Today I got the news that the MRI I have been waiting for, that could drastically change my life, is scheduled for April. Four months might not seem like that long. But when you’ve been in constant pain for almost two years, it seems like forever.
I have two options.
I can wait until April. That thought makes me want to weep. I have been dealing with this for so long now, and I am so close to treatment that might actually help. At the moment, I exist from painkiller to painkiller. I sleep packed in hot water bottles. I avoid sitting, many social situations, and I can’t do the work I love because even, now, writing this, my shoulders are in agony.
When I visited my GP last week he noted that my lower spine is much further inflamed. I have literal “knobs” on my muscles, which will then pass the inflammation into the bone and cause it to start fusing. The longer I wait, the worse things are going to get.
As I’ve explained before, the MRI scan is a prerequisite to getting the drug Humira, a TNF inhibitor that works well for many patients with autoimmune conditions. It’s dangerous and expensive and it’s not given lightly. You have to fail all other treatment options first, and you have to have the right type of MRI result.
My rheumatologist wants me on that drug. But he can’t prescribe it until I get the scan.
Or, I can go private and get the scan in January.
This will cost around $12-1400. It’s probably obvious I don’t have that kind of money.
The scan still might not give me the right result. But it will put me one step closer. And the worst thing about all of this is being so close, but not knowing. I just don’t know how much longer I can deal with the pain, with no progress. I desperately, desperately want to be able to get this illness under control so I can go back to work. So I can live my life.
Anyway. I wanted to ask you all what you think. Should I fundraise to go private? Is this completely selfish and over the top and impatient and should I just wait until April (or longer, if I get bumped for higher priority cases which often happens)?
Totally vulnerable moment here, but please, tell me what to do.
Update: I just spoke to Nelson Radiology. They have my referral. For $1350 they can see me in a month.
Fundraise is a good idea I reckon unless they will let you pay it off?? It can take a while for humira to work as in my case took 6 months before I saw a 50% decrease in symptoms. The quicker you get the drug the better.
Fundraise. Nothing to lose and everything to gain I reckon.
fundraise that shizz.
Fundraise. You’re worth it.
I will kick off your fundraising with $200.
Is “the thing” S M BENNETT 06-0821-0299177-10 still operating?
Hi Haydn! So good to hear from you 🙂 I’m doing a Givealittle for this so if you want to donate through there you can, it’s http://givealittle.co.nz/cause/writehandedgirlmri#.
I’ll be in touch with you in the new year to catch up and talk gossip and taxes!
Just do it. I have a son now receiving this drug. Best wishes for a much better life in 2015.
So glad you’ve decided to fundraise, no one should have to live with the kind of debilitating pain you are suffering from and have to wait four months just for a MRI scan. I’ll definitely contribute to your givealitte campaign