Months #7,8,9,10

Day #289

Well, it sure has been a while since I updated my blog. This was mostly due to not having access to regular internet, which was a huge stress and was more difficult then it needed to be I am sure. So I dont exactly know where I was the last time I updated so I am going to recall as much as possible.

On the 26th of April we found out that we were pregnant! Wow! was that ever a shock. pregnant testI couldn’t believe it, I still can’t. Still wrapping my head around it because my focus was on just getting through each day and surviving and then all of a sudden I felt like my whole world changed. I didn’t feel ready,ankle 3 I didn’t feel up to it, I didn’t feel like I had anything left to give to grow/raise a child. I still feel a lot of these things. I found it very hard to be excited because all I could feel were worry and stress because I didn’t know what to expect with the TSW. I went the next day to confirm with the doctor because I was still in disbelief. Yup, 6 weeks pregnant.. wow! Just total shock and fear.

Adam and I were living in Murray Bridge, which I loved! That town is a lot more my style as it is small enough you can easily get around but big enough that there is everything you need! I loved our house that we were in as it was all new and easy to clean! And the tub! I continued to do work with my dad but I started to get worse and I just felt run down and exhausted so we agreed that I would end that at the end of June. And as much as I enjoyed that and it at least got me out of the house every week and seeing other people I really found it getting harder and harder to do.ankle2 The fact that there were more and more animals out there like horses and sheep didnt help my skin either. So it was best for me to just take it easy from that. I found myself sleeping a lot during the day…never at night for some reason! ugh, just to keep me as isolated as possible as TSW tends to do.

I managed to go on a trip with my dad and Adam to Canberra. Not sure how I managed/handled that but I did. My cousin lives there and was having an engagement party, so we road tripped. Took about 12 hours to get there so we did it over two days. We just wanted a cheap motel for the night but yikes,flaky we went a bit too cheap… it was horrible!! As I feel like one big open wound and I feel like a majority of my time/worry is trying to keep infection at bay this motel was my nightmare! Everything was dirty and old. I kept my shoes on the whole time until I got into bed…which I kept finding hair that wasn’t mine or adams… ugh!!! Soooo gross, Luckily I brought my own pillow but I had to throw away the pillow case after it was just filthy and I thought if I somehow manage to not get an infection of some kind after spending the night there I will be shocked!

We drove two days and the day we got there we had the engagement party that evening so there wasnt a lot of prep time for me I just tried to sleep and somehow look human. Luckily it was night and the restaurant had very dim lighting! Awesome, lol. The next day we had breakfast with the family and we hit the road again for another 2 day drive back. yeah it was a lot but at the same time it was nice to get out for a bit. When we got home and I walked in the door I felt sad, I felt like this is the place I am sick. It didn’t feel nice to be home because I didnt feel like it was home I felt like this is where I am sick. I dont like that feeling, makes me feel like I dont have a life and that I am just sick.

I managed to make it out of that road trip and hell motel without an infection.. knock on wood! Well on the evening of the 3rd of July Adam surprised me with a dinner date. drysore faceLuckily my skin was somewhat behaving for me so that was nice and also at night with dim lights.. my best friend! Before dinner he said he wanted to go for a ring!walk so we went to this park in Murray Bridge that I love! I wish I had a picture but there are these cool bushes and trees and flowers everywhere and walkways and little vine arches, so cool. So we walked through the park which is down a hill and at the bottom there is a dock where there are usually ducks and fish jumping its quite lovely and quiet and the moon was out and adam got down on one knee and proposed! So cute and I had no idea he was going to do that. Was lovely and of course I said YES! So we walked back from the dock to the car and went to a beautiful restaurant that we went to back in February for Valentines Day. It was a beautiful night and was just lovely to be with him and my skin somewhat cooperating.

