4am and I still haven’t slept. 3 weeks ago I had surgery, Achilles tendon repair,  bone spur removal, bursa removal and a general clean up.

I’ve been in a back slab/half plaster from my toes to my knee ever since. I had a pretty awful fall in the hospital the morning after surgery. Still getting used to the cast and crutches I lost my balance and put all my weight into my freshly mangled foot. I can’t remember a time I’ve been in more pain than at that moment and for hours afterwards. This was the first of many falls I’ve had since this procedure. I think I’m up to 5 falls now. Luckily I haven’t really injured myself in any of them besides bruising.

I don’t feel my surgeon properly prepared me for the recovery from this surgery. All I was really told was no weight bearing on that side for 2 weeks. He never came to see me after surgery, never really gave me post op instructions and forgot to write the prescription for antibiotics on my chart so I was sent home with no antis.  I asked before we left about them but it took them days to fax it to my chemist. So in those crucial first few days I had nothing. You might think yeah, big deal, but being a diabetic , along with my myriad of other issues, I’m extremely susceptible to infection. My post op visit wasn’t made for the usual 2 week mark, but the 3 week mark so I am still waiting to get my stitches removed and for further information,  whether I go into a full plaster now or a moon boot, Tuesday will tell.

I feel so overwhelmingly disheartened , I feel like I can’t even trust my body to get out of my wheelchair without falling or stumbling. I’m 26, I’m too young to not be able to trust my own feet. Doorways make me incredibly anxious and anyone standing around to help just adds to my nerves and anxiety so of course I snap. It’s hard to accurately describe not trusting your own body to carry you upright , I can’t even properly put it into words besides I hate it. I hate that when I see my cousins or nephew they want me to play and go inside, outside, inside again, and I just can’t. My 2 yr old nephew even grabs my wheelchair and says chookey in chair, outside. As adorable as it is, it kinda breaks my heart because I’ve always been the get on the floor and play type of aunty.  I know it’s not forever, and they just have to accept it, but they’re kids, they shouldn’t have to. It’s hard when you’re in the middle of it to see it will help in the long run, and being told just that doesn’t help either. I am well and truly feeling sore and sorry for myself. I struggle to get to the kitchen and back to my room with a drink, and by the time I do get back, it’s a big sigh of oh finally, have to take a breather and then manouvre myself into my bed. Everything is 10 times harder and more tiring, and considering I already have chronic fatigue,  that’s saying a lot.

Just getting into the toilet is working my way around the corner of the hallway, parking and locking the wheelchair at the door,  lifting myself out of the chair, spinning around and taking 2 big hops backwards so I can then close the door so I can then hang onto the doorknob for dear life to lower myself. Shower is much the same, adding in a lovely purple garbage bag over my leg. You don’t appreciate what you can do until it’s impaired somehow or taken away. My right leg and my shoulders hate me at this point, as they’re working overtime. Going anywhere , you get stared at and looks of sympathy,  making you just want to melt away and be normal again. I hate everything about it, my foot and leg is either freezing or hot, and before people get worried,  I’ve had it checked,  it’s not infected. It weighs a tonne,  feel like I need a crane to lift it sometimes. If I sleep on my right side, I have to tuck my right foot under my left knee because otherwise it’s on an uncomfortable angle. If I sleep on my left side, I can’t have the right leg resting on the left because the hard edge of the plaster digs into my leg. Sleep on my back and the doona on top of my foot hurts. On my stomach isn’t too bad, but again have to tuck my other foot underneath to get it comfortable. Nightmare! It just seems to be a never ending,  unwinnable battle for comfort. To make things worse, the past few nights I’ve started getting restless legs again, normally I’d just get up and pace for awhile. Obviously I can’t do that so I am at a bit of a loss as to what to do. I got up and into my chair and rolled back and forth using my good leg for a good 20 minutes, back to bed and it was back again within 15 minutes. So it’s approaching 5 am and I still haven’t slept a wink. I’m pretty used to crappy sleep,  but usually I can get a few minutes here and there.

And my diabetes is crap at the moment, I’m trying but I’m just losing momentum  I’m doing probably 4 or 5 readings a day which is on the lower side for me. They are almost always in the teens, feels like a never ending battle to try and get them down, one day it will come down,  the next it won’t budge or it’ll even go up. I’m so exhausted by it, I have my endo appt next week and I know he won’t be a fan of my hba1c. It’ll probably be mid 8’s I know to some that’s nothing but we’re all different , and to me that’s far too high and when I’m told that inevitably high number I’ll be disappointed in myself. It’s not that I’m not putting effort in, it’s just that so many other aspects of my health are screaming for attention that the diabetes is on the back foot. I know it’s not great, and I will get back on track,  but for the time being, I’m doing the best I can.

I really hate losing my independence and just basically being an invalid, I hate having to ask for or receive help with things I could easily do myself a month ago .

 

I think that’s about it . Enough whinging from me 😉☺untitled

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Hello again! The weather is cold, the heater is on, the electric blanket is on and I’m in bed. Perfect recipe for a blog to be written. These blogs tend to be a diary of my health nonsense, and this blog will be no different. I thought things might settle down after I got a diagnosis but they haven’t really. The diagnosis of fibromyalgia and chronic fatigue only brought up more questions. What do i do now? How do i help myself? Is my life going to be this crap from now onwards? Will i recover? This is only scratching the surface, i don’t want to bore you with the inner workings of my mind. I have heard other sufferers ask this question, and i found myself asking it too, are my current issues fibro, or should i be going to the doctors? It complicates everything, not being sure if it’s just another symptom or maybe something on top of that. 

