Bob Hair Roadtrip

One of the two things I love about going on road trips with J is that she LOVES to blast music super loud and dance like nobody's watching.  Even if the people in the cars next to us are watching.  She doesn't care.  I don't care and we both have fun just dancing and singing as flat as we can.  Well in my case super breathy can only get 2 words out before I'm out of breath lol.  The other thing is she feels so special wanting to pay for EVERYTHING for everyone.  She must think she has unlimited money in her account.  I think her mum would beg to differ.  Lol. She is such an amazing generous person and I'm so lucky to have her in my life 24/7 even if sometimes she gets mad at me and wants to call her mum to tell on me lol. 

We had an amazing time away and so glad we were able to spend the night with Leanne and eat way too much junk food. Chinese was good.  Sorry Aunty Sharron.  Lol.  Road trips are meant for food and loud music at least we passed on the alcohol. Hehe. 

This morning we drove into town where J gets her hair done (she calls it Bob hair like Bob Marley) and patiently waited for Sam to arrive.  She loves Sam though she doesn't love getting her hair done because it hurts.  She also made me stand with her the whole 40 minutes we were there.  Lucky I love her. 

When we were done with her hair we stopped in at Albany mall and had tank for lunch.  Also managed to lose the car keys but luckily we only went to 3 places so I back tracked to the 2 food places we went to before going to information where someone had handed them in.  Nearly had a mini heart attack. 

Tonight we are at dinner with Js Poppa at the bowling club and having fun together.  We are so lucky that we get to spend time with him and I know that J loves being here.  Secretly,  I think she just loves the food lol. 

Busy couple days but home for the weekend before heading to Auckland again Monday for surgey then a night with a friend Tuesday and home again Wednesday.  It wasn't a very smart thing for me to go to Auckland twice in a couple days but J needed her hair done and I had an amazing time away with her.  We need to do more road trips together I'm thinking. 

Where to next...

Trachy Study

A couple weeks ago I received a phone call from Auckland DHB ORL team wanting to know if I would be interested in participating in a trachy study.  It wasn't anything big but I thought the least I could do was participate in the hopes it helps other people. 

The study was broken down into 2 sections.  The first one being a face to face interview where they asked question on how I dealt with the trachy.  How it affected my life.  Did I feel I got enough information when I got the trachy or left the hospital.  I really enjoyed it and even though I had only just had surgery the day before I still managed to talk and share how I felt having a trachy had affected my life.  Or even enhanced my life. 

The second part of the study was last week where they had a design work shop and everything was related to the design of the trachy.  And how we could get more information from a personalised website. I loved the design side of it.  It was a personalised website based on the type of trachy you have and what sort of information you were after.  Mostly they wanted to see what information was missing from the site.  What needed to be added.  Taken out.  It was great. 

The other side of the design aspect was the way the trachy looked and if there were things that we felt needed to be changed.  For me personally I wouldn't have changed much aside from how far out the trachy protrudes but other than that I was and am happy with the current design.  The design student who is doing her honours had made different types of designs using a 3D printer.  She also had made different types of straps which all were awesome.  I wish I had taken a photo but I was too excited to check out the new designs lol. 

I loved being able to go and participate in the workshop and know that what information I provided based on my own experiences would hopefully help other people who have trachys or for those who have family that need trachys. 

I gave my email address to the students in case they wanted more info as the workshop was only done that one time. 

As much as i am over having a trachy I'm still so grateful that I have it as it helps me to breath.  I'm also grateful that there are people who are willing to study and work towards helping others with information and different designs. 

Surgery Galore

For the last month and a bit I've been traveling to Auckland every 2 weeks for surgery with another lot coming up again October 3rd.

Things are slowly progressing to a better end result but we've also had to deal with a lot of complications along the way too. 

When we first did the flap surgery back at the beginning of August all went well.  It was a 3 hours surgery,  I spent 3 hours in recovery but all went well.  I spent 4 days in hospital before being discharged home however I was back in hospital a few days later where an NG tube was also inserted as I was having difficulty eating and swallowing.  After a week the tube was out.  I was able to eat albeit soft foods and was booked in again for more surgery. 

