The Coins

I read a blog nearly 5 years ago and, that particular piece of writing has actually changed my life. My ability to be able to convey to my family and those closest to me, the way that I am feeling on any given day has changed my life. It gave me a framework, which on my worst days, I have clung to like my life depends upon it. Chronic illness is heartless and often times I have struggled to convey the true impacts that it has had on me. I have Celiac Disease and looking back now, I can see that it affected so many things about my life when I was growing up. As an adult it caused many problems and difficulties – until it was finally diagnosed and my diet changed. In more recent times, there was something profoundly wrong. Not just a little bit wrong, just an all encompassing, profound wrongness that I tried to articulate to my doctors. It took nearly 18 months but the diagnoses for that was accidentally discovered due to the timing of a blood test. I am learning to live with a really terrifying condition – that is severe in my case. Having to speak to my kids about things like, “if I happen to fall unconscious while I am out in public, this is what you do” and teaching them how to inject me has been frightening. I keep a stiff upper lip to them, laughing about it and we joke – but underneath it all they know that it is not anything to laugh about.

Anyway the writer of Coins was part of my life when I was a child. She was a glorious dancer, kind with her words and I so aspired to be like her. My earliest memory of her was as she danced across the stage in a church musical as Delilah – I thought she was the most beautiful lady I had ever seen. My first impression of her was accurate – she is a beautiful person and when I read her online piece about Coins years ago I took it to heart. You can read that article here. https://keepinmindproject.com/2016/02/09/coins/

Today I am clutching my metaphorical bag of coins very tightly and I am aware that it is not as full as it would usually be. Yesterday I did so many wonderful things – I did something that I have promised to do with my children for 10 years. I tested my BSL and determined that because I hadn’t eaten yet (my sugar drops dangerously low when I eat and drink) it would be safe for me to do a quick trip to the shops and get a few things. That number of things that I need always seems to multiply!! This shouldn’t be an exhausting exercise but it is. The whole time I felt a level of anxiety and I kept reassuring myself that I had my jelly bean stash and at the worst, my injection in my bag should it be needed. We were walking through Kmart, in search of the Bunch-O-Balloons that weren’t available a few weeks ago. There was great excitement when we found some and positioned right by them were tents. Justus (now 13) said to me “I wish we could go camping mum” as he wistfully eyed the tents. and I said “we can, pick that tent up and bring it with us!” He and Lincoln nearly exploded with happiness. But I could see the doubt in their eyes. I was determined that I would not disappoint them again. Big me said no to them constantly. It was easier to say no than to just admit – I cant do that because I am too big.

Moments like those are filled with so much happiness but also with bucketloads of regrets. I think about the things that my daughter missed out on and the mum that my older kids didn’t get to enjoy. There is no fixing that now, no coming back from it now BUT there is the fact that I am not that person anymore. So regardless of the fact that I was feeling unwell, I pushed through the things that I needed to do in the house. I had promised to bake Lincoln cookies so we did that – I know that doesn’t sound like a big deal but the mixing can be hard for me. I powered through that, got dinner ready – which is never a simple affair at our house. 2 lactose intolerant people, one Celiac and one Crohns Disease, meals are complex and everything is always from scratch. After that I did some other writing that I needed to get done and found myself sitting outside at 11:45am with everything completed for the day except the new task, erect the tent and make it habitable.

Thankfully the older boys helped with this and before long the tent was up, we hung string lights, put mattresses in it and the boys continued to enjoy it for a few hours more. Our Regional Covid restrictions have rolled back recently and we were expecting our household bubble person yesterday 😁😁 so we enjoyed time together and after putting the finishing touches on our evening meal, we watched a movie together as a family and then we retired to the tent. I had the best sleep I have had in years (literally) But the pressure of yesterday has taken a toll.

Today I am bereft of coins, I did not manage my energy well yesterday. Everything that I have to do today has gone by the wayside. I did not pace myself yesterday and I’m glad because I loved every moment of it but today I am exhausted and that is my trade/off. I have had three hypos where my blood sugar was under 1.7 and I am curled up in a ball on the lounge, pretending that the washing doesn’t need doing and that mount washmore will fold itself.

Tomorrow will be better and until tomorrow I will just be gentle with myself. Lots of Love Tash

Kindness

Today was hard. My blood sugar was low right from my first waking moment. I don’t enjoy checking it, I hate the smell of blood. It reminds me of my time in the ICU last year. I am reminded of blood transfusions and life saving surgery in the middle of the night. I can feel my pulse quicken and I know it’s PTSD. So I just sit still and I try to push the panic down. I haven’t actually found the words to say that out loud to anyone in my family yet. I know it means I’m a little bit broken so I just continue on with the test. 3.8 great 😔 my blood sugar will fall from there when I drink my coffee ….. it will fall when I eat or drink anything so the medication will need to do its job this morning.

