It should never have been your puzzle in the first place. Hurray for competent physicians!
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Thanks Dilorenzo, Golfnut and janeatiu. I canāt believe how quickly all this has happened! I was a little apprehensive about swapping so swiftly. Half-expected some major obstacle to arise but itās all gone very smoothly. Iāll be entered into the new doctorās research programme, as are all her patients, and thatās something Iāll be glad to do, it makes a lot of sense.
I had an excellent rheumy team before moving house last year but itās great to see a doctor who specialises in PsA. She was the first doctor Iāve seen who asked me what itās like walking on these feet of mine first thing in the morning, thatās a detail that has not seen the light of day before. I donāt think itās going to be such a struggle to articulate how the disease affects me because she really knows it inside out.
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You binned him! Yippeee, happy dance.
Thereās a new PsA clinic in T-town, you know, at Womenās College. Itās run by Dr. Lihi Eder, formerly of the PsA clinic at Toronto Western.
I suppose I should post that in doctor recommendations for our Toronto members.
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Sybil ā¦ you got in THAT fast to the wonderful Dr. K? Oh my ā¦ and wonderful that you are part of the research cohort. I love the feeling that my disease, in a small way, helps others with it, or who will have it.
I know exactly the weight that is off your shoulders: itās the feeling that one of the best in the business has your back. You do your best to manage, and they will provide the best expertise possible to allow you to do that.
I am so very happy for you. What a great day it must have been for you and your husband.
Hey! I gather from Seenieās response that this is new news, didnāt realise at first ā¦ I guess itās about having the confidence to know when somethingās just not right and may in fact be very, very wrong. And yes, a doctor who sees PsA meds as poison while happily doling out steroids has got a rather strange angle on things! Itās tough for us patients to work out whatās okay and what isnāt though. Congratulations Golfnut!
Thanks Seenie! Less than a week between the two somewhat contrasting appointments! My other half deserves a PsA Hero medal for kicking my butt, Iād have taken things a little slower. But then heād have had to live with 24/7 outrage so I suppose itās a team effort. This site has influenced him a lot, he doesnāt look at it often but he remembers every key experience and bit of info. Iāve relayed from here so Iāve got no hiding place!
PsA medal to you Sybil and other half! Glad it went well. Do you think Australians can get into the Bath clinic?
Oh my, I wish they could! But Iām convinced there are top notch specialists everywhere, itās a matter of finding them ā¦ and travelling if necessary which presumably can be quite an obstacle in Aus. Mind you, someone said that anyone who thinks the UK is a small country should try travelling from Aberystwyth to Great Yarmouth. The roads the roads! Iām still knackered today from the little jaunt but Iād go almost any distance for proper care.
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Absolutely you have earned a rest.
The time and the effort you invest (and yes, it is an investment) in finding top-quality care pays HUGE dividends. When youāve been thoroughly and properly assessed and your disease is well-controlled, there are fewer problems and crises. The knowledge alone that you have good expertise if you need it does wonders to calm the waters. A few years back, after a very long period of non-diagnosis followed by poor assessment and ineffective treatment, I finally did what Sybil did and sought the advice of a world class researcher. It is a long trip to do three times a year, and it involves considerable expense, but it is all worth it. My disease is now well-controlled, and I know that if I start having problems, as Sybil says, itās someone elseās puzzle.
Well done, Sybil! And great work Mr. Sybil!
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I need to take your adviceā¦but I do not have the get-go to search for a better doctorāiām sure there must be a good PsA specialist in Minneapolis or St. Paul, which would be no more than a 90 minute drive.
My problem is I have a really hard time explaining my pain or problems to the doctorsāprobably because Iāve had so many bad doctors in the past I donāt feel comfortable bringing up all the detailsāespecially if Iām having a āgoodā day and itās hard to describe pain when it isnāt there.
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Grandma_J, I absolutely get what you mean. In fact I started talking about it this morning about 5 minutes after waking up. I was saying that the appointment with the new doctor made me feel both encouraged and fed-up. Encouraged because, well, thatās obvious really 'cos this is a really positive move for me. Fed-up because I half-expected that an expert in the field would expose me as a fraud, or at least tell me that things are not too bad really. And from her I could take that, Iād take it on board.