I keep getting spontaneously sick every few weeks, the docs say it’s abdominal migraines and put me on meds, but to go on those meds i had to stop my beta blockers for my heart. The new meds are meant to lower my heart rate also but they are nowhere near as effective as the beta blockers. Just sitting down my resting heart rate is 100-110, i get up and walk a few metres and it’s pushing 130, sometimes more. It really isn’t helping the fatigue, everything is exhausting, i find myself living on the couch or constantly wondering where i can sit down because I’m so tired. I try to go shopping but end up exhausted and feeling sick. 

I went to the doctors with sinus pain and congestion, clearly my sinus’ acting up yet again. Yet again they tried antibiotics and nasal sprays with steroids, yet again, it didn’t help. The next step is going to an ENT to go under and get them surgically drained. I just want it done at this point, it’s been about a year of congestion and yuckiness. I want to tick this off the list and have it be done with! 

I noticed that the lymphnodes under my arms were swollen, i kept an eye on it and hoped it would go away. It didn’t, and camp was only days away so i was talked into seeing a doctor about it. She sent me for an ultrasound, the technician said she couldn’t see anything too nasty but to consult my doctor. I get the results on friday.

When i last saw my rheumatologist, quite awhile ago now, he saw an abnormality on my spinal mri, right where I hurt my back in a fall, and subsequently had 2 surgeries. He ordered me to have an ultrasound to further investigate. I put it in a draw and tried to ignore it because i didn’t want to face the possibility of having yet another surgery. I was speaking to a friend and she told me to bite the bullet and just go and get it done. I booked in and reluctantly went and got it done. The technician barely started the scan before she got up and said she was getting a colleague. I’m thinking oh here we go, what is it this time. She came back and explained to me what I had was rare and her colleague had recently been studying this exact lesion. I asked her what the issue was and she explained that the connections between the muscles and tissues and such are damaged and no longer connected so fluid is collecting in between them. She said it was quite bad and will quite likely needed to be operated on because it has been such a long standing issue and injury. I thanked her for her help and went to the car. I sat there for a minute just thinking oh not again. I could not and still cannot believe this nightmare still isn’t over. I fell 5 years ago, had my first surgery 3 years ago and my 2nd surgery last year. And now it looks likely to be surgery #3 this year. I feel like i could scream with sheer frustration. 

As much as i would never ever wish my health on anyone, why does it always happen to me, why do i always get everything? It’s exhausting, in every single way imaginable. 

I had my camp this past weekend. I think it was possibly the most challenging thing I’ve ever done. I stopped halway to anglesea to get some lunch and as soon as i got back in the car i started to feel sick. I got to camp and didnt feel any better. I felt sick to my stomach, i wasn’t sure if i was going to throw up or pass out or what. I pushed through and put on a brave face for my camp families, and retired to bed at 9.30pm. My pump alarmed with errors with my sensor all night until i turned it off at 5am. I woke up feeling better but still tired. I hit the wall again around 5pm and was exhausted, i managed to make it through dinner and disco and was in bed by 9.45pm. Come sunday all i could think was get through the morning, drive home and you can sleep. An amazing camp parent carried most of the boxes down to the trailer for me which helped immensely! I managed to drive home without stops in 2 hours and 5 minutes. I stumbled out of the car just absolutely at my limit. I had a few cuddles with my nephew and retreated to the couch. It was so hard because the camp was hugely successful, the parents were great, the kids were great and the whole program went very well, but everything is clouded by how i felt which is so incredibly disappointing for me. I felt so disappointed in myself and just let down by my own shortcomings. It is so frustrating. I’m also proud of myself for pushing through and making it a great weekend for my kids, hopefully making them feel not so alone in this horrible disease.

I’m horrified to admit but my diabetes has taken a back step at the moment. I feel so horribly drained from everything else that I’m finding it difficult to keep on top of that too. I’m only doing 1-4 tests a day, I’ve tried putting sensors on to ease the burden but have had nothing but trouble with them which compounded the stress and did the complete opposite to what i was hoping. 

I’ve been visiting a myotherapist weekly and she is amazing, she knows so much about fibromyalgia and chronic fatigue and what we can try. Remedial massage does not work for me at all, it only causes me more pain at the time and for a week afterwards, with no relief. Next we tried dry needling and that has helped heaps. The pain in my shoulder was getting unbearable, and the needling has put an end to the harshness of the pain. It is still there but not as bad. 

Ahh i could crap on all night but i think there’s been enough verbal diarrhea for one night haha!
Much love, thanks for reading xx.

My relay 

So here goes another blog. As with all the others, i don’t go back and read over it and edit it. I don’t write it thinking about how people will react or whether they like it or not. I literally just write whatever comes into my mind, whatever i feel like conveying. No more thought goes into it. Its just unedited, raw, and me. 

So, this weekend i did relay for life. For those who dont know, relay is a 24hr event where you get a team and a site where you call home for the next day and you walk laps and fundraise for cancer council. It is an amazing event to be a part of, the atmosphere is so open and friendly and it truly feels like one big family of 4,000 people. Some people walk through the night, some can only manage 1 lap. That’s the general explaination of relay, this will be my personal experience of relay, every little bit.

