Why do you blog?

I have friends and family who are still confused by my relationship with the internet, many feel I over share a little and when I look back some of the topics I have covered in almost three years I can see how this could be justified.  In retrospect I may not have needed to write a entire post dedicated to my bikini line and from reading old posts I am seriously worried about my addiction to Spanx.

However whilst this little corner of the world wide web has allowed me to try and make people laugh it has also carried me through some really tough times and it has become my voice to try and help other people recongnise signs of Hip Dysplasia, Epilepsy and most recently Type 1 Diabetes.  I have met some wonderful people along the way, not just in the UK but from all corners of the world, but is was only really today that I discovered the best ever answer to the question,

Why do you blog?

The answer came into my email, from someone I have never spoken to before and it came with a subject header of…

I think you may just have saved my daughters life

With the senders permission I have copied the content into the blog with the hope that it can help increase more awareness about Type 1 Diabetes and help another family further down the line.

Dear Jane,

I think you might just have saved my daughters life.

Let me explain,  (Its very long you might want to make yourself a cup of tea or something !) several months ago I was blog hopping and I came across the MADS website and from there started following your blog.  I read about Twin Girl and her Type 1 Diabetes, and I was both shocked and amazed at her story, your story.  I read through all of your old post and nodded my head in agreement at so much of what you have written, I laughed out loud and made my husband and friends listen as I read out extracts !  

 But then your blog became more than light entertainment.  Like you I have twins, they are 6 years old, I also have 2 older daughters.  Twin 2 has had ongoing difficulties at school since getting the flu in 2010, tests and more tests revealed nothing and our frustrations continued as she hasn’t simply caught up or grown out of her problems as it was suggested she might. 

To cut a long story short, after taking a break from hospital tests and sitting back to wait and see, we went back to our GP and had Twin 2 referred back to our wonderful Community Pediatrician who agreed that things seemed to have developed and that we should have an ambulatory EEG as she thought our little girl was suffering from Myoclonic Epilepsy.  We had the EEG and then we waited, and waited and when I could bear the waiting no more I phoned the Pediatrician and she told us that the EEG did confirm that our daughter did have Epilepsy and that it was serious enough for her to require medication.  We didn’t get the full details but we were made an “urgent” appointment for 3 weeks later.   Although we knew this was a probable outcome we were pretty devastated, we needed a break and decided to book a holiday.  

One week later we took our girls to have their passport photos taken and there in front of my very eyes stared back three healthy happy little girls and one shockingly gaunt looking little girl.  Alarm bells started to quietly jangle, I looked more closely at my little girl and worried that her clothes were falling off her; maybe she had had another growth spurt?  She had a bit of a tummy ache and was drinking a lot and weeing a lot, maybe a bit of a water infection?

I thought maybe this whole Epilepsy thing was making me paranoid ?  I couldn’t settle, it was Sunday evening and I asked friends what should I do ? I grew more certain that I was past the paranoid mother stage, there was surely something really not right with my little girl.  I came back to your blog countless times, read up the symptoms of Twin girls Diabetes, looked at those numbers, “between 4 and 8” and I decided first thing on Monday morning we would go to see our GP.  My daughter went to bed but still I worried, my friend reminded me I had a Blood Glucose Monitor at home and told me to check her Blood sugar levels in the morning.   I googled, I can’t remember exactly what but I came across the story of Mary Kathryn St.John, I was worried but she hadn’t been sick, we would definitely be going to the GP in the morning. 

I went to bed and lay awake worrying, not more than 20 minutes later my daughter threw up everywhere. 

I knew. 

I put her in the bath to clean her up whilst my husband cleaned up where she had been sick.  We had to extract Twin 1, her sister from the mess.  Once both of the girls were snuggled up on the sofa I tested Twin 2’s Blood sugar levels…

23.5 !!

I called my parents, usually me or my husband do the hospital run, the other staying at home with the kids, this time I knew I needed him to come with us.  I phoned NHS direct , the first person listened and then put me through to the Nurse, the nurse listened and then put me through to the Dr, the Dr wanted to know why I had a Blood Glucose Monitor at home, fearing he would think that I was attention seeking, Jeremy Kyle watching, drama queen I was on the defensive, I needn’t have been – he told me he thought that I was amazing, that I was exactly right to be concerned and that yes it did look like we were dealing with a child suffering from Diabetes.  He called our out of hours GP service to arrange for us to be seen.  

The out of hours GP called and told us to go straight in (the out of hours service is based in our local hospital) we set off with a rather annoyed child who didn’t want to go to hospital because she felt fine.  There was no wait at the out of hours GP service we were seen straight away, a wee sample was tested, I held my breath, maybe it was a severe urine infection, maybe a viral infection,  but nope we were told again it is most certainly Diabetes.  We were sent up to the childrens assessment unit in the Hospital where they tested her Blood Glucose levels again..

23 –  my monitor at home wasn’t broken, I hadn’t carried out the test wrong my little girl was really ill.  

We were sent up to an assessment ward where a inexperienced junior Dr traumatically placed a cannula in my brave little girls hand, the pain was bearable but the sight of so much blood leaking everywhere was too much and she began to sob that she wanted to go home now, please.  I cuddled her hiding my own tears and soon, desperate for sleep she was allowed to rest on her bed whilst they waited for the results.

A kind Doctor came to chat to us, told us we had done incredibly well to catch it in time and asked if I could go through the whole story about why exactly I had a blood Glucose test kit at home, each time I was asked I was ready to be on the defensive, each time my story was met with high praise for acting so quickly and for knowing the signs, each time I told them how if it wasn’t for your blog I wouldn’t have had a clue what I was looking for, I would most certainly have put it all down to a growth spurt and the newly confirmed Epilepsy.  I have no doubt your blog really did save my daughters life. 

We spent a week in hospital; I expect our own experience was similar in many ways to yours in those early days.  We have struggled to get her levels down below 13, with a few 25’s along the way.  

“What was her last level ? ” precedes any conversation in real life or via text with my husband. We have studied labels, cleared already over crowded cupboards at home to fit  in a new stash of medical supplies, and finally fingers crossed things seem to be settling down.  Today she has gone back to school for the first time since her diagnosis. As a WAHM I am now struggling to catch up on missed deadlines whilst juggling all that is involved in having a child with Type 1 Diabetes and Epilepsy. 

In the early days (ha we were only diagnosed just over 2 weeks ago, early days ?!!) I was comforted by something that you wrote on your blog “It changes everything and nothing at all”  .  I have cried only the briefest of tears, maybe more will come, but for now I am in coping mode.  There is nothing else for it, we have to get on and deal with this situation that we now find ourselves in.   We are working on finding our new normal and we are getting there one day at a time. 

So from the bottom of all our hearts, thank you for sharing Twin girl, Mollys story.  

Words don’t cover how touched I was to get this email, and the perfect answer to why I blog.

Much love to my new friend and her amazing family.