A married woman!

Hello again,

I wanted to come back to my blog because I haven’t touched it in a while. It’s not that I forgot about it or didn’t have anything to share but more so didn’t know how to write for a while. University took up most of my energy and time which resulted in me not having time nor the energy to blog.

So, since September I finished my first year of study at university and also had my wedding!

The lead up to the wedding was absolutely horrible. Due to the amount of stress I was dealing with, I flared up to what is now one of the worst flare ups I have experienced. I couldn’t do anything by myself. Walking, moving things (even my pillow or blanket) and sleep was out of the question. But the flare up was so different compared to the rest of my ‘normal’ flare ups, not only were my joints becoming inflamed and painful but also my muscles and tendons. A week before the wedding I had to get a cortisone injection into the tendon in my palm as it had gotten so swollen where opening up my hand was very difficult and painful.

The wedding day was just as stressful but in the end everything was perfect! The reception, the day, the bouquet were perfect and the dress’s hoop had a mind of its own but still happy with it.  I woke up sore, anxious and just wanted to go back to bed! At the end of the day, I just wanted to go home and sleep. Heard of anyone who wanted to leave their own wedding early? Well that was me. I was exhausted! Having chronic illnesses and being the spotlight at a massive social event was not my cup of tea!

Although it was a challenge for me to continue to smile through the pain, I was happy beyond imaginable.

Thank you to my family, friends and other guests at the wedding who made the night beyond amazing, the energy that was in the room was incredible.

Thank you to my husband who allowed the two of us to enjoy such an amazing and special night. Thank you for sticking by me when times became tough, when I would cry at night for no apparent reason you would talk me through things (and then fall asleep), thank you for making me laugh, thank you for being you when you’re with me.

Thank you to my mum. Who was there day in and day out, who reassured me about everything I was worried about, who made sure I was okay no matter what the consequences, who laid awake next to me during my sick nights, who watched me sleep just in case I awoke in pain and who loved me regardless. I love you Mum. Thanks for everything. You made me who I am today and I’m so grateful for that.

Having my own home and my own responsibilities wasn’t and still isn’t easy. I struggle with trying to come up with a routine to ensure I am having enough time dedicated to study, the housework, my husband and myself. Just before I started typing this I was trying to learn the equations for my biomechanics unit. I mean, it’s getting easier as I go along but the stress levels are still way up there.

I guess things will come to me sooner or later..

As for my health, I am doing better but still have the occasional flare. Right now my right wrist and right ankle are flared up as well as some tendons in my palm.

Anyways that’s all from me today.

Ray x

UPDATE

Hello to anyone who still reads this, 

I haven’t updated in a really long time so I guess its time to update my blog. 

What have I been up to? 

Well, I completed my final year of high school & received my Higher School Certificate and got into the University of Western Sydney and I am now completing a Bachelor of Sport and Exercise Science. That’s as far as education goes. 

My health is significantly improving with a couple flares and complications along the way. I was put on a new medication back in March named Cimzia which is given subcutaneously (into the stomach or upper thigh) fortnightly. It is helping with the pain, swelling and preventing the flare ups pretty well. During the winter months I did experience a peak of flare ups but that is normal with me. And now that we have approached Spring in Australia my fibromyalgia is slowly creeping back. 

I also became engaged back in December and we got married in April (Civil wedding; signed the papers – legal and done our religious ceremony) – Wedding is coming up in 5 months! – eek. 

I’m not going to go into much detail about my partner or anything but I am very lucky to have someone who is as supportive as he is. I am very blessed to have him. 

 

Thats pretty much my update.. 

I’ll be following with more posts shortly. 

We shall be in touch, 

Ray x 

Sometimes.

Sometimes I like to stare at my ceiling and picture certain scenarios in my head that make me happy, but the possibility of these scenarios are close to impossible. Is it weird that I’m happiest in a fantasy world? If only my dreams could become a reality.

Questions.

1. Are her lips like the hot chocolate your mother made
During the winter months when you were seven? Or have you not tasted her well enough to find the fine granules of cocoa that lightly come with each kiss?
2. Do you know her favorite songs? Not when she is happy, but when she is sad. What music reaches inside her ribcage and softly consoles her heart?
3. When she is sad, are you on the phone or are you at her door? Words do not wipe away tears, fingers do.
4. Do you know all the things that keep her up at night? Do you know why she has gone three days without sleep? Do you know of the insurmountable waves of sadness that wash over her like a tsunami?
5. Do you know the things to say that will calm her heartbeat? The places to touch? The places to love?
6. Everytime you see her do you kiss her like it’s the last time but love her like it’s the first?
7. Do you love her?
8. Do you love her?

– “Things I want to ask your boyfriend” Nishat Ahmed.

