Friday, 29 June 2012
I've got legs!!
Well I don’t blog for ages and then when I do, I start with a blog declaring I’ve got legs lol. Been a bit of a roller coaster recently health wise. A couple of weeks ago I started with a really bad blistering spell which started as a really small blister on my left thigh, which overnight progressed into a very large blister. No sooner had that one flared up, another popped up on my right thigh too. Keeping dressings to stay put is difficult at the best of times, but when they’re in difficult to bandage areas especially the thighs, it’s nigh on impossible to get them to stay up. Resorted to wearing tights to help keep them up for a day or two, because the tape I was using didn’t hold and I couldn’t find any safety pins to hold it up either.
Oh well, I managed in the end... just about but couldn’t wear the tights after a couple of days as the weather kept changing rapidly from really cold like winter one day then to scortching like a sauna the next. So I couldn’t win on that score either.
Eventually (well I say eventually, I mean literally within a day or 2 if that), the blister on my thigh spread down my leg onto my knee. I couldn’t walk properly because I couldn’t bend or straighten my knee, and the pain was almost unbearable. And when changing the dressings, oh my God the smell.... It made me feel sick. We had an appointment with Rebecca’s dermatologist that Thursday, so I decided to leave booking an appointment to see my GP as I probably wouldn’t have got an appointment until 6 week next Thursday lol (shouldn’t laugh I know but if I don’t laugh....). Rebecca had a couple of little blisters and had a bit of a cold bless her so she wasn’t 100% that day. The dermatologist asked how I was and I told him about my legs. He had a look at my legs and agreed I definitely needed antibiotics as it was clearly an infection and it was soon sorted out thank goodness.
While at Rebecca’s appointment, we met up with my lovely good friend Tammy and her gorgeous son Wyatt at the hospital (Wyatt has non-Bullous Ichthyosis). Tammy very kindly gave me some samples of creams that she had left over from the ISG (Ichthyosis Support Group) family conference in Manchester in May. I love having goodie bags to try new creams. I’m always up for trying something new, but would like to point out that I would ALWAYS test them out on myself first before trying them on Rebecca. However, I know not all parents can do this with their children, and I’m fortunate in that respect that I can try the creams first.
Here are some photos of my legs during the recent bad blistering spell. And I’ll post some after photos later in this blog so you can compare the difference.
This is my left leg when blistering, just as it was starting to spread to my knee (19th June 2012)
This is my left leg and the knee just as it was starting to dry up (21st June 2012)
This is an old photo just to so you how thick the skin usually looks on my feet.
The above photos are all 'before' photos and the following photos are going to be 'after' shots of the exact same areas.
Before I post the ‘after’ photos, I’d just like to explain a new routine I’ve tried. It is the first time I have ever tried this routine and would like to share with others, in the hope it will give some encouragement and hope to others with Ichthyosis. Although I must stress that what suits one person won’t always suit another, we are all different (but you don’t need me to tell you that). I learn like most people, through trial and error and for me personally this routine worked.
This weekend I wanted to try the samples of creams I got from my friend Tammy, which included a couple of bath emollients etc. Now that my skin was drying out and starting to heal thanks to the antibiotics, I thought it was time to try some of them out.
My new Routine
First I ran a bath and added my usual Dermol 600 bath emollient. To this added some of the Doublebase Bath Addative (I also admittedly put a bit more in the is says on the bottle ooopsies - but hey if it works it works). Then I soaked in the bath for a good 45 mins to an hour until my skin was extremely soggy and white in colour (as it usually turnwet anyway for those who aren’t aware, my skin isn‘t waterproof because of the lack s white and soggy when of keratin in my skin). Then I used... wait for it... Never thought I’d use these words in the same sentence but here goes lol a pan scouring sponge (the green scouring side not the sponge side), to gently scrub off any loose skin. This is the first time in my life I have EVER used one of these. The thought of using one of these on my skin, never even crossed my mind until more recently, I read about a fellow Ichthyosis sufferer with the same type of Ichthyosis, using them on her skin with amazing results. So I decide to bite the bullet as it were, and thought go for it Mel, you can only try. So I did. I think sometimes as in this case, it’s a mind over matter thing. Sometimes your skin might just be that little bit too thick to get it all off, but if you do it gradually to start with if the skin is extremely thick and do it over the course of a few baths then it should gradually work. As with the skin of and Ichthyosis sufferer, the sponge too gets soggy so the combination of the skin being extremely soggy and the sponge being extremely soggy, results in scrubbing with the scourer to hurt less. I was actually really surprised at how little it did hurt. I scrubbed the whole of my body, and if I found it hurt a bit while scrubbing I added some of my usual ‘soap’ Dermol 500 lotion to the sponge first before scrubbing the area I was scrubbing which helped. I then used some of the Eucerin bath and shower wash with Omega, which I really like even if it does have a subtle smell of fish (which you’d expect anyway with something containing Omega). I’d apply this to my joints mainly.
