with did not take my concerns seriously and disregarded me completely. I want to encourage those suffering with symptoms, and suspecting scleroderma as the culprit, to keep their eye on the ball. Do not give up until you have your questions answered. As a patient, I learned that I had to be my own advocate. I had to figure out what the next step was, what made sense and ultimately what was going on. After all was said and done, I could have very accurately diagnosed myself. 

Patients, I am not encouraging you to neglect seeking medical attention or to simply diagnose yourself and call it a day. I am, however, encouraging you to be vigilant, aware and on guard. You know your body better than anyone else does, and you know when something is not right. Do not let anyone discourage you from fitting the pieces of the puzzle together when you know that you have one to solve.

Keep going until the puzzle is complete!