This is just a rant i guess . Woke up this morning with such horrible jaw pain and felt like i had the worst hangover in the world. Called my ENT and got his partner, who looked at my case and said i should not be in such pain and to go to the ER. I go and once they got wind that i was already under the care of 2 drs there , sent me home and told me i must have taken too many vicodins . I had taken half a vicodin yesterday at 6 pm . I am realizing how sick i really am and how impossible work has been , and seeing its time for me to leave because its causing me such added stress. I am having to try to hide how sick i feel, i have been in a fog and screwing things up and i wake up to my alarm and cry because I feel like i got hit by a bus . My help has not come yet , i have not started plaquenil yet so its not like i feel that i am making any progress , only getting worse and worse. My bf that i live with has been ok but i can tell i just seem like a sick woman to him and the attraction is gone . Waaaah !!!!!!!!
Can you fill out Family leave paperwork and give yourself time to stabilize? Until we begin treatment everything can look so bleak. Be good to yourself and start treatment.
Anna
Have you been given anything? If not I don't care where your Dr went to school, time to move on. They should at the very least be giving you evoxac. I am lip biopsy negative, blood work looks perfect, male, 33y/o and I have been given plaquenil, evoxac, and salagen by my rheumatologist. It took the 3rd rheum to get anywhere but you need to be your own advocate or bring your BF and make him be your advocate. My fiance was my advocate and helped me at my last rheum appt where I walked away with a plaquenil Rx. The ER's job is to make sure you're not dying and move you onto the next guy or girl...
I agree with dryguy - time to move on to a new rheumy - start plaquenil and evoxac and take some time to see if the medications will help. FMLA may be the answer to give you some much needed time to figure out if the treatment will help you to get some of your normalcy back.
So sorry to hear that you are in so much pain and not having much support in the way of medical professionals.
Again, just my opinion, not a medical professional myself, but I had to fire two drs before getting my medical "dream team".
I do hope you can find some relief and start treatment soon.
please keep us posted.
sending positive thoughts your way.
There has been talk of putting me on plaquenil "soon". I just wonder how i am going to make it until then. I am not annoyed with ER, but with my doctors that have let me get to this sorry state. Its been horrible pain ( about the same level as a tooth absess) for over a year for me now . I guess i am just burnt out . My ENT and rhuematologist are failing me and it seems like i just go there, tell them how miserable i am , get a test. , wait weeks and weeks , repeat. Wow i am depressed i can see that. In the short time i have been on here i have had more help than one year at the drs, thanks guys
Tracy.
I don't see any reason to delay putting you on Plaquenil. You need it yesterday. Or last year... And maybe a steroid taper to help you at the beginning before Plaquenil kicks in. Now, grab a phone and find yourself a new rheumy right now.
I don't know about USA systems but I too think you should get treatment first and not quit your job as a first option.
About your BF (best friend??)... If he gives up on you because you're sick then he's just not worth it. imho.
Please don't wait anymore but take care of yourself, by finding someone who actually treats you. Okay?
Hugs and empathy and a kick to your a** :)
eija
Hi Eija- i am at a loss about my job. They have already hired a young woman who is starting this week who mysteriously will be doing about the same things i do . It might be a lost cause . I told my dr that this was going on a couple months ago. My boyfriend has been ok , i have just hated to see his eyes glaze over when i talk about my illness , i am sick of it , its just been rough to watch that situation degrade as well. i am feeling sorry for myself today , i usually rally and perk up in a few days but its getting harder i wont deny that ! ;)
Hang in there, Tracy.
About job probs, think twice, and then twice again before you do anything drastic. I'm in a tough spot myself, so I kind of know what I'm talking about :(
Also, watch on yourself on that perking up. When it gets too hard (or rather a bit before that), go get help for that, too. Depression is very general among us, too. And it's more treatable when caught early.
Tracy
Sounds like you need a new team of doctors, that WILL treat you based on symptoms. There is no reason (unless you have a contradictory health issues re: plaquenil) for your doc to "soon" on the plaquenil. "Soon" is like kicking the can down the road.
As for the job, the FMLA is a good idea - or even a short MEDICAL leave of absence. Depends on what benefits you have as to whether it would be paid leave or not, plus factor in can you afford unpaid leave if you don't have adequate benefits to have paid leave. I certainly would NOT quit the job - that in my view is a last resort option, not a first choice option.
I agree with Eija on the job problems, refrain from doing anything drastic. It's a tough spot to be in, especially since your employer has hired a new person apparently doing the same work in effect as you do. But think through carefully your options on that, including best case worse case scenarios.
Meanwhile, as far as the two docs you do have, time to advocate for yourself...beginning with your current docs. If neither will step up and begin to treat you symptomatically, time for a new team.
Hugs
Amanda
Hugs. I get bouts of the kind of pain you have. I cannot imagine it being continuous. And a repeat of all the advice above! If the docs can get their act together prescribe major pain meds, then they should be able to go a step beyond that, IMO.
