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. 

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

Month Two November 2012

For those who are fans of Sex and The City, month two had me looking like Samantha after her dermabrasion. Completely bright red and flaking, peeling, scabbing. If I had the vale hat to go with the look, I may have been able to venture out in public too. But no such luck.  House bound for most of the month. Besides I would be worried if people would smell me from the disgusting smell that was lingering around my body from the sweat.

For this month, my real concern was the extra thick skin (shaggy too) gathering around my knees, elbows, hands, neck and ankles. Looking much like a pug dog which is completely unattractive and depressing. I  have been told by other bloggers that this will eventually go away but to look at your self and see what resembles an old lady is distressing considering Im only 41. Its worse in the mornings after being in bed all night.  I think its the combination of  swelling and scratching.

Part of withdrawing from steroid creams is being extremely lethargic. All I wanted to do is lie in bed, watch tv and sleep.This is from what I have learnt from others is the body working in over drive trying to get the adrenals glands working again so they can produce its own cortisol like normal healthy people not on steroids. Heres a little clip from a medical page about the adrenal glands.

The adrenal glands are small hormone-releasing organs located on top of each kidney. They are made up of the outer portion (called the cortex) and the inner portion (called the medulla).

The cortex produces three types of hormones:

• The glucocorticoid hormones (such as cortisol) maintain sugar (glucose) control, decrease (suppress) immune response, and help the body respond to stress.
• The mineralocorticoid hormones (such as aldosterone) regulate sodium and potassium balance.
• The sex hormones, androgens (male) and estrogens (female), affect sexual development and sex drive.

So people like myself who has been using the steroids for a long periods of time, the adrenal glands stop producing its on cortisol because I was applying it on my skin. During my time on steroids I had very irregular periods which is not like me. Sometimes twice in a fortnight then nothing for months or even 4 times in a month if I was unlucky. I was always 28 days on the dot. Weight gain as my hormones were not balanced and it would not budge if I tried to loose it either. I had many blood tests which showed unbalanced hormones but doctors said I was probably going into first stages of menopause mmmm and at 38 really? I know this can happen but its very rare. Im now 28 days on the dot as normal since stopping the steroids! Other symptoms I had other than the itchy pimple rash ( which was a steroid induced acne) bloated stomach, heart palpitations, fatigue, insomnia, runny nose, infected sinus all the time, white dots on my skin (under the skin), over the top sugar cravings and there were a few other intimate symptoms but I wont mention because its kind of grouse :) I just found a picture of the pimple rash I was talking about too.... I had this for around a year and a half..every doctor told me a different story....

Month One October 2012

Well it took a few days to stop the creams after what I was told. It frightened me but excited me all at once. I was basically a drug addict to the steroids and in such a routine of putting it on every day, what would tomorrow bring and how would I cope. The first day was easy, not a problem. I thought this was a piece of cake. Day two, I was getting red and a little nervous but it was bearable. Day three, ok I think Im going to die! I woke up to what I thought was someone else. My face was swollen, I was burning all over my body and hot & cold. My first instinct was to jump in the bath. Some relief. I was on my own at this stage, kids away which was good because I was starting to feel extremely ill. I didnt know exactly what I was in for but I thought well Im going to get well soon and again not knowing how long this would last. I think it was around day 5 I rang my mother in tears asking for help. When she arrive, she found me on the couch shaking, burning red, swollen and I smelt like a dump truck from the sweat pouring out of my body. She was horrified and we called the home visit doctor. She said I had a flare but never in my life have I had ezcema like this. I looked like Id been thrown into a fire and was burnt from head to toe, except for the palms of hands. The upside the pimple rash had completely disappeared but now I had a body suit of fluro red. This was the night I threw the towel in for another dose of Preds for 10 days but no creams.

During this 10 days I started to investigate a bit more and came across a website called http://www.itsan.org/ . It gave me insight and I found hundreds of others going through the same ordeal. It frightened me even more to see the pictures and symptoms of others but what can I do but "suck it up!" I prepared myself and started again.

Holy crap! Do not do this if you have dependants, you will need a very strong network to get through because most of us are bed ridden for the first two months. I was lucky enough to have an amazing mother who stepped into my shoes and took over. Mum you are amazing! Also consult a doctor if you can find one and get on support groups they are worldly with information to help you through.

Its kind of a blur now, but mostly I remember being in the bath for hours to ease the pain and lying in bed. Eating habits were normal but the weight was flying out the window. Ok at this rate Im going to be Kate Moss before the end of the month I was thinking! My start weight was 69kg and Im 170 cm to give you an idea of proportions. Sleep? Well forget about it, there was hardly any. The sweating kept me up and the itch was insane. If I could of scratched my bones I would have, it was just crazy. I was careful not to use my nails on skin but nails on clothes to help not break the skin. In the end I chopped them off as close to the finger as I could. Then its like torture because there are no nails to ease the itch. Catch 22 yeap!

Overnight my skin became extremely dry, so by the morning I was like the Hunch Back of Notredame getting straight to a warm oil bath. Yes I was a sight! Extremely painful, everything was locked into place until the bath. Then loads of moisturising. Get that vacuum cleaner out too, the shedding skin will be everywhere and for me in a house of floorboards, well the kids thought it had been snowing...  So things you will have to endure are and you may not get everything I did, everyone is different.

* Body temp- I'd have freezing calves and feet, but crazy hot torso and freezing head. But non stop shivering all over..So heat pack on feet with bed socks and wrapped in a blanket while mum was sitting in summer clothes.
* Oozing Ears- Especially at night I could feel dripping coming out of my ears with a cracking sounds. YES foul!
* If I scratched I would oozzzzz a clear liquid. Not infection just wet.
* Flaking skin and loads of it, get the bucket out to prepare your self. I used the vacuum cleaner every morning to clean the bed out.
* Swelling everywhere. This made it difficult and painful to bend my knees and elbows. Neck was stiff and hands too. My ankles would blow up and would throb, especially at night.
* Weight loss..yippee for those who need to loose it and for those who dont make sure you eat properly and keep healthy. Keep an eye on your weight loss so you dont get to underweight.
* Itching and burning of the skin. You may look like a cherry tomato
* Shaking like Elvis. I couldnt work out if I was hot or cold at times.
* Lymph Nodes- Mine blew up to golf balls and were painful and throbbing. I have them everywhere.
* Hair Loss- girls prepare yourself, your hair may start to thin.
* Clothes- I couldnt tolerate anything but pure cotton on my skin and on really bad days I would walk around in nothing but cotton knickers.
* House bound- feeling ugly and smelly and not being able to wear normal clothes, I found comfort in every TV show I could get my hands on and movies. Facebook was a good outlet too!
*Overall Pain- The pain from the weird tingles and burn was in just terrible. Even to lie down was like having razor blades slicing my skin. Keep those pain killers handy people.
* Looking many years older than you are. The swelling causes huge winkles and creases in  your skin. This will apparently go down as the swelling goes and the itching stops.
*Blurry Vision- For me I got blurry vision. I think it was generally the swelling in around the eyes and the tightness it created. Very hard to blink!

* Sleepless nights- mainly due to discomfort and itch. Ive tried some sedatives but made me more dry in the mornings so I gave up on that and just deal with it.

The 1st photo I have attached is first thing in the morning. So swollen, I look nothing like myself. At times I felt like I had a bad botox job, I could barely open my mouth to eat. Eye brows are thinning there too..ewwwwwww

The 3rd pic, red burning skin, now this really hurts. You can probably see the lines on my neck. This is from scratching, they are fairly deep but apparently go after the withdrawal. Fingers crossed it will.