This blog means the world to me. It has helped me through many crises and been so therapeutic. But
in the last two weeks I have found it hard to write and that in itself is not too unusual for me. You see when Cowden's syndrome (CS) rears its ugly head, it drains me physically and mentally. People with a chronic disease will understand what I mean. It sometimes takes only a little bit of extra stress to render you incapable of much. And that's how its been.
It started with my eldest daughter visiting her neurologist and with him deciding that for health and safety reasons she needed to stop driving for the next 12 months. We suspected that this was coming but this did nothing to prepare us both for the shock when it arrived. My daughter was visibly shattered and I didn't blame her one iota. She is 22 and to lose your driving freedom at that age is a terrible thing. It makes you dependent on others at a time you crave independence.
But for those who know my daughter personally, you won't be surprised when I tell you that within a couple of hours, she had found positives in the situation. She was going to get fit walking. She was going to save lots of money on petrol and parking. She wasn't going to let this stupid disease win. How she always manages to find the good in every situation amazes me. It is a real gift. I am so proud of the woman she is becoming and how she steadfastly refuses to bow to CS.
Me on the other hand not so good. Your first reaction as a parent is to help, support and shield your child. It's an automatic reaction and God help anyone who gets in the way. I'll drive you. I'll be your personal chauffeur. You won't be disadvantaged or miss out, I promise. And then reality stepped in and yelled for me to stop it. I live 4 1/2 hours drive away. This was not always going to be possible and she would have to manage and sort it out herself most of the time. I was gutted, but I knew she would manage.
With all the above going on in the background, it was also time for two specialist appointments of my own. Let me tell you its been an expensive week! First stop the endocrinologist resulted in a blood test, a urine test and a bone scan. The bone scan lady looked excited that it was my first time. Please! Some people need to stop trying so hard. The second visit to the plastic surgeon resulted in removal of two lumps under a local anaesthetic. One of these was more like a growth than a lump and was above my lip. After months of people asking me what it was and my mother telling me to wipe my face after every meal (I'm almost 50), I decided to have it removed. Now it's gone people are still asking me what is wrong with my lip, but hopefully with time it will fade. Next week there will be more of the same. There will be more lumps removed, this time under general anaesthetic. Such an exciting life I lead...not. But at least no more pain for a while.
I spoke to a colleague today who has known me a long, long time. She asked how we were all going and I told her the truth that the last two weeks had been hard. We both agreed that despite the road blocks we have to navigate, life goes on, because there is no other choice. You wake up, put a smile on your face and get on with it. I used to have a sign in my classroom that the kids and I came up with. It said get over it and get on with it. And that's what we do. Some days having a chronic condition is more than I can bear. On those days I sleep, watch Netflix, cook and read. On other days, you throw the doona off and make yourself get out of bed, because if you don't this crappy condition wins. And we couldn't have that could we!
If you are someone going through a hard time, I hope in some way my mantra helps.
Till next time...xxx
ST
Wednesday 1 June 2016
Tuesday 17 May 2016
DEAR BOY
DEAR BOY
You won't remember me, but I was the substitute teacher in your class the other day. I stood there
watching you and your mates settle in to some work and listened to all the usual chatter about how boring school was and where exactly was your "normal" teacher. Every time I hear that phrase I smile and imagine I've grown horns, or better still another head, as I'm obviously an " abnormal" teacher.
Unlike your friends you seemed to be having an important conversation, so much so I didn't stop you. I mean it did sound important when you told your friend
" If you're not happy about yourself, you've got to change".
Your wisdom bowled me over. Your friend is very lucky to have you on his side.
While you all worked quietly ( surprisingly), I kept thinking about what you had said about not being happy and needing to change. And as I thought of many different situations in the lives of myself and others, I realised that the advice was good but needed more depth. It's not enough to realise you've got to change. You also need to know how to change and when to change.
Many years ago I made a very short bucket list. It had two goals on it, well maybe three. They were:
You won't remember me, but I was the substitute teacher in your class the other day. I stood there
watching you and your mates settle in to some work and listened to all the usual chatter about how boring school was and where exactly was your "normal" teacher. Every time I hear that phrase I smile and imagine I've grown horns, or better still another head, as I'm obviously an " abnormal" teacher.
Unlike your friends you seemed to be having an important conversation, so much so I didn't stop you. I mean it did sound important when you told your friend
" If you're not happy about yourself, you've got to change".
