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Annual appointment
It was a busy week for seeing doctors. Saturday I had an appointment to see my immunologist for a yearly check up on my autoimmune stuff. I’d had a bunch of blood tests before the appointment and had requested copies to be sent to me. This solves the problem of getting copies from the doctor when I attend. She works out of a mostly temporary office so I didn’t think she would be able to make copies. As it happens, they had moved since last year and it seems she would have easily been able to make copies. The results were mostly normal and a couple that were out of range weren’t much of an issue as they are often elevated in isolation. One odd one that wasn’t noted as abnormal this time was the albumin, which was 36, I think. The reference range said it was normal this time but the previous time showed the same level as out of range (low). As it was the same lab, I can only assume the reference range had changed a bit.
Aside from getting quite a few symptoms of Raynaud’s syndrome popping up throughout the year, not much had changed since my last visit. That is, not much could be noted until about mid-December. That’s when my usually off-and-on arthralgia in my fingers/hands/wrist decided it was going to stick around for awhile. Almost two months later and they are still often quite sore and swollen. Aside from dry eye and mouth stuff, this is the first time I’ve had to think about treating it on a regular basis. I was advised to try to stick with paracetamol (Tylenol) rather than the ibuprofen as that can be bad on the stomach. Of course it’s not ideal to take too much paracetamol either, at least from a liver point of view. Also she suggested using Voltaren cream at night since it won’t get washed off too soon and might help with the morning symptoms. I’m to have another blood test to check on rheumatoid factor. This has always been negative when checked before and I don’t expect that to change.
I also asked about some recurring bruises that have shown up on my stomach lately. They haven’t been very big but they have all appeared without any known reason. At least I like to think I would notice having some sort of small trauma to the stomach…not that I have any idea what would cause bruises so small. This has happened a few times now and they go away after a week or so. Anyway, I also get to have a coagulation panel done. I also suspect that will be normal. I don’t go back to see her for another year but she is to contact me on her next appointment day to discuss the blood test results. Nice to find a doctor who will do that rather than drag me back into for what is likely a one minute appointment to find all is normal.
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Happy 2014!
I have been missing in action for the past several weeks. I’m here but for some reason I’m at a loss of what to write quite a lot of the time.
We’re just getting through the last month of summer here and it’s been fairly mild for the last couple of weeks. Not to say we haven’t had some hot days but nothing extreme like has occurred in many of the eastern parts of the country and none of the nasty floods that have hit the north of our state. I wouldn’t mind, however, having a small share of the rain from the north. After such a wet late winter, it’s been almost completely dry here since the end of October, I think, perhaps a bit earlier.
January wasn’t a great month for us. The year started off well enough but there were a couple of things happening, family-wise, that left January a rather negative month. I can just hope the year improves from this point.
At the end of the month, our gym membership contracts will run out and we are cancelling our membership with the club. Not that we are unhappy there, but the Scientist reached his goal months ago and I have started to lose much interest in going. My aim at the beginning was to go at least twice a week and aside from a couple weeks at Christmas, I have more than stuck to that for the better part of the eighteen months. Now I am more interested in doing exercise outside the gym like just walking or dog walks, cycling, etc. We also now have a spin cycle and a treadmill in the house, so should be set for even the winter and the really hot days left in the season.
Speaking of the gym, I am still working on my weight and fitness levels. I think the fitness is still pretty good but the weight stalled for quite a while and I have had to overcome some of the psychological aspects of that before getting going again. I also had some shoulder bursitis and tendinitis issues that I couldn’t quite get sorted with physiotherapy alone and had a steroid injection just before Christmas. With further physio, some of the shoulder issues have improved enough so I just need to make sure I don’t overdo any particular type of exercise again. Anyway, after some ups and downs, I think I am back on track for the moment.
