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
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
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
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!
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'
This will be the first week that I do not have a weekly Costenyx shot. I am now on Monthly shots, so my next shot is in 4 weeks- Today is Thursday and my inner leg pain is pretty bad I rate it an 8 out of 10, but I'm pressing on, taking it easy, meditating and saying prayers. I'm also on a higher dosage of Chinese herbs to help the skin retail more moisture, just started today so that needs a few days to kick in. Inner legs feel like the skin is 2 sizes too small, ugh- Ups Had a great Dermo appt with Dr. Bui, she is seeing small Isles of Sparing (small areas of my normal skin color) on my chest, back, legs, and face (1). I also had a few growths on my face (due to PRP) frozen off, I am very happy about that My Acupuncture Dr, Dr. David, at my appointment this week noticed my face is more of a normal color and he added additional herbs for moisture capture to the herbs I am already taking I'm wearing sweats, vs. the skirts I was originally wearing since my legs we
Heard back from the Acupuncture Herbalist and I have an appt on Feb 4!!! Inner legs still tender, but I think the Cosentyx and reduced dose of acitretin are doing their thing as I am no longer suffering from the white hot pain the way I was, I still have major discomfort but nothing like before, skin super tight around the knees, thighs and ankles. Laying low as to not agitate legs Starting a low inflammation diet on Monday, to try to improve legs Also last night one of my plastic booties slipped half way off, bot oh boy, that ankle and 1/2 foot were so dry and peeling! Pics under pain diagram, not for the faint of heart This is how my arms look after sleeping, as you can see the wrap (stretch tite) has shrunk down past elbow and exposed skin which causes dryness (ointment rubbed off on long sleeve T) and discomfort As mentioned above here is a visual of the tightness on the knees Inner thigh inflammation and tenderness The wrap prevents the sk
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
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
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