Your wisdom bowled me over. Your friend is very lucky to have you on his side.
While you all worked quietly ( surprisingly), I kept thinking about what you had said about not being happy and needing to change. And as I thought of many different situations in the lives of myself and others, I realised that the advice was good but needed more depth. It's not enough to realise you've got to change. You also need to know how to change and when to change.
Many years ago I made a very short bucket list. It had two goals on it, well maybe three. They were:
- To get back to a normal weight.
- To have breast reduction ( yes, first world problem to some, a real load to carry for me).
- To spend time in Italy learning to speak Italian from the locals.
Now its obvious that the first two examples were classic examples of not being happy with myself and needing to make changes. But apart from saving the money for number 3, I didn't know what I should be doing to make the necessary changes for any of them. I simply had no idea when or how to start.
In the end life decided to interfere and hijack my bucket list. How, when or why simply became irrelevant.
In the end life decided to interfere and hijack my bucket list. How, when or why simply became irrelevant.
In my early forties I got breast cancer and ended up with a double mastectomy. Be careful what you wish for - I got my breast reduction. Towards the end of my forties I chose to have bariatric surgery. I got my weight reduction, but almost died in the process. Was I happy to tick both items off my bucket list? Well, no. I found no satisfaction in having the change process taken out of my hands or come to think of it the near death experiences.
So, maybe dear boy, what you should have said is " If you're not happy about yourself, make changes quickly, before " life" intervenes and takes you down a pathway you never intended to be on". It's obvious that I'm not very good at taking my own advice. So I've been thinking that because you're so
wise and you're often sitting on that computer, maybe you could put together a " how to" guide to help me. I'm going to give this " change" thing another go. I have recently extended my bucket list and I need to make some changes to achieve everything. Then I think I'll be very happy. Well I hope so anyway.
So, maybe dear boy, what you should have said is " If you're not happy about yourself, make changes quickly, before " life" intervenes and takes you down a pathway you never intended to be on". It's obvious that I'm not very good at taking my own advice. So I've been thinking that because you're so
wise and you're often sitting on that computer, maybe you could put together a " how to" guide to help me. I'm going to give this " change" thing another go. I have recently extended my bucket list and I need to make some changes to achieve everything. Then I think I'll be very happy. Well I hope so anyway.
Let me share my newly extended bucket list with you:
5. Cuddle a chimpanzee. (I've wanted to do this since I was a child).
6. Attend the Australian Rules grandfinal.
7. Cruise the Mediterranean and relax.
8. Make macarons like a pro.
9. Frock up for the Melbourne Cup.
10. Ride a camel or an elephant or both and overcome the fear of doing it.
Now, I've chosen carefully. Give or take an elephant in a mood or a terrorist explosion on my ship, I should be right. There should be no near death experiences here. And yes dear boy we will drive carefully and no we won't go if Collingwood is in the grandfinal...as if that's going to happen any time soon anyway !
So, will you help me? I have my goals, but I just need some ideas on how to achieve them soon, not in another twenty years. I'm getting happy just thinking about this all.
Have a good day! I'm off to look at travel brochures on Italy.
Regards,
The SubstituteTeacher
PS- Dear readers,
What is on your bucket list that you've been putting off?
What changes should you make immediately to reach that goal?
Have a good day! I'm off to look at travel brochures on Italy.
Regards,
The SubstituteTeacher
PS- Dear readers,
What is on your bucket list that you've been putting off?
What changes should you make immediately to reach that goal?
Labels:
bucket list,
change,
change now,
Goals,
life
Friday 6 May 2016
YOU HAVE BEEN WARNED
I'm watching an old movie where a man ( Mel Gibson) develops the ability to hear what women are saying " in their thoughts". It drives him insane and makes sitting in a meeting full of women impossibly confusing! He hears what women think. He reads their minds and sometimes what he reads is not what he wants to hear . The psychologist he goes to visit tells him he has a gift and may just be the luckiest guy in the world. It's hilarious. Imagine if men could read womens' thoughts, both good and bad. How much trouble could that get you in! For example, this could have been my week:
- Monday night on Qantas, flying to Perth, the guy in front of me might have "heard" this - " do you really need to recline your seat on a one hour flight loser. I can't eat my dinner because the tray is all wonky, thanks to your seat being reclined, you inconsiderate, *#%^*^ ".