Once out of the bath, I applied Eucerin cream with 10% Urea in all over my body. Apart from my hands and feet. On my feet I used the Eucerin Intensive foot lotion with 10% Urea, and for my hands I tried the Eucerin Aquapohr. Once I applied the Aquaphor to my hands I put cotton gloves on for about 10-20 mins or so while the cream soaked in. I found this to be great, and it’s not as sticky as the 50/50 or Vaseline that I usually use sometimes.
I know to some of you, (if not many of you) these creams etc are not new to you and you may well not have the same results, but this was so new to me. Maybe it was just one of those things I don’t know, but I’m determined to try and keep on top of this now to try and keep the thickening of my skin to a minimum. Once I get an appointment through for myself with the Dermatologist, I will be asking for some more of these creams etc. I would also like to point out that this is just me sharing my experience, and please consult your Dr or Dermatologist should you want to try this for yourself. Even moreso, if you want to try this for your child/children with Ichthyosis. Creams containing Urea are only advised to be used on children of a certain age and upwards.
Here are the photos of how my skin looks now ‘after’ this routine.
My left leg as it is now after antibiotics and my new 'routine'
The back of my right knee
My left foot hardly any thick yellow scales
My left ankle
Thanks so much for reading, all feedback is welcome.
Thursday, 24 May 2012
A Grand Day Out
On Saturday 27th May Friends of Ichthyosis had it’s first organised day out at Gulliver’s World in Warrington. It’s the first outing I’ve organised for FOI and as it’s been a while there were a few teething problems I’ll admit, but I’m sure the next one will run more smoothly. There was a group of about 14 of us altogether and we all had a fantastic time.
It was a wonderful opportunity to meet others with Ichthyosis, for the kids to play with other kids with Ichthyosis and for the parents to chat and share their experiences. Thankfully the rain kept off, but it was a mixture of warm sun and a cold breeze but that didn’t seem to phase the kids as they went on the rides and had lots of fun. Here are a few photos from the day. I’d like to say a big thank you to everyone who joined us on the day it was so lovely to meet you all. And A big thank you to Gulliver’s World too. Here's to the next one, let's make it bigger and better :)
Craig and Sharon Beattie with their son Harry, Myself and my daughter Rebecca and Tammy Smith
Donna Antrobus, Tomo and Beccy Curtis
Wyatt Rothwell
Sharon Beattie and her son Harry
Tammy Smith with her son Max
Tomo, Max and ABi
Vincent and Daniel Bradley
Riding on the train
Wednesday, 15 February 2012
One year already!
It’s hard to believe that a year has passed since my baby girl , Rebecca Grace was born. She was born at 12 midday on 10th February, weighing 4lb 11oz. And just like her Mummy was born with EHK (Bullous Ichthyosis). The day of Rebecca’s birthday brought back lots of memories as if it was just moments ago. The skin on her tiny body was stripped raw, and she was taken straight to NICU. While in the NICU her skin improved a little and she fed well and continued to grow stronger. The thick skin on her hands began to shed, and resembled candle wax in appearance. This didn’t fully clear until she had been home for several days.
Rebecca at just 3 hours old just before she was taken to NICU
She was in NICU for 2 weeks, and the hardest part for me was coming home without her once I was well enough to come out of hospital myself after the birth. Leaving her at the hospital was heartbreaking, but even so I knew she was in good hands (despite the fact that the Dr’s etc continuously asked me how she should be treated, and suddenly I was the ‘expert’ in their minds because I already had the condition myself).
Rebecca shortly after being taken into NICU in the incubator and as she was for the two weeks she was in there.
Well, a lot has happened since then. My baby girl, although still quite small for her age, is continuing to do well, is very strong and loves her food (just like her Mummy, and Daddy come to that haha), and her personality shines through the obvious pain she is often feeling. Of course she gets blisters, cracked and broken skin frequently, but somehow she still manages to smile through it.
