Wednesday, 8 March 2017

How I am feeling about the surgery

On the 15th March I will be getting my bowel removed, people have been asking how I am feeling about it all... and to tell you the truth there are so many emotions going through my mind that I really don't know how to answer this question but I am going to try and answer it as best as I can.

I am scared, this surgery is incredibly high risk, we don't know if I will come through it but this surgery is needed- I don't have another option. I am scared of leaving those I love behind, I don't want my mum to have to go on without me, I am scared of this surgery not helping as much as we are hoping it will and going through all of this for nothing- but I can't go on like this and not at least tried to improve my life.

I am excited, I am excited about the prospect of a better life, I am excited about the prospect of less abdominal pain.

I am hopeful, I am hopeful that this will help and that this will be the best thing that I could have done for myself.

I am at peace. I am at peace that God knows what he has in store for me, I am at peace that my surgeon is amazing and is going to do everything in her power to help me.

Thank you to everyone for caring so much about me and asking how I am. I really appreciate it.

I will probably do some more blog posts as the surgery gets closer... 1 week today until surgery!!

Friday, 6 January 2017

What am I proud of and not proud of?

The Mighty is doing a challenge called "My Mighty Month" which is a set of challenges, I didn't want to do all off them and I didn't want to submit them to the Mighty but I still found some of the challenges interesting and wanted to do them so I thought I would do them here.

This prompt is "Name 5 things you are proud of and 5 things you are not so proud of", I have only done 3 of each because I found it hard to think off things.

What am I proud of?

1. The Fact I am still Fighting: Even though things have been tough I am still here and I am still fighting for my life- yes its hard, but I don't want to give up. Everyday is a challenge but I am still getting up every morning and doing the best I can.

2. How I still get out and volunteer: Even though I am sick and getting out and about is hard I still get out and volunteer because I think it is important to help others when you are able too.

3. The Way that I handle my Medical Conditions: I try my best to have as much knowledge as I possibly can about my medical conditions so that I can do the best to manage my conditions. I keep up with my treatments and medications and my physiotherapy.

What I am not so proud of?

1. The fact that I can get pretty cranky with those I love most when I am really not well: I know this is probably a natural thing to get cranky when you are not well but I still don't like it when I snap at those I love (especially mum), I regret it the moment I do it but I need to learn to think before I say things, to take deep breaths and think about whether what I am saying sounds snappy.

2. That I am not catching up with friends as much as I would like: This is because I am sick and in pain and its hard and exhausting to get out but I should still organise catch ups with people more often and enjoy time with the ones that I love.

3. That I indulge in "retail therapy" a bit too much: Sometimes, especially when I am not well, I like to have a bit of retail therapy, new things such as new makeup makes me happy and while its okay to do that sometimes I really need to save a bit more and not shop so much.

Wednesday, 21 December 2016

New Years Resolutions for 2017

New Years can be a little tough for me- as it forces me to focus on the year that has passed and everything that has gone on. This year has been tough and I have had a lot of health stuff going on so I have decided to refocus and make some resolutions of goals that I would like to achieve in the New Year.

This year is going to be tough because as of this moment I am scheduled for 4 surgeries so I don't want to be overly ambitious. I would like my goals to be achievable so here are my goals for the New Year.

1. Spend Less on Makeup: I am not putting myself on a "no buy" because every time I do that I fail because it is unrealistic. I would like to spend no more than $50 every 3 months (except for special occasions like my birthday then I can buy something nice for myself) and for the most part only replace things when I run out of them i.e instead of having 3 different foundations finish the majority of that item and only buy one when the one I am using is almost empty.

2. Do More for Others: I have so many amazing people in my life that do amazing things for me. It can be hard for me to do much for others because of my limited energy but I would like to aim to choose one person each month to do something nice for even if it is very minimal just do something that makes someone else smile.

3. Blog More: I would like to try to blog more. I know I haven't been blogging much, part of that is due to my health and part of that is not knowing what to blog about. I have heaps of ideas but don't know where to start. I would like to blog at least once a fortnight whether it is on this blog or my makeup blog. It would be great to be able to do a post once a fortnight on each blog but I don't want to be overly ambitious to start with.

