Month #11,12

Day #361

Well, seeing as I am 4 days away from my 1 year anniversary I thought it is time for an update. Soooo much has happened in these last 2 months I don’t even know where to begin and I hope I don’t miss anything. My skin has been what seems like the same for quite a while, I know it is making improvements but they are sooooooooo slow! I usually have to go through old pictures to see that I am actually getting better. My neck has been a lot stronger and I can usually lay 12189521_10156215510400711_6422615258693850752_ndown without issues or cracking or weeping, which is such a treat!!  As it has been getting warmer here in Australia I have noticed things being a bit different especially in comparison to last year. Last year when I started my skin would be flaming hot to touch but I would be shivering and shaking. Even as it was warming up I was always in my room with the door shut and a heater on with blankets piled high on top of me in 40+ heat.12190814_10156215511225711_7045175780816734378_n Needless to say not many people would hangout with me! Well, this time around it is completely different as I can now sweat. And when I say sweat I sure mean it! Wow, like it is dripping at any sign of warmth. I think my pregnancy could also be the cause of my easily overheating but who knows what symptom is from what. On the plus side My sweat does not have a foul smell… well anymore then normal sweat smells. So I can safely say that this is in fact actual sweat. I do get some of that TSW gross skin smell but only very faint and in the crease of my elbows and only sometimes and you really have to get in there and smell to even notice. That is a huge improvement from 12118676_10156215511040711_7068215815955746963_nthis time last year where I was a stinky mess no matter what I did and I couldnt even sweat, so i was literally just me being smelly. I will never ever miss that smell and I hope it never returns!! 11221764_10156215511145711_3559691357594796630_nMy hands and arms are still very painful at most times and are taking a very long time to heal. I did imagine this might be the case as my fingers and wrists were where I used my topical steroids so it would make sense that those areas might take the longest to heal. It does still make living life normally hard as I am wrapped in bandages a lot of the time and it prevents me from being able to do certain things. My face is also quite flaky at times. I can have a shower and when the water hits my skin it all peels away and leaves fresh new skin but then not even a day later the dry flaking will come back so it still is tough and still goes through many cycles a day. My scalp is still quite flaky but it doesnt annoy me quite as much as it used to so it must be getting better. To be honest I try not to pay too much attention to it if I can I just put my hair back and try to ignore it. my ankles are still very very dry and itchy at times but you can see the skin is slowly getting tougher there. my calves still get quite itchy. Usually it is at night when my legs are together after a while I need to scratch the crap out of them and then they are good. They dont bleed as quickly though so you can see that the skin is getting tougher there too. My thighs only get a bit itchy now and then but doesnt bother me. My stomach is obviously ever growing with this baby and i think the stretching really makes it itchy sometimes so I have stretch marks and then scratch marks and a bit of a rash on my belly. my chest gets quite itchy but usually can bounce back quickly after an itch attack. So over all its nice to have tougher skin that can handle the itching a bit better. Oozing doesnt even really happen anymore at this point which will hopefully stay like that! the itching usually comes from how dry and flaky my skin is. Most of my body is still a bit red and rashy in patches but nothing like it was in the beginning! So I dont even really take notice or care most of the time. I just wish my hands and arms and face would heal. I think that would greatly improve my actually living life, especially with a baby on the way I am going to need my hands a lot I imagine!