Friday at 3.30pm, i get ready to leave the house and head to relay, half way there I realise i am hypoing and have to stop. I pull into hungry jacks and get a chicken burger and straight drink and devour both in the hopes of feeling better. 10 minutes later im okay again and feel better after eating something. It takes me about 30 minutes to make the 10 minute trip from my house to akoonah park where the relay is held. Traffic was horrendous and unrelenting. 4.25pm i finally arrive at akoonah park, and am quite releived to see there is a park directly behind our campsite. Less walking unloading the crap you pack for one 24hr slot. I sat down for a few minutes before my friend text to say she was here but she wasn’t sure where to go. I started walking the lap to find her and low and behold walked the entire way to find her 200m from our camp in the other direction, if id only walked right not left! We got back to camp and before long once everything was unpacked and we settled in, it was time for the official opening ceremony at 5.45pm.  We walked over to the middle of the oval and there were speeches and typical stuff you would expect. There was also a brilliant poem from a 15 year old girl who had lost her best friend to cancer when they were 12. The way it was written was incredible for someone her age. After the survivors and carers it was then time to embark upon the official first lap. We had our banner and 4 of us walked proudly with it in our grasp. We did 2 laps with the banner before returning to camp. I already felt sick just from doing 2 laps and was told to sit down and rest which i did. I was worried leading up to the event and during how i would cope with my new medical restrictions. I was planning on trying to pace myself and not push too hard. I walked about 5 laps before the candelight ceremony. 4 of us set off for the oval, and i broke off to run to the bathroom before it started. I got back and the oval was pitch black, the only light coming from the stage, and a out 2,000 people standing there. I looked briefly but conceded there was no way i would be able to find the other 3 in the dark. I made my way to a small opening of grass and sat down to listen to the ceremony. It went for 45 minutes, maybe an hour. I was a bit sad to not be with my mum for the minute silence as at last years relay she was very emotional during this time. I sat there thinking about the friends who had lost husbands recently, and the grandparents i had lost before i was even born, the grandpa i had lost at the same time i was diagnosed with diabetes. And lastly my beloved grandma who battled skin cancers for her whole life and that i miss so much. It was actually nice sitting there by myself just thinking about how my life has been touched by cancer and being able to just relax and think without concerning myself with the people around me. As i went to get up i got a glaring reminder of why i struggle and now avoid sitting on the ground. My hips seized up and i walked very gingerly my first few steps rubbing my sides, willing the pain and stiffness to go away. Once that subsided, the shoulder pain kicked in, which i had been waiting for and was prepared for. Slowly walking back to camp i saw a friend standing in front of the memorial slideshow of loved ones who had passed. We stood there with an arm around each other for quite awhile before her mothering instincts kicked in and she ordered me back to camp to rest. I laughed to myself as i walked away because by joining the lionesses a few years ago, i feel like I’ve gained 3 grandmothers. In moments like those its really nice to still have that kind of figure around. I got back to camp and took some painkillers, before long i hear, she’s back here and phone lights are up in my face, it’s my mum and 2 friends who i couldn’t find at the ceremony, they were worried something had happened to me when i didn’t find them at the ceremony. I assured them i was okay, i was there and just sat by myself to listen to the stories and music. I got mum to stick 2 heat pads to my shoulders and went and did a lap with them. I came back to camp to rest and started getting a migraine, i couldn’t take any painkillers because i already had an hour earlier for the muscle pain. I drank lots of water and hoped it would go away. It didn’t. The music in the middle of the oval was so loud and it was really getting to me so at 10.30pm I resigned that i needed some rest. I couldn’t sleep on my stretcher bed because that gave no relief from the noise so went to my car but looked at the small space and knew it wasn’t for me. Mum offered her car, and as her seats laid flat it meant the space in the boot was nearly a double bed. I laid down a folded mattress, got my pillow and tried to get comfortable. I had towels hanging on the windows and a sunshade at the back to block the light and so people couldn’t see me. It was quite a cosy little space. I managed to get 2 hours sleep before waking at 2am having a hypo. I texted mum who was a few metres away outside the car and asked for food. I knew there would be no sleeping again after a hypo so got out of the car and rejoined the others sitting at camp. After some time i then went for another lap or 2. Mum then went to get some rest, and by 5am i was desperate for more sleep, i was uncomfortable and tired and cranky. Mum was in the car so i tried sleeping on the stretcher bed but couldn’t get comfortable and it was so cold i gave up and tried sleeping in my car. That lasted maybe 30 minutes before I gave up and got out. I felt horrid i was cold and tired and just felt crap. At 6am they had a bbq making egg and bacon rolls so took my jumper off to wake myself up and headed down to get some food. I then did another lap or 2 after breakfast, by this point people were starting to move a bit more and wake up from their broken sleep. It was still quite cold at this point and there were blankets and jumpers everywhere. I went back to camp and got mum to put dencorub on my shoulders which helped a bit. I did a few more laps, visiting the book man and buying a book for myself, and one for dad. It was starting to warm up by now, and I start to feel quite sick with the heat so i retreated back to camp where i was told to go home. I refused, and stayed. Dad came to visit and brought a plastic poster i had designed for our group to say thanks to everyone who supported us. It was a huge hit, our team captain loved it, we even had people visit our camp to see the ‘infamous’ sign. It was great to see it was so well received. I had decided by this time to not force myself to walk anymore laps and to just hang around camp and take photos. I set up my tripod and organised some group shots and some walking shots, i also took some of our camp, displays and goods. It hit around 1.30pm and was starting to get really hot and i had hit the wall, after 21 hours I took my shoes off and felt like the soles of my feet were covered in blisters. I wanted to stay til the end but knew my time had come. I packed up my bag and camera and such, said goodbye and headed home. I got home, brought in my phone, meter and food and crashed. Everything else got left in the car. I woke up at 7pm that night after a 3 and a half hour sleep, made and ate dinner, watched some tv, took all my tablets and went to bed feeling pretty sick. I wasn’t badly burnt but had some sun on my face and think i had a touch of sun stroke on top of the exhaustion and the muscles weighing down on me. It was in bed at 11pm that i realised I’d overdone it. I didn’t respect my medical limitations and now i was really paying for it. I woke up at 3am and had an icypole to try and help the heat, and fell asleep again. I was then awake again at 8am, i felt much better after getting some sleep and got up to have breakfast. I went back to bed to watch netflix and within half an hour i was asleep again. Awake at 12.30pm i get up to get a drink and some food, again im asleep by 2pm. I wake up at 5.30pm realising the full extent of my exhaustion, i sincerely hope that it won’t affect my sleep tonight but knowing me it probably will. I knew my health would put some restrictions on me and that i might be sore and tired afterwards but i didnt realise the full extent of it and what i was in for. Even as i write this i could easily sleep again as im writing this laying down, but im going to make a conscious effort to keep myself awake so i can sleep okay tonight. So, that was relay, as a team we walked 650 laps, equivalent to 585km. That’s a bloody decent effort if you ask me! It was a good 21 hours with some great people, inspiring people and i will definitely be back next year. 

