After abandoning my blog for 19 days, I felt I had to address the emotional upheaval and grief that has tormented me this November.
Firstly, I must thank my brother, Janek, for taking hold of the reigns and stepping into the shoes of a writer who focuses on issues concerning type 1 diabetes. He is a truly wonderful person-if you would like to learn more about Janek and his adventures, his blog, The Engineer Also Muses is always an excellent read.
This has been our November.
1November 2008: Lance has shared his life with type 1 diabetes for six years. The first two “anniversaries” I was a sobbing mess. The following two, I made sure that we paid homage to the gift of insulin by having a small celebration. This year, the words, “When he’s been diagnosed for over five years, you’ll need to keep your eye out for complications” resonated through me each time I inhaled, and exhaled. We made a very bland vanilla cake. Balloons and celebrating the worst day of my life weren’t appropriate this year.
1-19 November, 2008: Lance’s symptoms of hot, burning feet at night have not improved or slowed down. Our GP wrote a referral to a Podiatrist specialising in Diabetes Complications. I was able to get Lance and appointment very quickly. We are in a ridiculous sleep pattern at the moment, with Lance unable to sleep until close to midnight, and struggling to wake up by 8.30am the next morning in time for breakfast and school. Not to mention my glassy eyes with unflattering bags big enough to accommodate an around-the-world trip. I have found myself falling asleep at my desk and even while waiting for the oven bell to sound. I don’t know how horses can bare to sleep standing..
We had an early appointment on a Monday morning. Despite my fatigue, I actually took half a valium tablet before we left, because despite EVERYONE telling me that there was no possible way that Lance could have Peripheral Neuropathy, my gut told me otherwise.
Gut was right.
Helen, the podiatrist, was actually two years my junior in primary school. Once we established that we knew each other as children, I told her about the past six years living with Diabetes, and the incredible year I got to spend with Lance before his diagnosis.
She began her examination. (As far as Lance knows, all kids have to have their feet checked to make sure they are growing properly. I don’t want to mention complications or anything negative until the most important day of the year is over.)
November 23-Lance’s 8th birthday.
He climbed up on a modern black leather chair that was operated by remote control. He seemed suitably impressed. Helen asked him if he would mind wearing a blindfold, while she conducted the “prick test.” Lance, ever the perfect patient, nodded enthusiastically and held out his hand for the eye cover.
Helen examined Lance’s feet, and asked him to point to where the heat mainly came from.
“Do you get pins and needles often, Lance?”
“YEAH! Everyday.”
“When you’re playing on the floor or sitting with your legs crossed?”
“Sometimes when I’m on the floor playing Lego, other times when I’m at my desk doing homework. It just depends, really.”
“Okay then Lance. I want you to say “YES” or raise your hand when you feel a little sting. I’m just going to use something that looks like a nail file to see how sensitive your feet are.”
“Okay then.” He sat back in the chair, totally relaxed. I was on the end of mine, almost hyperventilating.
Helen began prodding the sharp corner of a file into the soles of his feet. She moved to the top of his foot, testing each toe, moving up to the ankle, and then slowly progressing up his calf. When she got to behind his knee, he was startled and let out a loud, “YOW!!!”
No feeling in his feet….
No feeling in his legs…
Helen couldn’t quite look me in the eye. She picked up a stainless steel tool that resembled a spiked vibrator. She went over all of the same spots that she did with the file. This time, he could feel the deep vibrations, and he had his hand up the for almost the entire part of this examination.
Helen pressed a few buttons on the chair, so that Lance was sitting upright. She removed his blindfold.
She sat down on her chair, and clasped her hands together.
“What we’re looking at is Peripheral Neuropathy. I used a file on his feet and legs that I would use on an adult, so I was expecting him to be hollering. The good news is that he has feeling deep in his feet, as he responded very well to the vibration test. I’m going to conduct a doppler test, which basically means that I will be listening to blood flow in his feet to make sure it’s nice and strong.”
Peripheral Neuropathy. I was still in deep shock at watching my son completely unresponsive to having a sharp file dug into his flesh.
She smeared some blueish gel onto his ankles, and then endeavoured to find the pulse in his feet. A slight frown appeared on her forehead. My stomach was churning over and over, I had a pulse pounding away in my temples. Finally, she found a faint pulse close to his ankle.
“That’s a lot deeper than I would like it to be. It’s quite faint, and..well, we’ll do the other foot.”