A big event for my this month was that I got married! This time last year when I started going through all of this crap I thought for sure he was going to leave. 12079539_10156215510335711_608388779805155586_n10689739_10156215510190711_8962953806773167694_nNot because he is not a wonderful man or anything but come on! This is tough to deal with and it is tough for the people we are around to deal with too. My own family turned their back on me in the beginning so how was I to expect this man to stay with me!? But he did and he was there for me as best he could be through all of it and he has caught many MANY of my tears over this past year. I cant believe that not only did he stay with me through this hell of a year but he proposed to me and married me too. I can honestly say that this year has been me at my worst. If this last year isnt a reflection of me letting myself go then I dont know what would be! I dont know how my looks could have gotten any worse, or the fact that I havent been able to do much on the side of being productive. He has had to take care of me, take care of our house (cleaning) sometimes cooking, and support me financially and he has done all of that this whole year and in the end married me. I cant believe it!! wedding day afterSo I hope on the bright side at least I can only get better looking from here as I heal, I sure dont see how it could ever get any worse then it was!! And he stuck with me through that so I feel good about us as a couple. We are so much stronger having gone through all of this and I know that he will stick by me through anything if he will be there for me through TSW. So as you can imagine for about 2 months before the wedding I was stressing about my skin! Not knowing from one day to the next what it will be doing and no way to really prepare for it either. I remember the good ol days where if I just got good sleep and washed my face the night before I could guarantee my skin would be flawless.  Not so simple now! And not to mention the day before I had so many last minute things to do and my skin was a mess!!! Red, rashy, itchy! wedding day cake cutwedding day the kiss2it sucked I thought well this is what ill be like when i get married… that sucks! But that night I soaked in the bath and gently tried to rub my skin a bit to get it not so dry and flaky and I made sure I got as much sleep as I could and the next day my skin was so calm it was amazing and I was soooooo happy!!! I used Nude by Nature foundation to just lightly powder on my cheeks in case they got a bit red but I really didnt use much at all, especially as I hadnt worn foundation in almost a year! I did do my eye makeup as I would normally do before TSW minus the fake eyelashes because I knew I would cry a lot when I said my vows so I decided to leave them off. My skin behaved so well and I was so pleased and we then had a photo shoot right after so we went and did that and I was exhausted. More tired then I have been in a very long time as usually I can just sleep when im tired, day or night so after we went out for dinner on our way to our hotel room my skin started to flare. But I was so thankful it kept nice for the day and the pictures thats all I could really ask for and I was happy! So I was shredding my hands and arms in the car as we were driving and I wrapped quickly in toilet paper as to not bleed on my white dress! When we got to the hotel I had to shower right away and wrap right after that so the romance was really at  minimum which was sad because I had to tend to my skin before anything else but of course my new husband was understanding. The next week after was tough. My skin definitely flared up. Mostly just quite swollen and red and a bit raw, itchy and when I scratched my skin felt tough but at the same time would just peel apart. So I layed low and tried to get lots of sleep and just recover and I did after 1 week. Not bad for a flare! I think stress and exhaustion brought it on and when I finally relaxed my skin felt it could catch up. I dont think makeup would have helped much either! That was on October 21st and it is now October 30th and my skin is back to how it was before the wedding. So still have a lot of issues but not in a flaring up state anymore.

My pregnancy is still going quite well all things considered. I am worried that after only on day of my wedding I flared up for a week im wondering what labor will do to my skin and how long I will have to recover from that. Not even just recover from birth but my skin! And I wont have the luxury of just resting and sleeping to recover so I am definitely nervous about that. The doctors and midwives still always seemed shocked when they find out that me and the baby are healthy. Because they look at me they keep ordering new blood work and scans and everything comes back clean as a whistle and they just cant understand how I look the way I do and could possibly be healthy!  At my last doctors visit she said to me “you know your skin is really dry” I’m thinking… no way! really?? So glad I have a doctor to tell me that… Yeah I only live it day in and day out but thanks for telling me. But I cant even be bothered to get into the whole thing with them as they push the steroids on me.

So much has happened in such a short period of time, getting married, being a wife now! Soon I will be a mother somehow caring for a baby and hopefully dealing with this less and less by then (december) Having gone through a year of absolute agony and hell. The worst year of my life but in some ways the greatest. I have learned that I can literally handle anything. I have learned to be so grateful for everything. I will never ever complain about stupid crap ever again. I have learned who is truly there for me and who is not. I have learned to trust myself and my ability to know what is right for me and my body and my baby and to not just take a doctors word as gold and to question everything. I have learned to let go of what I thought beauty was and how I felt about myself and to just be a more natural version of myself which I am thankful for seeing as I am having a daughter. I want to teach her that beauty is not about how you look physically and it is not about how others look. You can go through TSW and still be beautiful! I am thankful I have learned to be less worried about physical appearance and more focused on living life and the moments you get with people. Especially as with TSW I have such little energy that I could either spend on getting ready or I could spend it the way I am and with people I love!

I know I still have a journey ahead of me but I am miles further then I was this time last year! I am a year ahead and that is a year I never have to live through again! My baby will be better off that I dont use those drugs and I will never use them on her either. Only benefits from going through this whole process. The hardest journey ever but there have also been many rewards as well.


Follow my journey as I heal from Topical Steroids

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