Saturday, 15 June 2013

Month 8 May 2013

The months are getting better as the days go by. But I'm still enduring the war wounds of TSW. I may look pretty normal walking around but underneath the clothing still lies pain and grief. Skin is still clear which is a bonus but in the back of my mind I'm heading towards month 9 and most people who go through TSW have major flares at month 9. So this is effecting me this month with being anxious every day with the thoughts, is today the day to go back to hell?

So the month of May for milestones. I can manage to bath every second day. Whooohoooo !! Moisturising only once a day and nothing at night. I am still using the same moisturiser but I'm hunting down a more natural mix as I feel I need something richer or oilier.

I still have swelling around the knees and a little around the elbows but are very slowing going. Elephant skin is really annoying me. How long can this go on? I'm hoping it will be gone by the Aussie summer so I can hit the beach again. My hair on my legs have started to go back. This actually kind of made me sad because it was like having a permanent wax. But this is good, it shows everything is heading back to normal. I think a little of my head hair is growing back but it's hard to tell if it's broken hair or new hair.

The biggest high light for this month for me was heading out on the town for two nights. WOW one night was for dinner and a movie. Although my legs ached like mad during the flick but I managed to get through until 11pm but was dying to get to bed. Another night was just dinner with the girls and again I got through until 11pm. The aching legs are a problem as they make it extremely uncomfortable. I can feel the fluid building up if I walk around too much. The extra skin makes me feel a little depressed but like I said they are getting better. The thought always sits there "when will it end" Here are my beautiful knees from month one to month 6. A huge improvements but they are still knobby and puffy. Ouch.

I was just on the facebook support group and one member came across this article which is very interesting. It amazes me that doctors still tell patients that steroid creams are completely safe. I'm proof in the pudding. I had bloods tests back in hospital and my adrenal test came back low functioning. This month I had a full blood screen and adrenals came back normal. I am though very low in iron. Here's the link.

So am I heading into my month 9. Excited and scared at the same time. I am hoping that every day is a healing day and nothing will stop me now. xoxo


  1. I can relate to your anxiety about month 9 coming in some ways. I am about 4 1/2 months in and have read where a lot of people get worse in months 4 and 5. I have continued to get worse - the past week I have a 4 day break and back to flaring. I am not feeling as bad as before but am afraid I will get worse before getting better. I have also seen a lot of people have a nice clearing of the skin around month 6. But have also heard of people going a whole year with no break at all in the flaring. I am terrified I will be one of those that stay in a constant flare. Even during my breaks my skin is still reddish/pinkish and still very dry. I have yet to sweat or develop any oil. Your fears are reasonable. Just remember that some when some warriors flare at months it is usually not as horrible as the first months. Keep your chin up and carry on! You will get through this!!

    1. Thanks Working mum :) Yes it a hard bloody thing to go through..Im going along pretty good at the moment but the hives are a real pain and distressing at times. I hope you get a real break soon. Mine was constant until month 6. So hopefully this will happen to you. Ive also read from other people if youre in constant flare you tend to heal faster. It is the case for me I think. Do you have a blog too? Would love to read about your journey. Ive always had dryish skin and me too havent seen any new oils come in yet. Fingers crossed I will one day xoxo

  2. Hey Megs, seeing your progress gives me hope. You are really healing well. May I know your topical steroid profile?

  3. Hi there oregene:)

    Thanks for looking at my blog.. I just checked out yours and boy it brings back some memories. Those lines you have will go. I still have a few but are fading every day. Once your itching stops you will find they will gradually disappear. I also found once my bathing was cut back that helped too. What do you mean topical steroid profile? Do you mean use? Let me know so I can answer for you. Hope today is finding you better than yesterday. Its a long haul but sitting here looking at my empty cupboards of steroids and clear skin, it is all worth the pain and suffering.. I await your reply

    Megs :)