I saw my new immunologist for the second time on Saturday. She had requested I have certain blood tests done and the results were back well before the appointment. They also sent copies directly to me. Overall, the results were all fine but I can’t help but be a bit pedantic about one thing that showed up. I’ve been getting a high titer ANA back every test since the first one back in 2004. This time was no different but there was a completely different sort of pattern to the ones that have appeared before. It was a different lab so my feeling is it was misread. My doctor wasn’t bothered about, didn’t really seem to know the pattern differences either. My usual pattern is rare but associated with Sjögren’s syndrome (which I have) and also autoimmune liver disease. Because of the pattern, previous doctors were keeping watch for a couple of liver-related antigens in blood work. These never were positive in the past but one associated with autoimmune hepatitis did come back a weak positive this time, which is rather funny, I think. At the moment, it isn’t so much of an issue due to it being weak-positive but mostly due to the fact almost all my liver functions tests came back in normal range. Only my albumin was slightly low…so also isn’t an issue at this point. At the moment, I will just go back for yearly reviews as I’ve done since my symptoms haven’t been anything major as yet.
Today I went in for a whole blood donation and was asked to give plasma instead. I was a bit surprised since it’s been so long since they’ve requested whole blood. Plus I thought they really wanted it this time as I got more reminders than usual. I’ve become acquainted with some of the staff at the center since I began donating, to the point that some of the staff skip quite a few of the questions. But the last couple of times, I have gotten new people and they have gotten into detail on some questions. Strangely it came out today that nobody thought to note down the Sjögren’s syndrome on my records before. The lady that interviewed me had never even heard of it so then went on to check it was okay to donate. Which it was.
Our board games have sat rather untouched the past two months. At first, Lego Lover wasn’t interested in playing but then we missed it one weekend or another and just haven’t got back to it. Meanwhile, we’ve had a few more games arrive lately so we need to get back into it.
There are probably some other things I need to update but honestly can’t think of anything now. I just wanted to get back into it keeping track of things a bit more before more time passed.
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Allergy attack, for sure
My vertigo isn’t gone yet but it seems to have taken a step back the past day or so as my allergy attack has become more obvious. I’ve not often had the most typical of allergy symptoms and this time is no exception. Most of my symptoms run along the lines of massive itchiness, fuzzy head/dizziness/vertigo, tiredness, tingly and sometimes numb head,  lips and mouth, etc. It reached the point yesterday where it was worth risking massive dryness from Sjögren’s syndrome to take an anti-histamine. It didn’t exactly do a whole lot for my symptoms yesterday but it also didn’t cause as much dryness. Possibly it’s going to take a couple days to get much effect.  Funnily enough, I now have a more typical runny nose…I might even start sneezing next. :)
I obviously did not go to work yesterday although the Scientist had offered to drive me there and pick me up. I decided I wasn’t likely to be that productive and I think I made the right decision. I’m hoping tomorrow will bring considerable improvement and will see if I can work a few hours if that is the case. It won’t cover all my hours but would be better than none this week. We are in for more rain this week so it might just wash the nasty airborne pollen away for a while….meanwhile creating a blooming environment for even more pollen to be created in the next few weeks.
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Aches and pains post
As I posted last night, our chilly weather has returned and I’ve noticed I am now plagued with aches and pains in a way I’ve never had before. In the past I would ache at times but mostly have managed without medication. This year I have found I have needed pain medication on many more occasions than ever before. I have started using Voltaren gel on my hands pretty regularly. This morning I was woken, possibly for the first time, with pain in my hands and feet. I’m not sure if this is osteoarthritis or pain related to my autoimmune issues but whatever it is is definitely on the increase. I need to see my gp shortly so will discuss over the counter medications that will be most effective for me.
Back in February, I got a letter from the immunologist I was seeing privately to tell me that he is no longer working with private patients. I asked for a referral to a new doctor at that time but put off making further enquiries until winter as I wasn’t due for a new appointment until this month. This has backfired on me since the new doctor works privately on a few Saturdays a month and is booked out for months in advance. I did get an appointment but not until December. It will be interesting to see if there are changes in my autoimmune issues when I finally get in again. I haven’t had blood tests done in over two years so will surely need new ones, especially as I was being monitored for autoimmune liver disease due to the type of ANA I have.