Tragically, a dear friend of mine from my childhood’s sister passed away suddenly and at a very young age. My family was friend’s with her family and we all went to church together and had our younger years together at each others houses. It really hit me. Here is this beautiful girl, full of life and really living her life, really getting out there and being a wonderful person and touching so many peoples lives and she is the one who passes away? How does that make any sense? She was so young and just didn’t deserve that and here I am really not living a life. I would never call this living. I call this surviving or existing but not living. And I know I am pregnant and I have a future with this baby but that still hadn’t really sunk it yet and I just thought why is someone taken that is really out there and living it up to the fullest and best way possible and someone who barely gets through everyday isn’t taken instead. Not that I wish to be, although in the beginning I begged for it and death wouldn’t have been the worst thing to happen to me, the worst thing was to keep having to go through the hell of every day. But it just made me really think and wonder and just feel so sad and heartbroken for the people around this young vibrant life being taken away and how life just sure is not fair.

My pregnancy has treated me quite well so far, I had no morning sickness and I had no illness really, which was nice because my skin has still been the focus of most of my topical steroid withdrawal dry facetopical steroid withdrawal red facetime and attention. I felt extra sleepy which TSW already made me feel and I would randomly gag at random things but that was about it. My skin felt and continues to feel a lot dryer since being pregnant but it is also winter here and quite dry and I am often in front of a heater so I am sure that doesnt help my skin feeling dry. I do feel very lucky that my pregnancy has been kind to me so that I can have the energy to deal with my TSW but it sucks, this is not what I imagined being pregnant would be. I guess I had a bit of a fairy tale view of things and that I would be all cute and healthy and have a “glow” well I couldnt be any further from that vision I had. Unfortunately, but it is what it is. We went to Murray Bridge and saw a very nice doctor there, which I was dreading because I hadnt seen a doctor since finding out about TSW on my own back in November and I dont have a very good view of doctors because of all of this so I was not looking forward to it. To my surprise she had heard of TSW! I wasnt expecting that! Downside is that she was pregnant too.. well downside for me being selfish and wanting her as a doctor but great for her! Also, because of my skin and asthma they deamed me high risk and would not deliver my baby at that hospital which was about 2 minutes from my house and I would have to drive to a different town about an hour away… no thanks! So Adam and I decided to move to Adelaide and go to a hospital there which is about 10 minutes from our house so it all worked out.

We moved on July 15th and it was quite a hard process because Adam worked full time during the week and some weekends so a lot wrapswrist dryof the packing and cleaning was up to me. Hard to do when my hands are useless from my painful skin but I just had to do it and get it done, all the water and cleaner and moving really took a toll on my hands. We somehow did it though and moved into our new place and it was not cleaned, full of dust and dog hair… well needless to say my skin did not cope well at all! I was so exhausted from cleaning the other place that I didnt have it in me to clean another and from the dust I had just shredded my arms. It was awful I was in the car and I couldnt stop I just took all the skin off my forearms and wrists and hands, Adam had to quickly get me wraps before I did too much damage and I wrapped up as tight as possible. Lets just say getting those wraps off later was not pleasant with all the dried ooze that I had to peel off. So painful and so itchy we had to hire a cleaning lady that day to come in and do the whole house so that I could stay there. My asthma went crazy I could barely breathe and I was just so worn out from the move and everything so once all was said and done and we could move in and set up and it was clean it was much better. TSW, pregnant and moving.. I do not recommend it!

So between TSW and being pregnant my body is unrecognizable. It makes me sad at times to remember my beautiful problem free skin not so long ago and now my ever growing belly and stretch marks, I’ll never see that body again but when all of this is said and done and I have a baby and my skin is healed I won’t be the same person as I was either. No way you can go through all of this pain and not come out changed, you just hope you change for the better and not get bitter. I try to constantly look at pictures of myself from the beginning because I used to feel stressed and anxiety when I saw them because all the pain and agony would come rushing back and I didn’t want a fear of this when I am through it. I want to get through it all and be stronger, not afraid. I am still in survival mode though so who knows what it will all be like when I am through it.