4. Read the Bible More: I find it hard to read the bible a lot because I have found reading hard with my headaches so I would like to use one of the audio versions if possible or just read very small amounts- anything is better than nothing.

Thank you so much for reading. If you have any comments or questions or requests for blog posts please comment below and I hope to be posting a lot more in the new year.

Saturday, 22 October 2016

Hospital Stay October 2016

For the past few months I have had a lot of bowel pain and my ileostomy would randomly stop working. I went to the ER multiple times and they did an X-ray and sent me home each time. On the 14th October we went to the emergency room because I was doubled over with stomach pain, could barely walk and was vomiting. We waited in the waiting room for a while before being taken back, they took some blood and did an X-ray, nothing came back on the X-ray but my infection and inflammation markers were up so they decided to do a CT scan. They discovered that I had colitis which is a bowel inflammation or infection (as far as I understand it anyway). They immediately hooked me up to IV antibiotics and admitted me to the surgical ward. They were worried that I would become septic and also that they would have to do an operation. It took me a long time to improve. I was being closely monitored. They were giving me lots of IV fluids and checking my blood work everyday to monitor how my inflammation and infection markers were doing.  On the 17 they decided that they would do a colonoscopy (they were planning for the next day) and started me on a clear fluid diet and they inserted a catheter into my stoma (ileostomy) to put the bowel prep through. As I still have my large bowel they had to clear that as well as the small bowel. The bowel just would not clear though so I was on a clear fluid diet for 4 days waiting for surgery. I was getting very weak and looking very pale. They ended up 11.5 Litres of Colonlytely, 2 litres of Pico Prep and 2 Enemas to get my bowel clear- it still wasn't 100 percent clear but they decided to do the colonoscopy anyway so on the 21st at 8am they got me ready for theatre. When I got there there was a lovely anaesthesiologist who decided with my medical history and my high risk of aspiration they decided instead of doing heavy sedation they would put me out completely so that they could protect my airway. We are so thankful they did that because as they were about to wake me up I started vomiting (even though I had barely anything in my stomach besides clear fluids) and almost aspirated so they had to take over my airway again and put an NG down to suction my stomach. They said that if they hadn't decided to put me out completely I would have got aspiration pneumonia and been in hospital a lot longer, I was able to go home that night. I am VERY sore from being jolted around when I almost aspirated (as they were obviously more focused on protecting my airway than my joints).
The colitis is pretty much all cleared up now and the surgeon said the colonoscopy didn't pick up anything obvious but they have taken some biopsies.

I just want to thank all the staff for how well they took care of me but especially the nurses they were so kind and caring and really helped keep my spirits up while I was admitted.

It was such a hard admission on me emotionally as all I wanted to do was be home with my family, my service dog and my cat. I cried a lot but I got through it. Thank you everyone for all of the prayers , love and support. I really appreciate it. It helped me more than you know.

I hope to be back to blogging shortly but it has been tough with how sick I have been.

