The past month has been a huge downer for me - of course I continue to flare - there is no relief. My skin was covered head to toe - red, oozing, flaking, open skin. Things were becoming extremely painful - more so than usual. There were multiple sores on my leg that were looking infected. My right leg was continuously a purple/red/blue color. I became more concerned as the days got worse. I called my derm and he agreed to another round of antibiotics. I did well the last time a few months back. So far about 3 days in and the pain is back to its usual amount and the sores are starting to heal. Eating plenty of probiotic rich foods to help with the gut.
So that is good news. However I cannot keep taking antibiotics. It's not healthy. And I really really really need to go back to work. We just got a notice in the mail that our taxes on our house that we rent is going up by a lot - it works out to be an additional $250 per month. I can't raise our tenant's rent that much so we are stuck with the additional expense. So depressing! But that got my mind working again - forcing me to think outside the box. So hubby and I sat down and talked this thing out.
We basically figured that while diet and supplements help support the body, it will not really help me heal faster as I once thought. Here's why - the skin is not making new healthy cells right now. Basically it takes about 1-2 months for a healthy cell to go from the bottom of the dermis to the top layer of skin. If this was just a matter of building new skin, we would have healthy skin in a matter of months, not years. Then we went back to Dr. Rapaport's research - where he states that the capillaries in the skin forget how to vasoconstrict because the cortisone has been vasoconstricting the capillaries for years (or however long cortisone was used). The vessels remain vasodilated, hence the redness and oozing. I remain red and continue to ooze after 7 months. Why is that? Because (according to our theory here) the cells in the capillaries and the skin have had their rNA altered from years of cortisone use. Basically the cells replicate with faulty rNA - so any new cells act like old cells. It takes the body years for it to remember how the skin cells are supposed to act. The shorter one uses cortisone cream, the shorter the healing (for some) because there were less cells altered. But the longer one uses, the more cells that are altered and therefore need to be fixed. The body has an inate ability to fix itself but with so many billions of cells having their memory and structure changed, the harder it is for the body to remember how the skin is supposed to work.
OK - I know that this is a bunch of mumbo jumbo to some and maybe our theory is off a bit, but it makes sense why diet has little impact on the length of recovery. So I started wondering how on earth can we get our skin cells to reboot - to remember sooner how they are supposed to act. Stem cell research came to mind first, but that is a bit too much to research. Then I thought back on some of the alternative medicines I have tried - energy work and whatnot. If the skin cells can start receiving the right signals on how to replicate and change into normal skin cells, then maybe healing can be sped up. So I am seeking out help from a few different people. I am writing them a letter and sending them Dr. Rapaport's paper. I am also seeing someone next week. I will definitely get back on here to report any news. I am not hopeful by any means - this is a long shot. But I cannot sit around doing nothing. I cannot give up trying not only to help myself, but to help thousands suffering from this. 1-2 years is way too long to be out of work for many people. 1-2 years of severe suffering is too much. I cannot go on just waiting for this to get better on its own. Maybe there is no answer. Maybe there is no cure except time. But I cannot give up just yet until I have exhausted all avenues. I am a 30+ year user so I have plenty of time before I am cured. I still have another year, if not longer before healing. But my life cannot be on hold for another year. And with my constant state of flaring with little to no break, I cannot accept another year of this torture.