I don't know if there is anyone following this other than my best friends, but if anyone else stumbles across these posts please know that you are welcome - and I hope you don't end up with the amount of trouble I'm experiencing.
I've been using crutches since early August, because the pain in my feet by the end of the day had reached severe migraine levels. It had reached the point that I couldn't really walk without aid anymore. I got a snazzy set of "SmartCrutch" crutches, which were adjustable in the angle of the arm section, so I could rotate them up to horizontal and put my weight through my forearm/elbow instead of through my hand. I also added a loop to both crutches so that I could lift the crutch with my arm instead of having to do it with my hands. The crutches have helped significantly - but they are a total nuisance when it comes to anything like shopping, carrying a drink, etc. In order to get my morning chai, I've had to get up a lot earlier for work in the morning, so that I could sit at the chai place to drink it...no more drinking it while walking to work. It's often a little too hot to drink right away, so I had to factor that time in too. But it was working ok for me.
It's also been useful on public transport. People can see that I need a seat, and have been very kind about helping me with things like lifts, doors, etc. Heavy doors that you need to open towards yourself are bloody difficult. The door at work is one of those...opening it to get out is no problem because I just have to lean against it. Opening it to enter is harder - it's almost knocked me off my feet a few times. I've learned to use the foot of my crutches to jam it in place so I can get in.
My Rheumatologist has referred me to another Rheumatologist at one of the major teaching hospitals here. His hope is that I can get access to the biological medication "Rituximab". It isn't approved for use with Sjogren's here, so he couldn't give it to me himself (too expensive without approval). The first appointment with the new Rheumatologist is on the 12th Sept. It will have been less than two months between when I saw my current Rheumy and when I finally get to see the new one - which is a remarkably short time. I was still walking without the crutches when I saw my current Rheumy...and I'm scared that by the time any immune-suppressant treatment is started it will be too little, too late.
I've been worrying that I'll be in a wheelchair by Christmas if nothing is done to stop it before then. My pain specialist has added an oral form of lidocaine ("Mexilitin") to everything else I've been using to try to get the foot pain under control. I'm still on a very low dose of that (titrating it up slowly), and have noticed no benefit or side effects from it at all yet. I'm finding it hard to wait for that September appointment.
Yesterday, I really needed a wheelchair.
I didn't have one, of course. But even with the crutches, getting up to go to the toilet was triggering migraine-level (7-8/10) pain in my feet. I caught a taxi to the station in the morning, because pain was already increasing significantly. When I got to the city, the two major blocks walk seemed endless - particularly the uphill part at the end. I couldn't detour to get chai - if I did, I would have been stuck there unable to walk any further. All day, people at work kindly made me cups of tea, refilled my water-bottle when it got empty, got me lunch from the local SpudBar, and did pretty much anything they could to help. I was ok when sitting quietly for a while, with my feet hooked back under the seat so that the lip of my sheepskin boots was caught on the ground and the weight of my feet/legs was hanging on the front of my feet instead of my soles/heels. Mind you, "ok" was still a 4/10 pain level. At the end of the day, I was leaving at the same time as someone else from work, and they hailed a taxi for me from the taxi rank around the corner from work so I could catch a taxi for those 2 blocks back to the station. Walking them was simply unthinkable.
It's all so variable. The day before, I almost didn't need the crutches at all. The day before that, pain was bad but not at migraine levels. I can only hope that yesterday was a flare that will settle back in a few days...but past history shows that this is a slim hope.
It leaves me wondering whether those few months I thought I had before needing a wheelchair will turn out to be only a few days? Will I have deteriorated far enough that I'll be in a wheelchair before I get to see the new Rheumatologist in September?