"Where there is creativity, there is hope." ~ Donna Karan

Wednesday, September 28, 2011

Things will get better. Better things are coming.

I finally had that MRI of my spine a few weeks ago.

Holy heck.

I forgot how claustrophobic the machine can make you feel, and to make matters worse my head was also enclosed in some tight contraption. Weird.

Music to the rescue.

With Jessica Mauboy's song 'Run' blaring through the headphones, I remembered the good old days when running was realistic and I smiled at the possibility of being well enough to run again one day. I momentarily forgot that I was even in an MRI machine with pain shooting down my spine, coursing through my shoulder blades. I'm gonna freaking run again one day. Yep.

The scan was over within forty minutes. I had suspected that nothing showed up because I was told that it would take an hour and going by my previous MRI of my wrists that revealed inflammation- I was in the machine for well over an hour. Yeah I had it all sussed out. So I thought.

I was sent home with a copy of the scans and happened to notice what looked like the result printed on the label. I wish I hadn't.

It claimed that I had a musculoskeletal infection. I was furious. Why they would print that on the label before the results even reach the referring doctor is just beyond me. Being curious frustrated, angry, tired and in pain; I consulted doctor google for answers. It only left me terrified.

I scolded myself for being so silly, pulled myself together and got on with things. I thought surely if it was anything serious they would hurry things along.

At my rheumatologist appointment last week, results were still out of reach. All other tests came back normal. My heart sank. I feared I would never get any closer to qualifying for stronger drugs and I doubted that things were going to get any better.

My rheumatologist agreed that the MRI results were most likely normal. I was pretty upset. I had my heart set on something showing up so that things could get better. I didn't want anything to be wrong, I just wanted answers for six months of hell. I wanted a solution.

I learnt a lesson though, don't look at the labels on the scans and take it seriously. Although, you've gotta admit, I've got a solid point- it should never have been printed on there in the first place. I don't believe terrifying patients is ethical. Maybe they think patients don't look at their scans? Well I always do, so they thought wrong.


Any who, after rambling on about negative test results, my rheumatologist examined my joints. Unexpectedly, I finally got given a possible solution to my pain. My joints were much worse on the lower dose of 7.5mg prednisolone and so I qualified for stronger drugs. Hurrah!


Holy Hallelujah.

I felt like I had won the lottery. I felt that I still had hope to believe that things would get better.

In regards to the MRI, my rheumatologist was wondering if psoriatic arthritis would show up as she believed that my symptoms were a pattern of psoriatic and not rheumatoid. However, with no family history she is now convinced that I fit into the category of rheumatoid because 1) I had carpal tunnel syndrome at the age of twelve (and arthritis causes carpal tunnel syndrome), and 2) My nan has rheumatoid arthritis, so there's a family history.

Turns out we are on the right track. MRI results came back today.


So it's rheumatoid arthritis I've had all along. While I'm relieved and looking forward to better pain relief, I know that there is no easy fix and I am extremely depressed and disappointed.

I'm shattered.

This stupid disease attacks my hands, feet and knees; and now it has taken my back hostage.

Rheumatoid arthritis can GO TO HELL.

I was a little naive in thinking that stronger drugs would be as simple as popping another pill. Nope. Far from it. I'm starting on Enbrel, which is a weekly injection I have to do myself. One week after qualifying, and I'm still waiting for the paper work to be finalised. I then have to attend another appointment to sign the papers. Then, it's off to see an Enbrel nurse who will teach me how to shoot up. How sexy.


I'm not gonna lie, the thought of having to jab myself with a needle once a week is a little scary. Although, I am a professional pin cushion. I can totally do this. If this is what it takes to feel half decent and fight this bitch then I'll do it.

Enbrel is serious stuff. I've been warned that it can cause infections and if I get one, I'm to go straight to emergency but I'm believing that I'll be fine. I'm believing for no side effects. Now that will be a miracle (you all know me and medication side effects).