Since that last major surgery I've since had a couple more.  Most have involved steroid injections, checking of the flap along with lasering any granulation that has formed.  The clips had also come away from one side of the flap so last week we went back in where they used some glue to glue the flap down.  The flap is looking healthy and amazing and we have high hopes that if all goes with with it and that we can get it to stay we can look at talk about trying to decannulate.  At the moment it's sort of a waiting game to see how the flap heals and to go from there. 

My surgeon did also say we've run the course of doing surgery endoscopicly soo anymore surgery we do will all be done externally.  It's more healing time and more time in hospital but I'm feeling rather good about the whole being able to discuss and talk about getting the trachy out. 

There are a lot of downfalls about hospital and one of those is the food.  It's not good at all.  Lol.  Wait I lie,  the jelly and ice cream is good but for the most part it's gross.  I always go to the supermarket before hand and make sure I've got food on me so I don't have to eat the 'amazing'  hospital food.  I've been quite lucky as a few times I've had a friend bring food for me soo that's always awesome. 

Another downfall about hospital,  though it's more of a me thing is having to be 'sharp scratched'  allll the time.  I have no idea why they say sharp scratch as they're about to stab you with a needle but they all like to say it.  I don't have good veins but my veins aren't bad either.  They're great until you stab me with a needle then they run away.  Hence the million holes I end up with in my arms when they're trying to get a line in. 

Even though I don't know what it's going to look like just yet I'm super excited about what the future is going to look like.  To be honest I don't think I'll know who I am without a trachy and I'll probably still be the block the trachy when I talk person for a while.  I know it's still early days but like I said,  I have high hopes.  Things can only get better. 

Moving Forward...

"Don't hold onto thoughts that don't allow your mind to move forward." 

Last night for some reason I was feeling blah and when I woke up this morning that feeling hadn't gone away.  I took it out on people who didn't deserve it and I didn't like that at all. 

I didn't want to do anything this morning and to be honest all I wanted to do was stay in bed and mope all day.  I knew though that that wouldn't help how I was feeling. 

Finally 9am rolled around and I got my butt out of bed changed into some workout clothes and hit the pavement.  I made sure to turn the music up loud and I just keep walking.  I don't know how far or how long I walked but I do know it helped clear my head.

I still don't know what was/is making me feel like I'm in a funk but I'm feeling a lot more better than I was last night and this morning when I first woke up so that's something. 

I think sometimes we can get into a funk that can be hard or difficult to get out of and I'm so grateful that I can use music and exercise to get me out of a funk.  I know it's not always something as simple as music for others but I hope if anyone was feeling in a funk they'd have or find something to help get them through. 

Self Confidence

Sooo this is ME!

 

 

For over a year now I've been dealing and living life with a trachy.  I've had multiple surgeries in the hopes of eventually getting the trachy out. 

Recovery hasn't always been easy in fact there have been times where it's been so rough I've had to go back to hospital a few times. 

I'm so grateful to the Nurses, Doctors,  my surgeon and the amazing family and friends I have that support me and help get me through life as I deal with the ongoing issues we have from having the trachy and multiple surgeries.

One of the things I know I lack since getting the trachy is self confidence.  Don't get me wrong I'm totally grateful,  lucky and blessed to be alive and to be here but there are times when (even though I know better) that I struggle with the whole... People are going to judge me or stare at me mentality.  It has stopped me from doing a lot of things this past year and even though I say if people can't accept me as I am then I don't need them in my life it's easier said than done. 

Over this past year I've also signed up for multiple work from home opportunities thinking... I'll just use social media to get me through because I was always too insecure too go out and do something more.  Eventually I stopped with them mostly because of insecurities and also to do with the company not working out.  A few months back I tried another product.  Not to sell it or even to do as a business but mostly because I loved the reviews and information I had read about the company.  With life being hectic, the big move to Whangarei and multiple hospital visits I stopped taking the product. 