Rebecca at 5 months old
Over the last couple of months, her big brother Daniel has been helping his Mummy and his sister with her creams and even with her baths. He loves to help out, helping Mummy to get everything prepared for Rebecca’s cares. He even puts the gloves on by himself that I use to put her creams on. He then gets a cotton wool ball and dabs it on her skin gently as if to be washing her too, it’s so sweet. Even Rebecca herself has started to rub the cream in by herself. I’ll never forget the first time I saw her do this, I had a tear in my eye. I put a little bit of cream on her tummy and said to her “Becca do rub-a-dub” (as I call it for Rebecca’s benefit) and she put her hand flat on her tummy and started to rub the cream in with a huge grin on her face as I praised her for being such a clever girl. I can’t tell you how cute it was to see.
Rebecca isn’t walking yet, but her legs are very strong. She is however, trying her best to crawl though, which is something I thought she would never do because of her skin. I am so proud of her.
Rebecca with Daddy and big brother Daniel on her birthday
Happy first Birthday sweetheart, I love you lots, my brave girl xxxx
Rebecca and Daniel with Mummy
Rebecca at just 3 hours old just before she was taken to NICU
She was in NICU for 2 weeks, and the hardest part for me was coming home without her once I was well enough to come out of hospital myself after the birth. Leaving her at the hospital was heartbreaking, but even so I knew she was in good hands (despite the fact that the Dr’s etc continuously asked me how she should be treated, and suddenly I was the ‘expert’ in their minds because I already had the condition myself).
Rebecca shortly after being taken into NICU in the incubator and as she was for the two weeks she was in there.
Well, a lot has happened since then. My baby girl, although still quite small for her age, is continuing to do well, is very strong and loves her food (just like her Mummy, and Daddy come to that haha), and her personality shines through the obvious pain she is often feeling. Of course she gets blisters, cracked and broken skin frequently, but somehow she still manages to smile through it.
Rebecca at 5 months old
Over the last couple of months, her big brother Daniel has been helping his Mummy and his sister with her creams and even with her baths. He loves to help out, helping Mummy to get everything prepared for Rebecca’s cares. He even puts the gloves on by himself that I use to put her creams on. He then gets a cotton wool ball and dabs it on her skin gently as if to be washing her too, it’s so sweet. Even Rebecca herself has started to rub the cream in by herself. I’ll never forget the first time I saw her do this, I had a tear in my eye. I put a little bit of cream on her tummy and said to her “Becca do rub-a-dub” (as I call it for Rebecca’s benefit) and she put her hand flat on her tummy and started to rub the cream in with a huge grin on her face as I praised her for being such a clever girl. I can’t tell you how cute it was to see.
Rebecca isn’t walking yet, but her legs are very strong. She is however, trying her best to crawl though, which is something I thought she would never do because of her skin. I am so proud of her.
Rebecca with Daddy and big brother Daniel on her birthday
Happy first Birthday sweetheart, I love you lots, my brave girl xxxx
Rebecca and Daniel with Mummy
Monday, 19 September 2011
Where to begin again?... A fresh start
I’ve been wanting to write a new blog for ages now, but to be honest I just didn’t know where to start or what to say. Anyway I’ll give it a go as it’s been far too long since my last blog.
The reason I started my online blog was, not only to give an insight as to what living with Ichthyosis is like, but also to help raise awareness of the condition, I also have personal reasons for starting it too. I’ve always found in the past, that by writing down my feelings, thoughts and worries (not forgetting the good and fun things too of course) helps me a great deal. Until the last year or so, I always hand wrote these things on paper and more often than not ripped it up and threw it away. By doing this I felt like a weight had been lifted off my shoulders, which really helped.
So, I decided to start an online blog to share my experiences of living with Ichthyosis in the hope of helping others affected by the condition or similar conditions, and it is also a place where I can express how I really feel. By being a bit more open about how Ichthyosis affects me. I’ve always been one to bottle things up, put on a brave face etc, etc and now I feel it’s time for me to... not necessarily change that, but to be more confident and more honest with myself. People have commented to me in the past and have said things like “I don’t know how you cope with everything you have to go through and everything you’ve have been through. Yet you’re always smiling”. But that’s just me though, I’ve never known any different, having had Ichthyosis all my life, so it’s the norm for me, part of life so I just tend to get on with it, life’s too short. And I always say, there are plenty of people in this world who are far worse off than me so who am I to complain... so I don’t (complain that is).
Someone recently said to me “ I noticed something about you today, if anyone mentions about you helping others your face lights up, but as soon as anyone mentions you helping yourself you put the barriers up” and this comment really made me think. I’ve never really thought about it before until now. But it’s true, I love helping others especially when it comes to Ichthyosis because Mum and I had very little support other than that of family and close friends when I was growing up.
