3rd Jan -
3rd January 2017
First dermatology appointment of the New Year.
Can. Not. Wait for Doctor Shudell to see how good my skin is. Okay there is redness, I know straight off the bat she'll comment on that, she wants perfection. Baby pale skin like the rest of my body. But honestly, I think it is great, yes there is dryness, and the texture is kinda off, but no open wounds or any signs of infection. It's fantastic compared to last month. Hands are feeling good, neck is showing no signs of blotchy redness. The only thing I felt worthy to comment on was the off coloured non-spots-but-spots - that were evident on on my cheeks. During the checkup, the usual low down happened, my bloods were good, my body was handling the roaccuante and cyclosporine dose together pretty well. I was reaching my cumulative amount of both medications by the end of the month. "Cumulative amount of medication your body can take." Nearly a full year since I had started cyclosporine, and what seemed like a lifetime ago since I had started roaccuatne. At long last I was finally coming to my last few weeks on the drug. I had a lot of big decisions to make in the pretty near future, but one thing I realised was lingering that no-one really addressed in the room was the infection I had over christmas. What was it? How did I contract it? Will it come back? Is this normal?
All questions I should have asked in that consultation but never did.
6th Jan -
6th /Friday Jan
I had some great plans coming up that weekend and the following too. I had a family shindig happening on the Friday and brunch with the girls from college on the following friday. It felt great not to be worrying too much about plans that involved getting dressed up. My skin felt good, and for the family dinner I ensured my hair was blowdried to perfection and put barely any foundation or powder on. I was with family after all and no-one cared if my mouth was red or not, the night was still very much in the category of christmas celebrations and my mood was not dampened at all by the slight redness occurring around my mouth. I stuck to a Vitamin E wonder cream from pennys that gives a wonderful dewy highlighted complexion, but decided to go town on my eyes and brows. At the end I caved and decided I would look better again if I resembled a disco ball with my highlighter.
10th Jan 14th Jan
On the 14th January I woke up extremely flared. Even my arms were up, this in particular hasn't happened in a long time. I subconsciously didn't even wear makeup last night when I went out for drinks with the girls. Thank god I didn't otherwise I could be in a much worse scenario. My Arms were covered itchy little plaques, basically hives. My hands were roaring red, and starting to crack naturally. There was plenty of evidence from the dried blood under my finger nails and on my white bed sheets that I ripped myself to shred during my sleep. For the whole weekend I lived in light tank tops and tight leggings to allow my overheated body cool down.
Somehow on Friday night, I had momentary memory loss as to why I don't drink cocktails. The night out at Capitol was fantastic, especially when you can get two cocktails for 7 blips. But those cocktails landed me with a week of a flare with a demonic itch covering my upper body. I got it under control by having lots of emollient baths, only washing my body envy third day - believe me, when you're in this type of state you'll do anything to reduce the itch, and that sometimes means lessening shower time. When I did have to have a proper shower I made sure I spent time in the gym sweating out any remains of the alcohol from my body. This process works for me, I tried my best to not use steroid creams on my arms after going so long without having to use strong ointments, and the same went for my hands.
By The 16th my hands were falling apart. I actually felt like my skin was dissolving away from my fingers. My fingers were flaking, cracking, red, weeping, oozing - just think of all the horrible descriptive words associated with skin disease/infection and apply it to how my hands looked. For the first time in a year the dermatitis on my hands was causing me pain. My lip had cracked once again, and a goldish crust had begun to form over it. Again it seemed, I was impetigeness. Thankfully, I got an emergency clinic appointment for my doctor to see the state of my hands and how the initial allergic reaction from Saturday had developed into a much worse state of affairs. I was given a prescription for another penicillin antibiotic and was to use various topical steroids. There were sure I had a bacterial infection regards my hands, and my mouth too was on its way to becoming another case of impetigo.
As the week progressed I did find myself using the Benovathe ORD to help with the healing process of my arms and hands, and Eumavate on my face - as my forehead and chin were in a right state of flakiness. It felt like I had a chemical peel.The thing is, you can avoid using steroid creams for as ling as you like, but when it comes down to feeling like a lizard shedding its skin and being unable to grip a steering wheel of a car , you have to accept it is time to start reapplying steroid creams.
For the rest of the week I could feel my skin flaking off, any time I rubbed an area of skin inflamed, a layer of flakes would fall to the ground. It was disgusting. I felt disgusting. My hands in particular where the main source of grief, I had this smell in my nose, the only way I can describe it was that I could smell my own skin, and it smelt like infection. The whole healing process of my hands was horrendous. I wouldn't wish it on my worst enemy. This week in particular I was keeping a food diary too, and there seemed to a connection to (processed) wheat products and heat attacks. After lunch on three separate occasions, I had massive fits of itching my hands. Within minutes of finishing my lunch, my body would go on fire, but specifically my hands felt the worse. I found running cold water over them helped, or applying pressure to them reduced the heat attack significantly. But it still would take anywhere up to twenty minutes for them to feel usable again. This went on right up to friday until I decided to completely cut out bread from my diet, as it the heat attacks were being cause by shop bought white pan, sandwich bread, pitta bread and bagels. So no more of that I'm afraid.