- Tuesday at a hospital visit, the guy who eyeballed me in the car park would have got " steal my parking space and I will haunt you for the rest of your life" and
- Today - "pull your pants up, I don't want to see your jocks" and later " I wanted coffee so I wouldn't hit anyone. You made it so hot I can't drink it...you're in danger, mate!
Jokes apart, what would be the benefit of men reading women's minds and how could anyone consider that a gift? If my mind is typical of most womens' minds, then the gift would drive someone crazy, loopy and straight into an asylum. Reason - too many things are on my mind at one time. (Only another woman would get this).
See if you can follow:
Topic arrives in my head - Mother's Day. This then fires off many mini topics and links, so confusing and guaranteed to confuse any mind reading, male " listener ":
It's Mothers Day Sunday.
What shall I get my Mum?
Hope my sister's kids remember.
Must ask her about that dress I bought her.
Hope my red dress for party looks good.
Must work on menu.
Must go food shopping. We're out of fruit.
Fruit - full of sugar or healthy ?
Must make doctors appointment next week.
When are those results coming through?
Feeling a bit anxious.
Don't think about being anxious. You will ruin Mothers Day
Time from topic arriving to final link - one minute maximum.
Here's another :
Hungry
Cook dinner
Must go Woolworths.
Saw Liz last time shopped there.
Wonder how her mother is now.
Must ask Liz about shoes.
God my feet ache.
On my feet all day.
Teaching so tiring.
If that kid does that again, I'm going to scream.
That would be funny.
I wonder if " Big Bang" on tonight?
Must ask Mum.
Must ring Mum.
I'll make her stew for dinner. ( 30 seconds all up)
No folks, the ability to read these female conversations would not be a gift. It would drive males to an early grave as they tried to decipher the chain of thoughts and the oestrogen fuelled logic. In fact ( as a Public Health Service) you are hereby warned to refrain from analysing a woman's mind if you are a man. Do not attempt to cultivate this skill. Stay well away for your own health and well-being.
Don't say I didn't warn you!
Till next time...xxx
ST
No folks, the ability to read these female conversations would not be a gift. It would drive males to an early grave as they tried to decipher the chain of thoughts and the oestrogen fuelled logic. In fact ( as a Public Health Service) you are hereby warned to refrain from analysing a woman's mind if you are a man. Do not attempt to cultivate this skill. Stay well away for your own health and well-being.
Don't say I didn't warn you!
Till next time...xxx
ST
Monday 2 May 2016
MY 10 TIPS FOR SUCCESSFULLY RETURNING TO THE WORKFORCE
Making a decision to return to the workforce can be surprisingly easy, but actually returning to the
workforce and surviving...well that's another story altogether. This year, after an extended absence from paid work due to health issues, I returned to teaching. Here are my top tips for how I managed to do this successfully.
workforce and surviving...well that's another story altogether. This year, after an extended absence from paid work due to health issues, I returned to teaching. Here are my top tips for how I managed to do this successfully.
- Make a decision by weighing up the pros and cons. If like me you are getting tired of your own company and your bank balance is on a permanently critical level, this won't be too hard a decision to make. Once you decide one way or another, move on. Don't drive your friends and family mad with " should I" and " should I not".
- Once your decision is made treat yourself to some new clothes. I bought a few new items that I could mix and match to make a number of outfits. There was an obvious monetary expenditure involved, but it was worth it to feel professional and ready for action. I also bought some bright coloured items because they keep my mood uplifted and I've always believed students react positively to teachers wearing bright clothes.
- If you can afford it, treat yourself to a hairdresser. Have a colour, a trim or whatever you need that fits in with your budget. It's another way of being professional and ready for action.
- Get organised. My first few days I was diving into my bag for a pen or highlighter. It's too hard really to function like this in a classroom, so I bought a pencil case and got organised and now things are much better. I also bought a big tote bag to carry everything in from classroom to classroom. This is much better than trying to carry heaps in your hands.
- If like me you will be on your feet for most of the day, invest in the most comfortable shoes you can afford. Trust me on this. (OK, the boots I bought were not strictly speaking necessary, but my husband did ask me if I wanted something for Mother's day. That counts right?)