On July 31st we had our second ultrasound to find out its a GIRL! Wow, what a shock because Adam’s family only seem to have boys so it is very exciting to have a girl in the mix! I1st ultrasound am also a tiny bit less scared to know its a girl because I feel like I know a tiny bit about a girl but if it was a boy I would have no clue what to do! So I feel like it is one thing less to stress about, It makes me sad because I think this pregnancy could be a lot happier and exciting if I wasn’t still going through TSW because I dont have the energy to put towards it and then all I have left over is fear and stress and anxiety about it all, especially having to be anywhere near doctors which I still have a sore spot because of how I was treated throughout my skin issues.

I am currently 22 weeks and 3 days pregnant and I am 9 months and 2.5 weeks TSW. My skin is still very dry but so much better then when I started TSW. My ankles and calves are quite itchy still and rashy, my stomach has recently started to be itchy but I think that is more due to the pregnancy, my chest is still very dry and itchy, my neck is a lot better for the moment, still looks blotchy and red at times but doesnt effect my sleep,clear neck same for my ears they are ll cleared up!..for now. They have been very up and down, not long ago they were dripping with ooze, which is the worst when you are trying to lay down and they are wet and sticky but for right now they are all cleared up. My fingers,hands,wrists,forearms are still the worst and quite painful all the time, I get no relief from them and they are itchy and super dry all the time and havent been clear for a very long time. My fingers crack all the time so I use clear faceband-aids on them now and as for my hands and arms I basically have to keep them wrapped about 90% of the time as its just too painful but then it keeps me from being about to do anything because I am all wrapped up which sucks and still limits my life quite a bit. My face goes through many cycles although they are a bit more spread out, where before I would shower or bath and my face would peel off as soon as water touched it and the skin would all come off and I would look RED! and raw and by the next day my skin would be hard as a rock dry and peeling. Now I have a shower or bath and my face peels off but only slightly and then it feels a bit red and raw but by the next day it will look a bit clear and have some moisture and that can sometimes last 2 days, then it starts to dry out and get flaky and over another 2 days then I start the cycle over again, so hoping it keeps going longer and longer but it is a bit less painful now. I dont feel like my skin is as swollen underneath. My jaw and cheeks used to feel like there was a fluid build up under the skin and swollen glands and sore to touch but that has significantly gone down now where I can touch my face without too much pain. Just wish my face looked good enough to wear makeup again and look the way I used. Not there yet but its on its way…slowly! My hair has started to grow back, like major! I think pregnancy is playing a part in that as well but I have all this thick full hair growing in now, it looks weird because the growing in part is short and I have my long stringy hair from before.. it looks odd but i am so happy to have hair coming back now. That was really hard for me to lose so much hair including my eyebrows! Which are starting to come back in slowly as well! So what mostly keeps me from living fully is my arms and my face but thats better then the full body pain I used to have! And recently I have started sleeping at night which is HUGE! Havent been able to do that for a very long time and its been a good week of night sleeping so I really hope it keeps up!

Day #297

Well, I spoke too soon… Back to not sleeping at all during the night and only getting sleep during the day. Ugh, just makes me feel very unproductive and even more useless. My skin has continued to get worse and worse everyday, I can’t go without my wraps on my arms as they are so itchy that if they are exposed even for a minute I scratch them apart in a matter of seconds! Quite impressive how I can take all the skin off my arms in a very short period of time… I dont even think I have skin on them at the moment and getting the wraps off to change them is quite painful as all the ooze and puss gets dried and stuck to my arms and the wrap. Usually its just in a few places but lately its been my entire forearms, wrists, and hands. dry faceMy face is just soooooo dry, back to looking like a 90 year old and my scalp is very flaky again. I think its safe to say I am flaring up, not like I actually had a break from any of this but now my symptoms are getting worse. Could really use a break like a proper clear skin break sometime soon. I almost dont mind if it means my skin can be better for when I have the baby in about 4 months but I dont want to go through this crap to only be worse when I am having the baby… and the way tsw usually goes that wouldnt be totally unheard of, sadly! All I can really do is go with it an try and cope as best I can like how it was in the beginning, Back to not wanting to leave the house and barely wanting to leave my bed. Not enjoying life very much right now but thankful that I havent had pregnancy sickness to deal with on top of all of this so thats a positive.

