It's been a bit of an up and down couple of weeks, but mainly ups I'm pleased to say. Starting with last week, I had a couple of blisters on my right leg on the inner calf and just behind my ankle (not that you needed to know that but....). Here's a couple of photos of the blisters.... I know I've said this before but I'll say it again. Some people may find the photos a bit... er... 'graphic' and I've got to admit I've always been wary of letting anyone see my skin when it's bad - one of my weaknesses, I care too much about what other people think really - but the whole point of me doing these blogs is so that it's an opportunity for me to show people exactly what it's like to have Ichthyosis (Bullous) and it's so difficult to explain when you can't 'see' me. So photos is the best way, and really I wouldn't be 'telling it like it is' if I didn't show such photos. So apologies in advance if the pics offend anyone, but hey ho this is the norm for me as regards my condition, it's the way it is and there's nothing I or anyone else can do about it so....
These blisters are now almost healed now, which is good. I've recently had an appointment at a local dermatology clinic too which went really well I'm pleased to say. I haven't seen my own dermatologist for 4 years, so I've been discharged from there. I'd been a patient of my own dermatologist since the age of 3 too! I was doing ok though as regards my skin and I really felt nothing much more could be done and I was happy with the treamtents I was on at the time. I therefore didn't want to take up appointments that could be needed by others more than myself, another reason I stopped going.
The treatment I was using was Diprobase cream which I used for several years. But more recently I've just felt it wasn't of any great benefit for me. Especially with the really bad winter we've had this year here in the UK. The cold weather has really affected my Ichthyosis drying it out much more rapidly than it usually does (which is bad anyway). I felt it was time for a change and to see if I could possibly try something new (or something new to me anyway). I couldn't see my own dermatologist as I'd been discharged, so had to be referred to another clinic first to be 'assessed' which I thought was a bit daft, but me being me went along with it as I know it's probably their usual general procedure etc.
Basically, I saw the dermatology nurse at this clinic and I can't begin to tell you how good I felt after this appointment. The nurse was great, couldn't fault her, she was so helpful and has given me lots of sample creams to try also some cream to try as my main creams. She gave me Double Base and Dermol 500 to use as a general cream all over, also to use these while in the shower or bath as a soap substitute. I then apply the Double Base straight away as soon as I get out of the bath or shower (using Dermol 600 emmollient in the bath too), then wait about 10 mins before applying the Double Base once again. The results of applying these creams has made such a big difference, and I love the feel of my skin afterwards. I feel like I can move for a start lol the joints being the most problematic, as the skin is so thick it makes mobility restricted. Using these creams also makes me feel really clean and refreshed after applying them too - with the other cream I just felt like I was applying and applying and just getting clogged up in a way (it's hard to explain really). I know these new creams I'm using will also benefit me in the summer too, as they are lotions so when applied it will feel really cool and soothing.
The only problem I do have is that the effects from these creams doesn't last very long. I'm finding that I'm having to re-apply the creams several times a day, but I tell you what, it's worth it because the benefits of how it makes my skin feel far outweigh the actual process of applying, even though it is time consuming. It's a whole new routine for me and will take time to get used to, but I'm getting there.
To help try and retain the moisture from the creams, the dermatology nurse I saw last week has suggest I try a body stocking, like a bandage stockinette but for my body. A bit embarrassing, but hey who's going to know other than me that I'm wearing it. I'm currently waiting for the stockinette to be delivered to the pharmacy so I can pick it up, as it has to be specially ordered apparently eeek! no idea how long I'll have to wait for it. The dermatology nurse also said something to me that I've never had said to me before by a medical professional... she said that if ever I needed anything or if ever I was feeling low and my skin was getting me down, that I could call her. I honestly can't begin to tell you what a relief that felt. I really felt that she was genuinely interested in my condition and fully understood where I was coming from. That's not to say I didn't feel the other dermatologists I've seen in the past didn't do the same because they've only ever done what they felt best for me, and have helped me greatly I can't thank them enough for how they've helped me over the years. But to have someone, a medical profession close to my own age that I can talk to means a lot and has boosted my confidence believe it or not. And has given me the kick I needed to get my motivation going again.
I know something else too... I'm going to go through a hell of a lot of the creams too but that's going to be another blog entry all of it's own. I feel it's important to bring up the subject of prescriptions and what we as Ichthyosis sufferers have to do, use and the amount we need etc and the fact that different places have such different rules/regulations as regards prescriptions etc. But like I say, another blog.....
Apologies for the long blog, didn't intend for it to be this long, but oh well. Thanks for reading, if you managed to get this far lol I really appreciate it :-)
Take care
Mel xx
Great to know that you're getting some new options for treatments.
ReplyDeleteI wear stockings on my legs most days and it does help to retain the moisture.
As for the amount of creams we use - it's so expensive that I can only get the basics I can afford.