Thursday, 24 December 2015

Hospital Take 2

On Friday the 18th December Mum brought me back to the hospital at about 6pm because I was in a lot of pain. I was brought straight back (I think they saw my NG tube and that made them act quicker or else I looked as sick as I felt haha) and given a canula, fluids and colonlitely. Multiple doctors came in and they decided to admit me since I was waiting for a stoma surgery anyway. At about midnight I was finally given a room, I had a bad night with pain that they just couldn't control.
On Saturday the surgeon came in and told me that I would be getting a stoma (illeostomy to be exact) as soon as they had a spot.
On Sunday nothing much really happened but they gave me an enema (even though I told them it would fall straight out- surprise surprise it did...) and pico prep but it didn't work. Uncle Adrian came to visit.  And I was told to fast from midnight as in the morning I would be getting the stoma.
On Monday I got up at 6am to get ready for theatre. The surgeons came up at 9:30 am and told me they were tossing up as to whether to do another ACE using part of my bowel (which didn't really want as I was afraid it would close up again, there is a high risk of the bowel dying which would mean I would get a stoma anyway and the ACE didn't really always work). I waited all day long and at 5:30pm they decided that the stoma would be the best option and I would be getting it on Tuesday. I was really blessed to have so many visitors that day, Aunty Vicki visited and bought me a "get well" teddy bear, Nia visited and bought me some makeup (which I desperately needed in the hospital haha) and a bag , Aunty Julie visited and Mum was there all day long. Once I was off fasting Mum went down to Hungry Jacks as I had been craving it since I was admitted- I didn't eat much of it but it was still so nice :)
On Tuesday I was told I was going to have surgery at 10am so they got me up really early to have a shower. At 9am the surgeon came in and said he really didn't think that the surgery was going to happen today so because I fasted for 18hrs the day before he really didn't want me to keep fasting so I had a sandwich at 9:30. At 11am the anaesthesiologist came around to ask me some questions and take me to surgery!!! But we had to tell him I had eaten so he said they would have to do the surgery at 3:30pm if they did it. He went and spoke to the surgeons and they said to not do it. It is incredibly frustrating but they discharged me at 4pm on Wednesday so at least I get to be home for the holidays :)

Thank you for all your prayers- sorry I haven't really replied to many messages I have been resting as much as possible but I will get around to replying when I am able :)

Wednesday, 9 December 2015


As most of you probably know by now I have been in hospital over the past week. I am home now but still very sick but I wanted to fill you in on whats been going on.

I have a ACE (other terms for it is a appendicostomy or Malone Procedure. This is the definition
the surgical operation of opening the vermiform appendix to irrigate the large intestine.It is basically a procedure where they use the appendix to make a channel to the bowel for chronic constipation. I have had this for 3 years and have been incredibly happy with it and never had any issues with it... until this saturday.

So backtrack to Thursday I was due to have a clean out but I had come down with a stomach bug and I was told when I first got the ACE if that happened to not do a clean out until a day after the virus was finished. So Saturday I went to do my clean out and could not get the catheter in any more than where the plug stopped, it was bleeding and the liquid was spitting back out at me. Waiting out Saturday night and Sunday was so hard but on Monday we went to my GP Dr. Lomas (who I LOVE!) She and her nurse tried to get it open with cervical dilators (haha!) but it wouldn't go in and we didn't want to push it to much and end up in emergency surgery. She told us that she would call the stoma nurse and the colo-rectal and surgical team to try and get me in but she couldn't so Mum rang up and they told me to come straight into the ER and that the surgical team would be waiting. The hospital was an hr away so we jumped straight in the car and headed up there, we didn't pack a bag as we didn't think I would be admitted... how wrong we were. 

The surgeon attempted to open it while I was awake even though I didn't move he couldn't get it and he didn't want to push and perforate the bowel so he admitted me to get some images to know where to aim. When he did a Xray he said that he didn't want to attempt it and I would be spending the night at the hospital... the first inpatient stay since I transitioned to the adult hospital. I finally got into the room at 8:30pm. I was EXHAUSTED! I got a heparin shot (by the end of the stay my tummy looked like a pin cushion. I also got some IV nausea meds and pain meds.

In the ER

The next morning I woke up at 4am and couldn't fall back asleep. I had another heparin shot . The stoma nurse came to see me and told me that my ACE looked like it had been well taken care of and it wasn't my fault. The surgeons came round and ordered a contrast study and fistula gram and told me I would most likely be in that night as well. They tried to remove the blockage with wire but were unsuccessful and once again didn't want to perforate the bowel.  The contrast study didn't work because the liquid kept pouring out as the hole was closed (I knew that was going to happen). 

Thursday morning was rough. I was meant to go to Rocky Bay's Walk with Me event as an ambassador but I was too sick to go. I also got rough news from the doctors- They told me that it looked like the ACE was completely blocked- due to scar tissue from EDS and the weight I have gained from the steroids. They talked about giving me a stoma bag. 

Still a Zebra

On Friday I had surgery to do a manual evacuation and  try and reopen my ACE but as suspected it is completely blocked up. I have to make some tough decisions- and soon. I slept most of the day and had a fever on and off all day. 