I think that ought to do it, i dont think people want to hear anymore from me. So if you’re reading, thank you for taking the time. 

Here we go again

So here we go again, here’s my standard opening line, I know it’s been a long time since my last post…

My last post was late October, so the updates since then start with more doctors appointments, which ill get to later. So chronologically, November started with an educator visit, I love my educator she’s so approachable and very knowledgeable. November also consisted of weekly chiro visits to help ease the pain in my back and hips, they were really painful visits and not sure if they really helped but it made me feel like I was doing something to move forward. November 12th marked my 2nd giraffe encounter at Werribee zoo where I got up close and personal and was able to feed the giraffes. This one was cooler than the first one because this time, one giraffe in particular, Amani, wouldn’t leave me alone, he stayed with me the whole time, staring at me and ignoring everyone else. Even the keepers commented on how he was infatuated with me, it was pretty awesome and made for some good selfies!

I also met my rheumatologist, who I was hopeful about and seemed to know his stuff, asked a few (literally 3 or 4) questions, and decided a needed a lower back and pelvic mri to rule out any structural abnormalities causing my pain. Of course, mri appointments don’t come around quickly, so I had to wait a month. Ive had mris in the past and so wasn’t too worried, but a little concerned when I was told the scan would take 75 minutes. I was fully immersed in the scanner, right from my head to my feet so I was practising my breathing and focusing on anything I could to not think about that fact. It was also really painful, being in the same position for that long, my neck, back and hips were becoming increasingly painful, but I knew I couldn’t move, not even a little, because that would wreck the image and I would have to go through it all again. During the second half of the scan I started getting small shocks, like when you use a tens machine, down my right arm. Anyone who has been in an mri machine before knows how loud they are, so 75 minutes later I walked out feeling sick I had a headache that bad, my back hurt and my arm felt strange. It really wasn’t pleasant. I got the results back, and everything was perfect except for blood pooling and scar tissue in my lower back, right where I had my fall, and subsequent 2 surgeries. Nobody mentioned whether I should be doing anything to remedy this so don’t really know what that means. But the point is, structurally my back is good so that’s reassuring.

All through most of December nothing overly memorable happened, I felt sick a lot of the time, and my appetite came and went. A few days after Christmas, I got gastro and spent the entire night up throwing up and feeling like death. It got to the point where I couldn’t keep down a sip of water, so I asked my dad to take me to the hospital. Anyone familiar with type one knows how bad dehydration can effect a diabetic, nightmare. I spent about 7 hours in hospital on monitors and 3 bags of fluids, and felt much better once I was hydrated, but it still took another few days to feel well again.

Come January, another rheumatology visit, it lasted about a minute and a half, I walked in, he said your back is fine, sounds like chronic fatigue, good luck, shook my hand and that was it. Super helpful right!? I felt a bit disheartened and very confused because he had thrown me out so fast. Chronic fatigue certainly made sense, but what now, what do I do about it? He told me nothing. My sleep problems were becoming worse every week, having trouble getting to sleep, staying asleep then trouble getting through the day, exhausted. I went to my gp and he suggested prescription sleeping tablets, I was already on sleep vitamins, and over the counter sedatives. I tried them for awhile but found they didn’t improve my quality of sleep and were upsetting my stomach so I stopped taking them.

January 23rd 2017, my 19 year anniversary of my type one diagnosis. I always find it a bit of a strange day, I’m proud of myself for getting so far, but sad and confused about why I had to. It is a tough thing to deal with every day, every headache, does it mean I’m high? thirst? high? shakes, low? sweats, low? just to name a few. always having to take my meter everywhere I go, making sure I have enough insulin before I walk out the door, making sure I have enough strips, have sweets just in case, is my phone charged in case I need to call for help, am I going to do something physical, do I need to put a temp basal on to lower my insulin, am I running high, so I need to have insulin but not so much that I’m going to hypo while out running errands. Before I even get to that point, where can I put my pump so that I can access it but that its not really visible, do I need to put the cover on it so it doesn’t slip out of my pocket, or the clip, or do I take all that off so its not bulky? All these things go through my head on a daily basis, sometimes multiple times a day, and that isn’t even all of it, but you get the point, its mentally, emotionally, physically, exhausting. Its also expensive, and time consuming and space consuming and all consuming!

The week of the 23rd was a very busy week, the day after my diaversary I had to go get my botox injections. To those who have read my posts before, you know what I’m referring to, to those who haven’t, I get 35 or 36 I cant remember, injections into my forehead, scalp, neck and shoulders to help with my migraines. You can imagine how long and how bad my migraines are to go to this length to stop them. The injections are amazing, I get them every 3 months and for just over 2 months I get virtually no headaches or migraines, its incredible! The next day I had induction for a new job, doing before and after school care,  the next day we drove to frankston foreshore and spent the day there with my little nephew. It was a busy week and left me utterly exhausted at the end of it.

Sunday the 29th we had a party for my nephews 1st birthday, his real birthday is February 15th, but he would be back in Darwin by then, so we had a party down here with everyone. They left for Darwin again tonight, its hard, I miss him, and as his aunty feel like I’m missing out on I’m growing up through these first stages of life, however, it has to be this way and hopefully one day soon they will move back to Melbourne and ill be able to take a more active role in his life.

