The Itch Continues
Month 9 arrived and I was waiting for the big rebound and fortunately for me it never arrived. The itch on the other hand has been persistent in some areas. The inner thighs are still pretty annoying especially around 430pm and first thing in the morning. I find that instead of turning red the hives appear instantly if I scratch. Looking at my weight this month, well Im a healthy 61kg. At my lowest I was 57kgs and looking pretty awful and sickly looking. I'II never forget when I was chatting to my hairdresser, back when I chopped my hair short. She thought I'd been having chemo, I looked so skinny and sick looking...Hair on my head is now definately growing back as I can see the flying hair around my face standing up when its pulled back in a pony tail.
LICHENIFICATION is very common word for anyone going through TSW and its one thing that constantly puts the fear into me along with the extra skin also known as elephant skin. Mine seems to be getting better every day but some days I just want to rip it off and hope for the best. Below are some photos to give you an idea of what I'm looking like now and what lichenification can look like. It can come in many forms. I'm finding now the less I bath and itch it is getting better.
My left elbow and some elephant skin still being persistent. Unattractive YES!! I want my normal skin to return so bad...
The above is my inside inner arm. Still some loose elephant skin. Ewwwwwww.
Back of my knees are still swollen and have a little bit of elephant skin to go.
For me, I have found (and I am not sure if I have mentioned this or not) but the less baths I have the better my skin feels and the lines seem to be getting better. I am down to one bath a week now which is a real milestone, considering I was bathing a horrific 4-5 times a day. I have a moisturising shower wash I use and have a quick shower in the morning and I am even washing my own hair too without irritation. My mum was washing my hair in the sink or bath maybe one every ten days as it hurt so bad during the worst times of TSW.
Sleep now, I am getting through the night 'most' nights. On occasions my inner thighs sweat and I itch with hives. In the mornings when I wake, again my inner thighs itch and appear with hives (annoying!!) Nothing is red though and that makes me very happy :)
I hope my photos help with explaining my journey. Its not a great one but enduring and has made me appreciate life in general alot more. I feel for people who are about to start this hellish journey but all I can say is to stay strong and you'll get through and will end up more healthier than you ever have been :) hugs xo
LICHENIFICATION is very common word for anyone going through TSW and its one thing that constantly puts the fear into me along with the extra skin also known as elephant skin. Mine seems to be getting better every day but some days I just want to rip it off and hope for the best. Below are some photos to give you an idea of what I'm looking like now and what lichenification can look like. It can come in many forms. I'm finding now the less I bath and itch it is getting better.
The above picture is my left knee, the result of constant scratching. It is fading but slowly. I have this on my belly, ankles, knees and thighs.
The above is the back of my ankles where I nearly scratched my ankles off! They seemed to be really itchy at the time and I think the last to heal up. Deep lines again.
For me, I have found (and I am not sure if I have mentioned this or not) but the less baths I have the better my skin feels and the lines seem to be getting better. I am down to one bath a week now which is a real milestone, considering I was bathing a horrific 4-5 times a day. I have a moisturising shower wash I use and have a quick shower in the morning and I am even washing my own hair too without irritation. My mum was washing my hair in the sink or bath maybe one every ten days as it hurt so bad during the worst times of TSW.
Sleep now, I am getting through the night 'most' nights. On occasions my inner thighs sweat and I itch with hives. In the mornings when I wake, again my inner thighs itch and appear with hives (annoying!!) Nothing is red though and that makes me very happy :)
I hope my photos help with explaining my journey. Its not a great one but enduring and has made me appreciate life in general alot more. I feel for people who are about to start this hellish journey but all I can say is to stay strong and you'll get through and will end up more healthier than you ever have been :) hugs xo
Hi Alex
ReplyDeleteI think you may be confused or you havent read my blog properly. Im talking about Steroid Creams for eczema or other related rashes. Not injections of steroids for muscle building, thats a whole different ball game. I was given Topical Creams to lather on my body for years.
Cheers
Hi Megan, you are such a brave mummy! It's great you ate getting better. I've just found out about this TSW condition and entering my 3rd month of TSW. I'm a mother of 2 babies (2 year old and 9 month old) it's do hard going through TSW and looking after children. How did you manage with TSW and looking after your children?
ReplyDeleteHi there
DeleteThanks for reading my blog. Yes its a very hard journey. Fortunately I had my mum move in with me to pretty much take over my role as mum. I laid in bed for months and crawled to the bath and back again. Mum cooked, cleaned, school drop off ..she did everything and was completely amazing. Eventually when I got well enough..mum left and I set the alarm in the morning before the kiddies woke and soaked in the bath to get moving..Being alone again actually got me motivated more and I think enhanced my healing. I hope you have support. Its tough going through it especially with children. Please drop me an email if you need support, Im happy to offer ideas. What part of the world are you ? hugs xo
Hi Megan. Yay 10 months for u!! Good that u r feeling better. I'm in New Zealand and yourself? It's such a pain in the ass at the moment cos my husbands brother is living for us for 2 months and omg I will not leave my bedroom at all with my face looking like a ghost! He will prob scream if he sees me lol. It's annoying how I can't just walk around my house when I need to! Good he's usually out at work with my husband on weekdays. I wish I was living with my mum she was superb the last TSW I went thru 4 years ago. But I knew nothing about TSW then so drs put me back on steroids afterwards. Sigh. My mum has agreed to take card of my baby 3 days a week (she works full time but is the boss so can be flexi) and my 2 year old is at daycare full time so at least I can rest for the 3 days a bit then pick up the boys. But bathing them is such a mission! 2 year old is also constantly throwing tantrums which is the last thing I need to deal with! There was 2 nights in a row where I just didn't bathe him sigh. Hubby is fantastic he works long hours and so can't take care of the boys during weekdays but totally takes over during weekends but he's very stressed too dealing with two babies during the weekend where he could be enjoying a break. Parenting itself is hard enough gezzz. I can't wait till all this TSW is over. U know I have developed cataract in my left eye due to prolong steroid use? No medical dr has ever told me this side effect. It just makes me sooooo angry. But I guess it's not totally their responsibility it's mine too. I hope u r doing well with ur family. Will be watching your blog. You r my inspiration xxx
DeleteHello again..Thank you so much :) It makes me feel so good that it helps you. Im in Australia. So not so far apart. I feel for you. My mum was a life saver. There was no way I would have coped. I thought I was going to die some days it was so bad. Interesting you talk about your eyes. My eye sight has gotten very blurry over the months. I read an article on the face book support group that cataracts is something you can get. Im actually off to get my eyes tested again as they havent improved. My doctor told me nothing about effects of steroids except it may thin your skin. What a joke. Please keep in touch. Would be great to hear how you're going. Its great to have someone to vent to about the same issues. Hope today finds you better than yesterday hugs xo :)
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