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Cold
It’s late Monday night and it’s cold. That is, it’s cold by local standards. We don’t have central heat at our house so it’s generally chilly through nights during the winter and sometimes it’s chilly during the day. It was 11C in our bedroom when I finally dragged myself out of bed this morning. Our room is at the front of the house and tends to be a lot cooler than the back of the house. The living room, which is the next room, was almost two degrees warmer and the back of the house a bit more warmer still. I opened up the curtains and let the sun shine in this morning and it made me feel so much better. Nothing like solar heat to keep you going. :) Rain is expected tomorrow so there’s a good chance we’ll have a bit of reprieve from the chill although the addition of the damp might cancel out the effects of higher temperatures. That’s only if we actually get the rain, of course.
Meanwhile, my hands, and more specifically my fingers, are suffering more from the effects of cold this year. I’ve had symptoms of Raynaud’s disease (or syndrome or phenomenon ) for several years but it’s been fairly manageable or been of relatively short duration. This year, my circulation has been pretty poor in my hands and feet. Raynaud’s is characterised by up to three color changes to your fingers/toes/extremities caused by constriction of the blood vessels. In the past I’ve had two colors, white and red, but had never seen blue until quite recently. It was triggered when I took an almost icy cucumber from the refrigerator to cut up recently and I saw my fingers go a sort of purplish-blue. I couldn’t say for sure if my toes have gone blue before because I usually try to keep them well-covered at this time of year. Currently that means warm and fuzzy bed socks plus slippers. My toes are still cold despite the layers. I need to either buy or make some gloves for my hands. I crocheted some fingerless gloves a few years ago but they are a bit too big and chunky and don’t do a great job. I had another pair that was better but those seem to have gotten lost at some point. Perhaps it’s time to find a pattern and choose a nice soft yarn and make new ones.
I did manage to warm up for a little while today when I had to go into Perth to drop my camera off for a warranty repair. I had used our relatively new gps to help me find this place but got something of a run around. It initially sent tried sending me to a northern suburb even though I put Perth as the suburb. I realised it was off the track and tried to adjust the location and it wouldn’t let me choose Brisbane Street. It did relent and allow Brisbane Place so I went with it. I figured it would get me within the vicinity at the very least. This side street ended up being about three blocks from my destination. I parked on one of the back streets to get free parking and walked the three blocks and was quite warm by the time I arrived there. The walk back kept me quite comfortable so that I was close to being overheated in the relatively lightweight hoodie I was wearing. I remained for most of the rest of the afternoon. It was only when I returned home in the evening from the gym that I felt chilled again. Fortunately I know it’s not just me because the guys are all commenting on the coldness too.
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Teeth
I stopped in to the local medical center to pick up a prescription for the Scientist and decided it might be good to make a dental appointment. I think it’s probably been a year and a half since I was last there but I have simply procrastinated about it. I had a lecture about getting regular dental care when I was in the immunology clinic last month and I’ve even had some problems with a couple of teeth where food was getting stuck and causing pain. Anyway, it turned out there had been a late cancellation so I was offered an appointment within half an hour and took it.
I never used to mind getting my teeth cleaned. But the newer equipment always hurts and sometimes causes pain. I survived that ordeal and had x-rays done before the dentist came in. The good news is I had no new cavities and the calculus build-up was limited to the areas between my teeth. The bad news was that two of my fillings have decayed and will have to be replaced. This is exactly where I’ve had trouble with my teeth. Apparently it’s partially caused by my Sjögren’s syndrome because I sometimes don’t have enough saliva. Not sure exactly how that works. He has also recommended that I get amalgam fillings because they don’t decay so easily. I’m almost certain the current fillings have only been in less than five years…possibly less. I go back in two weeks to spend an hour in the chair having that fun. I must admit it will be good to be able to return to once-a-day flossing once this is done.