Anyone who knows me well, knows that I rarely ever complain and try to see the bright side of things (I can’t even complain if my food is cold in a restaurant haha). But believe me I have my moments when I’m having a particular bad spell of blistering etc. I am after all only human. Sometimes all I want to do is cry (and admittedly, sometimes I do, although not often, when I’m on my own when I’m bad with blistering). Then sometimes I just want to scream with the pain (but I tend to scream on the inside and don’t let it show). Somehow though, I always manage to get through it and grin and bear it so to speak.
As I write this I am lay on the bed, and the children are fast asleep. I had to come and lie on the bed because my leg isn’t too good tonight. It started late this afternoon with a couple of small blisters, and an hour later I checked them and they were bigger so I put a dressing on them. I have just got ready for bed and when I checked the blister (as it was really quite painful by now), the bigger blister of the five I have was much bigger. The largest one is VERY painful with four smaller blisters clustered together just above it.
I had no choice but to burst the large blister with a sterile needle (let’s just say it stung a little - and yes there was a hint of sarcasm there haha). I drained the blister and bandaged it up again but the pain is still there which is a bit unusual for me as the pain usually subsides pretty quickly once the blister is popped, as it takes the pressure off. I’ve taken some pain killers, in the hope it will ease the pain so I can get some sleep. Even sitting upright on the sofa my leg is too painful, it feels like I’m being constantly kicked... HARD. It’s not hurting as much now that I’m lay down, it’s when I put any weight on it, get up to walk on it that makes it hurt the most. Any kind of pressure no matter how subtle really hurts. I’ll have to change the dressing again in a few minutes, and I’ve only had it on just less than half an hour. The dressing is soaked through already and there’s blood too (I hardly touched it with the needle just pierced the top so it can’t be that that’s the cause of the bleeding - just in case anyone was wondering). I’m not used to any bleeding after bursting a blister that I can recall, ever in my experience. Which suggests to me that I may well have an infection (I‘ve had many, many infections throughout my life)... Great!
Anyway, I’ll finish this off now by saying that some readers may find my blogs and the photos I share on there a bit too graphic (blister and sores wise), or too much but all I want to do is be honest with my friends, honest with whoever reads it and also to be honest with myself. I’ve learnt a LOT recently (more of this will be revealed in future blogs soon) and by opening up more and actually speaking my mind, saying how I really feel and telling it like it is in blog form, all I can say is if it helps in the long term (whether it be others in a similar situation or indeed helps me) then it’s worth it. If you are offended by anything I write then all I can do is apologise. At the end of the day it is my life, my blog and I need to push myself to regain my confidence and I feel this is a good way to start, before I lose the plot lol.
Please feel free to follow my journey and thanks for reading.
The reason I started my online blog was, not only to give an insight as to what living with Ichthyosis is like, but also to help raise awareness of the condition, I also have personal reasons for starting it too. I’ve always found in the past, that by writing down my feelings, thoughts and worries (not forgetting the good and fun things too of course) helps me a great deal. Until the last year or so, I always hand wrote these things on paper and more often than not ripped it up and threw it away. By doing this I felt like a weight had been lifted off my shoulders, which really helped.
So, I decided to start an online blog to share my experiences of living with Ichthyosis in the hope of helping others affected by the condition or similar conditions, and it is also a place where I can express how I really feel. By being a bit more open about how Ichthyosis affects me. I’ve always been one to bottle things up, put on a brave face etc, etc and now I feel it’s time for me to... not necessarily change that, but to be more confident and more honest with myself. People have commented to me in the past and have said things like “I don’t know how you cope with everything you have to go through and everything you’ve have been through. Yet you’re always smiling”. But that’s just me though, I’ve never known any different, having had Ichthyosis all my life, so it’s the norm for me, part of life so I just tend to get on with it, life’s too short. And I always say, there are plenty of people in this world who are far worse off than me so who am I to complain... so I don’t (complain that is).
Someone recently said to me “ I noticed something about you today, if anyone mentions about you helping others your face lights up, but as soon as anyone mentions you helping yourself you put the barriers up” and this comment really made me think. I’ve never really thought about it before until now. But it’s true, I love helping others especially when it comes to Ichthyosis because Mum and I had very little support other than that of family and close friends when I was growing up.
