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!

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 Very
Read more

Happy Friday! New Post layout

Image
Happy Friday, here is the new post for the prior week, not to worry if something comes up mid week I'll post as usual- This has been a week of ups and downs, but ending on an "up", feeling better after having a rough Tuesday and Wednesday, lots of inner leg pain, due to running around to 2 appts, leg skin just did not appreciate all of the movement, so I took it very easy Weds and Thurs and it paid off. Today is Friday and I am back to a 4-5 in pain which is better that the 8.5 that I had earlier in the week. I think the turnaround has to do with a few things: The Chinese Herbal Tea I am taking No Tylenol, just ibuprofen (body had to get used to that)  Combination of Acitretin and Consentyx Mediterranean Diet Here is last week's log: Date Pain Threshold (1-10) Pain Notes   Diet Notes Dr Appts or Medicine Notes Other Notes 1/31/2020 Fri 4 Costentyx Shot # 3 2/1/2020 Sat 4 2/2/2020 Sun 5 2/3/2
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

And So It Begins . . . .

Image
Noticed a rash on the top of my head and beginning to move to my face, attributed this to allergic reaction to Halloween Makeup, made appt to see Dr Cheng raised bumps on head and cheeks start to appear and are quite itchy * just a note of caution, while I strive to maintain decorum, there may be images and language that is of adult nature *
Read more

New Week New Hopes!

Image
I start my week on Fridays as that is the day I have to inject myself with Cosentyx. Last evening was my third weekly dose, so I am hopeful that this week, my PRP symptoms continue to decrease. The self injections are getting easier and easier, but still a bit freaky. My nails are continuing to thicken, hands and feet skin becoming waxy. As mentioned in a previous post I wear booties on feet under socks and nitrile gloves on hands in order to prevent cracking and bleeding (ugh). I have a huge crack on my left foot, big toe crease above the ball of my foot and need to apply antibiotic ointment daily~ This weekend is a very dear friend's 50th birthday celebration in Las Vegas, which I was unable to attend due to my "lovely" temporary overbearing "partner" named PRP. I wish my friend that happiest of milestone birthdays!! I also wish that this PRP goes into remission sooner than later so I can be part of celebrations and everyday life. Anyway, onto week three
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

Hunka hunka burning!!!! Woweeeeee!!!!

Image
Wow there was alot of burning happening last night and not the kind I like! Backs of legs were white hot on fire! Changed 3x to get into something comfortable, clothing just irritated the skin, so I settle for a super large pair of sweat shorts, phew! Diagram shows concentration of pain and scaling and itchiness. Other than this I feel fine, but I can't imagine getting up, showering, applying ointment, getting dressed, driving to the ferry, taking the ferry ride, walking to the office, working for 8 hours the repeat on the way back and that would not even account for applying ointments mid day etc. Too much to even think about especially waking up with burning legs! WHEW!!!! I await stabilization! Aside from the backs of legs the front and back elbows are pretty raw and burning today so I'll have to manage that- Face woke up puffy and scaly with lots of eye goop. Had to wrap arms and calves to make sure ointment stays on skin, back of legs unable to be wrapped as gravity pu
Read more

Christmas is coming, my 53rd Bday is around the corner and I'm dealing with this horse shit!!!!!!

Image
**I was placed on a LOA as of December 2nd** Lots of shedding, arms are dry and inside elbows and inside and outside armpit area very sensitive, small amount of bleeding in those areas is common, sill very itchy and when flexing arm those areas are super “burny” feeling Shedding is not limited to arms. Legs are shedding as well, must wear compression pants to keep skin in Ankles and feet still swollen, have to wear compression socks in order to keep swelling down, I also have to elevate ankles several times a day to reduce swelling * just a note of caution, while I strive to maintain decorum, there may be images and language that is of adult nature *
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