Another reason I like using this blog as a kind of journal space is that I know some friends follow it, and seeing as I’m not very much into social networks again at the moment, at least this way they can see what mundane things I’m getting up to. 🙂 But I don’t want to lose sight of the fact that it is supposed to be a health blog! Maybe I should have put on my goals list to do some of those symptoms post!
I see my rheumatologist this month, so I better start thinking what points I want to bring up with her. (Without fail, every time, I either forget to write a list or remember to write one and forget to take it!) With lupus, there’s so much going on, and also so many relatively minor things that often things don’t stick out, and I leave the appointment before something comes to me that I forgot to bring up!
Using the walking sticks so often has made my shoulders a lot worse, particularly the clavicular joints (those at the sternum and those at the shoulder). My previous rheumatologist was considering giving one of them a steroid injection but as they tend to be limited in the number they give, I wanted to wait until I was desperate. I’m not at the desperate stage yet but I want to see what this rheumy thinks. Every morning I wake up with very painful shoulders–I don’t know what I’m doing to them in my sleep! The sticks are also affecting my wrists and elbows, but not quite so bad; it’s a catch-22, as all these joints were bad anyway, but using sticks to give my hips a break is making them worse.
My sinuses have been driving me crazy. I often get a lot of pain in them, and to even touch my cheeks is so tender. I can’t remember if I mentioned this to the rheumy already, but I think I will this time anyway. I can deal with many pains, but it’s hard to be productive in any fashion while feeling that your face is about to explode! The other day the pain was so bad that my sister thought I was having a migraine. I also don’t know if the mastoid pain is related. Also, I’ve been getting horrible spasms in the muscles in the back of my head–I know I had this when my lupus first started because I remember getting medication for it, but I can’t remember if it felt like this, or as bad as this. Sometimes it’s random, but I notice it intensifies when I’m playing with or talking to my one-year-old-nephew, so I’m working if it’s to do with how I’m holding my head talking to him, but I don’t necessarily notice if it’s only while looking down.
My heart symptoms have been quite bad recently, too. It’s a very horrible “grey” feeling you get when it’s particularly playing up. I’m so thankful that my cardiac issues are more a build up of small issues rather than anything big, but I do have to bear in mind things can develop or worsen, so if I feel things are worse with it in general, it can’t hurt to mention it.
Although the colonoscopy came back fairly clear a while back, I’m still having strange issues in that department! I think I just have to chalk much of it up to the IBS, but because of a lot of the pale colors in the stools, I will have the rheumy check the liver function just to make sure it’s not a biliary issue. Hopefully again it’s just one of those oddities–combined with IBS and lupus in general, just about anything can happen with poop, I guess!
I’ve been strangely neglectful at taking my pills regularly (and I wonder why I flare!). It’s not unintentional; it just slips my mind very easily because my regular pills don’t do anything short-term, so it’s easy to forget if I took them today or not. The doctor is probably wondering why I haven’t re-ordered some scripts for a while! (Which reminds me, I do have one waiting; it’ll probably be outdated by now… I am going to sign up with the pharmacy so they pick up the scripts for me, as it’s beside the charity shop, so I’m at the pharmacy more often than the doctor anyway.) I keep trying to think of a way that I will remember to take them more, such as keeping them downstairs, but then sometimes I don’t go down for hours after I get up–saying that, I’ve got to go down at some point, so at least I’d take them, even if not quite at the same time everyday. My biggest problem is with the night meds, because I have the amitryptiline in there; if I get up late, which is usual, I don’t want to take the amitryptiline too early otherwise I’ll not have much of a day; but if I take them too late, then I’ll sleep in far too late the next day! My GP never did get back to me about the sleep clinic, but I will ask again because I am sure I can’t work on a 24-hour routine, which makes settling into a routine harder, with and without the pills, so I’m up half the night, sleeping half the day, and still awake for a time when I go to bed. I need to try in earnest to ignore the clock and have a trial period where I just go to bed and get up when I feel like it. But often I’m too tired to stay up and do anything, but still can’t switch off. So I think I will ask about the sleep study again, and in the meantime try setting an early evening alarm and taking the pills–they often don’t do much anyway, so I’m still awake half the night, but then I find I’m even more sluggish in the morning.
I need to remember too to ask the rheumy about getting a regular script for opiates. I’ve been staying away from them as much as I can, because I’ve seen family members go through awful withdrawal with them and because I want to keep something for when things get worse! So I was only taking them sparingly, but this year in particular, I’m relying on stronger painkillers. Otherwise I’m pretty much stuck with paracetamol, which I take as a matter of course and which don’t do anything noticeable! My rheumy took me off the NSAID I was on too as she thought it might be causing some of my stomach issues, but I’ve not noticed a difference, so I might go back on them although they too were not doing much tangible for my pain. I at least need to ask her about my options, as nothing lighter is really cutting it, unfortunately. I’m still not sure about going on opiates regularly and long-term, but I’m much more comfortable on them, as you might imagine!
It’s 3:25am, and I probably should go to bed now–it’s hard to ignore the clock and not get guilty. If it’s hitting 4.30/5am, I think, “Oh, I really must go to bed,” or if it’s hitting that time when I’m meant to be getting up, I feel pretty disappointed with myself! Then the guilt over the clock often means my days are cut short, and time I could have spent being up and productive is spent lying in bed awake! If only I lived alone, eh? 🙂 At least it gives me time to think, work out some questions over my novel projects!