Next thing, I saw my endocrinologist, like my educator, Jimmy is awesome, he’s approachable and actually listens instead of treating you like a task to check off. I told him about what was going on with my health and what the rheumatologist said and he wasn’t happy at all, he referred me to another specialist, in the hopes he would be more competent. He checked my blood tests and said kidneys and liver were good but my CRP, inflammation markers are still increasing, over the past 2 years they have steadily increased way over the normal levels, which is a cause for confusion and concern. Because of all my meds and sickness and length of time ive had diabetes, he decided to put me on a drug to increase my insulin sensitivity, and subsequently lower my insulin. I tell you, it works, don’t think ive ever had so many hypos in 2 days! But I’m working on lowering my rates until its at an acceptable level, so I’m hopeful its going in the right direction,

I was very lucky, and the rheumatologist had a cancellation so I had an appointment 3 days later. First impressions were good, he seemed on the ball and a lot more interested than the last one, asked a lot more questions and is doing ALOT of blood tests, which the other did none. He has put me on a drug to tide me over until the tests come back and I’m not too excited about it. There are a lot of side effects, my dad was on it not too long ago and ended up going of it because of the effects. Being sick for so long, its pretty obvious ive put on a lot of weight, and this drug makes you gain rapidly, so that’s another reason for me to be dubious of it. I’m not a fan. With this addition, that’s now 14 tablets I take, I hate it, every night I look at the tablets and hate it, but ultimately I know it helps so I have to but it doesn’t mean I have to like it.

So if you haven’t already figured, I’m sick and sick of it! See what I did there? 😉 lame joke I know, I’m clearly exposed to too many dad jokes!

I am trying to eat better, but find it so hard to get the energy to cook, especially at nighttime. I’m doing my best to find quick and easy ways to eat better with the least amount of energy expenditure. It’s tiring, all the time, my body is constantly at war with itself, and nobody seems to be able to figure out why. Its a question that’s gone unanswered for nearly 9 months with varying symptoms that some and go, so many things have been thrown around, fibromyalgia, chronic fatigue, diabetes complications, etc.

So many friends have disappeared as time went on, its painful, but I understand. After such a long time, its not that nobody cares, but nobody wants to hear about it anymore, so you learn to not mention it, or downplay it, its just easier that way. Problem is, I’m an open book, my face doesn’t hide anything, so if I feel sick or am upset or angry it shows all over my face. At least you know where you stand with me! I know people do the whole challenges are only given to the people who can handle it, ive been told that since my type one diagnosis and yeah okay, but its not like you get it and then youre all good, I can handle this, no sweat, that’s not how it works. You become mentally hardened but also mentally tired from not having a choice, you have to deal with it, you have to do that injection, take that tablet or go to that millionth doctors visit, its do or die, it really is. Its not something anyone deserves or gets because they are stronger, that’s a load of crap, you don’t have a choice. You hear, oh I couldn’t inject myself everyday, do it or you die, it really is that simple in terms of insulin. You get up and go on because there’s no other way, but that doesn’t mean you’re any less deserving of care or love, if anything you need a little bit more consideration because life is bloody hard enough! Everyone has their battles, everyone has hardships and triumphs, a lot of people keep it to themselves, but that’s not me, I’m an open book, I share, as you can see. I’m pretty sure if you’ve managed to get this far in reading this then you understand that fact.

There’s days where I just want to whinge or want to be looked after, but there’s also days where I’m okay and things feel manageable, each day is different and I don’t know what its going to be like until I wake up, so please be patient with me.

Thank you to people who are still around, I appreciate your friendship. In the words of Ellen, be kind to one another. xx.394fc3f12173823709edec288b91d099 untitled

I don’t know if anyone will read this, and I don’t really care either way, I just need to get all this down. A lot of you will already know some or all or none at all, I’m just going to put down everything.

So everything started 6 months ago. The beginning of April, I was sick off and on, nothing in particular wrong just stomach aches and pains and general feeling unwell. I went to Darwin for 2 weeks, and felt better for majority of it, maybe it was the warmer climate, I don’t know. When I got back, I felt a little sad , as I had just left my baby nephew who lives in Darwin, I thought it was just normal, but it progressed very quickly into something I had never experienced before and hope to never again. I felt like I was losing my mind, just absolutely gone, I cried hysterically for basically 5 days straight until my parents called an ambulance. I felt like I had no control and was so confused over what on earth was going on. The doctors and nurses weren’t even worried about my mental health, they quickly caught on that something physical was wrong, and said I had a severe kidney infection. They told me that they had seen many people go down the same path. So that was the beginning of this long list of issues.

A few days later, I was taken to hospital again, nauseous, and throwing up with stomach pain. The doctors did tests and scans and such, and the emergency department doctor suspected gastroparesis, which is when your stomach doesn’t empty food like it should. This then meant gastroenterology visits and more tests, eventually showing that I didn’t have gastroperesis. I was in agony with my stomach, and I would end up in a ball, rocking back and forth every day. After weekly visits, I just stopped going, they were out of ideas. After awhile the stomach issues seemed to fade away a bit, so I stopped worrying about that.

Around the same time I started having issues with my heart rate, it jumped up to around 140/150 whenever I would get out of bed or have a shower. It was exhausting and worrying, this still continues to be an issue but after 4 months of echocardiograms, halter monitors, stress tests and blood and urine tests they determined my heart is structurally strong and that there must be some underlying infection or that it was caused by my diabetes. During that time, I tried 3 different beta blockers, and 2 other types of pills that are meant to lower your heart rate. Nothing seemed to work, either because of side effects or they just did not do the trick. I have now been put back on one of the beta blockers but on a miniscule dose. It has had an affect on my heartrate but not a huge effect. However, after months of freaking out about my heart and thinking I’m going to have a heart attack, I can now accept that even though my heart rate sucks, its not dangerous, which is a small blessing.