I know your concern about your relationship. I'm making a conscious effort not to talk about my health to my DH unless it's something new or significant. He's kind and compassionate, but any topic that is repeated gets dull. I feel like cr*p on the cracker every morning for about two hours until my joints un-gel. I used to mention that every morning. Now I don't. This allows us to talk about *anything* else over breakfast and actually helps me get myself out of myself a bit. When I'm wanting to scream "I'm sick and tired of this!" I try to drum up some interesting tidbit I've read in the news or something. Or ask him about his work. Anything to keep my mind off the fact that I can't actually eat yet because my hand won't let me pick up the fork.
This approach only applies if your guy is otherwise supportive and kind. If he isn't, well, whole 'nother ballgame.
Several decades ago a workplace hired a very young person, the son of the bosses neighbor, to do mysteriously the same thing as me. A couple of weeks later after being fired I realized I'd been training my replacement.
Not saying that's the case with you but if you think it is try to hang on a couple more weeks if you can. It's generally a lot easier getting unemployment and other benefits if they let you go rather than if you quit yourself. It's generally a lot harder for them to challenge unemployment payment for example.
Quote from: gphx on May 12, 2014, 10:58:48 AM
Several decades ago a workplace hired a very young person, the son of the bosses neighbor, to do mysteriously the same thing as me. A couple of weeks later after being fired I realized I'd been training my replacement.
Not saying that's the case with you but if you think it is try to hang on a couple more weeks if you can. It's generally a lot easier getting unemployment and other benefits if they let you go rather than if you quit yourself. It's generally a lot harder for them to challenge unemployment payment for example.
Wisdom there, Tracyrose. I agree with trying to hang in as best you can a couple of more weeks - justin case.
Hi Tracy
I know it seams awful leaving your job, I had a job I enjoyed, but really struggled & I kept having to take weeks off and when I worked I came home like a zombie and went to bed most nights....I had a really understanding boss luckily. one day we had a meeting under awful lights that look several hours, I knew they had affected me but the contract was worth a lot if money, the next day the fog descended and I don't really know what happened as huge chunks of my memory are gone, I Remember being lost, several hours away from home and paralysis had kicked in and all my communication was gone- thankfully (after several hours & lots of hysterical crying in my car) I had the sense to send a photo of where I was to a friend who came and found me in a big mess. That day I decided no job was worth feeling terrible and stressed and making myself worse so I handed my notice in.
I took several months down time getting used to my new broken body and limitations and decided to set my own business up so I could work around it as much as possible with no one to answer to. It's still difficult and exhausting at times, but it can have days where I lie in bed in my pjs sending emails and making phone calls and no one has a clue!
I love what I do now and I don't think I would have done it without things being so bad. Sometimes it's about perspective- but if you can try and get some time off before you decide to regroup and focus on yourself.
Good luck with everything!
Lucy x
I know how you feel Tracy, doctors can be frustrating to deal with. Especially when you look good on the outside and most of the bloodwork is within reason. At first I loathed my rheumy but she was the only game in town, over time we built a relationship it took about a year of seeing her every 3 months. In the end she does listen to me, she knows im a complicated case with so many different things going on. But she watches my bloodwork that goes from positive to negative and back again, she ask me about any new or worse symptoms and we go from there. I guess it could be worse, there could not even be a rheumatologist here to even see. Then I would have been untreated still. As for the job dont act too hasty I did and I regret it. These illnesses for most people wax and wane, we have periods of days to months where we are down, and then periods where we are up. Once you do start something to make you feel better the up may be more than the down, and you find you can do your job.
Personal relationships are another story, I found it best not to over tell my family and friends too much. They dont get it and they wont get it. Thats why we are here on this site, and other support groups for people with chronic illness. We get it. I recently met someone in my town that also suffers from chronic illness, this is someone I can see becoming friends with, and us understanding each other without having to gripe about every detail, and feel like the other person dont care cause they dont understand.
Any way im going off on a tandem lol, help your doctor understand but dont overwhelm him too much all at once. I read this article/blog from a doctor to his chronically ill patients. I think it holds a lot of truth about many doctors, and how they perceive us.
http://updates.pain-topics.org/2013/06/a-doctors-view-of-patients-with-chronic.html
I am thinking about having a heart to heart with my boss . I am pretty sure he will say i was laid off if i ask him to. Its not my fault i am sick but to be fair he should not be suffering either. Like i said , some days i am deadweight there and my drive is all but gone . I am reading pretty bad things here about Social security though, thats not looking like a great option . I just dont think i can haul myself out of bed another day at. 6 am and work till six pm . Its ok for one day then wham next day I am in trouble- dizzy , exhausted . You know what i mean i am sure . I have been in denial for awhile about how sick i feel . Thanks for the advice . Im not quitting , no unemployment so that is out of the question . Funny how people who get fired are rewarded and quitting for health reasons is not worthy !
Tivia what a great link. If I had a printer I would print a copy. There doesn't seem to be a way I can send it to my iPad.
It is good to see this from a doctor's perspective and it is a good reminder on how to approach new md's.
Thanks