Lupus and fibromyalgia

Dots

Misknown Member
#23
Good news: the pain clinic appt went better than the appt with my primary. They prescribed muscle relaxants that lessened the pain in the past but that my other doctors were reluctant to prescribe.

Iffy news: I've been referred to a chronic pain group. I know I said I wanted to socialize but now I want to retreat.

Bad news: have not been able to get an appt with the specialist for a pressing issue. A scary issue. Almost cried on the phone with the receptionist. Held it together. Didnt want to he one of those.
 

Ash600

Of dust and shadows
SF Creative
SF Supporter
#24
Seems quite the mixed bag : The good, the bad and the arsy. At least the pain clinic stepped up to the mark, prescribing muscle relaxants to help take the edge of things. With any luck, with you being under their care, they will continue to provide effective treatment options for you.

The appointment with the specialist, being bellended by the receptionist......
I take it you'll persist in trying to arrange an appointment?
 

MisterBGone

SF Supporter
#25
On here ‘iffy,’ . . . You can always try it out—give it a go! & see what happens, cuz: you (just) never know! I know you may have your mind part way made up; but what if it’s not quite like that at all..;) what then, I wonder? :)

on the “good!” ... yes, I’m so very glad to hear this! I remember the muscle relaxers they prescribed me were quite the bon voyage, to dreamland— ~*•>(though that may have been in, part, or partially... // speaking - something of my own doing!) so I can never really tell if they’re helping to quell the pain; or in & when doing so, I’m fast asleep 😴 either way; tis better to have & not need! (Than the reverse-) I say! :D (so I may not know how well they’re working giving the shut-eye! ;);) oh-yes! My, my, MY-
 

MisterBGone

SF Supporter
#26
On the bad (or was it, ‘ugly?’): _/ can you reach them by some form of email, ala~ electronically; such as a patient portal, by where or which, you can schedule appointments directly with you doctor (in this case, specialist; & then usually this way here, I have found, on the hospitals app - the specific doctors nurse or assistant will help you... rather than those ‘sometimes,’ egotistical people Manning the receptionist booths, it’s like 👍 they’ve got to prove their worth or something to you - when you point out something that they’re reading wrong from the doctor (that they’d written for given instructions going forward & on the next appt.!) they’re like, “how dare u question me? And my authority—!) ;););) ... oh, it’s quite easy missy, I’m the one whose remaining calm and far more the expert on or of my case than you. So, after 5/6 years of doing this exact same thing, I think I can pretty well tell when you’re trying to not so much intentionally screw me over - just casually - or by passer ly (passively, unconsciously/or unintended; or -tentionally!)
Becaus what you’re very definitely doing to me right now - by arguing with me & standing there going toe to toe, trying to prove who’s wrong and whose right? If I back down and let you get your way... I’m just f’d for the. Ext 3 months, or so! (That is all~|*•>) now back t o you r coffe or is it diet. Coke n’ cigarettes 🚬 ;D
@the.end.ish !
 

Dots

Misknown Member
#29
@MisterBGone they told me that all of their appointments were filled up and that I'd have to try again next week (this week) to schedule. the tests I need are hard to schedule due to everyone being focused on covid and nothing else... I asked her if I schedule one before the other, to get it out of the way and she insisted that I needed to take the test that is hard to schedule before I could take the other, which is directly contrary to what the doctor told me. so when I questioned her about it, she acted like I was being combative and slow instead of, you know, worrying about my health and quoting the professional that actually performs the tests.

So yep, she did seem to me to be spiteful because I kept pressing. I went off script. I don't know. Hopefully it's a different receptionist tomorrow.


@Ash600 It was my intent to persist but I forgot... despite my reminders, so hopefully my brain works tomorrow.

@may71 Thanks may. I'd rather not dwell on it atm. No concrete answers yet so better not to.
 

MisterBGone

SF Supporter
#30
Maybe you can reach his (your doctor’s) nurse in the morning... (or his assistant, if that is a different person than the one in which you spoke? :) And see if she might be of some assistance in the matter of clearing up the confusion. Stay calm, and focused. . . But CLEAR— state what the issue is, and conversationally explain that you understand the difficulty with which it is for them to help you get this situated, or settled. But that it is of the utmost importance to you and your care / case. With the doctor giving exact/specific/precise orders for you to follow in the scheduling of these things (even if there was some flexibility in the order of them). Be nice & keep all emotion out of it - the call - until you hang up. Then you’re free as can be to lose your stuff... ;) let them know the conflict, in its simplest terms. And the reasons why it’s so paramount to your rectifying of your condition & health. I’m sure it’s just a technicality, in the sense that she’s wrong about something in terms of scheduling procedures. And when put under what she perceived to be the heat / light, she reacted in reactionary / defense mechanism, or defensive fashion. As opposed to - or rather than to professionally and reasonably try to problem solve and work through whatever issue it was that she may not have correctly understood (I’m sure all it would have taken is a brief phone call to his helper to confirm or deny your information: “double check,” / her’s... in other words!) : )
Good Luck 🍀 good luck 😉
 