Anyone who knows me well, knows that I rarely ever complain and try to see the bright side of things (I can’t even complain if my food is cold in a restaurant haha). But believe me I have my moments when I’m having a particular bad spell of blistering etc. I am after all only human. Sometimes all I want to do is cry (and admittedly, sometimes I do, although not often, when I’m on my own when I’m bad with blistering). Then sometimes I just want to scream with the pain (but I tend to scream on the inside and don’t let it show). Somehow though, I always manage to get through it and grin and bear it so to speak.
As I write this I am lay on the bed, and the children are fast asleep. I had to come and lie on the bed because my leg isn’t too good tonight. It started late this afternoon with a couple of small blisters, and an hour later I checked them and they were bigger so I put a dressing on them. I have just got ready for bed and when I checked the blister (as it was really quite painful by now), the bigger blister of the five I have was much bigger. The largest one is VERY painful with four smaller blisters clustered together just above it.
I had no choice but to burst the large blister with a sterile needle (let’s just say it stung a little - and yes there was a hint of sarcasm there haha). I drained the blister and bandaged it up again but the pain is still there which is a bit unusual for me as the pain usually subsides pretty quickly once the blister is popped, as it takes the pressure off. I’ve taken some pain killers, in the hope it will ease the pain so I can get some sleep. Even sitting upright on the sofa my leg is too painful, it feels like I’m being constantly kicked... HARD. It’s not hurting as much now that I’m lay down, it’s when I put any weight on it, get up to walk on it that makes it hurt the most. Any kind of pressure no matter how subtle really hurts. I’ll have to change the dressing again in a few minutes, and I’ve only had it on just less than half an hour. The dressing is soaked through already and there’s blood too (I hardly touched it with the needle just pierced the top so it can’t be that that’s the cause of the bleeding - just in case anyone was wondering). I’m not used to any bleeding after bursting a blister that I can recall, ever in my experience. Which suggests to me that I may well have an infection (I‘ve had many, many infections throughout my life)... Great!
Anyway, I’ll finish this off now by saying that some readers may find my blogs and the photos I share on there a bit too graphic (blister and sores wise), or too much but all I want to do is be honest with my friends, honest with whoever reads it and also to be honest with myself. I’ve learnt a LOT recently (more of this will be revealed in future blogs soon) and by opening up more and actually speaking my mind, saying how I really feel and telling it like it is in blog form, all I can say is if it helps in the long term (whether it be others in a similar situation or indeed helps me) then it’s worth it. If you are offended by anything I write then all I can do is apologise. At the end of the day it is my life, my blog and I need to push myself to regain my confidence and I feel this is a good way to start, before I lose the plot lol.
Please feel free to follow my journey and thanks for reading.
Friday, 24 June 2011
Lessons Learnt
Long time no blog... Yet again. Hectic is one word I suppose you could use to describe things lately. In short, and without going into too much detail, here’s what’s been happening. Rebecca is now 4 months old, the time is flying by. She’s coming along nicely, continuing to do well, putting weight on and is really alert, looking around doesn’t want to miss anything and is taking everything in around her. She’s also started to chuckle and babble in her own little way which is so cute.
For the last 6 weeks however, Rebecca has been wearing an orthopaedic harness. She was born with a dislocated hip as well as her skin condition Ichthyosis. So in order to help the hip to develop in it’s correct position, she has had to wear the harness. We were at first concerned as to how wearing the harness would affect her skin. Would it rub her skin raw for example and would it be soft enough for her. Turns out it isn’t as bad as we thought it would be, and Rebecca has taken to it much better than we thought she would. The alternative to the harness though, would be surgery to reposition her hip, which in turn would mean that Rebecca would need to be in a plaster cast which would go up to her chest and she would have to have the cast on for up to 16 weeks. This would definitely not be good for her skin, as it is so fragile, and vulnerable to infection and blisters frequently. So the harness was the best option, as regards causing as little trauma to her skin as possible. The good news is, after regular weekly, then fortnightly visits to Manchester Children’s Hospital for checks, her hip is doing really well. The consultant is really pleased with her progress, and says it is doing much better than she expected. It is looking very promising that the harness will be removed in around 4 weeks (well, just less than 3 weeks now as I type this). Anyway, that’s the EXTREMELY short version of events about this, but the whole thing has been... An ‘experience’ shall we say.. Let’s just say a strongly worded letter is being written to the hospital (it’s a very long story which I really don’t want to go into at the moment).