Thankfully by Sunday 22nd my skin felt normal again. Between the lie in I had that morning, having so many emollient baths throughout the week and applying steroid creams the correct way, something actually worked and my skin felt right as rain. I read so often of how TSW sufferers and other dermatitis sufferers don't believe in the use of topical steroids or even moisturiser, and it just baffles me. When they find they're way to my blog or Instagram profile I am regularly told to not apply such harsh creams to my face. Now, the thing here is, my Doctor, the medical school, certified, master welding, dermatologist has instructed me to apply such creams for the good of my health. Having questions for your doctor, being curious is good, have as many questions as you want. But. Once you start doubting your doctors opinion, who do you go to when things go from bad to worse? How do you cope with your infections? How can you give others advice when you don't even listen to the medical professionals advice? Just think about it for a little bit. Because during this flare, it became very evident to me that there are indeed members of the eczema community online who don't believe in their doctors ability to help manage their condition, and somehow believe that there is a cure for what we deal with. This is a completely different discussion, but I felt it so necessary to touch on in this update as the opposition to medical advice becomes more evident with each flare I get.
24 Jan
Tuesday 24rd Jan
AM
Last night I went to see Split with my friend Grace and fitted in a good ole chinwag before and after the movie. I had been working 4pm - 8pm in the hospital before, and I slept in by accident -oops- so my breakfast was all a bit over the place. I didn't eat something till half 1 in the afternoon then, I had some bread, beans and fruit salad as my snack in work on my break. By the time my shift ended I was starving again, and decided the best thing to do is just grab a McDonalds before the movie. I hadn't had one since before Christmas and figured it was a treat night so I wouldn't guilt myself over it, plus I don't get any food allergy like reactions from the MaccyDs so regards my skin I was choosing a better option that say a chinese later that night. At the cinema I got a normal popcorn and indulged in M&Ms. What a bad decision that was I learned on Tuesday morning. I woke up feeling like I had had botox. My skin was so tight all over my face, as if someone was standing behind pulling the skin from each cheek backwards. I went to work that morning in the RDS for the Craft Fair, and as the morning went I felt my skin get itchier and itchier. The best way I could describe it was as if I had had a seafood allergy. My mum reacts to squid and I've seen how her face goes - my face was just like that. I had really significant swelling running right to the edge of my chin, and felt like sandpaper to the touch. It was awful, and if I'm completely honest it was a bit distressing, as this was a completely new way for me to react to something. To deal with it, I went ham with cold compresses, now that meant going to the bathroom and waving my craft fair catalogue at my face and neck like a mad woman of menopausal age going through a hot flash.
PM
Eventually it did get to much being at the RDS as my skin was crawling and the hives had expanded to my arms. En route home, I was stuck in traffic on the quays when I got the most frightening pain in my breast. It was sharp, it was initially on the surface then it went deep under my nipple. It was the type of pain that your instant reaction is to cry because it is so unexpected and frightingly sore. I was all of a sudden in a panic, and knew something wasn't right. My breast after the initial sharp pain became a constant dull pain inside the tissue, and after speaking to my mum I rang my local GP. I must have had a lot of good karma built up or something because I got an appointment for that day.
Turned out that the bacterial infection I had been harbouring since christmas had never actually been gotten rid of. Being on immune suppressants was affecting how my body and the antibiotics were fighting the infection. My GP explained that while antibiotics are given to clear infections, your body usually develops antibodies as the infection weakens then kills the say, last 5%, of the bacteria as to know how to fight it in the future. But because of my immune suppressants, my body wasn't going through that stage. Because of all of this, the bacterial infection had travelled, and I had a abyss in my breast. The pain? That abyss rupturing. Yep you heard me, I had an abyss in my breast which was a direct complication of the infections. Whats worse? I was on the last day of my second round of antibiotics that exact day! My GP explained that I needed more antibiotics but a broader one to clear the infection... so another course of antibiotics for a week to help clear the infection in my breast.
You can see the discolouration on my hands and arm from the localised swelling and reaction. You can in the middle picture above that the colour of my hands seems odd, especially when you compare it the colour of the lower part of my thumb. This 'discolouration' was completely raised, cracked skin, that was swollen and leaking fluid. My blood vessels were under so much pressure from the swelling that the fluid had nowhere else to go but out through my skin
By Wednesday 25th I thought I could feel a difference. I was having emollient baths every night, drinking so much water to try flush my body of anything that was causing the allergic like reactions.
I went to the gym both Wednesday and Thursday to try sweat out the toxins yet again, in the hope I could go to work as normal that Friday. It wasn't till the Saturday where things got out of control. I woke up with hives covering my whole upper body, my hands were swollen and leaking water - lymphedema. My hands were in tatters. I could physically see the water seeping out of my skin. My skin had obvious fissures they were that dry. I was so drained that day I just stayed in bed. I just did not have an ounce of energy to do anything other than eat intermittently throughout the day.
