Ok, so where am I this week? My memory is so hazy I really need to write everything down. I can’t even remember last week. I know there wasn’t a lot of sleep, and it was the last week of school holidays, but we didn’t do anything or go anywhere. There was a lot of couch…and I dropped my prednisone to 12.5mg three days ago.
My rheumatologist finally called back with a plan – fast taper and start over with all the diagnostics and scans when I get to 5mg.
I’m not looking forward to tapering that low. I have never gotten near that low, and I generally fall apart spectacularly below about 12mg. With Xeljanz I made it to 10mg, before going into collapse mode at 9mg.
Almost immediately that I dropped my prednisone, as in that night, my ankles and hands started swelling. And while it looks disgusting and it is painful, I’m just a little bit thrilled.
Visible swelling!!! And lots of it!
My rheumatologist had gotten to the point where she didn’t believe I have active inflammatory arthritis at all. She believed all my complaints were some undiagnosed neurological disease and/or fibromyalgia. I can understand her point of view, my scans were unimpressive, my bloodwork is excellent and I looked very healthy.
I don’t look healthy now. I look like shit! Yay!
I have gained 8kgs in the last two weeks. That isn’t even possible! It has to be a whole lot of fluid retention. My ankles are cankles and my hands are very obviously swollen. My wedding rings don’t even get close to going over my knuckle, nor do any of my other rings. I never wear them, because of minor swelling they are uncomfortable, but now the swellling is much more severe and I can’t even get them on.
If I use my hands for ten minute (weeding, doing dishes, folding washing) they swell up to the point where I can’t use them. I just have to sit there with ice packs for a minimum of 20 minutes. After trying to weed the other day, I couldn’t use my hands for three hours. Pretty boring.
I’m feeling a little more calm, but when we decided that we would follow this plan I was very anxious. I know what’s ahead, but this time my rheumy promises she will do more testing and get to the bottom of what’s going on. My immunologist is on board as well. I am seeing my GP tomorrow to renew some scripts and ask for steroid shot in my lumbar spine. I also want him to *see* the swelling, in case it magically goes away before rheumy gets to see it. I need people to see this, document it.
I also need to get bloodwork for my liver this week. I am off xeljanz, because my rheumy said she doesn’t want me on anything that will mask the effects of ‘whatever inflammatory process is going on’.
I am taking Naprosyn still, however. It helps quite a bit with pain, and is keeping me functional.
At the moment the pain isn’t much worse than usual, despite the swelling being so much worse. There really isn’t a correlation between swelling and pain for me. But it is taking about three hours for me to get mobile in the mornings. I get up at 7am, and I can think about moving around 10am. My eyes are very swollen in the mornings as well, often swollen shut and taking half an hour to get them open. I don’t know if that’s an allergic reaction, because I seem to be reacting to pretty much everything right now, or if its blepharitis. My eyes are extremely dry and I’m using the drops and the gels all day long, and still they are dry. Although I don’t have the autoantibodies for Sjogren’s, my previous rheumy diagnosed me with it. But very dry eyes can be part of RA as well. They certainly hurt!
I take my opioids at 7am. I do some stretches. I make myself walk up and down the hallway a few times to loosen up my joints. By 10am the pain is manageable and I can hit the shower.
Today I have to go and get some last minute school supplies for the Chicklet. She goes back to school tomorrow. Gamerboy went back to school today. He wasn’t happy, but calm and looking forward to seeing his friends. Getting back into a normal routine is good for us all.
I am finding I’m not able to think straight. I can’t plan. I keep forgetting what I’m doing. The brain zaps are starting. My mind is jumping around all over the place, I can’t hold a steady thought. I guess its anxiety, and it’s the fast prednisone taper. I have a million things to do and I can’t seem to just pick ONE and START. I’m going round in circles and confusing myself.