MisterBGone

SF Supporter
#32
Yeah if you do get that same woman tomorrow, I would maybe even play it more like, “hey! I’m sorry I wasn’t able to explain myself better yesterday. I was super(emely) stressed. As this just means a lot to me and is something I’ve been dealing with that’s been interfering with my life / peace & happiness, whatever for a really long time. If you wouldn’t mind, I’d take it as a very great favor if you could just double check with the doctor that I misheard or misunderstood what he said yesterday (in terms of the order in which these labs / tests can be ordered)? Thanks so much! And I’m glad we could get that taken care of ... I really do appreciate your help! Bye 😽 & take care- ;)
 

Ash600

Of dust and shadows
SF Creative
SF Supporter
#33
@Ash600 It was my intent to persist but I forgot... despite my reminders, so hopefully my brain works tomorrow.
What if I were to give you a reminder here? " @the.end.ish , this is your reminder "

That shite you had with that receptionist who got all arsy and combative regariding you trying to sort out your appointments. It sounds like she went on the defensive as she felt you had called her out. No fault on your part, just an ego thing perhaps on her for the temerity of being questioned even though in your case it was totally valid.
@MisterBGone 's advice is spot on regarding how to play it, ie being as diplomatic as possible, but once out of earshot let rip as much as you want. These people can be incredibly delicate, some you can persuade into exhibiting civil behaviour, but others, it's a case of biting the bullet as those fuckers will never change, born brutal, and acted brutal no matter what as I have experienced over the years.

But all the best, hope you'll be able to make some progress in getting your appointments arranged.
 

Ash600

Of dust and shadows
SF Creative
SF Supporter
#35
@MisterBGone @Ash600 Thanks. I was able to schedule my exams today with a different person. The other was just mad I kept her on the phone longer than she deemed necessary.
Well done, that's great news hearing that you were able to schedule your exams.
As for that other person getting annoyed, yes how dare you keep her on the phone and so preventing her from more pressing tasks such as reading the updates in Hello magazine, painting her nails (or more likely trimming her claws with an angle grinder) and gorging herself on a box of choccies (or rather gnawing away at an unidentifiable carcass). I expect that being unable to undertake such activities could be considered to be highly provocative. ;)
 

Ash600

Of dust and shadows
SF Creative
SF Supporter
#36
@MisterBGone @Ash600 Thanks. I was able to schedule my exams today with a different person. The other was just mad I kept her on the phone longer than she deemed necessary.
Well done, that's great news hearing that you were able to schedule your exams.
As for that other person getting annoyed, yes how dare you keep her on the phone and so preventing her from more pressing tasks such as reading the updates in Hello magazine, painting her nails (or more likely trimming her claws with an angle grinder) and gorging herself on a box of choccies (or rather gnawing away at an unidentifiable carcass). I expect that being unable to undertake such activities could be considered to be highly provocative. ;)
 

Ash600

Of dust and shadows
SF Creative
SF Supporter
#37
Well done, that's great news hearing that you were able to schedule your exams.
As for that other person getting annoyed, yes how dare you keep her on the phone and so preventing her from more pressing tasks such as reading the updates in Hello magazine, painting her nails (or more likely trimming her claws with an angle grinder) and gorging herself on a box of choccies (or rather gnawing away at an unidentifiable carcass). I expect that being unable to undertake such activities could be considered to be highly provocative. ;)
How the fuck has this post come out twice? Someone been N-shunting my internet connection again? *dunno
 

MisterBGone

SF Supporter
#38
@MisterBGone @Ash600 Thanks. I was able to schedule my exams today with a different person. The other was just mad I kept her on the phone longer than she deemed necessary.
Another thing you could do, if you run into difficutly with this person, or another in the future. Is to just take a breath, relax and then ask politely to speak to someone else (because you are failing to explain yourself properly, or in an effective manner). So, try to let them think it's not their fault --& maybe they'll be willing to help you out? I've seen that work before (though in other venues, admittedly!) :)
 
#40
Who here has a relationship with pain? The kind of pain that brings you to your knees and makes you wish you were dead so you didn't have to suffer anymore. The kind of pain that makes you think torture would be a tolerable alternative, because then at least you'd know who your tormentor was. Then at least you could fight them. The kind of pain that makes you dysfunctional and when you have flareups it's so bad that you can't even recognize yourself, because you can't recognize your thoughts. You can't comprehend them.

I have this relationship with pain and I can tell you I am losing the battle. I wanted so badly to be set free. I told this to my fiance today and after an hour of him pleading with me to go back to the doctor, he finally conceded that it would be useless. Doctors have done very little for me and my conditions. Because even doctors don't understand pain when it appears nearly invisible. When it's not gashes and bruises and a knife through your skull.

And they give you anti-inflammatories and steroids and in some cases anti-depressants, but it's just a band-aid. In some cases, it seems like a placation. And if you don't scream and shout and whimper and cry, it must not be that bad. But trust me, I'm screaming on the inside.
Sorry tbat your suffering.. Have you ever had your vitamin d and b12 levels checked?
 

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