I went to the doctor today. It was productive.
I'm just going to try to summarize via bullet points and micro-vignettes some of the things I conveyed [though I'm sure that will still get a little lengthy].
_______
Receptionist: Are you feeling ok?
Me: Uh. hot. I'm... HOT. I'm hot. I'm really really hot right now.
I was kind of swaying back and forth and feeling like I was not entirely there. My body felt like it was on fire.
---
They were running really late but i didn't really mind because I was kind of freaking out for a while, so I sat in the corner of the waiting room, drank water and tried to cool down.
GP: Hi! Sorry I'm running so late!
Me: That's ok... it kind of gave me some time to freak out for a bit first.
GP: ...ok, maybe we can talk about that?
---
Things I said:
---
Yes, I said all of this. And actually more. And it's necessary to share here, because it's what I told HIM.
I know it sounds REALLY REALLY harsh.
I didn't say it in a really harsh tone. I actually really like my GP- but I think that... I haven't been framing it right. And I haven't been because I tend to paint a better picture than how things are because I see myself as like, a stronger person. And i don't like needing help or asking for it, especially if it's not necessary. Or asking for more than I really need. I say that things are bad, but i'll leave out details. Or i tend to not be as forceful as i need to be to get what i need, even when i know my voice isn't quite being heard. Because, you know- TOO PUSHY.
But I tried the last resort med [that's actually given me BIG problems in the past], and it didn't work.
SO?
TL;DR
I was really vocal about being DONE with all this crap.
So the result is that he [GP] and supervising physician for the practice decided that it seems I have been getting worse so we did all the possible blood work again. They also gave me two months of flexeril to help me with my back and muscle stuff at night and refills on all other meds.
GP is going to talk to psych about how I've been loading up on caffeine just to function [I know that's not great, but... I mean, what else do I do?] because he also thinks that me going back on concerta- which I was on before and did really well on- is probably a good idea. My brain isn't working a lot and I'm fatigued all the time. Mentally and physically- and there are times when i just suddenlly stop being able to do anything- move or think. And it's not a "normal" shut down. When I'm on concerta it helps me sleep better too and I can just keep my sh- together better.
So they are going to look at the labs and see what's going on.
They are also going to look at records from last health org and labs from there and notes from when I was on low dose of prednisone then- and it did help, but I wasn't as bad then. That was also... 3ish years ago, maybe? 2-3?
But, basically they need to get all the info they can to make sure they can support prescribing it to me. And I totally get that. I really really do. And that's also why I've waited so long to be so pushy about it.
But i feel more positive, because I feel like they REALLY get way more clearly what is going on.
They are also going to push for me to get case management. Which would open me up to door to door transportation to appointments. Which would be a BIG DEAL for me.
Blah. Ok anyway.
ALL OF THAT. TRAWR.
I'm A dinosaur. ...or something. YEAH.
I'm just going to try to summarize via bullet points and micro-vignettes some of the things I conveyed [though I'm sure that will still get a little lengthy].
_______
Receptionist: Are you feeling ok?
Me: Uh. hot. I'm... HOT. I'm hot. I'm really really hot right now.
I was kind of swaying back and forth and feeling like I was not entirely there. My body felt like it was on fire.
---
They were running really late but i didn't really mind because I was kind of freaking out for a while, so I sat in the corner of the waiting room, drank water and tried to cool down.
GP: Hi! Sorry I'm running so late!
Me: That's ok... it kind of gave me some time to freak out for a bit first.
GP: ...ok, maybe we can talk about that?
---
Things I said:
- The gabapentin [basically the last idea we had to try] was a total bust. I had to stop it.
- I'm not sleeping very much at all and when I do it's awful and painful- I can't find a way to lay down that doesn't hurt.
- My back is getting worse.
- My hands and feet hurt worse and worse- the tops of them, the bones hurt all the time. My fingers hurt. MY TOES HURT.
- I am at the point where we need to actually consider prednisone as a realistic option because I feel completely powerless to change any aspect of my life. BECAUSE I AM.
