Posted by: eczemancipated | December 5, 2012

“Upper Class” Interview – Part 2

Today’s post is the second of a 2-Part Interview. Here you will read 5 of my Google Group ITSAN Forum “upper class mates’” dialogue about their struggles through RSS recovery.

Just to review, here is a bit about the participants:

Louise is 36 and lives in the UK. She began using prescription topical steroids in her early childhood, but for the last 15 year she used them on her face. Louise is blogging about her experience; you may read more about her at: http://topicalsteroidwithdrawal.blogspot.com

Joey Brown is 57 and lives in the USA. She believes to have started using prescription topical steroids around 6 months old, but definitely for the last 40 years she had used them consistently. She noticed in the summer she only needed to use them once a week, as the sun and swimming kept her skin more clear. Joey is blogging about her experience; you may read more about her at: http://redskinsyndrome.squarespace.com

Ami is 22 and lives in Singapore. She only started using prescription topical steroids in February of 2011.

Brendan is 24 and lives in Australia. He is sure that he used over-the-counter topical steroids for approximately 3 years, mainly on his face.

Susan is 60 and lives in the USA. She began using topical steroids occasionally on her eyelids at 28 years old. By age 38, she needed a steroid inhaler for allergies. At 40, her eyelids required consistent topical steroid application and then by 54 years old she started applying them to her wrists and behind her knees. At 56 years old she developed asthma and continued the steroid inhaler.

Sit back and relax while you read the (Part 2) conclusion of “Upper Class Interview”.

 The Interview

What month and year did you stop using steroids?

Susan: October, 2011
Ami: October 28, 2011
Louise: November 2011 stopped all topical steroids. I still use my steroid inhaler though.
Brendan: December 17, 2011
Joey: September 1, 2010 [26 months since topicals which I quit April 2010 and 19 months since the orals. I am not sure if the orals slowed anything down so I count from September 2010 as my quit month.]

Were you employed when you came off steroids?

Susan: Yes, I work part time.
Louise: No. I work from home, self-employed.
Ami: I wasn’t in school. I took time off 2 months before I stopped steroids because my skin and health was awful.
Joey: No, I have been on SSI since 2004 when I ruptured my lower back disc at a job. I also was diagnosed with a bulging disc in my neck, osteoporosis, spinal arthritis, chronic fatigue and fibromyalgia. I do think the 40+ years of steroids played a big part in all of this.
Brendan: No, the shop I worked at part time closed just before I started TSW and I never bothered getting another job until now. I’m also doing [university] part time until I finish.

Did you take off of work for any length of time?

Ami: Yes, took a total of 2 semesters off school.
Louise: Not applicable, although I was laid up for 3 months, so I was unable to do very much at all.
Susan: No, I worked all along. I found it distracting. I never had extreme tiredness or major oozing, though.
Brendan: no, but I haven’t had a job.
Joey: N/A

Did you stop working altogether? Have you gone back to work yet?

Louise: I work from home so this has not been a big issue for me.
Joey: Not unless I get a miracle and I do believe!
Ami: I didn’t stop school altogether. I took 2 semesters off, so I didn’t have to go for classes, but I continued with a research project (mostly did it at home – went to school maybe 4 times in total, over 10 months).
Brendan: I could have gotten another part time job, however I’ve been lazy. But also I think I don’t really want to put myself in a position of flaring insanely and being committed to work.
Susan: N/A

Are you still working?

Susan: Yes
Brendan:  [University] is over for the year but I enrolled in summer school starting in January.
Ami: Started school in my 10th month, just finished my last week. YAY!
Joey: No
Louise: Yes

Have you tried to apply for disability?

Louise: No
Joey: Not for this…
Ami: Nope
Brendan: No
Susan: No

Have you had any care-givers?  What have they done that is most helpful?

Susan: My husband has been very helpful. I’ve gone to a variety of practitioners: acupuncture, homeopathy, nutritional consultant, network spinal analysis, massage. Husband: just being positive and encouraging and sympathetic. Practitioners: nutritional advice, health hand-holding.
Brendan: Not really, no one really gets my problem, not that it really matters. My parents would help out with money if I ask. I don’t really like asking. However, lots of creams have gone on their credit card.
Ami: My mother mostly. She helps me out a lot.  Financially my parents support me, so there was no financial stress when I made the switch to organic stuff (food, detergent, soaps); this helped me out a lot.
Joey: No… But would have loved it.
Louise: My husband took the kids to school and helped with the housework in the early months. Mornings were always awful for me and it gave me chance to have a bath and set myself up for the day when he was taking them to school.

Is your physician in agreement with RSS/TSA?

Louise: I have not spoken to my doctor about it at all.
Joey: Yes, she is wonderful and called Dr. Rap and has changed her views on steroids now.
Ami: He doesn’t know and I haven’t told him.
Brendan: My derm doesn’t think I have TSW. However, he does believe in it. I think it’s because I have a milder case or maybe have steroid damaged skin. However I still go through the flaring process so it’s more like TSW.
Susan: My internist is skeptical but accepting. I’ve been seeing Dr. Rapaport every couple of months. My alternative practitioners are unfamiliar with it, but totally agree that steroids are harmful.