As is his custom, Steve brought a coffee and my bariatric multivitamins in to our room at around 6:30 am and I sat – trying not to feel frightened by the appearance of my favourite beverage. My endocrinologist has explained a couple of medical conditions to me – we are treating one and it is everyone’s hope that I am going to quickly respond. So I drank my coffee. I think I do feel better than I was feeling so we are taking that as a positive sign. Taking so many tablets each day is a very strange and foreign concept for me and I feel the symptoms of hypo number 1 for the day coming on at 8:00am. I know what the feeling is now – I thought it was all just in my imagination, a lack of sleep, stress or a combination of all of those things. I was wrong – All along it was blood sugar. It has even had me casting my mind back to last year – wondering if that is really when all of this started … I think it probably was.

I seem to have muddled my way through the morning. Helping the kids when they need me, working and then having my doctors appointment. My GP, I am fairly certain, is some kind of saint. He always listens to me with compassion and totally agrees with my specialist that I must not be driving while my blood sugar is still prone to such terrible lows. This isn’t what I wanted to hear but I know it is the safe and responsible thing. This also means that we need another driver in the family pronto. Dr. Mendes has written a note to that effect. Now we just have to hope that Vic Roads will give Aramis the medical exemption that he needs to get his P’s immediately so that my inability to drive doesn’t affect everyone so terribly.

After that I was feeling fairly low, sad, like a burden and useless. These are feelings that I am not a stranger to. They were my constant companions when I was big. I hate it when they reappear now that I am meant to be living my very best life …. then there was a knock on my front door and a delivery from a lady that I have met via a Facebook page that I help to run. We are nudging 36 thousand members and I truly believe that they are the most inspiring humans I have ever had the privilege to know. Serving the weight loss surgery community is such a passion in my life and I do it because I love watching people’s lives transform. Anyway … the postie handed me the package and when I opened it I was just so touched that someone thought of me. I was even more blown away by the timing of the delivery.

Someone’s kindness changed my whole day. It reminded me of the goodness of people. 💞

Endocrinologist

Friday feels like it is looming large for me. It is a big day in my family for a few reasons but for me personally it is endocrinologist day. I am nervous. Mostly because I don’t want there to be something happening with my health but there is. Tonight we filled out the extensive amount of paper work that has to be filled in ahead of the appointment and I noticed that a squirmy feeling has started in the pit of my stomach. I always have that gnawing, unsettled feeling when I am meeting new specialists. Thankfully this is a referral from a well respected surgeon and I have a great deal of faith in his choice. When attending specialists appointments as a big person I experienced a lot of judgement. All of the many comments about my weight hit home and were taken to heart to the point that I still feel nervous even now.

Obviously my weight is not the issue here – well it is and it isn’t. The remedy for the excess weight (my weight loss surgery) may have been the trigger for whatever it is that is happening in my body at the moment – although we won’t really know that until more information is gathered or it could be stress that has triggered this. Whatever it may be – I am over it all. I have been on the new medication for a week and I am having glimpses of feeling okay so I am hopeful that we are on the right track. I still feel pretty crappy most days, but half an hour here and there without terrible symptoms feels like a blessing to me.

I will update when I know more. Much love x

Medication – Day 1

Arcabose – typically for type two diabetics but apparently used to help hold blood sugar steady so that is what I am now taking. I still experienced a couple of mild hypos last night and to be honest I still feel scared to eat this morning because I don’t want the usual to happen – in two hours I am a mess on the floor. Side effects so far – yup. I am itchy and I have the poos (sorry everyone I know how much you wanted to know that 😆) and weight loss – which lets face it, would not be ideal and seems to have already happened. But as with anything, you really have to take any medication for a couple of weeks before you will know if it is going to be okay for you or not, so I will persist. Besides my multivitamins I only take one other tablet which is for reflux so at least I don’t have to worry about any weird medication interactions taking place. It’s still not a pleasant thing to be on another type of medication but hypos that cause you to black out aren’t fun either – in short the risk is not worth being precious about having a mildly irritated butt. All in all I have woken up feeling much more positive today.

I told a close friend yesterday that I was giving myself a few days to sulk and cry and feel like everything was unfair but the truth is – there are much worse things. There are still going to be a lot of tests and there will still be mountains to climb but that is okay – the mountains will move. I have stopped feeling sorry for myself and am thankful for the breathe in my lungs today! Much love always x

2020 – The Year That Keeps On Giving

We all know that none of us share everything online right? I always remind people that we all love to share our highlight reels with the masses but when it comes down to the muckity pluck – we may try to hold some of that back! Well I am no exception to that rule. There are swathes of my life that are only for me and mine – however I am facing a new situation that is a direct result of my weight loss surgery so I feel like it is something that I should share because it is going to have a massive impact upon how I do everything in the weeks, months and years ahead.