What I had been secretly fearing was unfurling right before my eyes.
The pulse in the other foot was much easier to find, and it was strong, and the bloodflow was normal.
I asked what we could do about the symptoms. She said that she would write to Lance’s endo and ask whether he would prefer Lance to commence oral medication or to use topical preparations.
“I don’t want to scare you, but there has been damage done. The good news is that Lance spoke up early, and you pushed for a podiatry assessment, and now that we know that he has PN, we can work at halting any further damage, and he’s at such an advantage being on an insulin pump.”
“I need you to be totally honest with me, Helen, I want to know everything, so I can learn about the best way to help him.”
“I haven’t had a lot of experience in paediatric podiatry, with diabetic complications, I mean. I have some phone calls to make to your team, and some letters to write just confirming my findings.”
I gave her the phone numbers and addresses that she would need to pass the news onto Lance’s Diabetes Educator and endocrinologist. She clasped my hand.
“I am so sorry, Kate. It’s not the worst news, but it’s certainly not what you want to be dealing with at this age.”
Precisely.
We are now, more than ever, working hard to stay in the 4-8mmol/L range.
I have become even more of a Shoes-Outside-Always-Nazi, so much so that I loathe the sound of my own voice. I am constantly sweeping up small, sharp pieces of Lego. I loofah Lance’s feet in the shower every night to improve circulation. I massage with such force that my own hands feel bruised the next day. If I massage his feet the way I used to, he can’t feel it anymore.
Lance is taking a Vitamin B1 Supplement (Thiamin) which is supposed to allieviate the unpleasant sensations that accompany PN. I have to wait for his endocrinologist to return for holidays before I get his verdict about treatment.
I will write more about the reactions I have received about the diagnosis in my next post. I really just wanted to let people who have been kind enough to enquire about Lance know that despite my initial devastation, I’m trying to think of it as just an area of his diabetes care that I’m tightening up on.
The Staff at Lance’s school all wore blue on World Diabetes Day at his request. He wrote an email to his teacher, letting him know that it wasn’t a day for donations, but a day to create awareness.
My good friend, Amy Leverington, was chosen to climb Mount Kosciuszko (Australia’s highest mountain) on the morning on World Diabetes Day to watch the sun rise. Amy has achieved so much already, through putting together her funky anime blood sugar diaries, that have no smacks of Diabetes or bsl readings about them whatsoever. She is currently working on a unisex pump diary-stay tuned!
Our next big appointment is at the end of November-we have to pay a visit to an opthamologist.
My brother, Janek celebrated his 23rd birthday on the 16 November. I’ve already wished him a happy birthday, but I’ll do it again in writing..HAPPY BIRTHDAY, JANEK!! You can pop by The Engineer Also Muses and pay your regards if you care to do so!
One year ago, my dear friend Joel, who lived a life riddled with chronic pain and depression, passed away in his sleep at the age of 32. The pain of his absence is so strong, yet I experience a great sense of relief knowing that he never has to endure a painful, difficult day again.
Joel was buried on my the day that my own angel came into the world eight years earlier.
Lance, my only child and best friend celebrates his 8th birthday on Sunday.
We’ll be sure to make the readers who have grown to admire Lance’s bravery and wisdom part of his special day, by having the birthday boy in person post about his special day.
November will always be rollercoaster of emotions. With my son’s birth, my life became fulfilled and watching him live was simply an extraordinary experience.
With my son’s diagnosis, he was robbed of his innocence and freedom. Again, my world had a huge shift, and it still leaves me rattled on the odd occasion.
And again, the new diagnosis of Peripheral Neuropathy in November. We arrested the condition early, but it has left me so exposed and aware as to the impact type 1 diabetes can have on the body. It’s a very hard concept to address, especially when you have others around you suggesting that it couldn’t possibly be Neuropathy. I would do anything to say “It’s all been a huge mistake! I was wrong!” However, as a mother to Lance, and to his diabetes, I just knew. We went through enough wild fluctuations when he was three/four to know that his entire body had worked very hard to keep functioning for that very difficult stage.
Also, I am waiting for the return of my laptop. It is in Sydney, currently being repaired. I was lucky enough to borrow one overnight so that I could catch up on November.
I have all of my attention focused on The Birthday. I did good with getting what he wanted. I need to see the rapture in his smile to help me begin to heal.
Why did the insulin die in my pancreas? 