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babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 5/31/2006 6:30 PM (GMT -7)   
I go to my 2nd rheumy visit tomorrow.  Post BW and bone scan.  Very nervous about this.  Especially after the NP called and told me she was setting up a training session for injections.  I don't know if I can do these injections.  Oddly enough I give them everyday, just not to me.  I guess I can assume that my bloodwork wasn't bad or I might have expected a call already, but I know how I feel.  For the women out there, do you feel worse during that particular time of the month?  sorry guys.  The swelling is increasing along with the fatigue and my hands were really acting up today.  My feet always are.  By inflammatory that could mean a large amount of things, so I really don't know exactly what I have... will i ever?  I made a mistake by talking to the owner of the practice and the OM last week where I work.  All I said was that I might have to take on easier tasks when I am feeling so bad... all they seem to think is it is just joint problems... when it is truly a full body issue.  Especially with fatigue.  All i keep hearing is how mary does it or katie does it, they deal with it, what makes you so different?  People are pissed now.  I thought it might have been a good thing to talk to them openly, but now all I fear is they are looking for how to get rid of me.  How come no one else understands this?  Why do I have to hear you werent limping yesterday, or you were fine the other day??  They treat me like I am faking.  I don't understand.  Would it be better to get fired before filing for disability if it comes to that or quitting then filing?  I hope I can find significant improvement in these new meds so that I can continue to work, because I have a lil man to support. 
 
ok done rambling... just feel like crying today.
 
bloo
dx: Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
 
Meds: Indomethacin TID, Neurontin 600mg, Maxair, Advair 250/50, Diovan HCT 160mg/25mg QD, Synthroid .1mg QD, Women's One a Day,  Ultram PRN.
 
 


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 5/31/2006 9:21 PM (GMT -7)   

I"m not sure which would be the best route if you just can't take a medical leave of absense for starters.

As for the 'time of the month' - yes, I get much worse! I flare something awful for a good week and major fatigue with it. For at least 2 days before I am in a LOT of pain and also get insomnia (doesn't help the flare or the fatigue!) I can feel it in my joints and muscles, and tissues. Sometimes, if I'm really lucky, I'll get a flare when I ovulate too! Isn't that nice!?

I'm so sorry you're doing so rotten right now. People who don't understand are jerks - so, that's most of them. sad   I hope you feel better soon.
 
Take care.
***
 


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 6/1/2006 4:36 AM (GMT -7)   

Bloo,  I'm sorry you're having a rough time of it lately.  And it does bite when people don't even try to understand.  I was just telling my husband that the other day.  How can I get support from friends and family when I look perfectly healthy on the outside, and them most days I limp but some days I don't?  I'm sure we can all understand where you're coming from on that one.

Don't know much about the injections; I assume you're referring to cortisone injections?  I've never had them, never needed them. 

With respect to your job, the bottom line is you need to do what's best for you.  Employers don't always understand employee situations, and quite frankly, they don't have to although it would certainly be nice if they all did.  I know if it came down to it and I had to quit or take a leave of absence from my job, I would do it regardless of what my supervisors thought.  It might mean giving up my career job, but then how much of a career is it if you don't feel well enough to handle it?  My identity is not tied to a career so it really is not as big of an issue as it would be for some.

IN any case, I truly hope you get the answers you need from your doctor and that the injections help you.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 6/1/2006 4:53 AM (GMT -7)   

I give up.  Didnt get to see the doc today.  Had the NP who decided since I feel okay we wont do anything now.  I don't feel okay.  I told her that.  Wants to wait until I have another flare.  I don't want to have one.  I couldn't even walk with this last one.  I called they didn't want to see me just prescribed a medrol pack.  I couldn't even walk.  She doesnt know what it is like to wake up having to go to the bathroom and you can't even get up to get there.  I don't want to go through that again.  I am going to end up losing my job.  She mentioned plaquenil but then said no because I was feeling more than 50% better than two weeks ago.  I can't keep doing this.  I just want to give up.