On the 3rd of February I was back in the clinic. During the week I struggled to do anything with my hands, they have turned into the claw of discomfort again, meaning simple things like holding the steering wheel of my car was painful. I began to realise that what was happening to my skin, the infection I had, was affecting my daily life. It dawned on me that, if what was happening to my skin was occurring on my insides I would have been admitted to hospital weeks ago to be taken care of. But because its superficial it's not seen as debilitating as an internal issue. This time when I was in the clinic, I met a new reg before seeing Emma. This new registrar to the clinic actually used the phrase
"you could just be run down?"
Run down. I could be "run down". I felt like saying, woman I am on immune suppressants, if I'm run down how bloody so? Am I deficient in something? Am I lacking vitamins or minerals? Hell I couldn't walk through the hospital without tearing up, my hands were that sore and cracked. Run down. Jesus. Not once yet had they swabbed me for lab tests. Instead, I got myself to Occ Health in the hospital who did a basic nasal, gland and skin swab and scrape to send off for tests. By the time I was seen properly in dermatology I felt like my hands were falling apart. I could smell my own skin again. They were so so sore. I was wrapping them as much as I could to protect them from drying out more and myself from scratching. I think it's important to remember that at this time I was still on my immune suppressants as I said, cyclosporine, and I had not missed any doses while this was happening. I was given plenty of more steroids to apply, as well as an antibiotic topical cream alongside a new one called Elecon. One of the days I ended up in the dermatology house on eccles street - where I would go for UV Therapy. The head nurse, Anne Marie gave me new moisturisers to try out and the Elecon as it is also an antiseptic. At this point I felt like I was reacting to the Benovathe so this new cream was extremely welcome. ( This was on the friday)
Monday 6th
Over the weekend I could see an improvement from applying the Elecon alone. But as it was prearranged, I was back in the clinic again that Monday . This time, they took all the swabs they needed and more. Unfortunately, these swabs were to be sent abroad, to England. Specifically to see if I had a certain enzyme in my body that would allow me to absorb new medication.
The plan had always been to come off cyclosporine this month, but with the infections the idea of coming off the medication that has kept me in good nick, and possibly the only reason my whole body wasn't affected by these recent infections, seemed extremely daunting.
My mum came with me too to ask any questions and queries about the change in tactic. Cancer was spoken about, photosensitivity was spoken about as was things like topical steroid withdrawal, leaky gut and if there are scientific links between diet and chronic dermatitis. Which by the way there isn't. There has been nothing proven to say diet has an affect on dermatitis, but that being said I personally already knew too much sugar aggravated my skin - When I mentioned this it was pointed out to me that I although I had an "allergic reaction" of sorts, it was not dermatitis that was brought on by the reaction, it was hives, another form of skin issues but not my normal ( god, did I just refer to all of this as normal? ) dermatitis. Not being on any medication at all was even discussed, which believe it or not was the end decision we came to. I very firmly made the decision to be off all medication for a week, this also gave me a week to decide if I truly wanted to begin taking a new, longer term, immune suppressant.
13 Feb The plan had always been to come off cyclosporine this month, but with the infections the idea of coming off the medication that has kept me in good nick, and possibly the only reason my whole body wasn't affected by these recent infections, seemed extremely daunting.
My mum came with me too to ask any questions and queries about the change in tactic. Cancer was spoken about, photosensitivity was spoken about as was things like topical steroid withdrawal, leaky gut and if there are scientific links between diet and chronic dermatitis. Which by the way there isn't. There has been nothing proven to say diet has an affect on dermatitis, but that being said I personally already knew too much sugar aggravated my skin - When I mentioned this it was pointed out to me that I although I had an "allergic reaction" of sorts, it was not dermatitis that was brought on by the reaction, it was hives, another form of skin issues but not my normal ( god, did I just refer to all of this as normal? ) dermatitis. Not being on any medication at all was even discussed, which believe it or not was the end decision we came to. I very firmly made the decision to be off all medication for a week, this also gave me a week to decide if I truly wanted to begin taking a new, longer term, immune suppressant.
Tuesday 13 Feb
Happy face, smiling, happy face, smiling. Today marked the beginning of a new course of medication - azathioprine. After a week off all my medication and topical steroids, I was neither worse or better off than prior, I know it was only a week, but it only takes 30 minutes to react to food, so how were we to know if my skin would change or not in the week. Regardless, it was nice not to wake up every morning and take a concoction of tablets and apply layers of creams. My open wounds and sores from my last infection, were still healing but not yet in the later stages of new skin showing - my wounds usually turn purple when they are in the alter stages of healing, I know at this stage to do my utmost not to scratch as I'm close to it being fully healed. With the new medication, I was reminded that it could be minimum 4-6 weeks before I see any improvement, down to the fact that Imuran is not as potent as cyclosporine as it is designed as a long term medication, so it is a slower release. I intended to buy lush dream cream again as I started to remember how good it was at aiding in the healing process, so that was on my shopping list alongside my new pharmaceuticals. I left the clinic extremely happy, but of course apprehensive as to what wonderful silly side effects I may get in the early days of starting Imuran.
In the next post of the series I will be going through my first few weeks on Imuran and at long last discussing the biggest infection I've had to date in its entirety. If anyone has any questions or queries don't hesitate to get in touch via Instagram or email lesleygoulding93@gmail.com
L x
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