Well!, we know what the fuck is going on!


Got the PRP diagnosis, started digging into all research, peeling starting  and getting bad, prescribed the TUB of Triamcinolone Acetonide .1% to try to curb the itchiness


Started digging into all sorts of research and was able to find a PRP Support Group on Facebook that has been a lifesaver!

Helpful Links that I discovered:


PRP Survival Guide

PRP Survival Guide [Eyes]

* just a note of caution, while I strive to maintain decorum, there may be images and language that is of adult nature *
Location: Oakland, CA 94619, USA

Comments

Post a Comment

Most Popular Posts!

Brutal Christmas week, super tough to stay smiling!

Image
**LOA Extended to January 31** This week has been BRUTAL. Lots of inner leg and in inner arm pain, waking up multiple time a night to apply ointment, not alot of sleep, lots of anxiety and trying to keep sane and clean and safe. Don’t need  infections or cracks on hand and feet. Foot soles and palms of hands have completely peeled which was an experience. Now they are constantly lightly peeling but I have to keep them moist with vaseline/Aquaphor, otherwise they will peel and crack, and that is not going to be uncomfortable if that happens. Trying to keep upper thighs wrapped as well but as I shed, that turns into a sandpaper-like feeling. * just a note of caution, while I strive to maintain decorum, there may be images and language that is of adult nature *
Read more

On the road to remission.......I think!

Image
 I could not be more happy with my progress-  I still have zero pain I am itchy but it is manageable My skin has cleared substantially I moved from the Bay Area to the Desert (Palm Springs, Magic Desert air) my nails on my hands and feet are normalizing my palms and soles of my feet are normal I still have small lesions, but nothing like Dec, Jan and Feb MUCH CLEARING Eyes are not as dry finger prints are back!!! I am hoping this is more permanent, however I know this is cyclical, so I am ready just in case!
Read more

Back to Work!!!

Image
Well, this was my first week back at work, remotely, but still work, lots of Zoom meetings (for those that don't know Zoom is video conferencing) and collaboration. It was challenging resetting to get ready in the AM, as getting ready with this condition is ALOT maintenance, showering, ointment application, dressing, making sure my face, head and neck don't have flakes of skin, ears too, it takes a while and I am still quite red! So I nailed that process by Thursday by waking by 6 and ready to work by 9am and all of this with feeding Magoo and spending time with him. On Wednesday, I was tired and my eyes were red and I was itchy (I'll take the itch instead of the awful pain that I was in), and for a nano second, I doubted my decision to return to work, but I prayed and kept on going and charged through the week. Guess what?!?!? I made it!!! I'm so happy that I am working again and had to set myself up in my spare bedroom as an office as Magoo likes to bark at the UPS, A...
Read more

No Flare Ups This past week!!!!

Image
For the first time since the week of January 5th, I suffered NO FLARE UPS!!!! This has to do with a few things drug therapy, acupuncture, Chinese herbal formula, diet and prayer (by me and others). My Dermatologist is seeing signs of clearing as is my acupuncture Dr.! So things are looking up, not out of the woods yet as walking is sometimes still a bit painful, BUT, Im walking!!!! UPS: Legs are still tender but less tender than they were hence my ability to walk around the house and grounds, YAY! Making very good nutritious food daily following Mediterranean Diet Continuing to see results from Chinese herbs formulated for me and my condition (thanks Dr. David) Continuing to see results from weekly acupuncture Continuing to see results from my drug regimen, I am now off Acitretin, so we will see how that goes Able to Shower EVERYDAY NOW!!!!! A good friend turned me on to Noni Lotion, which helps with itching (from Hawaii)!! DOWNS: Lots of shedding, hopefully this will ...
Read more

