A Quiet Reflection

Blog, Thoughts

During the first month of being ill, the pain was unbearable and the hospital visits became extremely tedious, so I’m rather grateful for the position I’m currently in. I can walk more freely with my crutches, spend at least 9 hours of the day out of bed and can put my clothes on without having to sit down (well, most of the time). It really is the small things that count!

My arthritis is still very much alive, however, and I’m having to battle the physical and emotional consequences of that daily. I’m taking an average of 18 pills per day and I’m seriously over it. The medication I’m on causes horrible side effects, where it becomes harder to function and I’m currently living every day as it comes, not knowing what part of my body will hurt next or whether or not I’ll wake up with a headache and feeling nauseous.

Becoming ill has certainly changed my life. With the surplus hours I’ve spent lying in bed, I’ve had time to reflect on my life, thinking about who and what is important to me. I’m having to live life at a slower pace as well and take things as they come. This illness has certainly tested my patience and the patience of those around me.

I recently asked to change roles at my work. It’s a decision I didn’t make lightly, but one that I think is best for my health and best for those who work with me (especially the ones who have been helping out with tasks I’m unable to perform at the moment). I am so grateful for my workplace. The organisation I work for, along with those I work with, are amazing. Everyone has been immeasurably compassionate and flexible with me, making sure I put my health first where needed, being understanding of my shortened hours and finally, my request for a role change has been accepted.

I am also so grateful for my friends. ‘Hard times will always reveal true friends’ is a saying that rings quite true at the moment. It’s funny how something like this would shed so much light on the relationships that I have, making some stronger and some not so much. I’m so grateful for having friends who check up on me, pick me up because I still can’t drive yet, make plans with me even though I’m limited in what I can do and generally show that they care about my wellbeing.

And finally, I am so grateful for my family. I wouldn’t know what to do without them! They have been so supportive, especially my mum who drives me everywhere, rubs my sore joints and cooks me delicious food. It’s hard to live with someone who is unable to function completely without help and I appreciate all the extra effort my family make to help make my life a bit easier.

My hope is that as these negative side effects are emerging, that underneath, slowly the life-changing positive side effects are working their magic too. I’ll be seeing my rheumatologist in about a month, and she’ll be able to tell me whether or not things are truly improving!

I’ll finish with this:

You just do it. You force yourself to get up. You force yourself to put one foot before the other, and God damn it, you refuse to let it get to you. You fight. You cry. You curse. Then you go about the business of living. That’s how I’ve done it. There’s no other way. – Elizabeth Taylor

My Arthritis: An Update

Arthritis Updates, Blog

You may have noticed that I did not refer to this post as “Reactive Arthritis” like my previous post, rather “My Arthritis”. That’s because I have apparently surpassed the healing period for Reactive Arthritis and my arthritis has now transformed. Although the rheumatologist has informed me that I don’t fit perfectly into one specific type of arthritis, she said that I am most closely aligned to seronegative rheumatoid arthritis. If you are interested in finding out more about rheumatoid arthritis, take a look at this Arthritis NZ brochure.

When I went to see the rheumatologist, she was able to do an ultrasound on my joints and we not only confirmed that the inflammation is in my knees and ankles but we also saw that it was in elbows, which I was completely unaware of. The inflammation was also in my ankle tendons, rather than the joint, which was interesting to find out as well.

As a result of my consult with the rheumatologist I’m now on a new treatment plan (unfortunately much larger than I would have liked) called Triple Therapy. This seems to be the standard attack on rheumatoid arthritis and it’s hopeful that it will start helping me. The unfortunate side is that it takes three months to kick in, so I’m also still taking steroids as well. The steroids have certainly added a dramatic amount of fluid weight gain to my body, especially around my face. It’s hard to deal with, but I’m pushing through it knowing that once I’m off the steroids it will eventually go away.

So what does this mean for me now? I have to keep taking the medication – currently, an average of 18 tablets a day (including a couple that my mum is giving me, like turmeric tablets) and in three months time I will see my rheumatologist again for an update. Unfortunately, the Triple Therapy drugs have some nasty side effects, so I have to keep a close eye on them as well and there is also a chance that the disease may spread to my back. I purchased a small notebook to help me keep track of anything unusual because three months is a long time to remember small details!

Due to some of the drugs’ side effects, I also have to get a blood test every month to make sure that everything is okay. It’s a lot to take on, but I’m trying to focus my energy on more positive things like going to social events and reading fun books. It can be hard some days, especially when I’m in pain, but it’s important for me to keep my head high and continue to live life as normally as I can.

If you have any questions about what I’m going through or would like to share your own story – flick me an email, I’d love to hear from you!

Reactive Arthritis: Dealing with Disappointment

Arthritis Updates, Blog

I have to say, the feeling of disappointment is not something that I come across often. I often feel frustrated and annoyed in situations that don’t turn out how I would like them to, but disappoint is another story altogether.

Why am I disappointed? Because as you may have read earlier here and here, I was supposed to have a rheumatologist appointment yesterday. I was called a couple of hours before the appointment to say that the rheumatologist had called in sick and we had to reschedule. It may not seem like a big deal to you, but my heart honestly dropped. I was so disappointed. I had been waiting over a month for this appointment, which included taking extra medication to cover me until then. I had also been waiting to hear what I am supposed to do in terms of physio, the expected timeline of this arthritis, how they think I’m progressing and to get a new treatment plan. The direction and course of my life is currently depending on this rhumatolgist, so to hear that my much-anticipated appointment was cancelled, was shattering.

Having the appointment cancelled meant that I also had to call up my doctors and get another prescription, as I had run out of medication on Monday morning. This turned out to be quite a hassle and of course cost me extra money!

Luckily, the next available appointment was Friday (could have been worse). It is, unfortunately, the most difficult day for me to take time off in regards to work, but after chatting with my manager, she said it was fine for me to take the time off. Later that day, however, (same day as the cancellation and rescheduling) I get a notification that the Friday appointment is now also cancelled and they’ll have to get back to me with another time. I feel for the rheumatologist lady (as she must be pretty sick to take the whole week off), but again, my heart drops. How long am I going to have to wait? What happens with the medication that I’m on? Do I keep taking it? Am I walking properly with my crutches? Should I be doing more exercises to help with the healing? The questions could go on forever.

They got in contact with me today and the new appointment is March 1st – too far away for me to stay on the medication that I’m currently on. That means that I not only have to wait another two and a half weeks to see the rheumatologist (to hear her pivotal decisions about my life), but I also have to visit my doctor again (more money!!) to get more medication and potentially change medication until my new appointment.

With every notification or phone call, I have felt disappointment. It has been hard for me to deal with, as my emotions have overwhelmed me. Having had time to process what has happened and now that I have booked in to see my doctor, I am trying to overcome the disappointment and keep myself focused on the future. Luckily, my best friend and I just booked three days away together over Easter and that gives me someone positive to look forward to! I am struggling at the moment, but becoming self-aware involves figuring out my emotions and right now, I know that planning ahead for something positive is the best thing for me to do. So, with that in mind, I need to plan three days worth of meals so we can do one supermarket shop and then relax for the whole Easter weekend. Got any ideas? Flick a message my way.

For those that are interested, the blog image is a picture of my newly purchased book, Self-Care for the Real World, I’d totally recommend checking it out!