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Spring has sprung
I think spring has finally arrived. Usually we get quite a bit of warm weather, even in August. But this year it’s been mostly mild days and very cool/cold nights. This week seems to have heralded warmer weather. I’m sure it will be hot and dry before we know it. Actually, it’s already dry here so it just needs the warmer temperatures.
I noted the seasonal change when I went out in the night to pull something off the clothes line last week and it wasn’t even damp. We don’t have a dryer so winters can be a bit tricky when it’s cold and humid much of the time. Days aren’t so bad if the sun is out but drying clothes at nights is nearly impossible in the winter. I usually have clothes draped all over the house on the worst nights.
Another sign of the season is pollen. It’s showing up everywhere and our whole family has hayfever in one form or another. I’m not sure if it’s related to the season but my eyes have become incredibly dry. My Sjögren’s syndrome does give me a lot of dry eye problems and I use artificial tears like Refresh as needed. Usually, I can get away with one application a day and sometimes I just never get around to using them and get used to slightly dry eyes. In the past week I’ve found I absolutely have to use drops at least three times a day, especially when I wake up in the morning. I literally cannot see clearly some mornings until I’ve used them.
A rather exciting sign of spring is the re-emergence of leaves on our grape vine. We planted it last year and not much happened with it. At the end of the season, the leaves fell off and we weren’t sure if it was alive or dead. But little green leaves have come out all over the plant so we are looking forward to watching it grow this year. We will need to find some sort of support for it to grow this year. The garden arch we installed last year was very cheap and every time we had really strong winds it fell over. The passionfruit vine is still attached to what’s left of the arch and is looking quite decent but hasn’t started flowering yet. I seem to recall it flowering around this time last year so it should be too long now.
The bees are buzzing everywhere in our garden. We have a grevillea bush outside our laundry room door and every time I got out there is a loud hum from the bush which is currently in full bloom. The bottlebrush plants are all starting to bloom and will soon be heavy with flowers. It will be quite a sight to see the branches laden down with red flowers that resemble a bottlebrush.
The Scientist and I planted some native shrubs along the back wall of the house about a month ago. Previously I had planted tomatoes, lettuce, bell peppers and basil there. The only things that have ever really grown well there are the cherry tomatoes from last year (which were fruiting right through winter) and basil which grew like a weed there a few years ago. The cherry tomato plant only had a tiny bit of green left by winter’s end so I pulled it out. Our plan is to do a raised garden for the veggies this year. I’m hoping to do a no-dig garden in hopes of having more optimal soil than our usual sandy soil is for growing veggies.
I had a great disappointment a few weeks ago when I pulled out the beets we planted in May and discovered they hadn’t grown any beets. They looked perfectly fine other than the missing veggies. I put them back in the ground and will wait and see if they will grow in a few months. I planted some rainbow chard and after a slow start, that seems to have taken off a bit. I haven’t harvested yet but might give it a try some time soon. And some spinach I planted was nearly eaten by creatures during the winter but one planted remained in a rather shabby state. It has started to grow a bit more during the last couple of weeks so maybe it will be okay for a spring vegetable. I also planted out some oregano and mint in May and both are starting to take off. I hear that mint can be a bit of a weed but I think we’ll be able to make good use of it should that happen. The habanero chilli I planted last summer is looking very good right now and surely will start flowering in a few weeks. I’m feeling uncertain about some of the other chillies. The jalapeño is dead and the Thai chillies aren’t looking that well. The others seem like they might be okay in a few weeks. There is also a cherry tomato plant that has survived two winters along our back fence. The healthy part of the vine is a couple feet from where the plant is rooted. Near the roots it looks to be nearly dead.  There are Asian red mustard plants growing wild from seeds that fell from last year’s plant, more or less in our footpath. We haven’t removed them but they really aren’t in an ideal location.