June 30 Update

Image
I just wanted to provide an update- I am doing GREAT My skin has calmed down, still very itchy, but ZERO Pain!!!! Thanks to everyone who sent me good energy and prayed for me, it is working! I am still working remotely, but I am WORKING, and it feels so good!!! I am still dealing with the PRP, but, the effects are less than what they were, still looking pretty ragged, but things are getting better. God will heal me on his time frame and I have accepted that. Again, thanks for all of the good healing energy and prayers, they are working!!!! Feeling good and have looked better, but I am happy to be out of pain and working again!!!!!!!!!!!!!
Read more

TOUGH WEEK

Image
March 30 Wow, you know the saying, "All good things must come to an end", well it's true, kind of - I was having a good 2 week run, then BAM, a flare happened on my legs that has me limping around the house. BUT, this too shall pass, day by day, I'll look forward to getting better and that will happen- What is a flare?, it is exactly what is sounds like. The skin gets inflamed, red, tender to the touch and just plain uncomfortable. My flare occurred in my problem areas: inner legs, pictures below OUCH- Anyway, I'll ride this out and make sure to have patience and move forward without looking back, but only for lessons learned. Oh and to top it off I'm dealing with a STYE as well!!!! hahahahahahahaha, it's all good though, I can have a ton load of things thrown at me and still manage to get through it with Faith and Optimism! The Chinese Herbs causing some issues with my GI tract so awaiting another batch that does not cause waterworks for #2...
Read more

Another Good Week

Image
March 22 This week was a good one as well. As i am feeling better the Corona Virus has gotten crazy! What timing! The Bay Area is Sheltering in Place, this means stay home unless you have reason to go to out. The only businesses that are open are ones that are required such as grocery stores, gas stations, pharmacies and hardware stores and restaurants are allowed takeout only. Small business is being hit hard if they are outside of those aforementioned businesses. All of my appointments have been rescheduled: No Acupuncture, Chinese herbs being mailed to me and my dermatologist appt is going to be over the phone- Like I mentioned above, I am feeling less pain, meaning I can easily get around which is awesome, however, I still have PRP, just because I am feeling better does not mean the disease is going away, so I am remaining vigilant to this PRP! My short term disability ran out, so I had to get converted to Long Term Disability and that was recently approved which I am very than...
Read more

Better and Better!

Image
March 13 First off, thanks for all the TEXTS, CARDS, PHONE CALLS and SOCIAL MEDIA LOVE!!! As I mentioned on my off cycle post, things are looking up, less pain is always welcome!! I am now battling shedding like crazy which is "fine dried skin flakes" as this does not hurt but it's itchy! I am approaching a stage in this disease which is stabilization and I have been looking forward to this for months!!! I am getting acupuncture 2x per week taking my Chinese herbs daily and seeing my dermatologist as well. Work has been so understanding, but i do look forward to going back soon! I am getting back to a normal color. I still have to wear gloves and wrap my feet as these extremities are prone to super dryness and cracking so I have to be aware of those potential effects and manage daily- Legs are going through a metamorphosis as the skin is leathery and inner leg skin is healing nicely with manageable pain there- Torso is continuing to shed very fine (almost dust l...
Read more

Off Schedule Post!

Image
March 5 Hey All So much progress that I had to post. Things are getting better, I am walking again with sweats on, [meaning no more skirts to protect my leg skin]. I was able to get to the market a couple of times this week!! Fatigue is starting to dwindle and I am getting back to normal energy levels [thank GOD]. Still have a ways to go to normalcy, BUT this is HUGE.  Eyebrows are growing back same with eyelashes!!! I am looking so forward to remission that I could spit! I'm well on the way!! Torso shedding like crazy Hands and feet still wrapped daily, but Im told those are the last to heal Leg pain at a Minimum Continuing clean eating, no processed foods at all, 100% fresh, 100% Mediterranean, homemade everything, even pasta! Skin still pink, but that is better than RED OR PURPLE!!!! Continue the prayers and good wishes!! Date Pain Threshold (1-10) Pain Notes   Diet Notes Dr Appts or Medicine Notes Other Notes 2/28/2020 Fri 4 ...
Read more