This month I took the trek down to Beverly Hills for my regular check up with Dr. Rapaport. I seem to be going every 4 months or so now.
My skin has made some progress since the major flare recovery in the spring. But not as significantly as I had imagined by now.
I had to take a trip to the Urgent Care a couple of weeks ago because I thought I had contracted Scabies from some of my friend’s kids. Thankfully the kids did not have Scabies, they had some other issue. Which meant my secondary issue was unrelated to theirs. Especially because I had been fending off some infections on my legs for a while. Turned out to just be the regular folliculitis infection that tends to plague us TSW sufferers. A round of antibiotics shut it down. (Normally I avoid antibiotics but the infection had gotten out of control despite my best efforts to kill it with essential oils and supplements.)
I had a follow up with my local doctor post urgent care visit for a skin check and to give him an overall health update. The local Doctor felt that my body was fighting an additional issue called Tinea Versicolor. He said I didn’t have to take anything for it if I didn’t want to but that it was definitely contributing to my itching and discomfort.
Then to top the month off I caught a head cold from the local population, as head colds are going around our circle of friends.
So you can imagine my state of mind taking the 11 hour round-trip trek to Dr. Rapaport ‘ s office. I’m really over being sick, it’s been 41 months of this Red Skin Syndrome madness.
Dr. Rapaport is always really encouraging. The visit to his office started out by him looking at all of my skin, asking me about the last couple of months, touching the “thickened skin” to test the elasticity and how quick the color returns to the skin after it has been firmly pressed. He gave a summary of what he observed of me in relation to the 1000s of patients he has seen over the last 25 years, just like me.
On the positive side, Dr. Rapaport seemed to think I was improved, remarking the skin on my hands is not as thick and the skin on my legs has smoothed out. He wants me to get sunshine, sunshine and more sunshine. He said if I could spend 4 weeks at the Dead Sea he said I may see significant changes. (Not really feeling a trip to Israel despite my Jewish roots. Just seems unsafe to travel there but that could just be my perception.) He said Hawaii would be a great second option.
Interestingly, as a side note, he said it was the UV rays at the Dead Sea, not the salt, that was truly healing. He gave me a little history lesson about post WW2 victims that had terrible psoriasis were brought there for healing and the study done reported benefits from the UV concentration more than the salt. I would have to find the research to be able to speak anymore on the topic.
On the down side, he was really clear that I’m looking at a 4-5 yr recovery. The original prognosis for me was 3 years when he first saw me in June 2012.
However, my hands are still really jacked up; though farther in the background, my itching is still a constant – especially at night interrupting my sleep several times a night; my knees and ankles though much smoother skin are still elephantising and get cut up. So i have a ways to go.
Why so much longer? Dr. Rapaport said, you know 25 years ago my patients would be fully cleared in 1-2yrs. Rarely would he ever see longer. But he said over the last 5-10 years he has seen a drastic decline in the TSW patients health. He said the patients he sees now are much sicker and are taking like 3-5 years. (We talked about the fact that he has even had, on an almost rare occassion, patients that have taken 7 yrs to heal. But that is quite out of the ordinary.) He doesn’t really have an answer as to why the patients are much sicker except the comment that the steroid prescription drugs are much stronger and potent then what was given in the 1980s. This is probably a major factor contributing to the difference in recovery times.
He encouraged me not to think about how far I have to go, but how far I have come. He always tells me I’m beautiful and that he is proud of me and that nothing unusual is occurring in comparison to his other patients, so I should not worry.
Yes, everyone should see Dr. Rapaport if they have the means to, at least once. As my mom has reiterated to me, and my husband has agreed, “I am glad Dr. Rapaport is able to be there for you through the whole process. I don’t think you could have found another doctor who would have been as specifically knowledgeable as him to stay with you for the long hall…” I have 3 physicians in my local area who are all really supportive of me and believe Dr. Rapaport, but they just don’t have the experience working with any patients like me and it shows. I don’t say that disrespectfully, I am grateful to them for caring for me. But if they gave me the confidence that Dr. Rapaport instills in me to get through the next hurdle, I wouldn’t need to see Dr. Rapaport. So if you are muddling over the thought as to whether the trek would benefit you, my answer to you would be in the form of a question:
“Do you feel confident enough that you are accurately self diagnosed (or inexperienced practitioner diagnosed) with TSA/TSW to endure all of the hurdles you are sprinting in your recovery process? Do you have people around you who are holding your hand through it and encouraging you to endure the torture and to stay off of steroids? Do you feel you have sufficient research available to you that keeps you going in the right direction? Do you have a physician that will help you get on federal disability while if you are bed ridden? Do you have a physician that will go to bat for you if you need to go to the hospital and fight off the steroids?” If you answer NO to any 1 (or more) of these questions, I would recommend you visit Dr. Rapaport. Check out his new blog: http://www.red-skin-syndrome.com/
I will close by saying, the thought of 12-24 more months of this made me cry. But I’ve made it through 41 months, so I’m well passed the half way point – can’t turn back now.
Well its late and I’m rambling.