NOT in my plan!

#arthritis #steriods #chronicdisease #chronicpain #AnkylosingSpondylitis

Immune system is down… YAY!

😷🤒😞

Liquid quality of life!

Goodbye my friend…

Starting rehab…

I swam today. It has been so long since I’ve been in the water so it was really hard work, but I did it. This, I hope, is the start of some serious rehab. Since starting Humira exactly a year ago I have felt ready to do something more than just pilates, it is the best biologic I’ve been on so far. Swimming has always been my thing. I swam for a club from the age of 7, & both my boys have just joined a swim club. That’s why I got in the water while they were training instead of sitting on the side for 3 hours. Apart from feeling like I was 94 not 44, I did a whopping 22 lengths. All was well until I got out…

My pool shoes have stretched & have been sitting in my bag for years. After showering I was drying off & chatting to a lady who was about to go into the pool. As I lifted my left leg up to dry my feet (because I can do that now all by myself!), I forgot how tired my right leg would be. It didn’t like having all my weight through it so I lost my balance a little & the pool shoes slid without taking my lower leg with them. I felt something sort of ‘snap’ in the area where my tendon had to be stripped & then repaired. I can’t begin to describe the intensity of the pain for that few seconds; it brought tears to my eyes.

A short while later, back on the side of the pool I could feel it stiffening already. I texted hubby because I knew he would want to know how my first session had gone. As he rightly pointed out I should be proud of myself for getting back in the water after such a short recovery time. I am obviously still healing & have scar tissue – which is what he thinks might a stretched not the tendon itself. When he looked at later at home there was some bruising, so I must have torn something. Bloody typical, it wasn’t even while I was swimming. Needless to say the pool shoes went straight in the trash.

Fingers crossed it will be a short lived set back that will require a little bit of rest, a lot of icing & tons of red wine to help it get better!

9 days on…

I saw my surgeon & she is happy with the wound & my progress. She explained in more detail, & even drew a very bad picture of what she found. Essentially the extra bone growth was not seen on the CT scan she had on the screen while she operated. She kept poking around waiting for something to pop thinking there must be a cyst, but it was all solid. Then she stripped down the tendon & behind was chunk of bone sticking out of the fibula head – so she hacked it off! Obviously it was more precise & skilled than that, & she had to be careful how far down she took it because it was close to where tendons & ligaments insert, & she already had to repair the one that was blocking her view.

At the end of the day it just goes to show you that no matter how fancy the technology is you can’t always trust what you see on the screen, sometimes you have to treat the clinical symptoms & trust your instinct. It has always been a solid lump, & a simple ultrasound scan suggested it was bone growth sometime ago. The question now is; was it an injury that healed badly? Or; Is it disease related? The surgeon is inclined to think that it is the latter & not the former because this is something my disease does, however, it’s supposed to happen in my spine not in my knee.

The main thing is that hopefully now it’s sorted & if anything like this happens again she will have a lower threshold for intervening. Now that everything is looking good I contacted my rheumatologist to ask if I can start my injections again. It will be another 2 weeks before I see him so he agreed that I could, especially as I’m already stiffening up & the drug will take sometime to build up again – sadly not in time for our camping trip this weekend.

We are all packed up, just need to throw the fresh food in the cooler in the morning & we’ll be off into the wilderness to share some funs times with a group of friends… bring on the marshmallows!

Stubborn or stupid?

I have just had my first painkillers of the day at 8.20pm. I am very uncomfortable. I have rested up a bit this morning & played my guitar, but then I sorted out the camping equipment for the weekend (yes I am going so don’t try & stop me, I found an axe in one of those boxes so be warned). Made lists – of course – then insisted on going with hubby to the store to replace a stove & gas cylinders. After that we went straight to pick up the boys from bike camp. Then I cooked dinner, sorted the boys out for camp tomorrow, which included doing some laundry, & then I collapsed in a bath. Now I hurt – quite a lot actually. Isn’t it good to get back to normal?

I also stripped down my wound dressing last night to expose it to some good old-fashioned air. I can see now that it is about 2½ – 3inches long but looks pretty good, & hopefully it will fade to just a line (wishful thinking I know). It wasn’t quite healed in a couple of places so I dug out some steri-strips (paper stitches) to cover those edges up for another day or two. I’m still not getting it wet, which is awkward, but I’ll do whatever it takes to avoid any risk of infection. My surgeon has also left the two ends of the continuous dissolvable stitch quite long so they are catching on clothing. I did chop one off because it was driving me mad, & hubby said that was ok to do so, & he should kind of know. Hopefully the rain & cooler weather will stay away now until it is properly healed so I can wear shorts/skirts.

Mornings are getting a little challenging now, it’s 5 weeks since my last injection & my body is starting to stiffen up. If the surgeon is happy with my wound & progress on Thursday I think I’ll get in touch with my rheumatologist & beg him to let me start taking them again, otherwise it’s another 2 weeks before I see him again.

Off to see my physio tomorrow, it will be interesting to see what he makes of the knee findings…

The decision…

It wasn’t easy but it’s the only thing left. Last week after a discussion with my rheumatologist, my surgeon agreed to open up my knee. I was desperately hoping that it would happen sooner rather than later, but sadly not. I shouldn’t complain really, being married to a physician has its perks, well a perk actually, they all know someone who can help & we usually don’t have to wait as long as everyone else to be seen.

I was quite overwhelmed by the conversations we had had last week that I forgot to ask questions I would normally think of spontaneously. It wasn’t until I saw my rheumatologist the following day that it became apparent I wasn’t the kind of patient that can drop everything & have surgery. Yes, organizing the family is one thing, but my medication suppresses my immune system, therefore putting me at risk of infection, a surgical procedure means I must stop my injections before surgery. Then, once I am definitely on the mend I can start them again. As you can imagine the thought of stopping the one thing that keeps me physically active scares me, especially when it’s for a situation in which I will be temporarily less active than normal.

Today it was confirmed that hoping a cancellation would get me in sooner was not going to work really. I know a scheduled date gives me/us time to plan, but I really didn’t expect it to be August. It’s just typical that they can’t fit me in for the week my husband is on vacation. And of course it’s the same week we are supposed to be going on a big group camping trip for a friends significant birthday celebration. And the same week I am expected to do jury service, which I really wanted to do.

I know it’s great that something is finally being done, but it has screwed my life up enough, why does it have to continue to spoil my summer too?

It’s finally come to this…

I’m going to have surgery in a last attempt to fix my poor knee.

When? I’m not sure, hopefully a cancellation will make it sooner rather then later, but the problem is I have to stop my biologic injections in preparation for surgery & I hate being without them for too long.

Why? Well they suppress my immune system, & surgery puts me at high risk of infection & not healing well. It will take a month or so for the drug to stop doing it’s job, then I’ll get stiff & sore.

What is she going to do to my knee? Good question, I’m not sure she knows until she gets in there – ‘give it a bit of a tidy up’ was mentioned, whatever that involves. I guess I have to be prepared to agree to whatever she thinks is necessary & trust her judgment.

Will it fix it? That is the six million dollar question. Keep your fingers crossed for me & hope that it does!