I've been told that it can take up to six months to start working and I've also been told not to expect miracles. Heck, I'm expecting miracles- it's all that's keeping me going right now. Honestly though? I am scared that this drug won't relieve my back pain but I'm trying to stop my mind from feeding on the negative. Because, what if it does work? What if it gives me some of my life back?

If it doesn't work, we will find something that will. Things will get better. I just know it. Whether it's next month, next year or in another few years- things will get better.

How do I know this? Because God's word has promised.

Romans 8:28 - All things work together for good to those who love God, to those who are called to His purpose.

I have been promised that things will work out. The creator of the universe is in control and His word never ever fails.

Things will get better. Better things are coming.


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Beckie said...

Hey girl! Keep your eyes upon the Lord. Our struggles are our ministry.

I used to take Enbrel for Psoriasis. The self-injecting pens hurt like crap. They can give you pre-filled syringes. These are are the way to go! This way you can push the medicine in slowly and limit the pain. The auto-inject of the pen is awful.

Praying for you. He who is in you is great than he that is in the world.

Be Blessed, Beckie

Alanna said...

Oh hun :(

I agree with Beckie - I take Humira (which is like Enbrel) for my RA. I use the auto pen at this stage just because at first the needle part didnt sound too appealing (yup, and I'm a nurse). But it does hurt A LOT. Luckily, I have a very supportive boyfriend who does my injections for me. I also use Emla cream which is a topical local anaesthetic. Lessons the pain of the needle going on, but the actual fluid going in still hurts.

I hope I'm not making you feel horrified, just trying to share some tips from my experiences!

All the best with it Emily :)

Miss Chronically Creative said...

Hi Beckie! Oh gosh, it doesn't sound like it's going to be simple. I had no idea there were different ones I'm not sure which one I'm getting but I'll make sure I'll ask for the pre-filled syringes so thanks so much for the advice! I'm used to being a pin cushion so I'm hoping I'll cope with it ok, I recently had a trial of viamin B injections and out of all the injections I've had they were by far the most painful, so I'm hoping enbrel won't be any worse. Thanks so much for the prayer, I really appreciate it! Bless you!

oh Alanna! The irony is quite hilarious haha! Ok so it sounds like needle is the way to go. Aww how lovely is your boyfriend! You're so lucky you have someone willing to do it for you, I hate the thought of having to inflict pain on myself. Can you get that cream over the counter at the chemist or do you need a script? Nah, I'm not horrified I'm just feeling a like a total newbie, and I'm glad people are telling me what to expect. I just hope I don't get sick from it. I'm sure I'll be fine, I'm tough.

Alanna said...

So I know this was a month ago, but your last post about switching to Humira now made me think about this and I came back :)

I get Emla over the counter. Unfortunately, it's ridiculously expensive. I think it's $20 for a teeny tiny little tube. You do only need a little bit each time though. I put on a little dab, and the cover it with a bandaid plaster for about 30-45 minutes to let it work.

I get a little reaction sometimes for the Humira, just itchy, sometimes it bruises but I think that's just cos I bruise super easy and it's mainly from pinching my skin rather than the injection. Ice helps afterwards, I pop ice on more ofter than not after the injection. It helps the sting, and lessens the itchy aftermath.

I find it hurts less, and has less of a reaction, if I inject my thighs as opposed to my tummy.

I hope you don't have any bad experiences with Humira and we can be Humira buddies together :)

Miss Chronically Creative said...

Ah what a hassle and a rip off. I guess it's not too bad though if it's gonna help abit.

Did you have to enrol online? I got an information pack and once I receive my script I have to enrol online. I laughed because it sounds like I'm enrolling in some course haha! Did you see a nurse to get started? My rhematologist said I'll see a nurse but the information pack says nothing about that and just has a dvd on how to do it so I'm really quite nervous now.

Thanks so much for the advice. I'm sure it will work well for me. Yay for a humira buddy! I'm so glad I don't have to go through this alone.


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