Posted on Nov 19, 2013 by under Leave a comment
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So today I had my 3 monthly EB Clinic appointment which
I’ve been dreading for a while now for a number of reasons. Firstly because it is such a big day and involves a skin check which I just hate so much. But this was to be the first EB Clinic without my nurse Lesley. No matter how bad the skin check or having biopsies was Lesley would always be there to make things better.
Today there was a new nurse Margaret, and while i was unsure of what this ‘New Lesley’ would be like, I’m really pleased to say that she is lovely and maybe clinic won’t be so bad after all. Don’t worry Lesley, you will NEVER be forgotten and Clinic will never be the same without you!
As it turned out the skin check went well and I didn’t need any biopsies which was a plus. I also had another heart echocardiogram am so happy that everything is still back to normal after the problems I had last year!
All the doctors were pretty happy with how things are going at the moment so hopefully it stays like that! Unfortunately we weren’t able to see my renal dr so I can’t update you on the kidney side of things but I will when I know more!
Anyways I’m beat so until next time….
Cya!Posted on Sep 2, 2013 by under Leave a comment
Recently I had the pleasure of being interviewed by the lovely Jessica Teni, Editor of TopShelf Magazine about my experiences living with EB in a society that is preoccupied with vanity and body image. You can read it below and of course over at the wonderful TopShelf Magazine
Every person’s pain is relative to what they know, though if you’re like Nikki Howe and have endured a lifetime of illness and constant medical care, society’s constant aeration of ‘first world problems’ can feel at times, infuriating or just plain upsetting.
Nikki Howe is 26 years old. Her life problems unfortunately do not revolve around skin blemishes, fashion dilemmas, career options or whether or not she can muster-up the courage to post a cosmetic-free ‘selfie’ for the next superfluous Twitter campaign or Instagram photo challenge.
Nikki suffers a rare disease called Epidermolysis Bullosa (EB). This disease causes her skin to blister with the slightest touch. It’s a painful skin condition that has been likened to living with third degree burns that must be bandaged and dressed every single day of their lives to medicate and protect the wounds.
“When I was younger, I always thought I would have a normal life. I had always thought that EB was simply an external skin problem and that was it,” she explains.
It was in her later teen years that her health began to steadily decline and is currently undergoing dialysis after being diagnosed with kidney failure as a result of EB-related complications.
Just like the rest of us, this 26 year-old keeps active profiles on a few different social media pages including Facebook, Twitter and Instagram, etc. Just like the rest of us she is also subject to reading so-called ‘first world’ problems of many people that she follows.
Though real frustration was felt from a particular campaign that encouraged women to post ‘selfies’ without make-up to promote body-acceptance and to allegedly show youngsters what a ‘real’ person looks like without photoshop. This campaign prompted a response from Nikki that challenged people, not just women, to stop being so superficial.
“Obviously, I realize it is important and fun for girls to dress up and feel good, and I’m sure that I, too, would have those superficial concerns if I didn’t have EB, but having the experiences I’ve had, I’ve come to see that there are other things much more important and I wish other people could see that too,” she says.
Nikki says she feels frustrated by the fact that in most cases there is nothing physically wrong with the every day person, and that leaving the house without make-up, or taking a ‘selfie’ without make-up is a non-issue.
She takes aim particularly at the stem of the issues, companies that convince us that the most important thing is to look as close to perfection as possible.
“Proactive ads seem to play on my TV 24/7,” she explains, “the message seems to be that if you have even the slightest break out on your face, then your life isn’t worth living.
“I totally get that its nice to look and feel your best, but these ads make it seem like a person is unable to achieve their life goals or live life to the fullest all because of some spots on their face.”
She admits that this struggle for perfection is such a foreign and unattainable concept to someone who’s struggle is to simply stay alive.
It is her hope that others could consider their blessings and gain a better perspective of a bigger picture.
Some of the things that Nikki wishes she were able to do would seem like a mundane part of daily life to the every day person.
“I remember when I was younger, my biggest problem was that I didn’t have any fingernails to cover with sparkly nail polish!”
She recognizes that over time and with the worsening of her condition, her wants and wishes have changed.
“When I began losing my hair I was jealous of all the girls who were able to style theirs, but it is not until you lose something like the ability to walk or have two functioning kidneys that you realize that the superficial things don’t matter.
“I wish I could have all the basic life experiences that most people my age are having, you know, a first boyfriend, going to uni, getting a job and moving out, learning to drive.”
Right now though, the biggest wish on Nikki’s list is to hold a clean bill of health and not to have live a life that is dependent upon dialysis every night.
“I guess I just wish that people would stop and think about how lucky they are,” she says.
What is Nikki’s advice for others?
“Don’t take your health for granted because you never know when things can change. Worry about actual bad days rather than just a ‘bad hair day’”Posted on Aug 29, 2013 by under Leave a comment
Well it’s a been a while since I’ve updated you all on the world of EB but I’m pleased to say that there has been a long awaited and much needed development.