Before Surgery

After Surgery

On Saturday I was planning to hold a scentsy party- I was really disappointed not to be out on time. I had to stay in to TRY and clean out my bowel as the manual evacuation didn't work. I got a NJ tube placed and got 3 litres of colonlitely through the NJ tube, 8 suppositories and a enema and still didn't go to the bathroom as much as they were hoping I would be. 

On Sunday the variety christmas party was on and I had promised i would take my nieces and nephew. They let me out for the day but I had to come back. I was so sick the whole time, I could barrely keep my eyes open. When I got back to the hospital my blood pressure had gone from 100 to 150! I was in my wheelchair the whole time and didn't do much but I still got so sick from it. When I got back they put some pico prep through my NJ tube to prepare me for a enema on Monday. 

On Monday I was taught how to use the NJ tube and was allowed home, on the conditions that I put colonlitely through the NJ and rested as much as possible.  I was told I am still very sick but until I make decisions they can't do a lot for me. Now I have to think about the future and my quality of life. EDS is cruel and hard and it always reminds me how life can change in an instance.

During my stay I missed my service dog Mary so much but I have been told that next time she can stay with me- as she picks up on my seizures before they happen

I want to thank everyone for their thoughts, prayers, cards and gifts- please remember a kind message means more than an expensive gift.. 

Flowers from Toni

Flowers from Rocky Bay and my Aunty and Uncle 

Beautiful Zebra from a friend it says:
"I'm sending you  hugs, smiles, sunshine,  rainbows and butterflies"

Flowers from my Aunty and Uncle

Please pray for me- and family and friends please remember that just because I am home it doesn't mean I am healthy.

Friday, 30 October 2015

Things not to say to someone with a chronically ill person

Things I don't want to hear as someone with a invisible illness/chronic illness:

1. But You Don't Look Sick: this one is probably the most common comment when I explain to someone about my health 9 times out of 10 I get this comment

2. Maybe some vitamins/eating healthy will help: Don't you think we have probably thought of this? I was sick when I was a baby so I am pretty sure it is not that... Yes eating healthy and taking vitamins is always a good idea no matter how healthy I eat I am not going to be cured. Also my stomach is paralysed and it is harder to digest vegetables than more unhealthy things made of sugar because they pretty much dissolve. Some days I have a lot of trouble eating.

3. Drink more water: I drink tons of water everyday because I have Dysautonomia and it is incredibly important for me to drink water and take salt tablets, sometimes I need IV fluids so I know how important it is to drink water.

4. Why don't you just go to bed earlier?: I get this comment when I say I am tired but trust me I go to bed early most days I sleep on and off all day and then i go to bed about 5pm to 6pm. It is a type of tired no amount of sleep will cure.

5. You are SOOO lucky you get to sleep all day I wish I could do that: NO! Just NO you don't. Not being able to do anything is not fun. Not being able to go to work or go out at night with your friends or heck even walk to the bathroom by yourself is not fun. I would not wish this on anyone- not even my worst enemy but I can tell you this life isn't fun. I am envious that you can run around all day and not collapse please remember this before saying this.

6. Your STILL sick?: That is generally what CHRONIC means. I wish I was better and I could tell you I was better but I can't and saying this makes me feel like I can't be honest about how I feel when people ask how I am most of the time I say "Oh hanging in there" or "I'm fine" because of these comments.

7. At least its not cancer: Yes I am very lucky to not have cancer but that doesn't downplay my illness- people die from my illness too, it takes your whole life away you have to rest and you can't go out and do things and you do treatments. Just because I don't have cancer doesn't mean its not hard.

8. Your too young to be sick: Maybe I should show my illness some ID?

9. Just be positive: I believe positivity is helpful for my mind but being positive is also not going to cure me. Saying I am sick isn't being negative it is just being truthful.

10. You take to many medications: I am sorry if this is rude but do you have a medical degree and know everything about my health? No? The only people that know whether I am on too many medications is my doctors and myself all of my medications are closely monitored without them I can barely move without crying in pain and I pass out more that 15 times a day so it is impossible for me to go off of them.