Maemae, I am sorry you are having a hard time but lamb is right about the shortage of Rheumatologists. I live on an Island on the east coast of Canada called Newfoundland. Our population is just over half a million people. Currently we have six Rheumatologists and they are all on the east coast of the island which is an eight hour drive one way. The specialist I am currently seeing about my PsA is an Internal Specialist/Nephrologist who has a special interest in rheumatology and consults with Rheumatologists on the east coast. Its not an ideal situation but its the only option that I and many more like me living on the west coast got. I understand its difficult to have patience when in pain but keep one thing in mind. I would much prefer to have a doctor who lacks compassion but is a great doctor than one who has a great bedside manner but lacks in their area of expertise. Hoping you find some relief soon xo
haaaaaaaaahahahahaha just now seeing this. ;)
crazylady said:
Be careful that's exactly how I got my ticket straight to the Adult Geriatric Psych Unit. last year. I said if my doc didn't do something soon I might have to get very angry. Opps :) I know exactly how you feel , Hang in there you can do this thing. You are strong.
Maemae said:Thanks crazy ;p I'm a "retired" RN and don't feel like she's knowledgable on PSA. I wished I'd have asked her what her patient demographics look like. In other words maybe she has limited patients dealing with this, maybe her specialty is RA or other.
Anyway regardless I've had a year of hurting and alternative treatments and PT and blah blah blah. I'm at my breaking point, y'all may see a news headline "mother of three walks in doc office and demands a shot of SOMETHING to help her function!"
Thank you. I appreciate your kind response. I am just going through a process of....processing this.
Easternlady said:
Maemae, I am sorry you are having a hard time but lamb is right about the shortage of Rheumatologists. I live on an Island on the east coast of Canada called Newfoundland. Our population is just over half a million people. Currently we have six Rheumatologists and they are all on the east coast of the island which is an eight hour drive one way. The specialist I am currently seeing about my PsA is an Internal Specialist/Nephrologist who has a special interest in rheumatology and consults with Rheumatologists on the east coast. Its not an ideal situation but its the only option that I and many more like me living on the west coast got. I understand its difficult to have patience when in pain but keep one thing in mind. I would much prefer to have a doctor who lacks compassion but is a great doctor than one who has a great bedside manner but lacks in their area of expertise. Hoping you find some relief soon xo
Sorry. I'm just having one hell of a time processing this. I'm truly about the most laid back person around, which is probably why it took a year for the doc to realize I was really really serious about my pain.
tntlamb said:
Then forgive me, you have said nothing about you physician to this point except you had trust issues because the start oh humira therapy was delaed a week. My concern is very real. Go off on that and would possibly have years of problems including the kiss of death chart note. "Ms XXXX concern with pain seems inconsistent with her current symtoms and disease level." And yes I'm glad you have other issues with the doc besides the scheduling issue. No sarcasm there, because if that was all it took to set off you would have a long road ahead.
Unfortunatly there is a massive shortage of Rheumys everwhere. It's darn easy to cross the line to unreasonable and demanding. For every patient who moves on there is five to take their place. I very much care. Everyone can get great care if they want it. Demanding it isn't enough.
Reread your post through someone else eyes not knowing any of the background....... If this was you patient how would you react? If you were the docs staff who see him as agreat boss with hundreds of happy patients some who even bring him fruitcake how would you react? You missed the understanding boat with me. If I didn't care I wouldn't waste 10 seconds telling you otherwise.p>
You asked what to do, I told you from what I heard. Balance that with what else you know that we don't or haven't heard. Don't go in Monday with gun blazing don't cofuse medication instrustion with a physician appointment, don't expect Humira to take care of an acutE situation or to work quicly ( like in the next few weeks) and don't confuse mistakes with trust issues. That will lead to problems.
I have been going down this road for years. It seems to me that we should all support our friends on bad days and not give them a tough time. Yes, lamb is fine if you are not chasing three young children around. But their lives depend on you being able to respond when it's appropriate.
I live in an area where we have huge medical centers and doctors with the huge medical egos that sometimes go with them. Right now I have three docs I have to see and not one of them approves of the others orders.
Sometimes a person just needs to vent about hollerin' when the time comes. Hollering and moaning should be expected here :)It saves our families a lot of garbage they don't need. Also keeps us level headed when we head back to the docs one more time. I get it, kiddo you can vent to me any day. I laid a load on you guys last week and you where all right there with hugs. Right back at ya.