Tired feet - get it? - Prepare your food for the day at home in order to save money. If you must walk into work with coffee, use a travel mug and fill it up at home. You've gone back to work to make money so be careful of squandering it on little things you can do without. Same with lunches. I've started putting a small serve of the previous night's dinner away for lunch the following day. Again if you take food with you to work, you are less likely to head for the work cafeteria or nearby café for your food. Just one thing I learnt the hard way this week; put your lunch in a fridge at work. Quiche was not really safe to eat once it had sat in my tote bag all day!
- If you've been out of work for a while, things may have changed. In my case I have moved from a head of department position to a relief ( substitute) teacher position. That's a big difference. Accept the change and move on. There were good reasons for you being out of the workplace, and you may need to build yourself up to where you were before.
- If you've returned to your old workplace, you may find you are a novelty for a while. People ask questions; lots of them! Although in my case it's become a bit tedious, I grit my teeth and bear it. They are just being nice. Some are a bit nosy, but one thing I've learned in my time at home is that lack of company can do my head in. So even the nosy ones I smile at and talk to, because they're company. And here's hoping that I become yesterday's news real soon.
- Don't be afraid to ask for help. I have started doing some relief work at a different school to what I was used to. They have a totally different computer system and it totally freaked me out the first day. But I asked for help and within one day I had mastered what I needed to know. Another thing was the brand new photocopier machines. I am totally scared of these at the best of times, but especially so when the darn thing jammed on me. Just as I was about to find someone to help, I worked it out. Phew!
- Maybe it's because I have been through so much in my life, but at the end of each day I try and focus on something good that has happened each day, to give me the courage to go back another day. The something "bad" would be " you're not a real teacher because you don't work here all the time" or "what qualifications do you need to be a real teacher"? The something "good" occurred Friday after I complimented a sixteen year old boy on his work. He looked shocked, so much so the situation was almost awkward. Finally..." that's the first time ever that a teacher has told me my work is good'. Yes folks, that was my feel good moment for the day! Happy student. Happy teacher.
Hope you all have a great week and that if you're returning to work too, some of these tips help! Please feel free to add your tips in the comments.
Till next time...xxx
ST
Sunday 24 April 2016
DIARY OF AN INSOMNIAC REVISITED
Months ago I wrote about my challenges with sleeping. If you want to read that post, the link is http://lumpyone.blogspot.com.au/2015/08/diary-of-insomniac.html. Well, I'm devastated to report that nothing has changed since then...nothing...nothing...nothing.
Once upon a time in a land long gone ( teenage land), I used to sleep and I used to sleep well. I can still remember my mother's threats as to what she would do to me if I didn't get my sorry butt out of bed ASAP. I didn't care. I had a serious love affair going with my pillow and as in all love stories it was worth taking a risk.
Fast forward to my "almost fifty year old" body and an accompanying state of chronic insomnia and chronic exasperation. Maybe I should have heeded my mother. Is it possible I used all my sleep allotment in my teenage years? Welcome to another night in my life.
9.30 pm - Getting sleepy. Start thinking sleepy thoughts and muttering positive affirmations that I AM going to sleep and I AM going to sleep well (some bs I picked up somewhere about changing my thinking).
10.00pm - Get into bed and kiss husband goodnight.
10.05pm - Husband is asleep and emitting level 1 snoring.
10.10pm - Get out of bed as forgot to take medication and need to use bathroom again.
10.15 pm - Back in bed.
10.30pm - Hear a creaking noise. Worry that we are being broken into. For only the millionth time wish Harry (our dog who passed away 2 years ago) was still around. Run through what Harry would have done to any intruder caught on our property. Run through every break in story I've heard of in the last ten years. Note to self - get quotes on more security screens.
11.00 pm - Get up to investigate creaking noise. Its just the pergola creaking. Note to self to ring and get a quote on replacing said pergola.
11.30pm - Level 2 snoring has started from person next to me. I try to relax but it's impossible.
11.35pm - Lying on my back I feel like I am being suffocated by my reconstructed breasts. I feel like I suddenly have two cannonballs strapped to my chest. So I turn to my right and try to relax. Anyone who thinks fake boobs are desirable should try sleeping with them first.
11.36pm - What's that noise? Bug zapper in the kitchen has caught something and the whole house now smells of dead, burnt bug. Note to self - ask husband to move it so I can see the clock behind it. I don't want to touch the dirty thing.
12.00am - Watch clock tick over to a new day.
12.05am - Muscles in my leg start to throb. Maybe I'm imagining it. Maybe I'm dreaming it. Now is not the time for an attack of sciatica.