Rebecca wearing her harness and still smiling
Other recent events have made me think a lot about everything generally too (nothing to do with skin just in case you were wondering by the way). Let’s just say I’ve learnt a few lessons along the way, including the fact I’ve learnt a lot about myself. Things have happened that have made me think about things differently. Some of the things that have happened were negative, but from them, if anything it did me a favour or should I say the people involved have done me a favour by behaving the way they did, so thanks for that (again I won’t go into it here as it’s more trouble than it’s worth in all honesty). I also learnt the true meaning of friendship from this.
They say things happen for a reason, and I’ve always been a strong believer of this. Recent events have also kicked me into touch a little as regards the fact that I need to regain my self confidence, to be more assertive in my ways as I’m far too soft and polite for my own good sometimes haha. Also to push myself that extra mile to achieve more, to find it within me the motivation to follow through tasks and goals I set myself (although so far in life I have always achieved what I set out to do, things have slipped slightly of late).
The question now is... Could I possibly fit anymore into a day? And my answer to that is simply this... I honestly don’t know but I’ll give it a damn good try.
For the last 6 weeks however, Rebecca has been wearing an orthopaedic harness. She was born with a dislocated hip as well as her skin condition Ichthyosis. So in order to help the hip to develop in it’s correct position, she has had to wear the harness. We were at first concerned as to how wearing the harness would affect her skin. Would it rub her skin raw for example and would it be soft enough for her. Turns out it isn’t as bad as we thought it would be, and Rebecca has taken to it much better than we thought she would. The alternative to the harness though, would be surgery to reposition her hip, which in turn would mean that Rebecca would need to be in a plaster cast which would go up to her chest and she would have to have the cast on for up to 16 weeks. This would definitely not be good for her skin, as it is so fragile, and vulnerable to infection and blisters frequently. So the harness was the best option, as regards causing as little trauma to her skin as possible. The good news is, after regular weekly, then fortnightly visits to Manchester Children’s Hospital for checks, her hip is doing really well. The consultant is really pleased with her progress, and says it is doing much better than she expected. It is looking very promising that the harness will be removed in around 4 weeks (well, just less than 3 weeks now as I type this). Anyway, that’s the EXTREMELY short version of events about this, but the whole thing has been... An ‘experience’ shall we say.. Let’s just say a strongly worded letter is being written to the hospital (it’s a very long story which I really don’t want to go into at the moment).
Rebecca wearing her harness and still smiling
Other recent events have made me think a lot about everything generally too (nothing to do with skin just in case you were wondering by the way). Let’s just say I’ve learnt a few lessons along the way, including the fact I’ve learnt a lot about myself. Things have happened that have made me think about things differently. Some of the things that have happened were negative, but from them, if anything it did me a favour or should I say the people involved have done me a favour by behaving the way they did, so thanks for that (again I won’t go into it here as it’s more trouble than it’s worth in all honesty). I also learnt the true meaning of friendship from this.
They say things happen for a reason, and I’ve always been a strong believer of this. Recent events have also kicked me into touch a little as regards the fact that I need to regain my self confidence, to be more assertive in my ways as I’m far too soft and polite for my own good sometimes haha. Also to push myself that extra mile to achieve more, to find it within me the motivation to follow through tasks and goals I set myself (although so far in life I have always achieved what I set out to do, things have slipped slightly of late).
The question now is... Could I possibly fit anymore into a day? And my answer to that is simply this... I honestly don’t know but I’ll give it a damn good try.
Saturday, 9 April 2011
Long time no blog... and I'm a Mum again!
Well what can I say? this blog is a long time coming. Been gearing up to write a new entry for ages now, yet everytime I do finally get around to it I'm either too tired or my mind just goes blank. Oh well, I'm here now and have I got some catching up to do?!!!
Just looked back at my last post here and I can't believe it was posted back in August last year!! I can only apologise for my lateness or should I say laziness. So much has happened that I'll probably forget most things. Since my last post life has been a mixed bag shall we say, full of ups and downs. Basically, lost a friend in October, then my aunt also passed away on Boxing Day amongst many other things that have happened.
But I'm not going to get all depressing on you, so here's my good news.... in fact forget good and replace that with GREAT! On 10th February 2011 I had a beautiful baby girl Rebecca Grace. She was born full term, but weighed only 4lb 11oz. She was also born with Bullous Ichthyosis (aka EHK) like myself. She was in special care for 2 weeks in an incubator and I was in hospital for a week as I had an emergency c-section. We've had great support from the hospital team, given great contacts and lots of help. But everyone keeps telling me I'm the expert when it comes to our condition as I have the condition and live with it. I can understand their good intention with this comment but at the same time, I don't have the medical knowledge. I mean, it's one thing doing your own treatments and caring for the condition yourself, but when it's your child it's completely different. It's really difficult to explain what I mean.