Does your local physician treat and observe your withdrawal process?

Susan: No. See above.
Brendan: No
Ami: No
Joey: Yes, very helpful and supportive.
Louise: No

If not, are you a patient of Dr. Rapaport? (Via in office or long distance?)

Louise: No
Ami: No
Brendan: No
Susan: Yes. I live 20 min from his office.
Joey: Kelly wanted to fly me to see him but I was just too sick, so my doctor called him and I have had some emails from him for the nerve pain. He also called the derm that I was referred to for UVB light therapy and left her an instruction message. He is not doing emails anymore as he is swamped from people all over the world now.

What absolutely has NOT helped you?

Susan: N/A
Joey: N/A
Brendan: Nothing has really helped it get better however things have made it easier. I think with this you need to accept it will take a while to heal and it’s hard and will [stink] but the end result will be skin freedom and happiness!
Ami: Natural oils on my skin (e.g. organic extra virgin coconut oil, Dr. Alkaitis oil).
Louise: Ice packs. Some find them good but I couldn’t stand them.

When is your estimated recovery date? (For instance 12 flares over 12months or 12 flares over 18 months.)

Louise: I think I will be mostly healed by 18 months, which will be July 2013.
Joey: Well, they say about one month for every year of steroids. With variables due to potency of creams, how much in certain areas etc., but I figure about 40 months…  I see some long termer’s really improving in the 3rd year so I am pressing on to that time and trying to stay positive with the words of Dr. Rap, “YOU ALL WILL HEAL!”
Ami: I think my total healing time will be around 20 months.
Brendan: I’m going to say 18 months based on Rochelle. 🙂 The thing I have against me is I used for a prolonged period constantly on my face. So I would say I, even though it was low potency, I had prolonged exposure and I can see the areas that I used to put it on are suffering the most. 😦
Susan: N/A

Or have you already completely recovered? (On what date, after how many months?)

Louise: I thought I was healed this summer. But I flared again in October after about 4 months flare free.
Susan: Not yet, but I see the light at the end of the tunnel.
Brendan: N/A
Ami: N/A
Joey: No, not yet and I will be letting you all know when I do!

What are your words of advice to the new comers?

Louise: Educate yourself. Prepare yourself. Believe you will heal.  Hang in when it gets tough. YOU WILL HEAL!!!!

Susan: Be patient. Be positive. Attitude is everything to get through this. Have faith. It seems like it will never end, but it will. Everyone is different. Try different things suggested on the forum and see what works best for you. Do everything you can to be healthy. It won’t directly end TSW, but will make it much easier. Don’t give up. Steroids are a poison and going back will not help. Use the forum as a support. It saved my life and sanity.

Ami: “The wound is the place where the light enters you” (Rumi) has been an important reminder throughout this journey. Take care of yourself, do things you love, don’t be too hard on yourself. (I had to accept that I would be looking like [****] for a while, and after I accepted that things got much easier to move past.) Know that bad days will end sometime. You will heal!!!!!!

Joey: Listen to the teleconferences with Dr. Rap over and over. Read his and Dr. Fukaya’s reports to refresh your mind that this is not permanent and it is TSW. Stay tight with the support groups, use meds, counseling whatever it takes to get through this and yell for help when you are sinking! We are warriors and crawling through a steroid jungle with pits, snakes, creatures, deserts and black holes and we need to hear from the veterans who came through all of that and how they did it. It helps me a lot! Spread the word to everyone, make a blog, bring copies of the doctor’s reports, send the press releases that [Jonathon Root from ITSAN] makes to the your local newspaper, email TV shows and file a complaint with the FDA site. Contact your local radio station. [Print the card with the] ITSAN website on it for all the people you will be telling about this! Donate to ITSAN if you can, too, thanks!

Brendan: “Try to keep in a good head space by exercising. I 100% feel best after going running or bike riding.

However, only do what is comfortable for you. Drink lots of water and when it’s feeling better get some sunshine. Scratching areas feels good, but is bad. If you’re at home buy some leather gloves so you can’t shred yourself with your nails. Ice packs are your friend. If a cream is making it burn and irritating your skin more, DON’T USE IT. Find an alternative or go flaky as there’s no point making it more annoying than it already is… Remember that all this crap will be a distant memory in the near future.

*** Any text in [ ] brackets denotes that the participant’s commentary was slightly edited for simplicity.

DISCLAIMER: While every caution has been taken to provide my readers with the most accurate information and honest analysis, please use your discretion before taking any decisions based on the information in this blog. The HP Esthetics and Eczemancipated author(s) may keep updating old posts on a regular basis and is not bound to explicitly state all corrections made… The interviewees’ expressions in this blog do not necessarily represent or reflect the views or experience of The HP Esthetics and Eczemancipated author(s). They have been recorded for the benefit of others who are coping with RSS and looking for answers to similar questions.


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