In fact she did make some encouraging noises about my joints apparently holding up pretty well. Sheās going to take a good look at all my x-rays though, when she gets them. But everything I told her about how it is being me with this damn thing met with professional understanding and recognition. So Iām not deluded, my PsA is exhausting, it is irksome, somewhat painful, all the time at the moment, it makes life harder. Humiraās probably not working as well as it was. Thatās reality, itās something I can and will continue to deal with and live with and Iām a happy person basically. But itās tough and I canāt tell myself that āgetting a gripā will make it all go away.
I notice that some people seem to have a very good grasp of their own reality. Iām not one of those people. I need a bit of help to see the disease for what it is otherwise I slide off into self-blame. Which is a form of escapism.
I think if you have a doctor who is not really as interested in the disease as they might be and not as knowledgeable as they should be then youāre never going to know whether they are āhearingā you or not. Plus of course some great doctors are not great at communicating. Donāt dismiss the option of finding a new doctor, the drive could pay dividends in terms of taking a weight off your mind and possibly even smarter treatment.
You havenāt said that you doubt yourself the way I do, but I guess you might at times, on good days for example. But I think you just have to continue trusting yourself to select the key things that have been bugging you and emphasise them to your doc when you see him. I think youāve put your finger on a really key thing that foxes many of us - how to relay all this mess to another human being coherently.
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I have to believe that we all have a moment, no matter how small, that we doubt ourselves. Itās especially bad in a case - like last Friday, for me - when the day after pain you wake up and are, relatively speaking, fine. Then the next day youāre not.
Is that all in our heads? Can we just suck it up and weāll be fine the next day?
The answers in order are no (technically yes - all pain of all kinds is āin your headā as itās based off of nerves firing signals to the brain, from my understanding, but weāre not imagining it), and, wait for it, no.
Why would we imagine this? I mean, really ask yourself that question - why would you want to invent that you have this disease? While there are possibilities of relief, this doesnāt go away. Itās serious. Itās lifelong. On the short term, I sure as heck donāt want to have it when I wake up in the morning and scream groan my way out of bed, and I donāt want it when my head is drooping onto my keyboard in the afternoon because I had to walk to the copier twice. Canāt imagine you or anyone else here really wants it either.
Can a positive outlook help? Of course it can. Getting bogged down in the āthis is never going awayā way of thinking isnāt healthy, I think we can all agree. But we canāt suck it up. We can exercise and take our meds and eat right and still wake up the next day feeling like weāve been hit by a heard of wildebeest in the night, and where did they come from in Suburban Ohio?
Course, Iām typing all this out and in five minutes Iāll be having another crisis and wondering if Iām just making this all to be worse than it is and wondering if I can just make it go away only to find that no, I canāt, and Iām going to send a panicky email to my wife about how itās never going to get better to be reassured that it has to, Iām doing everything right, realize sheās right, rinse repeat forever.
God Iām getting tired even considering what the inside of my own head looks like.
@Grandma_J have you considered writing a list of all of your current issues as you think of them? Maybe bounce them off someone close to you to make sure they make sense, or even off of someone here?
I did this before my last appointment with my wife, and ran down the list with the doctor. Think it worked pretty well.
I know there are online resources where you can search for doctors according to specialty, ratings, and, most important for the US, insurance, but canāt speak to how successful they would be, not having used them. Got to be worth a shot for finding someone youāre comfortable with.
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You donāt have wildebeest in suburban Ohio? Another illusion shattered.
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Got rid of them all in the great wildebeest purge a couple of years back.
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Hey Sybil, I think if I doubt myself itās only because Iām sometimes still in disbelief that this is for real. You know I was lucky that my PsA was slow to progress for several years and then it snowballed for a couple of years up until I couldnāt cope anymore. I think back to how absolutely crappy I feltāit was soooo much worse than it is now. I almost feel wrong complaining about it now! But the change in how my feet hurt and how I walk is my biggest problem, and that isnāt 100% of the time, either. So, what should I tell the doctor? For a 63-year old, Iām not doing so badly. Iām pretty sure thereās not much anybody can do for my feet, so why bother to bring it up?