Rebecca, like myself was red raw when she was born. But to cut a very long story short she is continuing to do well. Feeds really well and is continuing to put on weight nicely. Her skin is up and down, and she has had a few blisters but otherwise she is doing really well and I'm so proud of her. She's so bright and alert and is starting to take everything in around her and she's only 8 weeks old. Here is a photo of her at 7 weeks old:
Now, as a Mum to a young baby with Ichthyosis I have many questions and I still have lots to learn. I'm learning all the time. And no doubt as time goes on I will be writing about certain issues on here. Sometimes however, it's finding the time to sit and write thesedays. I will do my upmost to keep up with this blog though, in the hope it will help others, also to encourage other parents of children with Ichthyosis to get in touch if they would like to chat. Please feel free to contact me if you wish and I'll do what I can to help. It'll be great to chat to other parents who are going through the same thing. I'd really like to get in touch with any other Mum's out there who have EHK and also have children with the condition too, so we can share our experiences and help each other.
Anyway, that's me done for now, but I'll be back again soon. Before I go I'd just like to take this opportunity to thank all those who have been there for me recently, and to my friends for all their support, kind words etc it really means a lot to me and is most appreciated. Thank you all and take care xx
Just looked back at my last post here and I can't believe it was posted back in August last year!! I can only apologise for my lateness or should I say laziness. So much has happened that I'll probably forget most things. Since my last post life has been a mixed bag shall we say, full of ups and downs. Basically, lost a friend in October, then my aunt also passed away on Boxing Day amongst many other things that have happened.
But I'm not going to get all depressing on you, so here's my good news.... in fact forget good and replace that with GREAT! On 10th February 2011 I had a beautiful baby girl Rebecca Grace. She was born full term, but weighed only 4lb 11oz. She was also born with Bullous Ichthyosis (aka EHK) like myself. She was in special care for 2 weeks in an incubator and I was in hospital for a week as I had an emergency c-section. We've had great support from the hospital team, given great contacts and lots of help. But everyone keeps telling me I'm the expert when it comes to our condition as I have the condition and live with it. I can understand their good intention with this comment but at the same time, I don't have the medical knowledge. I mean, it's one thing doing your own treatments and caring for the condition yourself, but when it's your child it's completely different. It's really difficult to explain what I mean.
Rebecca, like myself was red raw when she was born. But to cut a very long story short she is continuing to do well. Feeds really well and is continuing to put on weight nicely. Her skin is up and down, and she has had a few blisters but otherwise she is doing really well and I'm so proud of her. She's so bright and alert and is starting to take everything in around her and she's only 8 weeks old. Here is a photo of her at 7 weeks old:
Now, as a Mum to a young baby with Ichthyosis I have many questions and I still have lots to learn. I'm learning all the time. And no doubt as time goes on I will be writing about certain issues on here. Sometimes however, it's finding the time to sit and write thesedays. I will do my upmost to keep up with this blog though, in the hope it will help others, also to encourage other parents of children with Ichthyosis to get in touch if they would like to chat. Please feel free to contact me if you wish and I'll do what I can to help. It'll be great to chat to other parents who are going through the same thing. I'd really like to get in touch with any other Mum's out there who have EHK and also have children with the condition too, so we can share our experiences and help each other.
Anyway, that's me done for now, but I'll be back again soon. Before I go I'd just like to take this opportunity to thank all those who have been there for me recently, and to my friends for all their support, kind words etc it really means a lot to me and is most appreciated. Thank you all and take care xx
Sunday, 1 August 2010
Flying Visit
Hi folks, I’m back after a long absence. I know it seems like I keep repeating myself when I say that things here have been hectic, but yet again this has been the case and time has caught up with me. So please bear with me.
Going back to May (yes, I know...), on Sunday 23rd May my father in law took part in the Walk for Skin in Manchester (in association with the British Skin Foundation), to help raise money for the Ichthyosis Support Group (ISG). Also taking part was Katrina Hughes, her partner Kevin Tuohy and their daughters, Abbie, Ellie and Hannah. Ellie is 3 years old and like myself has Bullous Ichthyoids (EHK). It was a great day, the weather was perfect if a little too hot for me, so there’s no way I could’ve done the walk myself. Ellie was a star though, she completed the walk along with her family in the heat and she did fantastically, far better than I ever could have.