You may be surprised to learn that because of the rarity of EB, there really aren’t any nurses who are trained in, let alone even heard of EB. Therefore up until now children (and adults) with EB have had to rely solely on their parents/families to do the gruelling daily baths and dressing changes. Well now for the first time ever and with thanks to a wonderful charity called The Little Heroes Foundation, an In-Home EB Nurse Program is being piloted giving much needed care and respite to EB families across Australia.
Here is a little on how the program is to work: (Taken from http://debra.org.au website)
How does the LittleHeroesCare In-Home EB Nurse Pilot Program help DEBRA members?
Due to the rarity of EB (which, based on worldwide figures, is only seen in 1 child for every 17,000 born) many nurses have not come across the disease or received training in the best ways to care for children living with EB.
The LittleHeroesCare pilot In-Home EB Nurse Program is the first of its kind in Australia, funding specialised training for carefully chosen nurses and employing them to work on a regular, ongoing basis with children who are living with EB. Trusted relationships are built between the child, their family, and the allocated nurses and each nurse understands the unique features of their patient’s condition, and how to best minimise the pain and trauma associated with their dressing changes.
Through the pilot program, children living with EB are visited in their own homes, by their carefully chosen nurses, for up to three hours 2-3 times per week to assist with medicated baths and dressing changes. Not only does this provide parents with much needed respite, but if gives them the peace of mind that their child’s wounds are being regularly monitored by trained nurses for early signs of aggressive squamous cell carcinoma.
Families involved in the pilot program have reported improved quality of life with a greater balance of family life versus managing their child’s medical needs. Another invaluable result of the pilot program is seeing parents able to return to being much needed ‘mums and dads’ and that all important safe-haven for their child, as the In-Home EB Nurses take over the unavoidably painful and traumatic medical treatments.
I’ve had my nurse for about 5 weeks now. He is a male nurse and he comes for 4 hours once a week on alternate Saturdays and Sundays. He gives me a full dressing change (arms, legs and torso) which gives my parents 4 hours to go out and one whole day a week of not having to do my dressings.
Not only does this program give my parents a break but it is also a big step for me because it is the first time in my 26 years that I have let anyone other than my family (except Lesley) do my bandages. It’s only a small step but it could mean a little more independence in the future. Now if only we could find someone willing to learn how to hook and un-hook me from the dialysis machine…..or better yet a transplant?
If you would like to donate to either Little Heroes Foundation or Debra Australia please follow the links below!2 Comments
Been experimenting with a couple of drawing/painting/art apps on the iPad and thought I’d post some of my crapworks.
These are 2 watercolour rabbit paintings using Paper 53 app
Posted on Aug 18, 2013 by under 2 Comments
3 attempts and 10 tubes of blood later…
Posted on Aug 12, 2013 by under Leave a comment
So this week I got the worst news ever! I’m sure you all know of my awesome Adult EB Nurse Lesley from earlier blog posts. (She’s usually the crazy one lying on the floor in the front of the photo or injecting a giant plastic syringe into my knees!).
Well my friend Stevie and I received an email from her that said she was leaving and would no longer be our EB Nurse at hospital and clinic. I’m sooooo upset over this news I can’t stop crying! Lesley is like an angel to Stevie and I, like a second mum almost! Whenever we have to stay in hospital it was always reassuring to know she was just across the road and if we needed help she’d be there as soon as she could.
Like earlier this year when I was in ICU with Pneumonia and couldn’t speak because of the breathing tube, I remember feeling helpless and when Lesley would come she would just hug me and I’d just cry. I always looked forward to seeing her walk in the room.
It makes me so sad that Lesley is leaving the little Derm Family at St George. EB Clinic is gonna be even crappier now…if that’s even possible
I am determined to stay in touch though! Lesley I don’t want you to just disappear! You, me and Stevie shall all have girls lunch together!
Posted on Jul 31, 2013 by under 1 Comment
So if you follow me on Twitter you will know that the battery in my beloved iPad 2 died. Now I "could" just take it to an Apple store and get it fixed….OR
I could buy a shiny new one!
What to do, what to do? YES, That’s it!
ASK TWITTER! (Thus taking all guilt and responsibility away from myself!)
Twitter, give me an excuse as to why I should buy a shiny new iPad mini instead of getting my current one fixed!
— Nikki Howe (@Nikkablogger) July 17, 2013
And after sending out the tweet above, a consensus was made by the all knowing people of Twitter. Responses included:
@Nikkablogger because it is shiny and new
— David Fogarty (@davejem) July 17, 2013
@Nikkablogger it’s shiny get new one
— Ivy Gardiner (@dolldolldoll) July 17, 2013
@Nikkablogger When money is no problem; go for it, buy a new one….
— Hetty Jungschläger (@HettydeHeks) July 16, 2013
— Judy Charlton (@hay_jude) July 17, 2013
@Nikkablogger so I can have your old one?
— Clare Holland (@clare__holland) July 17, 2013
And thus, a new iPad Mini was purchased. True Story!
Thanks Twitter!Posted on Jul 22, 2013 by under Leave a comment