- My functioning is so low that i can't do anything for myself.
- I am so vulnerable to the heat there are times when i don't even have food in the house. Yesterday i was only outside of the house a few minutes and I came extremely close to suffering heatstroke- I almost threw up waiting for the bus and instead of going right home, I just stopped at the grocery store and hung out in the freezer area, leaning against the cases. I couldn't go right home because I'd have to walk a few blocks in the heat right off the bus.
- This morning it was 62-64 degrees and too hot walking half a mile. Not as bad as yesterday but still? That's not normal. My body can't handle any kind of weather at this point.
- I am at my limit right now- I can't do anything else about my situation and boy do I try. I can not find any way to change anything, I can't make any money, I can't go to school. I can't even make things to sell on etsy in a way that I would actually get any income at this point.
- Taking a shower or doing laundry is an endurance trial.
- Going to rhuematology basically resulted in me feeling that my situation was hopeless because they told me "there is nothing else they can offer me" so I refuse to go back there.
- I have serious problems making it to appointments because of my actual health problems, I have trouble keeping my medications up to date and my room is likely a LITERAL health hazard but no one seems to think I am eligible for case management- though no one has actually investigated that with the case management department.
- Meanwhile my health is getting worse and I am being told we have run out of options. When someone has no way to change their situation, they are in chronic pain, they are faced with a life of unending poverty and are told their are NO SOLUTIONS, what are they supposed to do? [at this point I asked my doctor, "what would you do?"]
- I pushed hard on the idea that I understood the hesitancy to try prednisone since they keep considering all possible rheumatological DX's as R/Os [and not official], but as it is, my life is at a stand still, I have no relief from pain, and essentially no future. how i put it was: they are keeping me in a life of no choices and I am starting to feel hopeless. I can't be in a position where I feel hopeless. It's unacceptable.
---
Yes, I said all of this. And actually more. And it's necessary to share here, because it's what I told HIM.
I know it sounds REALLY REALLY harsh.
I didn't say it in a really harsh tone. I actually really like my GP- but I think that... I haven't been framing it right. And I haven't been because I tend to paint a better picture than how things are because I see myself as like, a stronger person. And i don't like needing help or asking for it, especially if it's not necessary. Or asking for more than I really need. I say that things are bad, but i'll leave out details. Or i tend to not be as forceful as i need to be to get what i need, even when i know my voice isn't quite being heard. Because, you know- TOO PUSHY.
But I tried the last resort med [that's actually given me BIG problems in the past], and it didn't work.
SO?
TL;DR
I was really vocal about being DONE with all this crap.
So the result is that he [GP] and supervising physician for the practice decided that it seems I have been getting worse so we did all the possible blood work again. They also gave me two months of flexeril to help me with my back and muscle stuff at night and refills on all other meds.
GP is going to talk to psych about how I've been loading up on caffeine just to function [I know that's not great, but... I mean, what else do I do?] because he also thinks that me going back on concerta- which I was on before and did really well on- is probably a good idea. My brain isn't working a lot and I'm fatigued all the time. Mentally and physically- and there are times when i just suddenlly stop being able to do anything- move or think. And it's not a "normal" shut down. When I'm on concerta it helps me sleep better too and I can just keep my sh- together better.
So they are going to look at the labs and see what's going on.
They are also going to look at records from last health org and labs from there and notes from when I was on low dose of prednisone then- and it did help, but I wasn't as bad then. That was also... 3ish years ago, maybe? 2-3?
But, basically they need to get all the info they can to make sure they can support prescribing it to me. And I totally get that. I really really do. And that's also why I've waited so long to be so pushy about it.
But i feel more positive, because I feel like they REALLY get way more clearly what is going on.
They are also going to push for me to get case management. Which would open me up to door to door transportation to appointments. Which would be a BIG DEAL for me.
Blah. Ok anyway.
ALL OF THAT. TRAWR.
I'm A dinosaur. ...or something. YEAH.