12.30am - Apparently yes, it is. Weird convolutions in bed as I try to massage my lower back as the physiotherapist taught me. Note to self - make appointment to see him.
1.00am - Get out of bed and go hunting for pain killers. Move every box in the cupboard to reach box of Nurofen at the back. Grab ipad and glasses and retreat to spare room bed.
1.30am - Wide awake so read Facebook, update blog, talk to people in America, check out Instagram.
2.00am - Tablets starting to work and feeling sleepy. Put ipad away.
2.15am - Need to use bathroom.
2.30am - Wonder who else is awake. Consider ringing father who undoubtedly is also awake.
3.00am - Still awake but at least not in pain. Think boring things to try and trick myself into sleeping. Go through personal medical history.
3.15am - Get up to find a blanket. Can't risk closing the window as noise would wake husband on other side of house and we couldn't have that!
4..00am - I think I must have slept.
5.00am - Hear husband's alarm clock. I refuse to open my eyes.
5.15am - Birds are making a racket. It's ok for them. They have slept. Still refuse to open eyes but note to self - consider investing in a cat to scare the birds away.
6.30am - Ignore alarm.
7.00am - Ignore phone call.
7.30am - Ignore another phone call.
8.00am - Ignore texts.
9.00am - Get out of bed. Good morning. Give me coffee and nobody dies...not even the birds.
Till next time...xxx
ST
# wishfulthinking #not me #wishitwas |
Once upon a time in a land long gone ( teenage land), I used to sleep and I used to sleep well. I can still remember my mother's threats as to what she would do to me if I didn't get my sorry butt out of bed ASAP. I didn't care. I had a serious love affair going with my pillow and as in all love stories it was worth taking a risk.
Fast forward to my "almost fifty year old" body and an accompanying state of chronic insomnia and chronic exasperation. Maybe I should have heeded my mother. Is it possible I used all my sleep allotment in my teenage years? Welcome to another night in my life.
9.30 pm - Getting sleepy. Start thinking sleepy thoughts and muttering positive affirmations that I AM going to sleep and I AM going to sleep well (some bs I picked up somewhere about changing my thinking).
10.00pm - Get into bed and kiss husband goodnight.
10.05pm - Husband is asleep and emitting level 1 snoring.
10.10pm - Get out of bed as forgot to take medication and need to use bathroom again.
10.15 pm - Back in bed.
10.30pm - Hear a creaking noise. Worry that we are being broken into. For only the millionth time wish Harry (our dog who passed away 2 years ago) was still around. Run through what Harry would have done to any intruder caught on our property. Run through every break in story I've heard of in the last ten years. Note to self - get quotes on more security screens.
11.00 pm - Get up to investigate creaking noise. Its just the pergola creaking. Note to self to ring and get a quote on replacing said pergola.
11.30pm - Level 2 snoring has started from person next to me. I try to relax but it's impossible.
11.35pm - Lying on my back I feel like I am being suffocated by my reconstructed breasts. I feel like I suddenly have two cannonballs strapped to my chest. So I turn to my right and try to relax. Anyone who thinks fake boobs are desirable should try sleeping with them first.
11.36pm - What's that noise? Bug zapper in the kitchen has caught something and the whole house now smells of dead, burnt bug. Note to self - ask husband to move it so I can see the clock behind it. I don't want to touch the dirty thing.
12.00am - Watch clock tick over to a new day.
12.05am - Muscles in my leg start to throb. Maybe I'm imagining it. Maybe I'm dreaming it. Now is not the time for an attack of sciatica.
12.30am - Apparently yes, it is. Weird convolutions in bed as I try to massage my lower back as the physiotherapist taught me. Note to self - make appointment to see him.
1.00am - Get out of bed and go hunting for pain killers. Move every box in the cupboard to reach box of Nurofen at the back. Grab ipad and glasses and retreat to spare room bed.
1.30am - Wide awake so read Facebook, update blog, talk to people in America, check out Instagram.
2.00am - Tablets starting to work and feeling sleepy. Put ipad away.
2.15am - Need to use bathroom.
2.30am - Wonder who else is awake. Consider ringing father who undoubtedly is also awake.
3.00am - Still awake but at least not in pain. Think boring things to try and trick myself into sleeping. Go through personal medical history.
3.15am - Get up to find a blanket. Can't risk closing the window as noise would wake husband on other side of house and we couldn't have that!