My ear ringing is terribly annoying at times, but most of the time I can ignore it. Blurred and double vision can be a problem one day and not the next. My chest discomfort is finally becoming more rareāMy doctor increased my Pepcid dose and thatās helping.
I think Iāll just hang tight and go over the above-mentioned āailmentsā in my June visit with my Rheumy. He always seems pleased that Iām doing so well. And, Iām sure itās music to a doctorās ears to hear that the treatment he prescribed his patient is helping him/her.
Iām sure I seem like a psycho because Iāll complain on here sometimes as if my pain is unbearable and the next day everything is all goodā¦is that what this stupid PsA does to you???
Dilorenzo, I used to have a positive outlook. Lately I feel anxious and sad sometimes. That totally isnāt me! Iām blaming that on some of the new meds Iāve had to take since my coronary blockage. I have to be on one of them only for another six months, but the other two will probably be for life. If this keeps being a problem I might ask for an anxiety med. I know a lot of people who take Zoloft (Sertraline) and do well on it. Or, I could ask my doctor to put me on Nortriptyline again, but not as much for neuropathy as for anxiety. Iām putting this off as long as possible because Iām on several meds, and I donāt want to take more!
Hmmmmm (peering at you over my spectacles) itās always nice to make the doctor happy! But I do think you should go over those issues with him, some of them sound quite important even if they donāt have the decency to stick around 24/7.
Again, I can relate to pretty much everything you say! Especially re. ācomplainingā because so many of my problems evaporate (for a while anyway) once I get to the stage of having a good old moan about them. I sometimes wonder whether I keep it all in till they ease up a little, possibly almost imperceptibly but just enough to make me feel more comfortable talking about them ā¦
That photo is fabulous!
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Last Thursday I could barely walk. It was the end of a pretty bad flare that wasnāt letting go. Friday, I felt good. Tightness, but little to no pain. I felt good for the first time in over a month. No cane, it stayed in the car.
Next flare started Saturday. Dunno if I should count the pain as the flare or the feeling good, actually.
You shouldnāt feel crazy on that count, for sure.
Maybe, but itās bad enough to effect your quality of life, therefore itās bad enough to bring up to your doctor, right?
You also mention a few things like ānothing anyone can do so why bother,ā in relation to your ear and your feet. Bring it up every time, whether with your existing Rheum, or a new one if you donāt feel comfortable with the current one. Donāt leave out details, as that could lead to an incomplete or inaccurate treatment regimen or recommendation.
Besides, as far as Iām concerned, with this disease, not only do we earn the right to be whiny babies with our doctors, it should probably be the rule of law to do so. Maybe not so much outside of the doctors office (or the forums full of other sufferers), depending on who youāre talking to, but your doctor, go for it. It is in fact what you are going to them for.
I noted down everything - everything - that I had going on, not just the stuff I know can be tied to PsA when I went to my last appointment, and sure enough, I have to go and get some more stuff checked out that could be linked to PsA, could be something else, or could be nothing. Still gonna go and get it looked at.
I understand that, for sure. But if it helps with the anxiety, do it.
It depressed the hell out of me this morning as I poured out a handful of pills (Friday morning is Methotrexate morning) and realized I was taking almost as many pills this morning as I take Monday to Friday morning combined. Then I chocked the lot down at once because I am insane, apparently.
When I get to see my primary care provider, Iāll be asking for anxiety meds, if possible, so thoseāll get added to the handful. Believe my wife takes Zoloft, I think, and theyāve certainly helped her with her work related anxiety.
Iām going to have to say āadorbsā to this one.
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How true, Sybil and Dilorenzoāsometimes when we complain it goes away!!! And, itās happy that there are times when I donāt limp at all and other times when I hobble like a 95-year-old, but it must make people wonder!