I don’t know where to start to explain the next bit. I had a fall 5 years ago in Brisbane, where I smashed my back onto the edge of concrete steps. It caused a huge bruise and hematoma, I had physio for months and eventually just put up with the idea that I was always going to have a sore back. 2 years down the track I went back to my gp and complained that there was still a lump there are it was still uncomfortable. She sent me for a scan and when I went to get the results, she said unfortunately the muscle has died. The only solution left is surgery to cut it out. That was my first lumpectomy on my back, turns out I had the dead muscle and a lipoma in my back. I was in agony for weeks, screaming out in pain daily. Back to today, I still had the lump and still in pain so was sent to a plastic surgeon, and I’m told it looks like the first surgeon didn’t take all the lipoma, and if you leave any behind, it grows back. So I get scheduled for surgery again, and I was terrified because I remembered the pain from the first one. This time the cut was longer and they had to cut deeper. The lipoma was 140mm x 120mm x 100mm I believe, so pretty huge chunk out of my back. So it took a good few weeks to recover from that. The surgeon did a much better and neater job. 4 months down the track and its still not back to normal and I need to go to the physio to get it massaged so the lump doesn’t develop.

Next! So during all this time I was seeing my psych and talking to her about everything, and then seeing my neurologist. I went to see my neuro to get my next batch of botox injections, 36 injections into my forehead, head, neck, and shoulders. They are really unpleasant and my head kills for a few days later, but they do help. This as in July, and I got my next batch in October. Until they come up with something better, I need to get these injections every 3 months or until my migraines stop.

Next specialist to enter the arena is my dermatologist. I was getting frequent infections on the skin on my face, and none of the antibiotics my gp was prescribing was helping. My dermatologist said that I was going to need 3 months of antibiotics to clear the infections from my system, 6 weeks on the first one and it did nothing to we tried another one. This seems to be working, I haven’t had anymore infections on my face but if I get any cuts or bites on my legs or arms they get infected and take weeks or months to heal properly and usually always scar. But at least they’re not on my face, that’s something! I had a really bad infection on my chin, and the infection spread to the lymphnode under my chin, I woke up one day and it was swollen and red and really sore. After another round of antibiotics and then oral penicillin my gp decided I needed Penicillin injections to clear it up, but it took a good 4 weeks for the lymphnode to die down and for the antibiotics to actually take affect.

During this time I had also been searching for an endocrinologist and an educator as I had left my last endo roughly a year earlier. After 3 referrals and multiple emails and phone calls I finally found 2 and they are really good, they helped me get my new pump, which I hate, but that’s another story.

Ive had to many blood tests over the past few months, so many things have showed up and then not showed up. The doctors have no idea what’s going on and why I’m still sick. They were/are looking for autoimmune disorders, they are looking into lupus, and something called ankolosing spondylitis, which is a form of arthritis that attacks the spine and hips. It is degenerative and sounds kind of scary. I should hopefully have the results of it this week. The newest addition to the search criteria is fibromyalgia. I just want answers. I’m over not being able to do anything without getting exhausted, and on top of whatever it is going on ive had a chronic sinus infection for months and months, every antibiotic they put me on does nothing to help, I think an ear nose and throat specialist is the next stop. Who knows.

 

There is so much going on, and of course diabetes makes everything so much more complicated and hard. I’m over everything, being tired, being sore, hot and cold, not sleeping properly, despite tablets. Ive had a constant humidifier on in my room and if I step out of my room, my sinus’ start to play up.

I think ive just about watched every show on Netflix, and a million movies, I’m sick of my own company, and most of my friends have faded away, not that I had many to begin with. The good thing about not being able to work or do much is ive been able to spend heaps of time with my little booba, aka charlotte, aka little cousin. Seeing her grow up and learning new things and new sayings and gestures.

Doctors appointments, Netflix, tablets, jigsaw puzzles and facebook games. That’s my life right now, living the dream. Don’t mean to be a downer, just as before mentioned, over it. If anyone is still actually reading this, thanks for being along for the ride.

 

14054923_10153906206281365_8117734788107232961_n14080043_10153907015596365_1557297104664255508_n14088577_10153907000586365_4294944202954704953_n14089307_10153906915641365_5100767912578794224_n❤ my little gems!

 

 

*insert witty blog name here*

Well helllooo people!

Once again it’s been a long time since my last blog, 8 months to be exact! I’m trying to remember everything that’s happened since I last wrote, let’s start with camp! I’ve run 2 camps in the past 8 months, one in April, one in October.

April camp was difficult because we only had 5 kids which is a bit of an awkward number, don’t get me wrong, the kids , still had a great time and got a lot out of it but it was awkward organisationally, is that a word? Regardless, we ran a camp, we had fun and everyone went home happy! I ran another camp just recently, in October, that was absolutely fantastic, I think because it was my 3rd camp, things are starting to settle, how best to do things, routines and such and it was much better organised. We had 8 campers, a much more comfortable number, much easier to work with in terms of everything operating in harmony. I also had 2 great new helpers, they helped everything run smoothly and I was able to leave them in charge of an activity while I set up the next one or organised something for later on. Their help was invaluable, it really was, I cant thank them enough for what they did that weekend, they helped me and they helped a lot of kids. It also gave me the chance to send some time with the kids which I usually don’t get much of a chance to do because I’m crazy busy thinking about the next activity or organising meals, there’s always something. This camp truly was an amazing group of kids, something that has stuck in my head and I don’t think will be disappearing anytime soon was a small moment between a 3 year old girl and her mum, she was colouring in and painting when her mum asked her for a test, she just stuck out one hand for the test while continuing to paint with the other hand, this is a 3 year old girl! That little girl is an inspiration and she’s been in this world for such a short time and had to deal with more than any little girl should have. That moment and memory just blows me away, I still remember it very clearly in my mind, amazing! There was also a family there who I am proud to call my friends, a 12 year old boy who was diagnosed only in May this year, they are an amazing family, he is an amazing kid, I hope to call them friends for many years to come. He’s a kid that I hope I can help, I guess mentor would be the word? I worry about him, I’ve been where he is at mentally with his diabetes and it takes its toll after awhile, I hope he knows he can come to me. I think sometimes I put a lot of pressure of myself to help other diabetics, it can be really hard sometimes because most of the time I feel like I’m letting others down, I feel like it’s my duty as a diabetic of nearly 18 years to try and share my knowledge and help others and if I don’t do that then I’m failing. I know that’s pressure I put on myself but its how I’ve always felt and I feel it gets more and more every day.