I just about forgot to mention that a rather horticulturally-minded friend has given me seeds to plant a climbing plant called Kennedia nigricans, which is a native in our area. I’m really hoping a few of the seeds take off so that we can have an easy-to-grow climbing plant to cover some of the fence.
I’m looking forward to opening windows over the next few days with temperatures expected to rise several degrees. That is assuming we don’t get smoke drifting from any fires in the area. We already had a period of smokiness in the house today when I left open sliding glass doors at the back part of the house.
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Bits and pieces
As is obvious from my last post, I’ve finally made some progress on writing about our holiday. I wrote most of that a few weeks ago but it was only tonight that I finally edited it in preparation for posting. I fear I will forget much of what I wanted to write as time goes on but there is nothing to be done about it.Â
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I’ve been in a much better state of both physical and mental health over the past couple of weeks. While I don’t exactly feel energetic, I don’t feel like I need to sleep all the time. It seems the thyroxine must have been doing something after all. My tonsillitis episode did mostly resolve after about a week and a half.
This week I had my annual appointment at the immunology clinic in our local teaching hospital. Last year I had a disastrously incompetent doctor, and despite the other doctors being good to great, I was worried about a repeat. Fortunately, it was all fine, although it took longer than I expected. She was rather abrupt and gruff when we first got started but improved as we talked further. She later mentioned that she’d only been in immunology for a week so I assume she’s still settling in and that might have been the reason for the less than friendly start to our discussion. We covered my low thyroid issues caused by being off my medication and also discussed some abdominal pain episodes which had occurred while I was away and for a while after I returned. She examined my hands and found them quite cold, then asked if my feet were the same (which they were). Later she checked my blood pressure and found it was quite low (95/55) and was worried that I might be light-headed (which I wasn’t). She checked my abdomen thoroughly for anything unusual and presumably found nothing amiss. She asked about a couple of spots/rashes on my stomach but I wasn’t able to provide any useful information except that one has been there for a couple of years and the second, smaller one appeared recently. I’ve presumed they were due to some sort of skin condition but the only notable thing about them is the larger one sometimes seems to change color slightly. She had a thorough look at my mouth and throat and noted my tonsils are swollen.  After we covered pretty much everything, she went off in search of the consultant (head doctor) for the department to confer before we finished.
 The doctor was on a phone call for quite some time before she was able to reach him. Eventually he came to the consulting room and they discussed my case right there, which was kind of unusual. I’d seen this doctor at two previous appointments and he’d concluded that my autoimmune condition is Sjögren’s syndrome based on my symptoms and my ANA. I have antinuclear antibodies of at least two types. One type is called anti-coilin and seems to be fairly unusual but mostly is seen in people with primary biliary cirrhosis and Sjögren’s syndrome. The other type is common and also non-specific but also seen in Sjögren’s. This doctor had previously given me lectures on careful attention to dental care and keeping extremities warm (as I have early symptoms of Raynaud’s syndrome). He repeated the dental lecture again even though I’d confirmed I’d had it before. It may have been as much for the registrar’s benefit as mine. Discussion was had over which blood tests I needed to have done and it was decided I’d be reviewed again in a year. Appointment concluded.
In addition to the usual auto antibody tests, I also had tests specific for autoimmune liver disorders along with immunoglobins added in. I found the pathology department at the hosptital was too busy for me to wait so had them done today at a local pathology center. I think I’ve reached a record with seven tubes of blood this time. Apparently I will be contacted by the clinic if any results need any follow up.
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The semester started last week at my university so I’ve started my last class for my degree. It’s an external unit and it seems to be a small class as there has been almost no discussion online so far. Also, the unit outline hasn’t been updated for this semester. I pointed this out to the teacher but have had no response after several days. It would be good to have some interaction with others in this class. It’s already isolating to study by distance education but it’s worse when you feel like you’re the only one out there.
