Today is a good day to celebrate - not only is it the 4th of July, but it also marks my 20th week of TSW. I cannot believe I made it this far!! I once read on someone's blog how they used to focus on each day and sometimes each hour in the beginning but after a few months life seemed marked by weeks as life was getting easier. While I am excited to have made it 20 weeks, I still take each day as it comes - I still mark life by the days - and some days by the hour. Anything can set me off into an itching frenzy - hot weather, kids acting up, visiting family, and work. We went to visit family last weekend but only made it to 2 houses. We never made it the additional 1.5 hours to my aunt's and grandfather's house as it was too much for me - brought my ice packs but the hotel we normally stayed in was booked and the hotel room we did get did not have a fridge. All I could do was dream of getting home and sitting all day with my ice pack on! Tomorrow I go to work for my one shift a week - can't wear my ice pack while working as my job is too physically demanding and I would look weird walking around with it on. Hoping I am not too itchy and not oozing too bad while at work.
Speaking of work, I dread the phrase I hear too often from my friendly co-workers: "Stop scratching!". They mean well and are polite about it, but it is embarrassing. I am embarrassed that I scratch without noticing - that I have blood under my finger nails at times. I am mortified actually, but those of us with TSW know all too well that we can scratch and not even know we are doing it. It becomes a part of who we are. My close friends know this and they just want to call my attention to it so I stop - I risk too much going to work at this point. I work as a nurse in the Emergency Department. The last time I worked I was out in triage - thankful for that as I do not have to run around as much there compared to taking a patient assignment. However one of the people I was triaging came in and said he thought he had cellulitus again on his leg - he then proceeded to tell me he had cellulitus a few years back on the same leg and it turned out to be flesh eating bacteria causing it! WHAT???? I just about freaked! I of all people do not need flesh eating bacteria on my open skin! I am vigilant about washing my hands and trying so hard not to touch my skin while at work. But it can be very hard! While I probably should not be working yet, I also need to get my life back on track. I need to give hubby a break from him working 60 hours a week - if I work one day a week, then he only has to work 48 hours. He of course prefers I stay home still, but I still feel strongly about pushing myself a little to get back to a normal life. I now have routines - with eating, vitamins, bathing, and even sleeping 6-7 hours each night. I know it is time I pushed myself to get back to work. I will not go back full time until at least my arms and neck clear up completely. But I really need to do something - even if it is only one day a week.
As far as the rest of life goes, I am getting more and more stuff done around the house. Dishes, cooking, shopping, and putting away the laundry are all things I am accomplishing. A far cry from the first few months of doing absolutely nothing except supervising the children! And I am more of the mom I want to be! We are back to their schooling (I home school my 3 kids). I went through all their books and found where we need some catching up. We will be doing school throughout the summer, but then they will be all caught up for the most part. Our son is behind - but he has been from the beginning - a slight developmental delay I think. Overall I am doing more with them - I am still "checked out to lunch" some days when the pain is particularly bad - like yesterday. One of our daughters decided she was mad about having to do extra school work so she poked a hole in her air mattress (the kids are on air mattresses until we get more furniture after we move). I guess if I was paying her more attention, this would not have happened. But she actually came and told me what she did and apologized. Luckily duct tape fixes everything! :)
Anyway, hope everyone is having a good day!!! :)