4..00am - I think I must have slept.
5.00am - Hear husband's alarm clock. I refuse to open my eyes.
5.15am - Birds are making a racket. It's ok for them. They have slept. Still refuse to open eyes but note to self - consider investing in a cat to scare the birds away.
6.30am - Ignore alarm.
7.00am - Ignore phone call.
7.30am - Ignore another phone call.
8.00am - Ignore texts.
9.00am - Get out of bed. Good morning. Give me coffee and nobody dies...not even the birds.
Till next time...xxx
ST
Thursday 21 April 2016
WE STRUGGLE BUT WE DON'T QUIT - GUEST POST 6
This is the last post in the series " We struggle but we don't quit".
Today we meet Sarah, a 29 year old nurse from Australia. Her endeavours to find proper care and advice for herself, and her ability to soldier on in the face of adversity, are truly inspirational.
INTRODUCING SARAH
What do you do next when all your fighting and pushing for your health doesn't pay off?
When I look back at the time of diagnosis all I did was advocate and fight for my health. The doctors had no answers. I had no answers and yet I knew that something was wrong. Something deep inside told me that something wasn't right with me, despite what people said.
Answers did finally come (a lot more then I expected) - multiple medical conditions meaning multiple doctors, tests and hospital visits. Cowden's was a diagnosis that I was expecting but never wanted. A high risk cancer gene meant I was at risk of a plethora of cancers, and in particular breast cancer. My mum lost her battle to breast cancer when I was 19. I wanted my journey to be different.
Despite the challenges I wanted to be proactive. I continued to research and be my own advocate. I quickly realised that the now infamous blank stare from doctors would become part of my life and that it would be my job to educate doctors and medical professionals. In a small part it gave me a purpose to my medical conditions and gave me control back over things I never asked for.
One of the most particularly frightening things for me was the prospect of breast cancer. With an 80% lifetime risk and given my family history, the risk was high. It is a difficult subject for me as I saw what my mum went through. When I saw changes in my scans last year, (although they were benign)it was enough for me to start asking about prophylactic mastectomy. To be honest the mere thought was terrifying, but I knew it was my best option to reduce my risk. So I went to my surgeon and got a referral to a plastic surgeon. I knew this would be an uphill battle as my surgeon said I was too young to have the surgery. I pushed ahead with the consult anyway. Even though I knew the chances were slim, it was still a shock to me when the plastic surgeon also said no.
I put all this time and effort into my health to be told no. I freely admit it threw me. I didn't know what to think. Was I wrong? Was he wrong? Why didn't he respect my concerns about my health risks? All I was told was to lose weight and it would make things better. I felt so useless and confused.
The question continued - what do I do next? After some thought I realised what I needed to do. Keep fighting. I did more research on my Cowden's , talked to people who might understand and developed a new plan with my conditions in mind. A new plan, new doctors, new hope. What I realised is that despite setbacks and "no" from certain people, I'm still my greatest advocate and to never give up.
----------------------------------------
I would like to thank Michelle, Georgia, Egbertine, Robert, Adrian, Tanya and Sarah for sharing their experiences with everybody. Together we will continue spreading the word and beating Cowden's.
Till next time...xxx
ST
Sunday 17 April 2016
WE STRUGGLE BUT WE DON'T QUIT - GUEST POST 5
Tanya, me and Roxanne 2014 |
I first met Tanya in an online Cowden's support group soon after I was diagnosed. It somehow helped to find a fellow Aussie in that international group and I was very touched by her words of wisdom and caring manner. Later Tanya, another friend Roxanne and I would start Cowden Syndrome - Australia, the first support group for those with CS in Australia.
Welcome to Tanya's story which begins with HOPE.
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The next 14 years for us were extremely difficult filled with much physical and emotional health challenges as well as many close family traumas. During these years I battled for answers to Hope's various health and physiological anomalies. Then when Hope was 8 years old after a great deal of searching she was diagnosed with PTEN HAMARTOMA TUMOUR syndrome or COWDEN'S SYNDROME (depending on which specialist you talk to).
I won't go into this condition as I’m sure you have read quite a bit about CS on this blog. What I will tell you is how it feels when you receive a diagnosis like this and how you can climb your way back to your new level of normality.
How would I explain rare disease?
