Ablation Update

Alright - it has now been over a month since I had the nerves in my SI joints ablated to help with some of the pain caused by Ankylosing Spondylitis. 

Here is the short version: the ablation has been worth it for me. I have experienced some reduction in pain and some changes to my pain - enough that makes the procedure worth it. 

Here is the long version: the ablation reminds me of certain medications - what it is doing is masking the pain or, more specifically, preventing the feeling of the pain from reaching my brain. This means that my body is still responding to pain that I feel in a different way. Instead of feeling like a knife or frozen skewer running through my SI joints, it is more like an ache, and my body remains stiff, but the pain is dulled. It's an odd sensation. It has been helping me move better around the house, and walking or climbing stairs isn't so excruciating. With that said, I will notice my body having difficulty with stairs at times, from pain that is higher than it feels.... I'm not sure if this is making sense, but it is the only way I have been able to describe it all. 

The pain still exists, and my joints are still deteriorating, but I feel less of it because my nerves cannot send those pain signals to my brain. 

Of course, one of my initial reservations of this procedure is the entire idea of killing nerves. If there is an injury or pain unrelated to my illness, will I feel it? 

I have been assured that these nerves do grow back, which is why I was willing to give this treatment a try. Also, this procedure is allowing me to move my joints more (which is good for AS). I can slowly increase my activity levels without feeling as severe of pain and without causing any more damage - unless I were to repeatedly subject my lower back to physical trauma (in athletics like snowboarding, for instance). 

The injection sites also remain numb - which is super weird - but not truly bothersome. I am unsure of how long that is expected to last, but I'll find out in the coming weeks. 

Fingers crossed that the effects of this procedure are able to last 6 months to a year. 

The Lighter Side of: Using a Cane

Having difficulty with mobility is not exactly a positive thing. With deteriorating back and hips, mobility can take a big hit.
I first began using a cane when I was 26 years old. I often have a limp due to pain and muscle spasms in my back and hips, and my energy levels have dropped tremendously from my body constantly battling itself.
Using a cane was a hit to my pride, but it also opened up more opportunities. The same thing occurred when I began to need a wheelchair for certain outings.

The Lighter Side of using a cane is that you can find very pretty, sparkly, or interesting canes for all occasions and all sorts of extra little parts. You can find handcrafted wooden canes, canes specifically for ice and snow, collapsible canes that can fit in a purse, or even canes with a secret compartment for pills or other small items.
Plus, if you cannot walk very far without an aid, a cane can give you the opportunity to get out more! It is even better if you are deteriorating slowly enough that you can use a cane when you need it, but can forego the cane if you are having a better day.
In addition to all of that, when you are someone who requires a cane (especially if you are a young person), people are often a little more kind. They may ask if you need help, hold doors open for you, you might get some special treatment or some nice parking spots, and it can even spark conversation. It is not all bad to be losing mobility. That doesn't mean I'm happy about it, but there are some silver linings.

8/10 Pain from a Paint Day

Yesterday I had one of my favourite days. A friend had me over and we had a total painting day.
I have never really painted before other than a few small watercolor projects, but I had around 20 different projects I wanted to do, including two large ones.
So I went in, picked out THE largest canvas and just started painting - thinking a large canvas would maybe take an hour or two at most.
Bahaha.
Four hours later, even though I was sitting on a super comfy couch and just sitting while painting, taking several breaks, I was about 10% finished and my pain had reached 6.5/10 already. I put that one aside, we took a food break, and I had to lie down on the couch for a while before I started anything else.
Then I worked on really small projects.

I did become quite frustrated a few times - not with the painting itself per se but rather my body's very severe reaction to a very low-key day. On the drive there, because I was so excited, my throat became swollen. I could not take my muscle-relaxant until I reached my destination, so I felt the swell become a little bit worse over the course of the drive. I even brought my saving medication in case I had to be taken to the hospital.
Luckily that did not happen.
Though because I spent so much time on a couch and not in bed, my Ankylosing Spondylitis was definitely screaming at me. I had to take a lot of extra medication and I felt as though I had Blades for Bones.
Seriously.
So 8.5/10 pain from AS feels like my bones are made of blades.
That's my new description.
Not just the joints anymore either. The joints were obviously inflamed, but because of that, my muscles were contracting, my back was entirely hunched over, I was vomiting from pain, and my entire spine, neck, and hips were excruciating.
PLUS - I had thought that since I would be half-lying down most of the time that I would be fine to drive myself. By the time we were nearing the end, I burst out crying. I had already been vomiting from the pain and could barely think let alone drive. I had to ask my hubby to take a cab to our friend's place to drive me home. I was in no condition. I looked like the Tin Man walking and I even passed out in the vehicle.

So next time - ONLY smaller projects, and maybe just one tiny part of a big piece, and I will have hubby drop me off and pick me up.
Definitely a naïve painting novice over here.

A Second Dose of Cimzia

Rheumatologist appointment today.

It wasn't an amazing appointment, but not exactly bad either.

I explained that my first dose of Cimzia wasn't great. There was some instant throat tightening, and although it did not progress to a full blown attack affecting my breathing, it also did not fully resolve for two weeks.
So I could maybe look at doing the smallest dose possible once a month instead of twice a month. And even then, it's pretty frightening.
But, I don't have any other options at the moment.
So we are going to try again, with an added regimen like the one I had when taking Remicade.
For this next Cimzia injection (which I may wait until January to do just in case it might screw up the holidays) I will be taking a 50mg dose of Prednisone, a 50mg dose of Benadryl, and a 2-5mg dose of Diazepam directly before injecting the Cimzia. This is intended to reduce the allergic reaction. Oh and I am also supposed to do this on the best day in regards to my Hereditary Angioedema, because Biologics are now known for triggering C1 Esterase Inhibitor Deficiency attacks.

On one hand, I'm sure others are even wondering, is this even worth it? All of the extra medication and the allergic reactions and the potential for throat swelling and even obstruction being so high? Really? This is big and scary and can even be traumatizing (more to the person who is with me because that Prednisone dose makes me go full-out roid-rage every single time).

But here's the thing:

This disease is bigger and scarier.

Just seeing and speaking with others suffering from this disease, I have seen the scars from hip replacement surgeries while they were in their 20s. I have seen the deformities and the spinal curvature and I have seen people trying to move and walk. I have seen my likely future and it looks damn scary and damn painful.

Plus, when I think back to when I had this regimen to be on Remicade, the Remicade helped for 3 years before my body finally said 'enough'. When I was on Remicade for 3 years, I was well enough to go traveling all around Europe for a few weeks at a time. I finished University, I released a cd, I wrote a thesis, I traveled, I was able to move out on my own, I was even more active and able to go backpacking by myself.

So if a big dose of Prednisone and a big dose of Benadryl is going to allow me to try another Biologic a few more times, to maybe help slow down this disease, I guess I am just going to have to try it.

Jussssst word to the wise, on injection day and a few days afterwards, it might be a good idea to avoid too much contact with me. I am usually very aware of my steroid mood swings, but they are not always totally controllable. Playing Boggle with me during this time might be a good idea. It always makes me feel better.

So here we go. (Well... in January). Another couple doses of Cimzia coming up.