It wasn't until my last hospital visit and something that I saw on a FB live video that made me realise that...  Life is way too short. I know we can't always hope,  want or expect life to go to a plan.  There is no plan.  I've spent so much of this last year afraid to do things because I 'cared'  what people thought about me and the trachy.  Would they laugh at me? Would they judge me? Would they stare? But seriously Why should their opinion matter?  If I'm happy and 99.9% of the time I am why should I even care what people think?  Why should I let people's opinions or thoughts on how I look or what I do stop me from being me or stop me from sharing a business opportunity or even think about going to school? 

If I've learnt anything it's that life really is way too short.  We don't know what tomorrow will bring in fact we're not even guaranteed a tomorrow.  Live everyday as if it were your last.  Take a chance.  Take risks.  Don't be afraid to do more.  Who cares what people think. Don't let anyone make you feel like their opinion matters.  If you're happy that's the most important thing.  

Now go out there and be awesome who really cares what people think.... !

Social Media

I've been sitting on this post for the last little while wondering whether or not to post it.  End of the day I came to the realisation that I blog for me and not for anyone else.

I will be the first to admit I am on my phone all the time.  It's with me 24/7 and unless I am with family/friends etc I keep my phone out of site and focus on the people I am with.  There has been the odd few times when I have been with friends and I have used my phone but for the most part I always try to be engaged in what is going on in front of me rather than on some 5 inch screen filled with strangers.

As much as I love screen/phone time I would much rather spend time with people I love and care about.  It does make it harder when sometimes the people you are with are just as addicted to their phones and their "social media"  life as you are that if anyone was to take a photo it would be one of very antisocial people faces in their phones sending a tweet,  doing a FB status update,  posting to instagram or even sending a snap chat.

I'm not judging anyone at all I guess these last few weeks it's made me realise what is and who is important to me.  It also to some degree makes me sad.  So much of what we share of our lives is broadcasted to social media.  Whether it's Facebook,  Twitter or Instagram.  I know I am guilty of doing that but (and there is always a but) at the same time I also still call friends/family (at least the ones I know who care and want to know)  to let them know what is going on with and for me.  I find it sad that if I want to know what is happening with family or friends that I have to go to social media and what gets me the most is that even when you do reach out you seem to go unnoticed.

I have had people come and go in my life both friends and family and even strangers who some have been amazing.  Some share with me.  Some let me share but end of the day for the most part the only people I've come to realise who you can rely on the most is family.  Family will always be there for you.  Whether it's immediate,  distant,  step they won't ever go anywhere.  I'm so grateful that for all the people who come and go in my life that the one thing that has always been constant for me is my family.  Don't get me wrong I have a couple of friends who have been there for me but end of the day my family will always be there.

I guess in sharing this post I wanted to send the message that,  yes social media is great and if used for positive reasons and influence it can be amazing.  I totally get that sharing your life with the hundreds or even thousands of followers can be fun and rewarding,  it's part of why I blog but at the same time I guess it's good to also remember that life doesn't always have to be a 'competition' of who can get the most likes,  retweets,  or even have the most followers.

Life is about living and enjoying the time we have with the people we love. I'm not saying social media is bad and I know for the most part the people we follow/talk to etc on social media are also people we know in real life so I know it has its benefits.  I guess at times we choose social media friends/family over the more 'real friends/family'.

If I have learnt anything it's that you don't always need to be on your phone.  There isn't anything wrong with taking time out and just switching off.  Living in the wops this last year with next to no service it's made me realise that I don't NEED my phone as much as I thought I did.

Time to take a step back from social media platforms for a bit I think.  If people really want to reach me they can do it the old fashioned way.  Call me.

Friendzoned

It's a strange feeling when you've been talking with someone for so long sharing so much that when you end up being friendzoned that you realise your feelings are a lot more than that of friendship. 

