Things are changing

I’ve never been nervous or scared about putting something in my body. From eating Huhu grubs to getting my belly button pierced at 14 with my mum standing by my side, I’ve always been confident with my decisions. The way I see it, my body is the only thing that I’m stuck with forever, so I better make sure that what I’m doing with it is something that I can live with.

So here we are, just over a week after my latest immunologist appointment and about to take medications that could have some pretty serious side effects. The last medication that I was on, plaquenil, wasn’t working. I still couldn’t manage to go up more than one and a half flights of stairs without my knees feeling like they were being torn from the joints. By the end of the day my hips, knees and back felt like I had been training off 10 meter for a double session. I would wake up with my thighs feeling like I had done a million squats during the night, and let me tell you, I did not have the figure for that! That left us with the question: what next?

Blood work was reviewed, lung function tests were checked again, and options were discussed. We finally came to the conclusion that a corticosteroid and a medication that interferes with the growth of cells would be the best option. It sounds drastic, but what I constantly have to keep in mind is that my body is producing these anti-ku antibodies that are attacking my muscles and joints and that could eventually start effecting my lungs more severely before it goes to work on some of my other organs. I know I’ve always been a bit unique and this just proves my case. What’s even scarier is the knowledge that over a 10 year hospital study of all admissions and blood work only 34 patients were detected with this wonderful antibody. Because of its rarity there is no known treatment!

So it’s a case of trial and error… we tried the first step of a relatively safe medication and that didn’t work so now we’re onto the next option.

A little about the two medications that I’m starting. Prednisone is a corticosteroid that can suppress the immune system and this is good for me because my immune system is the thing that produces the antibody attacking my joints. Now for the bad side.

Sit down and take a break, it’ll probably take a while to get through this.

Here are the side effects, that I need to contact my doctor immediately if they occur: aggression, agitation, anxiety, blurred vision, dizziness, fast, slow, pounding, or irregular heartbeat or pulse, headache (go figure), irritability, mental depression, mood changes, nervousness, noisy, rattling breathing, numbness or tingling in the arms or legs, pounding in the ears, shortness of breath, swelling of the fingers, hands, feet, or lower legs, trouble thinking, speaking, or walking, and troubled breathing at rest…

You still with me?

Now for the general side effects: increased appetite, fluid retention, weight gain, increased blood sugar (which can lead to diabetes), change in body shape (increase in fatty tissue on the trunk and face while the arms and legs get thinner), increased susceptibility to infections, acne, thinning of the skin, easy bruising, irritation of lining of stomach and small intestine, ulcers, early cataracts and glaucoma. Now I need to remind you, I will most likely not get all of these, maybe one or two, but the thing is these are all possibilities that could happen from taking this medication.

Onto the next one: Methotrexate. This is the one that interferes with cell growth within the body. My dosage for this is only 10mg once a week, that’s because it’s also a drug that when used in a higher dose, helps fight cancer. Let that process for a while. I know I can’t compare what I’m going through with the likes of cancer, they’re completely different conditions, but it’s a bit of a shock to the system when you come to terms that you’re taking a medication that is used for the control of cancer cells. And it’s not without risk! While the side effects aren’t as long, there are still many: bloody vomit, joint pain (ironic?), reddening of the skin, sores in the mouth or lips, stomach pain, swelling of the feet or lower legs, temporary hair loss, loss of appetite, and nausea or vomiting. I’ll repeat this again, I will most likely only get one or two of these side effects, but I’m just putting the facts out there. That’s the reason I started this blog, to be more open about my experiences though all this, so I’m going to be giving you the cold hard truth.

Taking this all in took a couple days. The first time I looked up the medications I couldn’t even make it past the first page before I started contemplating if it‘s all worth it. I had to ask my self how much I was willing to go through to get some remnants of my old self, what lengths would I take to get to the me that could go for a run without having to worry about my legs making it past the driveway, and finally the big question, could I do this?

Could I handle all these side effects and take more medications and pills just to counteract the harsh reactions of the drugs going through my body? If this is what it takes, then I’m going to try. At least if I start gaining weight by the kilograms I’ll be able to run it off, and I’ve got thick enough hair for it to thin out a little. If you don’t laugh, you’ll cry, and those that know me know how sarcastic I can be, so I’ll use that to my advantage and make myself laugh.

But back to the serious stuff for a moment. The first night I had to take the methotrexate I stood there and had to physic myself up for it. I couldn’t believe that it had come to this, the point where twice a day my alarm goes off to remind me to take my meds. To the point where I was swallowing pills to try and fix a mistake that my body shouldn’t have made in the first place. I don’t know if I’ll regret going down this road of medications, I might get to the moment where I don’t recognise myself in the mirror and hate what I’ve done, but all that I can hope for, all that I want to happen, is for my body to one day function with zero medications.