I don’t have a headache, but I have all this ‘pressure’ in my head, especially my ears. My hearing is getting worse, but the tinitis is just the usual. Yesterday when getting school supplies for my son, with all the background noise of a busy store I couldn’t hear anything at all. Admittedly, both my kids are committed mumblers no matter how often I say ‘Pardon’ and remind them that I am hearing impaired and perhaps they could try a little harder to make themselves understood! But I also had trouble at the checkout, needed to ask the girl to repeat herself a few times. It’s embarrassing because people think I’m being rude. Not loving it.
I have taken up colouring, which is mindless and relaxing. I haven’t done much, but I have to stop trying to ‘work’. I need to relax, and just let the next few weeks unfold. I have noticed though, while trying to colour between the tiny lines, that I the tremor that my second neurologist discovered has returned. Or maybe that’s just the level of anxiety I’m feeling. I can’t colour for long anyway, because my hands swell up, but I am still enjoying it in short bursts.
Today I have to chase down an NDIS approved OT to start the process of making adaptions to this house. I also have to start the process of getting my package reviewed, because they screwed it up so royally. I do have a cleaner organised, and she will be starting on Friday. At least that’s something.
My wheelchair application has disappeared into the ether, and it looks like it will need to be started from scratch. Considering my physical condition, I can’t walk more than about 20 metres before my hips start to lock up. The wheelchair I bought myself, and the power assist I bought to go with it, is great for indoors, shopping centres and the like, but isn’t powerful enough to allow me to get out of the house, on the footpath. For the four or so good hours I have, I can drive my car, but I would love to go for a walk, or even a wheel if I had a wheelchair. But I will have to wait. It has only been nine months since the application for power wheelchair was started. I think it’s never going to happen.
I am going to have to move out of this house eventually, so I’m not going to make major adaptions to this house, when it still won’t do the job. That’s just wasteful, even if it is NDIS money. Can’t stand waste. I’ll make minor changes, lever style taps, handrails in the bathroom so I can get out of the bathtub and actually use it, handrails by the stairs. I’ve already replaced all the door knobs with lever style knobs and all the kitchen cabinets with easy grip handles.
I’m going to talk to my OT about maybe taking some of the budget from home alterations and buying a powered wheelchair that will allow me to get out of the house, because I could use that more than building ramps and making major modifications to this house that still won’t make it accessible come the day that I need the wheelchair permanently.
Being trapped in this house all day every day is not good for my mental health, but I’m not sure if that will be allowed. The NDIS is such a complicated system, that even the people who are implementing it don’t understand, which is how mine got screwed up so pathetically. And why I now have that battle on my hands as well.
Anyway, that’s where I’m at. Time to hit the shower, and start making phone calls. And then I want to just relax and not answer the phone from the inevitable call from my mother. She is bleeding me dry and I just don’t have anything to give.
I need some time alone. Just the Chicklet and I is fine. We’ll have some fun in there somewhere. But I am stressed and anxious and in pain. I’m doing OK, but things are starting to fall apart mentally. I know I am highly emotional and hyper reactive. Another good reason to keep to myself. I’m having conversations that I can’t remember having, and thinking I’ve had conversations that apparently I just thought I had. I don’t’ trust my memory at all, so everything needs to be written down and logged in my phone!
I also need to track down my shoulder MRI results. I have been on the phone several times. The radiology place tells me that they have emailed and faxed the report no less than five times to my GPs surgery. I went down to my GP and they tell me they don’t have it.
I don’t know who’s lying or who’s incompetent, but I’m going to have to drive out there and get the report myself. They won’t email it directly to the patient.
I bet they have emailed it to my surgeon and not my GP. But whatever has happened, the only way I’m going to get that report is by taking the 20 minute (one way) drive out there and physically asking for it. Incredibly annoying. Parking is terrible there, and I’m trying to think if there’s anything else I need to do while I’m in that area. I just can’t think. Brain is so very addled.
But enough pfaffing! Shower. Phone calls. Track down my shoulder MRI results, and then relax and colour for an hour or two. Breathe. Remain calm. Write everything down and when in doubt, refer to the list!