Imagine you are taken and suddenly thrown into a foreign country alone. You don't know this country and you don’t speak the language. Everything you have known is gone and your life is altered dramatically .You feel lost, confused, scared,misunderstood, sad, alone and angry that this has happened. You try to talk to people and explain what has happened but no one understands you and you can’t find anyone like you. Even the people in charge
who should be able to speak your language are unable to help you and really don’t
understand.
From my perspective this was exactly how I felt when Hope was diagnosed and for many years after. Today I still have days where I feel alone and misunderstood, especially where doctors are concerned, but not to the degree I did in the beginning.
How did we find our way back and how do we cope???
Firstly, I searched for SUPPORT and eventually after much looking met some amazing people who understood what we were going through, helped us stay strong and understood our new life. I worked really hard to STRENGTHEN my health and Hope's. I overhauled our life by changing our diet and exercise. I also searched for ways to deal with the anxiety and depression we both deal with. Some were helpful, some not and yes these things made us very poor but it was all worth it.
We learned to use HUMOUR to deal with some challenging aspects of our lives. One particular way Hope would cope with all of her doctors and specialists was to give them
nicknames. We have had the Dark Lord (yes Voldemort from Harry Potter) . That nickname
was definitely well earned! We also have Mr Boring History Lesson guy and many more. Hope even jokes that she will call her first autobiography "101 ways to moon Dr Salmon" (the owner of the Dark Lord nickname). My motto is never to underestimate the power of HUMOUR but just remember at some really sad times, the humour won't be helpful. So know when to use it and when not too.
EXERCISE is a big one for us both and we have learned that a strong body means a stronger mind and for us it helps many symptoms of anxiety and depression. Hope has come so far in this regard. For a child who walked late and always fell over and had all kinds of coordination and joint and health issues, she is doing much better in this regard due to hard work and persistence. We go to a gym together now and I must say kick some fierce butt in body combat class. We love the empowerment it gives us even on our bad days. In past years we did some fundraisers and runs like the mother’s day classic. These
Mother's Day Classic |
Hope's favourite dance quote |
One more thing I’ve learned is that it's very important to learn to accept the bad days. Things in our life are certainly not easy and some days it's ok to feel sad or angry or just over it all. The important thing is to be able to get up the next day and keep going and try to move forward. If you have noticed I often refer to things we do as "us" not "I"or Hope. It’s because we are a TEAM. It may be small just being the two of us but we are very powerful if we work together. Our relationship is very important. Yes, we struggle terribly at times, we argue, bicker, yell, get angry and cry. But we are incredibly close, we have a very special relationship forged out of much heartache, persistence and hard work.
How do I see this new world now?
This new world I live in has become my new reality. I have learned to navigate my way around. I am increasing in confidence and I have become a great advocate for my daughter. Whilst I may not accept the suffering my daughter goes through at times, I am learning to cope with it and learning how to help Hope to cope also. The world of special needs and complicated medical needs is extremely tough at times but I’m learning the lingo. I’m understanding the language better and I’m learning where to go for help.
And most of all compared to my first years in this new world, I’m seeing flowers instead of weeds and sun instead of rain. Of course this is not a world I would have chosen. The pain of what we have been through and go through daily is still raw and difficult and seeing your child suffer is something no parent would choose, but I try to see the positive and if I look hard there is much positive to be found, even if some days the positive is the ability to enjoy
a nice strong cup of coffee
Being forced to become a single parent carer for a child with a rare condition and many other battles has completely changed my life. It forced me to face head the serious depression and anxiety that I’ve battled my whole life, as well as all my past demons. I had to fight hard to get myself well so I could fight even harder to get my child well and help her grow and cope with the problems she faces. I’m damn proud of how far I’ve come and it’s not often that I give myself credit. I’m certainly not perfect, I still struggle and still have bad and really sad days or days I want to hide away. But I don’t. I get up every day and keep fighting.
People say, you’ve done so well with Hope or Hope is lucky to have you. Well I can honestly say that I am extremely lucky to have Hope. She has taught me so much. I am incredibly proud and humbled that this kind, brave, funny, smart and truly beautiful soul is my daughter. This is the beauty of special needs parenting of any kind. We work as parents and carers to help our kids in every way possible, but in the process they help us. And in my case she saved my life and showed me the true beauty of life, what’s really important and I learned the healing power of unconditional love!!!!
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Not much more I can add except,
Till next time...xxx
ST
Not much more I can add except,
Till next time...xxx
ST
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