With any chronic disease I think it is very easy to get sucked into the swamp. That all-consuming place where things aren’t going right, when we’re sore and tired and getting up each more seems like a chore. We’ve all been there. That little known place where we are not sure if things will ever be right or ‘normal’ again. Today though I want to talk about some of the good things that have been happening, the positive changes, that at one point seemed more like a faint possibility, something I would have loved to have, but wasn’t counting on.
Over the past week I saw a cardiologist, because my heart is weird. Like the rest of me, it wants so badly to be out of the box. I have had pretty much persistent tachycardia, since diagnosis of Enthesitis related arthritis (part of the ankylosing spondylitis family). My heart has felt off, beat so hard I think that it might be a hammer, more than a heart. It has been painful, but mainly it’s been fast. This cardiologist was lovely, and unlike most people who thought I should just deal with it, he realised that if it was interrupting my daily life, we should do something about it. So after a normal echo, we decided that a 48 hour holter, should be repeated (I had one about a year ago). A holter is like and ECG (a heart monitor) that you keep on, in my case for 48hours. Here comes the good part. My holter does show that my heart beats fast, it was better than the last one I had. So the cardiologist thinks this shows a downward trend, it’s going back to normal. Yippeee… I think this is due to the Remicade, which seems to be making headway against this disease. Double yippee…
We did however decide to still trial me on heart meds, to see if this makes a significant difference, else we will leave it for now.
This week I also had cortisone injections into my jaw, my first ever joint injections. It was sore, although netter than I thought it would be .It was nerve-racking. It felt odd, especially the left side, which felt like a big cylinder was being knocked through layers and finally pierced into the joint. Most likely because this is the worse of the two, and most likely has some synovial thickening and a smaller joint space. The right side though just seemed to glide in, and although still sore, wasn’t as bad. All of this was done without any anaesthetic, as Dr. P says that there is a nerve that is close to the jaw, which can make your face droopy, and he wants to know whether it has happened due to the injection or the anaesthetic. Makes sense, and I was actually happy that this meant less needles poking me, and local anaesthetic has never really worked for me anyway.
How is this good, you might ask? Well, since the injections my jaw has been so much better. I opens better, it clicks and grinds less, it’s not sore all the time. I don’t have a constant headache anymore, and when I have one it’s less intensive. also my neck seems to feel a bit better too. Which makes me really glad that I made the decision to have the joints injected.
Last, but certainly not least, I have managed to wean off of my opiod patches (durogesic patches, similar to morphine), and now am only taking Tramadol as needed. This is so great. After almost a year of having pain that was needed to be controlled by such strong pain meds, I am free of them for now. It is such a blessing to be more in control of my pain, and on top of this disease. It’s still hard, but a slight weight has been lifted from my shoulders, and I am going to enjoy every minute of it.