 

b


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 6/1/2006 4:57 AM (GMT -7)   
bloo sry to hear the struggles you are going through.... i know last month when i finally told people what i call the silent pain, noone knows how u feel unless u tell them.... anyway i too got mixed reivews at work.... some so supportive all they would do it talk to me about my pain, which is not what i wanted either or others if i stated i wouldnt take on a new case that week because i was at my limit looked at me like well kim has it and has ever complained once. well kim has the "RA factor" from blood work but has never had a day of inflammation or pain other than her big toe and takes no meds ! for real and that is not true RA if u ask me and i do not wish her to ever experience it either! i know the blood work is not conclusive but it sure is frustrating being compaired to someone else.

my best advice is do what you can with as positive of an attitute that you can and ignore those that are ignorant. when someone comments that you are walking better one day answer back, YES it was a good day i hope i get another one real soon!

also there are laws out there the ADA american disabilities act that require employers to make accomadations for persons with disabilities. you know from Feb til last week i didnt think i was gonna be able to keep up my job and called in way to many times but i am at a fairly workable place right now and i hope you too will soon find the right treatment for you so that you can have a week of tolerated days.

make sure you keep the chin up and try to be positive because this life with pain can get you in a dark place tht we dont want to go to. been there done that. actually this site is my therapy and has helped me out of that dark place, thanks everyone! ((((hugs)))))

i used to read alot but found turning the pages and holding the book so painful that i turned on the TV, yes TV, and found some old sitcomes that made me laugh.... laughter is the best healer i think so join me and the other couchpotatoes and get a good laughonce in a while... soon you might be able to be out and active again, but right now listen to your body and not the ignorant co workers :)

good luck at the rheummy and let us know what he says! ~*yalinda

yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 6/1/2006 4:59 AM (GMT -7)   
blo0o dont give up we must have been typing at the same time  sry u didnt see the rhuemmy..... if u are not happy with this doctor can u see another? yalinda

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 6/1/2006 6:30 AM (GMT -7)   

I agree with Yalinda.  Can you possibly go to another rheumatologist?  This one is obviously too busy to take on your case.  I have a difficult time understanding why your verbalizing your pain to the NP didn't result in the doctor giving you something, even advice to take motrin (or the equivalent).

I hope you feel better soon.

Elcamino


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD; Inflammatory Bowel Disease
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 6/1/2006 6:46 AM (GMT -7)   

Bloo:

I know it is frustrating all the way around, but don't give up.  You will eventually find your way, although I am sure it doesn't look that way now.  I just received a diagnosis after 10 years of waiting and going through what you are going through.  Even now, the doctor says he wants to reserve his opinion because of new symptoms I've developed.  Either way, I found it best to just take things easy when I get a flare and remind myself that eventually it will get better.  After years, I can now take it in stride, knowing that there will be good times and bad times.  Life is like that.  The worst part for me was how others perceived what I was going through and attacking me as a person.  Until the diagnosis, everyone acted like I had "control" over what was happening to me.  I have never been lazy, an attention seeker or a complainer, but even my best friends and family called me these things.  My mom even asked if I did drugs or was an alcoholic, knowing completely well I abstain from everything.  They were looking for anything they could blame on me or that I could "fix".  They were uncomfortable with my disease, as was I.  I started questioning my own sanity after a while and became depressed.  As I tell everyone, because it took a while for me to learn, I am me not what anyone thinks or doesn't think I am. Nor can I be compared to anyone else.  This illness or others perceptions doesn't change who I am as a person, only I can change who I am.  I deserve the same respect as a human being irregardless and I will accept nothing less than the respect I deserve.  If someone doesn't respect me or my limitations from the illness, I'll explain my case.  If they still have a problem, I walk away from them.  Their problem is their choice and I can not change that, but I give everyone the opportunity to think things through to make that decision.  My choice is whether or not I want to deal with them or not under the circumstances... whether it be work, family, friends, etc.  That, I do have control over.