Something that’s helped with this is, the other day I was at a council event, when I was introduced to a man from my local Headspace, they deal with mental health issues in young people predominantly and they are very interested in working with me to develop a program of some sort for young people with type one. I am so excited bout this! My camps only go up to 12 year olds so this is my opportunity to help kids that are a bit older and young adults. it is an amazing opportunity and I hope it grows into something amazing that the community takes advantage of.

I’m helping a friend try to raise money for JDRF by doing the Great Southern Crossing, which involves a team of 5 people riding 5200km (the distance across Australia) in the month of November, this equals out to 35km per person per day. I did 39km the first day but then worked 2 days and found it early impossible to even get on the bike, so I revaluated my goals, I am aiming for 20km per day and if I happen to have a free day then I do extra. I am not sure how much everyone else in the team has done but I have done 70km in 4 days, so I still have 10km to do today or will have to make it up tomorrow. I am also hoping that this will help me lose weight, I’ve los 4 kilos in 6 weeks and managed to maintain it but am really getting oer people bringing up my weight like everyone thinks they have a right to comment on it, I’m not morbidly obese, lets leave it at that shall we? What happened to the days where people were judged for personality and merits not looks and weight? So over societies ridiculous views of what makes a good person.

Oh I almost forgot! I attended the City of Casey’s Casey’s Got Talent event a few weeks ago, all proceeds from the event are going to camps which is fantastic! The councillors were estimating it would be roughly $3,000 so that would be absolutely amazing! Every little bit helps that’s for sure! The support I have got from Casey Council for my camps has been absolutely incredible, both monetary and emotional, they have been amazing, especially Councillor Amanda Stapledon she is one incredible lady, she has gone out of her way to support everything I do and have done and I cannot thank her enough, without her I am not sure we would be in such a good position as we are now.

As part of my council connections, I was given the opportunity to ride on a trike down to Phillip Island in the Cranbourne GP, that was an experience! I’ve got to do so many cool things this year with the council, different events, meeting different people, and now bike rides! It’s never ending, between work, camps, lioness club and council I have certainly been busy but it has been so great, the connections have been invaluable, and the people I have met, some fantastic volunteers and community leaders, just amazing role models within the city of casey.

I know I tell her all the time, she probably has a huge head by now but ill give her a shout out! Karlea, my newish bestie! I’m one of those people that just kind of floats through without many friends, sometimes its okay, other times it starts to bother me a bit, to have a proper friend now, the first one in a really long time that I chat to frequently, that I can confide in and even helps me on camps, its absolutely invaluable, I cant thank you enough just for existing!

 

Life is good, there’s ups and downs, obviously but I’m pretty content with where things are at at the moment, to be honest I’m actually pretty proud of myself for where camps are at!

Hrmm, what photos to add….12115685_10153268392241365_2023831353598043760_nHalloween dress up at work!

 

 

 

 

 

Caseys got Talent!

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That’s all folks! 😀

 

 

I’m running out of witty headings for these blog posts…

Have I really not written one of these since October last year? its really been nearly 6 months? My bad people, my bad.

Where on earth do I even begin to explain the last 6 months??? Overwhelming.

I think ive mentioned that last year I went through a series of tests to come to the conclusion that I have De Quervains tendonitis, in basic terms, my wrist is screwed from overuse on the computer organising things. It’s from the outside of my thumb, all the way to the inside of my elbow. I tried going to weekly hand therapy sessions, which helped for a bit but then were doing nothing at all for me, so I was referred to have a cortisone injection, which was fantastic and stopped the pain for about 3 months, however it has become increasingly painful over the past month or so, so now I am booked in to have another injection into it and fingers crossed it will be the last one I need. Apparently you can only have three injections into the same joint, or so im told so hopefully it wont get to the point of needing surgery :\.

However, this one injection started another problem, the injection site got horribly infected and I had to go to the doctors every three days to get it redressed, totally disgusting, they actually thought I had staph for awhile because no creams, lotions, liquids, anything would work on it. It seemed any time that something broke my skin, it got infected. So I then started getting them everywhere! I complained and got sent to a dermatologist who eventually said it is some strange kind of exema, she took a biopsy out of my leg a month ago and surprise, surprise, it still hasn’t healed. Anyway, hopefully that wont happen with the next injection because it was totally gross!

Onto something that’s not gross! 11th of January, easily the best day this year! I got to go on my Giraffe Experience that mum and dad bought me for Christmas. I got to get up close, and feed a giraffe, mine was named Connor and he was 7. It was the most amazing experience ever! Everyone knows giraffes are huge but its hard to grasp until you are right in front of them and you see them stagger their stance so they can bend down to greet you and eat the carrots you have! So awesome! Not a fan of having my hand licked by a giraffe though! It is like a supersized cat tongue ( like sandpaper) and just gross! So worth it though! There were kids there too who were so scared approaching them, one girl was feeding them leaves and she was actually lifted off the ground by the force of the giraffe eating the leaves from her hand, funniest thing ive ever seen! I gave the longer carrot pieces to the kids near me because they were way too nervous to put their hand out with a little carrot. So just in case you didn’t get the point, it was AWESOME!