To do list

Things I want to do before I die:

1. Learn guitar
2. Travel & see the world
3. Learn a new language
4. Read books that leave me speechless
5. Fall in love, get married and make my husband happy 
6. Make new friends who listen and talk
7. Learn to cook foods from all different cultures
8. Learn to make proper coffee
9. Get a job with people who are fun to be around
10. Skydive
11. Taste foods from all around the world
12. Have a road trip strictly for cafés only.
13. Be successful
14. Be the best person I can

If I think of more ill update it

Thoughts

1. When your friends ask you to hangout, and you don’t feel like it, don’t go. Don’t ever do things halfway or do something that makes you uncomfortable. With everything, give all of yourself, even the pieces you never knew existed.
2. It is okay to not know. Everyone always despises the phrase, “I don’t know” but no one tells you that it is okay to not know. The becoming is more important than the being, anyways.
3. If someone ever makes you feel less, in any way, you have every right to walk away. You have every right to cut out toxic people in your life. To close the door on people who make you feel bad about who you are or what you stand for. Friends don’t tear down, they build up.
4. Loss is always going to happen. Just like paint will always chip and rain will always fall, loss will always be part of life. No matter how much I don’t like it, or avoid it, it is going to walk my way at several times in my life. Learn to embrace it and learn to get closure.
5. Give yourself a chance. Stop saying, “I don’t think I can” or “But what if I am not able to?” and give yourself a chance. This may be cliche, but try to believe in yourself. When you get older, your knees won’t work the same and you won’t have the best memory, and you are going to wish you’d given yourself a chance years sooner.
6. Fall in love. Don’t be guarded before you fall in love. You could fall in love three times and still not find the right one, but none of it is going to make “the one” matter less. Don’t fall into that idea that your first love has to be your best love. Fall in love as many times as it naturally happens.
7. Firsts are going to be messy. First loves, first kisses, first dates, first failed tests, first college class, first time you drive a car, first time you ride a plane – first times were made to be imperfect. Just because it’s messy and all over the place, doesn’t mean it can’t be good or worthwhile.
8. You want another scoop of ice-cream? Go get it. Get three more scoops of ice-cream if that is what you want. “Fat” is not the opposite of beautiful and it is not the opposite of happy. Don’t let anyone tell you that your body type isn’t beautiful. Beauty is a social construct, create your own, become your own.
9. Let yourself be alone. Loneliness is not a bad thing. It is healthy and normal. Everyone needs to spend a good portion of their life alone. We learn who we are when we are alone; life is less crowded and more clear when we are alone.
10. If you aren’t happy where you are, change it. Quit your job, move, become a vegetarian, get a new hobby, pick up an old hobby, whatever you do – make sure it benefits you. Life is too short to not be alive, to not be passionate, and overflowing.

Maybe I am a little scared.

Last night after my increased dose of methotrexate i started to get really bad headaches and stomach pains. I couldn’t really sleep from it. Then I started overthinking about what the doctor had said about the next step we’ll have to take of my medicines don’t work.

The thought of injecting myself once a week or fortnightly scares me. I’m good with needles because I’m used to it. I have regular blood tests and I’ve had multiple joint injections with no nitrogen gas to knock me out. I know it’ll have to be a learning experience and I’ll grow from it and become a stronger person, but I’m allowed to be scared right? I can be scared of what is to come and no one can tell me otherwise. The fact that this new medicine whatever it is, has it’s own bunch side effects that I will have to learn, I’ll have to learn the precautions and it’s possible effects on my life in the future. I mean there’s so much that goes into a new medication. You have to learn how your body reacts to it. What if I’m allergic? Am I willing to risk serious side effects for something that MAY work?
I don’t know.
Another thing I’m scared of is that when I was waiting in the doctors yesterday I realised I was the youngest person there. Looking around I knew my future could potentially be their lives.
I know I’ll have to wait.
But I’m scared of what the future brings.

Ray

Mums

Mum came into my room today and asked if I was okay with all that happened at the doctor. She then hugged me and I replied “Yeah mum, I’m fine why?” And I looked at her and seen she was in tears. I wasn’t sure why she was so upset so I asked. She said do you know what they’re testing for in the xray? I replied with no? She explained that they wanted to see if there was any permanent damage done to the joints.
Mum seemed pretty upset about everything but I tried to reassure her.
I told her I’m not stressing over the whole injection thing yet because I don’t wanna overthink it. But she knows I’m scared.
I know that no matter what happens she’ll be by my side supporting me and helping me become a better person.

I love you mum. And I know you’ll eventually read this. Thanks for everything.

Mums, they’re our own superwomen.

Ray..

Appointment details

I had my regular checkup with my specialist today. He was really shocked at my current state of health. This was the first time he seen me this bad.

He ordered an X-ray to be done on my hands but didn’t explain what he was looking for.
He increased my methotrexate to 25mg and my plaquenil to 400mg and he said that we will see if that helps.
He also spoke to me about the next step we will have to take if my medications don’t work. He told me about the new agents that are available but hard to get due to the governments criteria. Due to my blood tests not meeting the criteria it’s hard to get. But he said once I turn 18 (in two months time) I will be able to have access to the new medications. These new medications are all injections which I’m used to now but they are ones you have to inject yourself which kinda scares me. But I’m trying not to stress over that until the time comes.

Also have cortisone injections next Friday!

Ray.

People

Anyone who knows me knows I’m a friendly person who is kind and will go out of her way to help anyone in anyway she can.
There’s two types of people:
1. The ones who will appreciate you & all you’ve done for them. They respect you & will be there for you in the future if you needed anyone.
2. The ones who take and never give back. They take advantage of your kindness and they know you won’t do anything to stop their actions.

I’ve always thought it’s rare to find genuine people, and it keeps proving me right. When I do find genuine people it’s something I treasure forever.