Month 10 July 2013

Cruising along in month 10, I'm finding myself getting better every day. Energy levels are still up and down but looking after two young children can do that anyway. I'm still feeling self-conscious about my hair, so my new g-star cap is my best friend lately. Although friends say my hair looks good, I know its terribly thin and lifeless looking. BUT it is growing back. I haven't really go much to report this month but things for are going along well. Some mornings I still struggle to get up with the swollen legs and semi tight skin. The itch just won't go away between the legs. Doesn't sound like much but 10 months of it is nearly sending me to the looney tune bin. My skin doesn't feel real either. To touch feels almost numb and when a squeeze it, it looks like it has no elasticity. I have been told it should go back to normal. Fingers crossed big time.

I just love the above poster someone posted on facebook. It makes so much sense and makes me so angry because I was one of those customers. I'm at the point now I don't take anything. Not even antihistamine. This is a first in many many years. Feeling pretty good about it too. I know medications help alot of people but when you have gone through what I've been through, you stop and think what does this actually do to you? Like really do to you.

Yeap!! Above is about a few weeks worth of steroid creams I was using on my whole body. Now if I was as savvy as I am now. What the hell was I thinking, why didn't I clue into it. Its a drug, of coarse my body was going to become addicted to it. The less it worked the higher the strength the doctor would give me. At one point when my face started to react, I was using Elidel and Advantan at the same time as directed by the doctor and to top it off a high strength dose of steroid tablets. I remember one day during that, my heart was pounding so fast and hard , I thought this is it "heart attack". I rang the doctor and he said "oh just lower the dose and you'll be fine!"

And here's the trusty hat..love it xoxox

Month 9 June 2013

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.

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. 

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

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.

http://www.medpagetoday.com/Dermatology/Steroids/777

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

Month 7 April 2013

Here we go into another month. My daily routine has changed again and I  guess this is another plus. I can actually get up and not have to jump into the bath straight away. In fact I can do a quick change of clothes and organise the kiddies then head off to school for drop off. Head back home and tidy up the house and jump in the bath around 1030..Amazing!!!

Skin in the morning skin feels smooth but kind of tight. I guess in need of moisturising. Nothing I've ever felt before, it's very strange. I think I may still have some swelling as my legs tend to still ache in the afternoon if I'm on my feet too much. My frustration this month is hives still. If I itch I get hives and they get real itchy. At the moment the itch is mainly on the inner thighs and sometimes on the creases of my elbows. Nothing a little Aloe Vera Gel won't fix though.

The above pictures are of my inner thighs and their progress. I certainly don't miss those purple legs. The pain that came with it, I just can't describe. Thank god that's over. Oh and this month I tried to have a shower. EPIC FAIL!  It felt strange but good at the same time. But certainly didn't get me through a whole day as comfortable as a morning bath did. And my night time cream routine is no longer except on this day I needed it before bed. So the journey continues with a daily morning bath. Seven months of bathing is beginning to feel like a never ending nightmare but I will slog on as I'm steroid free and seeing skin on myself that I haven't seen in a very long time :)

Me at seven months looking pretty normal with a nice skin colour..I'm hoping by the summer December 2013 I will be completely healed all going well. Fingers crossed xoxo 

Month 6 March 2013

MASSIVE improvements for this month. Im getting excited. Energy levels are up, skin is clear to the point it looks fairly normal. The feel of my skin though is very waxy and papery. I bath once only as soon as I get up and cream up in the late evening before bed. Sweating is gone. Nerve pain is gone. I woke up one morning and it was gone. TSW is weird that way. One day you're suffering, the next you're not. My skin still feels sensitive against clothes and sheets still though. A feeling I cant explain and only TSW suffers would understand. Sleep patterns are still over the place. Some nights are good, some are not. I still have the itch attack in the middle of the night. But its not for hours on end like it used to be. A quick scratch then back to sleep. And this is not every night, just some.

As you can see with my photos, a huge difference. No redness, skin is pretty white. I'm not completely healed but again on my way. I still have elephant skin on the back of the knees and back area but it's improving. My pain in the bum thing this month is HIVES! My skin seems to be ultra sensitive. On most of the forums, people seem to think having hives means you're on your way out. So I'm hoping I'm nearly there. 

I can get out and about for most of the day now and not have to rush home and have a bath too. Loving this and making the most of it. Making up for lost time. Can't wait till I can go out at night time. It will be like turning 18 again lol. 

Oh and I finally went and had the hair cut off too. I've had long hair for a very long time and it was pretty hard to be forced to have it cut off. But the end result made me feel so good. It looked thicker and healthier. So those who are loosing your hair. Don't worry it will grow back and think of it as a NEW BEGINNING!! 

Pretty happy with the way it looks. And as you can see I have some deep lines on my forehead, eye area and chin (if that comes up). That's from scratching and it's called lichenification. It will go back to normal with time. So try not to scratch so hard like I did and it shouldn't happen. Use an ice packs to ease the itch xoxo

Month 5 February 2013

Ok this month, I seemed to be getting better in leaps and bounds. My gorgeous mum decided to go home as I was functioning fairly well and I think I had a good routine in the morning to juggle the kids and me needs too.  I have managed to cut my baths back to one in the morning but still having to lather cream in the afternoon and just before bed. BUT it is progress heading into the right direction.

I have lost a total of 11 kgs and feeling it. My clothes no longer fit me and I look extremely skinny and frail. My appetite on the other hand is enormous! I don't know where it's going but it's certainly not hanging around on my hips! My hair is the saddest thing with TSW..I have lost I think about 2 3rds of my hair and I basically look like a cancer patient. I just havent got it in me to go to the hair dressers just yet. My scalp is full of scratches and cuts so I think I'II wait a little longer. I'm still feeling very self aware about the way I look, although I don't look as bad as I did from months 1-4..

In the above photo you can see my scalp as my hair has thinned alot. I normally just tie it up and hide it under a hat. Skin in general is clearing up though. I still have painful nerve pain on my torso area and the itch in the evening is very annoying...

Month 4 January 2013

January found me a little better. I cant remember what day it was but I found myself getting dressed and actually heading outside and doing things. A few hours out is as much as I would last until my body would crave another bath in the afternoon. The middle of January, I packed my bags and the kiddies and I headed off to my parents place by the beach.

Change of pace I think really helped me with the much needed help from my parents. My nights still consisted of 1am wake ups and scratching for hours on end. Its a very distressing time and no one really could understand the whole impact on my life. Still desperate for sleep I would take 25 mg of Phenergan plus pain relief to help the itch and sleep. Some nights it would help a little but others NOTHING! So a trip to the doctors was needed in desperate need of help for some sleep before Id go crazy. He gave me a natural form of Melatonin which the body produces but doesnt produce enough as a woman after 40.. I tried it that night but woke at 3 am with a massive head ache. A side effect of the tablets, so they went in the bin. Yeap, what else could I do but again suck it up and wait for my body to naturally heal itself..

Things Im hating this month is the feel of the sheets on my skin. Feels like sandpaper. The constant pain in my torso still, only seems to be getting worse. I can't bend my knees properly from the swelling. My knees are looking worse very day, much like a very old woman...see below...

This seems to be a very common thing with TSW. And yes I have been told it will go but only with time again. My face seems to be getting better but Im still lathering moisturiser a few times a day to keep it at bay. Swollen ankles are bad bad bad and throbbing with pain almost 24 hours a day. Is this all worth it? With the slow improvements I see every day I say absolutely YES! Im so glad I ignored everyone, as Im on my way to a steroid free body.