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My favorite band, Crowded House, are coming to Perth in Novemeber and I have purchased tickets for the event. We are fortunate to have them playing at a nearby winery so it will just be a fifteen minute drive instead of 30-60 minutes to reach Perth or Fremantle. The Scientist and I will, however, be trekking down to Freo for a concert with Megan Washington and support act Dan Kelly at the end of the month. Tickets were quite inexpensive as these are up and coming artists…so it should be good value for money. We’ve seen both as support acts for other performers and both were excellent.
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What a doctor shouldn't do during an appointment
Last week I attended the immunology clinic at a teaching hospital in Perth. I’ve had mixed experiences there but was fortunate enough to see the consultant the last two times and was quite pleased. This time I had a registrar (student doctor) and things were quite different. Below is a list of things a doctor shouldn’t do during my specialist appointment.
- Don’t ask the patient why you’ve been coming to the clinic for the last two years when you start the appointment. It’s always useful to read the notes and find out at least a little of the patient’s history before starting any line of enquiry. This should be obvious for appointments marked as follow ups.
- Don’t ask the patient questions that have no relevance to the clinic. This includes questions about menstrual periods and the reasons why the patient takes thyroxine. Also, it should be quite obvious to even the most basic doctor why a patient is taking thyroxine.
- When the doctor finally gets around to a line of questioning more appropriate in the clinic, don’t just sit there without taking notes of what is being said. This could account for why certain details might have been missed.
- When issues are raised about cold hands and feet, swelling and discoloration, don’t neglect to do a decent examination of the hands and feet.
- If a registrar is waiting to discuss the case with the consultant doctor, please don’t sit in front of the patient and read case notes for other patients, especially for an extended period of time. This is especially true if the doctor has failed to take any notes of what is being said because it would be an ideal time to continue the conversation begun earlier and possibly to get around to taking notes.
- After conferring with consultant doctor, don’t neglect to respond to the issues raised by the patient in some way.
I realise the student doctors are learning but most of this was pretty basic and I honestly don’t think this doctor was ready to be handling appointments on his own. I get one appointment yearly and it was extremely unproductive. I don’t really think there would have been much difference in the outcome but at least it would have been good if I felt like the information I provided was actually recorded for future use. I didn’t bother mentioning some other issues related to the hands and feet because I lost any confidence that any appropriate response or notes would be made. The doctor did order some blood tests, which I had done in the pathology department before leaving. There’s a bit more on the blood tests later.
Today I went to see my gp to discuss a variety of issues. We ended up having a pretty decent discussion where the situation with the boys was covered and a referral to the psychologist I see for the boys was extended. Then we discussed my recent appointment. Some of my blood tests had come back and a few hadn’t. There weren’t too many surprises there. Almost all were normal aside from my always high ANA. I spent a long time recounting my experience and explaining about the issues that I had wanted to discuss with the specialist doctor. We also discussed the pelvic pain I have been getting around the time of ovulation before renewing prescriptions for thyroxine and the Nexium. It was a good appointment.
My gp almost always prints out my test results so I can keep a copy for my records. The printouts include reasonably detailed information. My gp was curious as to whether the doctor had ordered an ENA test, which is an extension of the ANA. I didn’t recall it being listed on my form. Considering I have some sort of autoimmune thing going on, this should be automatic as it will be more likely to reveal something new than just the ANA. I noticed the gp spent a bit of time reading the notes listed for the ANA. I assumed they were the same as the past two tests at the time. But tonight I read it more carefully and it noted there was reason to order further tests. Considering the level of competence I had with this registrar, I feel it’s extremely unlikely he will order the additional tests. The antibodies suggested almost all are indicators of potentially significant disorders. Two of these are autoimmune liver disorders and my very uncommon ANA pattern is often seen in one of them. I’m going to have a pelvic ultrasound shortly so I’ll discuss this with my gp further when I see her again.