There were times where I thought perhaps things had the potential for more but at the same time he was/is going through something where I thought he wasn't ready to date so never said anything.  This past week however he's dated,  talked to girls with the potential for more and here I am in the friendzone.  Don't get me wrong,  he's an awesome friend and we've got close but never before have I had to experience the whole 'we've shared so much we just friendzoned each other'.  I'm aware that it happens and in my short lived 30 years this is the first time it's happened. 

I'm not sure if I feel sad,  happy or hurt but right in this moment I know I would rather have him as a friend than nothing at all.  I guess it's weird. The one time I actually talk to a guy, it's all platonic and we end up in the friendzone. 

To be honest,  I don't know how any of it  will turn out but for now I will step back and just focus on my weekend away with Aunty Sharron and just enjoy being with family.  I guess like they say,  sometimes you fall for the people you least expect. 

Life With A Trachy

When I first moved back to the far north I wasn't looking forward to it at all. Don't get me wrong I was grateful that for the interim I had a place to come to and that my grandparents were okay with taking me on for who knows how long. In the space of a couple of a month my whole life had pretty much changed. I went from having my own home, starting a brand new job that I worked had to get, a relationship that even though at the time it was a bit rocky it was still a relationship none the less, an amazing nanny job with a family that I loved to pretty much having to give it all up. I felt sorry for myself and I hated that in such a short time my whole world had done a full 360 and my life was about to change. Over the next couple of months as much as I loved being here with my grandparents and being able to spend time with them at the same time I missed the life I had before I got sick. I missed the normality and routine of what my life was and what I was so use too. Now though I sat here dealing with the whole not working, not having friends around, the relationship I was in ended, trying to hurry the hospital along to get this trachy out because to be honest I was over it. I was done and I just wanted it to all be over and done with. Fast forward to today and I'm in a much better head space than I was when I first got here. I have LOVED being here with my grandparents. I've got use to having the trachy. I don't feel sorry for myself and even though I miss work and friends I'm grateful that I still have people and friends who keep in touch. My life isn't the same as it was 10 months ago but at the end of the day I'm alive, I can breath, I have a home and there are so many things I can and am grateful for. I have seen more family these last few months than I have done in my entire life. Family who I hardly ever saw unless there was a funeral. Life really has been great. I've even had the opportunity to travel to Wellington a few times.

I use to be insecure about the trachy or worry about what people thought. To some degree I still feel a bit insecure about it but for the most part if people ask I am happy to tell them why I have a trachy and once they know they don't tend to ask anything more. Then there are the children who stare but generally a lot of people hardly ever notice I think it's my own insecurities that make me thing people only ever see the trachy when they look at me.

In the space of 10 months I've had 5 lots of surgery and every surgery even though I always have high hopes of it being successful to the point of where the trachy will come out it unfortunately hasn't come to that yet. That's not to say that things haven't improved because they have. The surgeries I had where steroids were injected directly into the scar tissue and done every 2 weeks for 3 sessions has really helped with the scar tissue. I am also on 15mg of methotrexate which I take every week as well as folic acid which when speaking with my surgeon she has said that on top of the injections as well as the methotrexate has really helped with the scar tissue growing back.

Last week I had a follow up appointment with Jacqui and in a month's time we will be going in for more surgery. Even though the scar tissue isn't growing back my vocal cords still remain incomplete so there is no active abduction on either side. You can see them trying to abduct but nothing happens. The surgery Jacqui will do will be a posterior glottis interposition flap. Don't ask me what it is but basically she'll chop a flap, fold it over and hope that that gives me more room for air to get in and then we will slowly discuss and talk about decannulation. At the moment the gap isn't big enough for me to have the trachy out but I am hoping fingers crossed that this next surgery will be the last one we have and then we can go from there.

Life is slowly looking up and even though it's nearly been a year I'm grateful that I have the support I need to get me through all of this. That I'm here, alive and can breath. Things could be so much worse. All I can do is stay positive and hope for the best.