To show our support, myself, my husband, my mother in law, my Mum and our good friend Joanna went along to meet them all at the finish line at The Lowry. We al had a lovely chat at the end and are keeping in touch which is great. My father in law raised £140 for the ISG and Ellie’s just giving page continues to exceed her £500 target, which is fantastic. I’d just like to take this opportunity to say a big thanks to my father in law for taking part in the walk for skin it means a lot to me. Also a big thank you to the Tuohy family and a big well done to Ellie, she truly is her Daddy’s little warrior. Big thanks should also go to everyone who took part in a walk for skin event all across the UK.
In other news, we have recently moved house. To cut a very long story short and without going into too much detail. We were not happy where we were living. It was on a main road, we had major problems parking our car (we had no drive or garage and added to that the fact that we had national express coaches parked outside or very close to our house virtually every night for weeks on end, it was ridiculous to be quite honest but there was absolutely nothing we could do - although I did put in a complaint to National Express about the situation and all I got was a reply telling me that the vehicles I mentioned - including their registration numbers - didn’t exist on thier records therefore must not be National Express coaches LOL how do they explain the fact that they had the usual ‘National Express’ logo all over the sides of the coaches and the 540 London as they usually do in the front idiots!! Anyway.... Enough of that lol). Also where we were living it wasn’t all that safe for our little boy especially now he is toddling, being on a main road and all that, and there are other reasons we weren’t happy there too but I won’t go on. Anyway, where we’ve moved to now is much nicer, much quieter, we have a lovely garden and our own drive. There’s even a lovely little park next to the house for Daniel to play on which is great, and he loves it so far.
Also since we moved, Daniel has celebrated his first birthday which was lovely. We had a combined birthday/housewarming party for him at our new house and all our family and our good friend Joanna joined us to celebrate. Everyone had a good tie especially Daniel which is the most important thing.
Hopefully it won’t be too long before my next entry. Until then..... Thanks for reading
Going back to May (yes, I know...), on Sunday 23rd May my father in law took part in the Walk for Skin in Manchester (in association with the British Skin Foundation), to help raise money for the Ichthyosis Support Group (ISG). Also taking part was Katrina Hughes, her partner Kevin Tuohy and their daughters, Abbie, Ellie and Hannah. Ellie is 3 years old and like myself has Bullous Ichthyoids (EHK). It was a great day, the weather was perfect if a little too hot for me, so there’s no way I could’ve done the walk myself. Ellie was a star though, she completed the walk along with her family in the heat and she did fantastically, far better than I ever could have.
To show our support, myself, my husband, my mother in law, my Mum and our good friend Joanna went along to meet them all at the finish line at The Lowry. We al had a lovely chat at the end and are keeping in touch which is great. My father in law raised £140 for the ISG and Ellie’s just giving page continues to exceed her £500 target, which is fantastic. I’d just like to take this opportunity to say a big thanks to my father in law for taking part in the walk for skin it means a lot to me. Also a big thank you to the Tuohy family and a big well done to Ellie, she truly is her Daddy’s little warrior. Big thanks should also go to everyone who took part in a walk for skin event all across the UK.
In other news, we have recently moved house. To cut a very long story short and without going into too much detail. We were not happy where we were living. It was on a main road, we had major problems parking our car (we had no drive or garage and added to that the fact that we had national express coaches parked outside or very close to our house virtually every night for weeks on end, it was ridiculous to be quite honest but there was absolutely nothing we could do - although I did put in a complaint to National Express about the situation and all I got was a reply telling me that the vehicles I mentioned - including their registration numbers - didn’t exist on thier records therefore must not be National Express coaches LOL how do they explain the fact that they had the usual ‘National Express’ logo all over the sides of the coaches and the 540 London as they usually do in the front idiots!! Anyway.... Enough of that lol). Also where we were living it wasn’t all that safe for our little boy especially now he is toddling, being on a main road and all that, and there are other reasons we weren’t happy there too but I won’t go on. Anyway, where we’ve moved to now is much nicer, much quieter, we have a lovely garden and our own drive. There’s even a lovely little park next to the house for Daniel to play on which is great, and he loves it so far.
Also since we moved, Daniel has celebrated his first birthday which was lovely. We had a combined birthday/housewarming party for him at our new house and all our family and our good friend Joanna joined us to celebrate. Everyone had a good tie especially Daniel which is the most important thing.
Hopefully it won’t be too long before my next entry. Until then..... Thanks for reading
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