Next, so about two weeks later, mum and I went on a cruise based on diabetes education, with seminars and all sorts, was interesting to meet new families, felt a bit out of the loop as a lot of the information was aimed at newbies and 17 years down the track, I felt that I already knew it all. But, I did get to do a talk about camps and show some of the amazing photos from Camp Manyung. Don’t think I do all that well on sea, I think the entire trip was spent banging into things. Unfortunately, my diabetes played up the entire trip, I had two lines fail, and spent majority of the time in the 20’s and with ketones, pretty crappy, luckily I pack a million lines and reservoirs and injections and pens and ketone strips whenever I go anywhere! I started to get sick on the last day and came home and went to bed, however I had somewhere to be the very next day.

Australia day, a seemingly normal day. Later last year I had received a letter informing me that I had been nominated for a City of Casey Australia Day Award. Part of the ceremony included having dinner with the Mayor, other candidates, last years winners, guests and heaps of officials. Afterwards came the ceremony. Each candidate was introduced and a small paragraph was read out about what they have done to be nominated. I had been told to prepare a small speech just in case I won, I never thought it would happen so did not write any speech. I was sitting there, heart racing and feeling nervous but hearing about the other candidates, firmly believed that I would not win, only to hear my name announced. First thing I hear is mum about 8 rows behind me gasp and say oh, I get up and have to think of something to say while I have tears rolling down my face because I honestly believed I had absolutely no chance of winning! So there I am in front of about 150 people absolutely speechless. I managed to string together a few sentences before retreating to my seat. Friends were anxiously waiting on facebook to hear the verdict, so of course I took an amazing selfie and announced the great news!, how else do you announce things these days? its not real until its on facebook! Soon after, I was on community radio and being interviewed and started receiving invitations for events every week. At the moment I have an event for Anzac day in April and a ball for St John of God Hospital in May, I know it sounds ridiculous. Its two months down the track and I still don’t really believe it!

In February I went to my appointment with my Periodontist (gum specialist) and was told that my advanced gum disease, caused by my diabetes seems to be completely gone, its taken nearly 2 years but its gone, so that was pretty great!

Oh I almost forgot to mention my car accident! I was driving to work in November last year, I was turning into the car park, through a line of stationary traffic, when I was hit on the back corner of my car, anyone who knows my former car, its pretty small, a Daewoo Lanos, the impact sent my car flying and to be quite honest scared the crap out of me. I get out of the car and see no other car stopped, nobody around. But I see a man walking past and ask did you see who did that, he quickly glances at me, then the ground and keeps on walking. Out of nowhere, I see a co-worker in  plain clothes come running over, and I ask, who did that to which he says, it was me! He proceeds to apologise over and over for hitting me and asking if i’m alright, he asks for it to not go through insurance to which I said that’s fine, ive known him for 4 years, worked closely with him for 3, it was fine by me, I trusted him. Keep in mind that I said trusted, that’s right, boy did he stab me in the back. He changed his story over and over and by doing that he was saying I was at fault, despite my rigorous notes and despite being harassed by his insuarance company for thousands of dollars in compensation for him, I refused to pay this ridiculous compensation for his car when it was his fault, so I sent him a letter, co-written by a legal aid lawyer, stating this fact. a few weeks later I got served with papers, saying there was now a court date for me to attend because I hadn’t paid and refused to pay. here’s where its gotten so messy, lawyers have gotten involved, i’ve had meetings with my lawyer, as i’m sure he has. I have been advised that putting in a counter claim is going to get me nowhere, I might win but I might not and I might lose even more money. My little car was a write off, with $3000 worth of damage when its worth $3000. I no longer felt safe in that car after being hit with such force, and refused to drive it. I tried to sell it, had lots of interest in it, one man came to see the car, and take it for a test drive, hes in the car with my dad when he backs it straight into our retaining wall then accelerated and ripped the bumper bar nearly off. I later found out that as soon as it happened, dad said you’re buying this car now and got out of the car. I went inside because I knew I was going to explode at this idiot, seriously, learn how to drive. He was a total ass to me about it from then onwards and haggled me on price because of the damaged that he just did, dad talked me in to selling it to him. When he comes to pick it up, he doesn’t knock on the door, or say anything, just get in the car and drives off. Moron. So obviously, i’ve had to buy another car, i’ve always wanted a rav 4 so thought id give them a go and see what prices they were going for. , I managed to get a beautiful green rav for a great price, its in fantastic condition. I’ve now fitted it out with jack skellington, car seats, wheel cover, and floor mats, its totally awesome! and so much more space for groceries and camp supplies etc!

Also, ive been battling with work to finally get a full time contract, stay tuned for an answer on that front.

Today I signed on to help out Camp Quality, that do fundraisers, and camps, day activities etc for kids with cancer, and their families! So im super excited about that! Don’t know where ill find the time for it all, but we will see!  Oh and since ive started eating better and exercising, ive lost 4 kilos, still a long way to go, but its happening! Its possible!

So, to the big finale! CAMP IS ON IN 28 DAYS!!!!!! super exciting, stay tuned for awesome photos and awesome awesomeness!!! 😀

Then next camp Is in October, then hopefully one maybe in Healesville in April 2016!

But before all that, an awesome fundraiser, a trivia night on June 20th, excited about that, as we have had some fantastic things donated for raffles and auctions!

Some days, I don’t know how I juggle all this stuff, but other days, I love it, keeps me busy, makes me feel important, like i have a purpose in life, that’s what we all need. xx.

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