Las Vegas, Nevada
1.When did you start using topical steroids? And why?
I started in the beginning of December 2015 because I had an eczema like spot on my left hand, which did not respond to any natural topical treatments. Later on I found that it was some food sensitivities that were causing the eczema.
2. What was the name of the topical steroid?
It was an over the counter steroid cream CVS’ pharmacy brand.
3. Were you ever prescribed more potent steroids?
I did not ask my allergy doctor for a prescription and he did not suggest.
4. How did you find out about RSS?
The day I stopped using the cream my eczema exploded, or so I thought, so I Googled “topical steroids detoxification and healing” and I came across the ITSAN web site. I am so grateful to ITSAN and similar online recourses to find so early in the process what I have, what to expect, and in some extent how to cope with it.
5. What made you feel you had RSS?
Since it started, I have been fitting 100% to the clinical presentation of the condition with all symptoms and signs of it.
6. Were you diagnosed by a doctor? Did you have a supportive doctor?
I have not been diagnosed by a doctor because there is no one in my area of Las Vegas, NV who is familiar with the condition.
7. What were your first symptoms?
My rash exploded the same day I stopped the steroid cream to cover 3/4 of my arms and 3/4 of my legs including buttocks. I had immense burning, stinging, and flu like symptoms.
8. Is your family supportive? Friends?
Yes, it is supportive. I do not involve my friends in this.
9. Have you ever been to a hospital for this?
10. What has been the hardest part of this condition?
Everything was hard and challenging from the physical pain, burning, stinging, itching, decreased range of motion, and fever to the emotional and mental suffering and isolation, the inability to exercise and socialize. This condition is a life altering event.
11. How long have you been in withdrawal?
It started on 05/22/16 up to now.
12. What do you use as comfort measures during this?
I have been focused on the solutions instead of the problem. I had the appropriate mind set to cope with the TSW without succumbing to depression, self-pity, and a sense of helplessness. Mentally and emotionally, I was at the right place to be able to stay on the positive side of it. I credit that to the online recourses for the condition and my spirituality. I have created multiple self-care natural and organic cosmetic products to alleviate as much as possible the symptoms of itching, burning, pain, and inflammation. I kept myself busy and distracted from the TSW suffering to have the feeling of a decent, normal life. I practice daily relaxation and self-hypnosis which is a great tool when one has a struggle with a chronic condition.
13. Are you employed? Has this affected your job status?
I do not work outside of home due to another long lasting disability from Fibromyalgia.
14. Have you gone to therapy/wish to go to therapy because of this condition?
The only therapy I would like to try is mineral baths. However, I cannot tolerate traveling currently. I live in Las Vegas, NV. I am Bulgarian in origin and we have a number of mineral water resorts specialized in skin conditions treatment. These waters are similar to the famous Avene, France thermal mineral waters. The treatment there is much cheaper than in France.
15. If there is one thing you could say to another sufferer, what would it be?
I am aware that some TSW sufferers experience a much worse process and have their entire bodies affected. However, I would say that staying positive, focusing on solutions, trying to keep some things of their normal life routines, and employing relaxation and meditation techniques would be of great benefit to their recovery process. One book/audio book that has helped me through episodes of health struggles is The Power of Your Mind to Heal, by Joan Borysenko PhD.
Thank you Dilyana for your awesome interview!