AAAAAAAAAAAAAAAAAAAAAAAAMEN. In DC. Plenty of docs to go around. At home, not plenty of mama to go around. amen amen amen. just amen. xoxoxo
crazylady said:
I have been going down this road for years. It seems to me that we should all support our friends on bad days and not give them a tough time. Yes, lamb is fine if you are not chasing three young children around. But their lives depend on you being able to respond when it's appropriate.
I live in an area where we have huge medical centers and doctors with the huge medical egos that sometimes go with them. Right now I have three docs I have to see and not one of them approves of the others orders.
Sometimes a person just needs to vent about hollerin' when the time comes. Hollering and moaning should be expected here :)It saves our families a lot of garbage they don't need. Also keeps us level headed when we head back to the docs one more time. I get it, kiddo you can vent to me any day. I laid a load on you guys last week and you where all right there with hugs. Right back at ya.
Thank you so much. After a much needed NAP and all your words, I am feeling ready to take this bad boy on again! ;) But don't fret, I'm sure another meltdown will come. :)
sybil said:
One of the hardest lessons I've learned (am trying to learn) is that being your own advocate, PA, counsellor etc. etc. seem to come with the territory. I once assumed that I'd be diagnosed, get treatment and that would be it. Instead of which I spend a hell of a lot of time trying to navigate my way through procedures and misunderstandings, downright neglect, doctors' egos, other peoples' lack of comprehension that I'm actually physically challenged in any way whatsoever and so on. I'm sure you will handle this current situation really well and get the treatment you need eventually. It is so annoying having to process what's going on and decide on the best strategy, but everything you've said suggests you'll succeed. I wish you well.
Vent here never at the doc and especially his staff. Even if he is the biggest horses patute in the world. I come from that world and am still in it in a different role. I can generally help you cut through th BS unless you get on someones shit list. Sorry I didn't make that clear. The funny thing is being laid back sometimes isn't a help. When you go off everything is the same size.......Its almist always the wrong time and the wrong people.
Here we can go back. Once your charts are noted you are pretty much screwed, as you know they are electronic and go from doc to doc. Its hard to fix. I rarely take anthing personally, so if you want to lay it on go for it.
There is never enough mamma....... We raised nine and are on the second go round with special needs 14 yearold her parents are deceased. Mom in a car accident and dad KIA,
The worse thing any patient can do is to show more knowledge than the physician and shut down every attempt at a diagnosis. We lay a lot on our physicians - our physical state and our mental condition. Some medications might help one disease and make the other one worse. It’s safer to rule out other iasues first, before proceeding with high risk medicarion.
As you already no, there are different types of PsA. Some of them are very slow to progress, while others progress very quickly. Also, there are many physicians that simply don’t believe in PsA.
I am all for standing up for yourself, but given the physician a chance.
I'll tell anyone my dwindling RN/NP knowledge is null and void for this personal battle for many reasons. One, I haven't been in practice in over 6 years. To make it worse, they SKIM over autoimmune disorders in undergrad (think "alright students, there's MS/RA/Lupus and a few other weird ones you'll rarely see. for boards focus on meds and diagnostics on these main three and pray you don't get a question on the others. oh and if you ever have a patient on MTX you best know the side effects") Once they scare the crap out of you about AI disorders...that's the last field you are going to choose in grad school. So my knowledge with AI consists of what I crammed 12 years ago. I rarely even tell anyone I'm a RN unless I accidentally say something like "exudate" or "copious" and they figure it out. LOL
Just to backtrack, I've been working with this doc for a year to come to this diagnosis. I've had SI joint dysfunction, Plantar Fasciitis, "mommy neck", tennis elbow, bone marrow edema, adrenal fatigue.......Every diagnosis was accepted and all options exhausted to include walking boots, night splints and "dry needling" into my neck muscles (HA!).
Anyhoo, I so appreciate the advice and guidance of those who've walked this road before me. Truly I do. Thank you=)
You are dead-on about the being laid back not always a winner personality trait. When dealing with me, please keep in mind I'm from the deep South and still detoxing from years of being warped there. LMAO
tntlamb said:
Vent here never at the doc and especially his staff. Even if he is the biggest horses patute in the world. I come from that world and am still in it in a different role. I can generally help you cut through th BS unless you get on someones shit list. Sorry I didn't make that clear. The funny thing is being laid back sometimes isn't a help. When you go off everything is the same size.......Its almist always the wrong time and the wrong people.
Here we can go back. Once your charts are noted you are pretty much screwed, as you know they are electronic and go from doc to doc. Its hard to fix. I rarely take anthing personally, so if you want to lay it on go for it.
There is never enough mamma....... We raised nine and are on the second go round with special needs 14 yearold her parents are deceased. Mom in a car accident and dad KIA,