Day # 533
It is nearing my 18 month anniversary. This is a bit of a milestone for me as I thought for sure I would be healed by now! Sadly I am not 😦 I am better, yes, but I still have quite a ways to go yet before I would say I am healed. My biggest issues are STILL my scalp, face, neck, chest, arms, wrists, and hands. I would say that recently my fingers have improved quite a bit. Thank God as taking care of a baby with painful cut up fingers was a nightmare. It is still difficult as my hands and arms are quite painful but I see improvements and can accomplish more things.
We just moved across the country about a month ago and up and moved once again! This will make it move #4 while going through TSW. We drove in a very unreliable car for 26 hours and we did it in 2 days. Stayed at a sort of alright motel for the night. I found it to be ok until I used one of their towels to dry off after a shower and found little white hairs all over me…. ugh!!!! Makes my skin crawl again even thinking about it… back in the shower I jumped immediately! Used my good ol trusty toilet paper to dry off after that.. anyways, we made it here somehow and are once again starting life in a new place. I find the weather here (Western Australia) to be a lot more humid than South Australia where we were living. The things we gave up were a dryer heat, dishwasher, and proper airconditioning! I miss those things but we gained being able to see my dad more before he moves to a different country at the end of the year. My skin went through a flare after arriving here where I was red as a tomato again and my skin would be burning hot but I would be freezing. Lots of itching which still happens a lot especially with the humid head and a not so good air conditioner that is more of a fan really. Luckily my skin has calmed itself down a bit to where it has issues but is more predictable.
My daughter is almost 4 months old now and I love her soooo much! As painful as it is to hold her sometimes and be drooled on and puked on and to constantly be using my hands now I just cant get enough of her! I am very fortunate to not have to work as my husband got a job here right away. I do however find myself wanting to get out of the house. I think it is because I was bedridden-housebound for the last almost 18 months that now I just want to go and be anywhere but inside. Problem is that I find I have more energy now and i want to do all these things but my skin is still healing so I am often still stopped when I go and try and do normal things which I forget is still over doing it for my skin. I want so badly to have a job and work and contribute and not be such a leach like I have been and maybe even meet other human beings. I applied for a few and have made it through and interview but then again I am shown that I am not physically able to handle it. First of all I have a daughter which would restrict my working abilities quite a bit but even if I could get that worked out I would not be reliable still. My skin can have decent days but some days are quite bad and my skin still looks very unhealthy. I could tell in the interview that the manager was looking at my arms as they are red and blotchy. she didnt say anything but I can only imagine that she is wondering if i am ill. I decided not to mention the red elephant in the room (me!) and just focus on the professional side of things but i could tell that she sure did notice. I am glad that I went through the process and know that I can still get a job but sadly I am still not in a place where I could reliably hold down a job.
Even just going for a simple walk I am reminded how fragile my skin is that there are a lot of flies around where we live and I almost had a total break down when we only went around the block. There is nothing worse to me than flies landing on my skin. Nerves so crazy, everything is so sensitive and feeling sweat and lotion and flies is such a horrible combination. So again it seems I am housebound but now with energy I dont get to use My poor husband is stuck working all day and then coming home to me not too happy because I am cooped up in these four walls all the time. I still wake up a lot at night with itch attacks and shredding my arms but they can handle a lot of attacking so thats good. I only end up with minor wounds. My scalp is quite annoying as it is very dry and flaky still, I usually have to wear it up now so it doesnt look like I have just been snowed on..
My face goes through ups and downs still but mostly very red blotchy and dry and flaky. I now have noticed a red band across the top of my nose in between my eyes that is always there from being really dried out. My ankles look much better though and dont give me any problems anymore and my calves are not an issue. the inside of my thighs are sometimes itchy but nothing too annoying. Just cant wait to get my face and arms back really. I have been able to wear makeup a bit more which has been nice but sometimes just enhances my flakiness so in the end just looks worse.
Getting there… slowly but surely. Can’t wait until the day I can finally complete my writing on here and say I AM HEALED!!!! Today is not that day but hopefully soon!