One thing I did learn.  I had to accept me having this illness and not being freaked out over it before others could accept me and not be uncomfortable around me.  Attitude makes a huge difference.  Especially at work.  If you are good at your job, happy, easy going and flexible at work, chances are your employer won't mind a few adjustments.  It is really unfair of us to expect an employer to make huge adjustments.  But most of the time, these are little adjustments.  Being direct with your employer is good.  But approach it as a problem with a solution.  I realize I'm missing time from work... Is there a way I can make this up to you?  I realize I can't get to a file or something...can we move some of the filing over here where I can get to it.  Problem...Solution.  Most employers are concerned with performance, dependability and the bottom line.  Your attitude and how you approach situations is key.  It's a journey.  I wish you the best.  - Kris


cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 6/1/2006 7:12 AM (GMT -7)   
Can't give up Boo, nobody else is going to care more than you!
I still have that open invitation to anyone who wants to treat my fellow sisters with RA poorly. They can come to Durango, or I'll go see them. If they can keep up with me for a week, I'll listen to their crap. If they can't, they can shut the ... well you get the idea. Maybe shut up and give themselves 2 shots of water a week while I do my drugs.

Most of us have been real sick, some of us are feeling much better. The shots are no big deal, and they'll get easier as you start to get the positive affects. It is pretty easy to give the shot(s) to yourself when you think about how bad you felt before them.

It sounds so cliche, but RA has helped me become a better person. It would be difficult to notice because I started out so rotten, but overall, it has helped. Everything has the potential to improve you as a person, you just need to see it.

Get tough, take charge, and don't take any crap. And mostly, give yourself a break, you can't always be tough, and you should not beat yourself up during those times.

or do I owe someone an apology ... Craig

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/1/2006 8:19 AM (GMT -7)   
Wow, I want all of you who have been supporting bloo to know how absolutely beautiful your support is.
Bloo,
This is a real bad time....I know it.  I really empathize with what you're dealing with regarding the run around with your NP and MD.  One very IMPORTANT thing a good friend of mine told me:  " Erin you always come off as so HAPPY and you always smile & always seem to have enough in you to crack a joke even when your appendix ruptured & had peritonitis!...but YOU CAN'T when you're seeing your specialists and doctors.  Go in there with no makeup, show on your face the pain you feel in your joints and DON'T SMILE & be in BAD MOOD."   So I listened to him...and when I started to really "show" how bad I was the doctors got REAL AGRRSSSIVE REALLY QUICK.  NO BULLSH**.
 
That's the thing.  There is no drastically prevelent physical things that are objective in doctors eyes w/ RA and AI diseases unless they are in the late stages.  That's why we get so many times "Oh you look so good though."
 
Like Kris...it took me about 10 years to get TX for RA...and what a rough 10 years; I thought I wouldn't make it.
 
Personally, I got so disabled I had to just leave work. No 2 weeks notice....just had to leave.  I called SSI the same day.  Had a guy from general assistance come to my house for me to file GA & Medicaid. Waited for SSI / DIS.  Now in appeals for disability.  I cannot advise what to do, but I thought I'de share how I went about the whole work thing.
 
Elcamino, Camama, Craig, Kris & Yalinda you are such great assets here. Would not be the same without you.
Bloo, hang on.  You are in my prayers and we are all rooting for you.
We should give a shout out to StrayDog....Susie is very knowledgeable about the work and SSI dealings. 
In my prayers always,
Erin


Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.

Post Edited (erin kachmar) : 6/1/2006 9:40:48 AM (GMT-6)


babybloo
Regular Member


Date Joined Aug 2005
Total Posts : 289
   Posted 6/1/2006 3:05 PM (GMT -7)   
Thank you everyone. You have, are, so supportive. Just can't seem to smile today... the only thing worse than pain itself is the fear of pain returning... I just am not up for that at all right now. Love you all.

bloo
dx: Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
 
Meds: Indomethacin TID, Neurontin 600mg, Maxair, Advair 250/50, Diovan HCT 160mg/25mg QD, Synthroid .1mg QD, Women's One a Day,  Ultram PRN.
 
 

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