Saw a rheumatologist this past Monday. Specialist in arthritic disorders. He was actually the very first "rheumy" I saw 18 years ago - doubt he remembered ;)
He took my history and then dug out his measuring tape and Sharpie and gave me the arthritic once over. When he was done, he told me that not only is it Ankylosing Spondylitis, but that I need to be on prescription anti-inflammatories every day. Why? I've lost some range of motion (ROM) in my shoulders, axial spine and lower back and my ribcage is at the abnormally low end of the expansion stage. In other words, when I take a deep breath, my ribs don't move. Makes running difficult, trust me.
Ah, I tell him, but I've been on all of the NSAID's - and I rattle them off - and they don't work. So I'm now on Mobicox for a few weeks and then another for a few weeks and then he'll start me on Enbrel - an anti-TNF biologic that will suppress my immune system and, hopefully, stop the inflammation, pain and destruction. That's the plan.
We did a thorough once over of my spinal x-rays - I looked over his shoulder, it's allowed, it's my spine! "The problem with women," he says jokingly, "it takes longer for their spines to fuse." Which is why it's there but not on the x-rays...yet.
Devastated doesn't come close. First a confirmation. Second hearing I've lost mobility due to this disease. Third the knowledge I've reached the biologics stage of treatment and will be suppressing my immune system.
It's like I have to learn to cope all over again. Doesn't help this past few weeks I've been ramping up for a major flare-up. My ribcage is in spasms, my back is in spasms. It hurts to breath, to sit, to move. And the fatigue caused by the inflammation and the disease process has me wiped out.
I'm fortunate to have amazingly supportive friends. Couldn't do this without them.
So now I have to rethink a few things. Still want to do MOMAR this fall - need a fitness goal to work towards as fitness and exercise is so important when living with AS.
I'm tired. It's been a long, hard, 18 years. Hoping the Enbrel gives me some relief.
Until then...
See you on the trails,
Barb
I am so sorry to hear that things are so difficult right now... at least hopefully the new treatments will help? I really do hope you get some relief. Once I am feeling better we will have to get together for a nice sit down and tea...
ReplyDelete