There are times when I have struggled to be open about what is going on in my post weight loss surgery body. I share because I hope that it can possibly help others in some small way. For the most part, things for me have been quite difficult and I think it would be completely fair to say that I have not had an easy time of it. Yes I have lost a LOT of weight. I needed to lose a lot of weight. In saying that I love, celebrate and embrace all shapes – but my body was becoming increasingly immobile and shut down prior to my surgery, that is why I needed to act. I don’t regret my surgery at all. But I am feeling a little overwhelmed today.

Lets take a quick trip down memory lane. May 2018 I had an infected cyst removed from my upper gum that resulted in massive facial swelling and a long recovery. June 2018 I had RNY – Gastric Bypass. July 2018 I had my Gallbladder removed and a longer than expected hospital stay while they tried to work out what was going on with my body (scary visits from the infectious disease specialist) December 2018 Hernia repair surgery. February 2019 my husband had his first flair up around his autoimmune disease. March – June 2019 MASSIVE weight loss (around 10 kilos a month) and malnutrition issues with scope and iron infusion. July 2019 Steve’s official diagnosis. September 2019 First skin removal surgery with complications, ICU stay, return to theatre prevent me from bleeding to death, repeat blood transfusions, ongoing blood protein issues, ongoing iron issues. March 2020 heart scare and hospital Stay. May 2020 Steve had surgery. February – September 2020 strange symptoms that were attributed to stress etc. When I read that and I know that it doesn’t show even an 1/8th of what has gone on in our lives, I know that it has been a really big few years.

It has not been all doom and gloom and actually life really is kind of wonderful in so many terrific ways. I remain steadfastly grateful for the wonderful people that continue to love and care for me and for mine. So, in the paragraph above I said that I have had weird symptoms for more than half a year. If I am honest, and really think about it, it was probably even earlier than this – perhaps late last year but I didn’t want to think about or acknowledge that anything else could possibly be going on in my body. I attributed everything to stress and at the advice of my doctors, I remove additional anxiety, I changed my field of work, I stopped giving my attention to situations that were not good for me and I simplified my life. From that perspective the pandemic was wonderful because it gave me a chance to reimagine and re-think my life but the symptoms persisted. The change in work meant that my weight loss became stable and that was truly a wonderful thing – but the other things persisted.

Last week I passed out for the 3rd time in as many days.This was becoming something of a regular event. A terrifying one and not one that I want to regularly put my children or husband through but it was turning into a somewhat regular thing. So it was time for another doctors visit and more blood tests were ordered, then another doctors visit and more blood tests were ordered and after those yet another lot of emergency bloods came back and I ended up with a referral back to my weight loss surgeon. I was referred back to my specialist because my GP suspected I had a condition that can result from gastrointestinal surgery. It’s rare (yeah so surprised by that 😒) But he felt it required the input of my gastrointestinal surgeon. I called the rooms and made and appointment for the 16th of October – his soonest available. But honestly that felt like a LONG TIME to wait when I keep collapsing. I live in the State of Australia with the most cases of Covid, and if I presented at Emergency I wouldn’t see my family again until I was released …….. so I decided to contact my surgeon directly via email. I told him exactly what has happened and as usual he acted swiftly and I had my appointment yesterday. I have often said he is amazing and he TRULY is. I start medication today. I see an endocrinologist really soon as I learn how to live with reactive hypoglycaemia. Doing my blood sugars regularly, making sure I am eating enough and trying to avoid hypos. Last night, 2 hours after dinner my blood sugar level was dangerously low.

This morning, I will be honest, I feel frightened to eat because I don’t want my BSL to drop and that is what reactive hypoglycaemia does. My body is producing too much insulin and it does that in spite of what I eat. It’s not a common condition and I will learn how to manage it – it will just take me a few days to wrap my head around it all. At least it has a name and thankfully the blood tests caught it! I am so thankful that my GP believed me enough to keep looking because he knew that something was wrong. I am thankful for the urgent blood tests and for the incredible care he always gives. I am also so thankful to my surgeon. He has seriously been incredible every single time I have contacted him. The medication he has prescribed for me had to be ordered in and will arrive today so I will be able to start that tonight. So that is what has been going on with me health wise. It’s a new situation and has been really scary for me and for my family to navigate. Times like these show me who and what is important.

People that love you – truly love you – They are important. It’s easy to love someone when everything is great but who is really there for you? I know who is really there for me! Our health and well being – well that is critically important. We only get so many chances with these things and once they are lost they are sometimes lost forever so I really want to explore you to take care of those you love and take care of you.

My summer clothes have started arriving! We hope to spend Christmas in Queensland with our immediate family – providing Covid restrictions have eased sufficiently by that time.