I started taking Vitamin D, Magnesium, Vitamin C, and of course my prenatal vitamins. I have a whole pharmacy of vitamins but I stopped taking a lot of them when I found out I was pregnant because I didnt want to mess around with ones I didnt know such as Vitamin A that an cause birth defects which I discovered was in a zinc vitamin I was taking… yikes! Glad I discovered that red boobbefore getting pregnant. So after taking a break from the vitamins (not my prenatal) until I could properly talk to my midwife about what is safe I got the go ahead for those 3. So its been about 2 weeks now and I am wondering if thats what has caused the shift in my skin. arm legHasnt really been a good shift but as we know flares can lead to healing skin so im hoping this is a good change even though my skin looks and feels like crap.  Before this I have been having fairly predictable skin, it would go through 1000 cycles a day but I knew what they were and somewhat how to deal and what to expect and I get quite stressed when my skin starts doing odd things because I just dont know if I can handle a flare that brings me right back to the beginning days, just thinking about the beginning makes me anxious and stressed. I also have had a really bad rash on my chest that is quite red and bumpy, then the first thing I wonder about is infection, which I just cant get right now I dont want to take any medication (other then my ventolin inhaler) while I am pregnant so I just try and do my best. Its really all out of my control so me thinking I have any say is quite funny but it makes me feel better!

Day #300

So I am mostly writingtsw elbow this because I have to keep me hand busy otherwise I will rip them to shreds. I have a very hard time not wearing my wraps but then my skin doesnt shed on red wristmy hands and wrists and I fee like it makes it worse but flaky handthen because its worse I cant go without the wraps… God TSW is hard! There doesnt seem to be anything nice about it and if it can make something even harder then it does! So because I wear my wraps so often I have figured out that they are really good to scratch with. And by good I mean they take off the most amount of skin in the least amount of time… but it feels SOOOO good whentsw inner arms I have an itch.. Yikes. So now they are used as a weapon to the rest of my body but are really great at protecting my hands. Ugh! I can never win! I woke up from a nap and had used my new weapons to take the skin off my inner elbows… not like thats a sore spot or anything, I dont need to constantly move and bend that area…. not impressed with myself to say the least!tse face So in horrific pain from my hands and elbows I jumped in the shower and its so painful! Who knew water could feel like acid but yet you need it for your skin… another TSW wonder. So this evening I am not feeling very nice at all with so many sore spots and really trying to let my hands air out for a while and not be in the wraps as I thin that will help things, that is if I dont scratch all the skin off. To describe the itchy to someone who doesnt quite understand I try to say that its how Edward explains to Bella red sleeveon Twilight that its nearly impossible to bite a person and then to stop drinking their blood. And then he has to do it to Bella and he almost kills the love of tsw wristhis life because he cant stop. Yep, if scratching was life or death for someone I love well, they probably wouldnt make it because its near impossible to stop once I start! Really really really trying! My wrists look like they have a bit of a red sleeve again, that is soo depressing. Feels like I am going backwards!

Lately my favorite pass time is youtube of course. I find myself listening to music from when I was younger and it makes me feel better. Its like when I became a hairdresser they always told us that sometimes if people have had a bad experience such as a divorce they like to do a makeover and they often choose a hairstyle that they had at the best point in their life. So maybe its from when they were 16 and was a popular cheerleader or something. Well I feel that way but about music. When in tragedy I gravitate back to  music from when I was growing up and in highschool, ah the better days! So much easier and so much less stress and so much less to worry about!!! Miss those days, so I listen to music from them and I love it.

Has anyone seen this new idea for dolls? Its dolls that have disabilities or aren’t “normal” and I love it! What a great idea. One huge things I will try and teach my daughter is that everyone is different and some people look different but that it is ok. My TSW would be a lot easier if some grown adults knew this… birth mark barbie

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