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. 

Month 3 December 2012

This month would have to be the worst. So red, sore and swollen. Barely any sleep, in fact the thought of going to bed was almost frightening to think what lies ahead of the night. At times I thought I was going to die of the pain but somewhere inside made me move on. The daunting thought of being like this for months really depressed me and once again I thought Id go back to the doctor who put me here in the first place and see if there was anything he could do.
I remember being in the office in tears because he just wouldn't listen and believe me about what was going with my body. He kept saying to me you have severe eczema and you need to go to hospital to be treated with steroids. After an hour of trying to convince him, I gave up and said I would go to hospital but "no steroids" and I would try the wrapping method to cool my burning red hot skin and have pain relief. He agreed with my proposal. I was admitted that afternoon and they began wrapping me that night.
During my time there (two weeks), I was drowned with a plain moisturiser  and wrapped with chux. OMG it made it worse. My pain was so bad I was giving Endone. A morphine based drug...happy days then :) They tried a different materials several times but everything made it worse. The only thing that helped me while I was in hospital was the rest.

The above photo was me soaking in the hospital bath..This was happening three-four times a day. A complete and utter bore. During my stay my Dermo came to visit  several times and kept trying to convince me that I needed the steroids. Each time I refused. From my constant refusal he decided to send in a Psychiatrist. Yes you read right, he thought I had mental issues because I said no to his harsh chemical treatment. I saw this doctor twice and by the end of the two sessions I had the Psychiatrist googling Topical Steroid Withdrawal and I think he was nearly convinced. At least he had an open mind unlike my doctor. In the second week my glands became so large they were a real concern. I agreed to a biopsy of my groin gland. It was bigger than a golf ball. Of coarse it came back all normal. It is just my body working so hard to become normal after such a long time of steroid use. So if your glands are abnormally large, do kept an eye on them but generally with TSW its pretty normal for them to be large. For me, mine were throbbing all the time and made it difficult to move my legs up and down as they were so large.

Below is a picture of my swollen and wrinkled hand. I look like a very old woman. They were extremely sore and it was very hard to bend my fingers. But I troopered in the hope that I would be steroid free and healthy again very soon.

My aim now was just to get home before christmas and spend time with the family. Just before I was leaving my Dermo doctor came to vsit with a jar of cream. He said I have a different cream for you and theres no steroids in it. I was kind of excited and took it thinking I was going to use it. My instinct told me to google the cream. Oh WOW, its a immuno-suppressant cream. You use enough its stops your immune system from working. Its also given to transplant patients. So I quickly put that one in my bag and went home. The rest of December went by with the same day in and day out routine of bathing, creaming, pain relief, hanging around the house and trying to exist to the best I could do. My weight at this stage was at 61kg...yeap dropping it every day without even trying