In response to my last rant the other night, I appreciated the support I received from you. It’s upsetting that people who aren’t sick can easily judge those who really ARE. Or they (meaning doctors, attorneys, or just plain ignorant folk) take my age into consideration and think, “well she’s young, so there shouldn’t be any excuses why she can’t handle a job.” Or she’s educated and there’s plenty of job avenues she could go down." I had a great job that I LOVED! And it was helping people that were sick. Some that were very sick. I’m a people person that would talk to the families, even when right after the doctors would speak a language to them that they didn’t understand. I basically broke it down to them in lingo that they would understand. Like this machine is doing this, these numbers mean that. I wasn’t a know-it-all. Hell, I learned something new everyday and I made mistakes. But I learned from them. But one thing no one could say about me is that I had poor bedside manner. I’ve treated all walks of life and everyone was treated with proper care and dignity. But I’ve noticed since I’ve been a patient that hasn’t been the case. I’ve gone thru numerous primary docs and now finally have a decent one. Plus my pain mgt doc and rheumo doc are advocates on my behalf. When I had my SSDI trial and that so-called expert doc was giving crap about my fibromyalgia and lupus, I felt like telling him, " I hope no one ever treats your loved ones in the same manner that you’ve just treated me." So again thank you my dear friends for your support and you are ALL in my thoughts in prayers
I totally emphathize with you Tommie, I really do…I know how hard people , even our own families or friends even coworkers can be on us, not understanding or shall I say refusing to understand how we really feel on the inside of our sickly bodies…We are being attacked in a way, we are victms within our own bodies, it is terrible. Our own immune systems take any tiny bit of stress, aggravation, cold/virus and turn it into a horrific flare that takes weeks to get relief from! Others just DON"T GET IT! Here, we all GET IT! We go to countless amounts of docotrs only to be given the runaround about how they can’t pinpoint what is wrong w/ us?! And then from week to week, month to month, their diagnosis’s change too? Why? Cause they are CLUELESS TOO!!! BUT, that isn’t our fault, we diidn’t ask for it, we aren’t “sob stories” or overexaggeraters. It is a non-stop frustrating experience we face all the time and it hurts both physically and mentally…The fact that you helped so many people and their families is a wonderful thing, you did what you could to make those peoples lives easier and better just by being a decent heartfelt person…Now u are the patient & you would probably love to have someone on the other side be like you were to you…JUST show SOME form of empathy, some form of care! We all get it one way or another, although our stories & lives aren’t exactly alike, we do know where you are coming from…Whether we are a stay at home Mom or a powerful executive, we are limited & it SUCKS! I am happy myself to have this group of awesome friends to “vent” to & know I am understood & not judged, as I am happy that you also feel the same! Have a Great Day & Hang in there! TTYL, {{HUGS}} Suzie :0)
Mornin’ Tommie,
The goodness and mercy and compassion you have shown to so many will not go unrewarded!
In spite of sounding like a fortune cookie, I really believe that our experiences count. You were not put in a helping field for nothing. What if this whole Lupus business is a training ground for your next outpouring of love and mercy? I wonder what it(the next phase) will look like.
HA! Cool saying! I had to google it. It’s gonna be a keeper.
Illegitimi non carborundum
annacai autoimmune said:
Illegitimi non carborundum
True, Very True Janice, I also wonder often “what will the next phase look like”? Supposedly our fate is determined for us, we simply follow the steps that are put right there before us, they change as quickly as the tide, but the thought of what is on the other side, keeps us in our faith~! We do not know what lies ahead, we just pray & HOPE for the best that’s yet to come…What is happening to us now, regardless of how unfortunate it may be is only going to make us stronger in the long run, I am a true believer of that…Although there are so many days I say, “OK that’s enough for now, I can’t bear to handle too much more”, we all have days like that…Wishing all of u the very BEST!! <3 Suzie 
janice said:
Mornin' Tommie,
The goodness and mercy and compassion you have shown to so many will not go unrewarded!
In spite of sounding like a fortune cookie, I really believe that our experiences count. You were not put in a helping field for nothing. What if this whole Lupus business is a training ground for your next outpouring of love and mercy? I wonder what it(the next phase) will look like.
oh and ps–i used to work in resp therapy! I admire you for being able to handle a high stress job like that. I loved working with the patients, but when it was a crisis I felt overwhelmed so i changed jobs. I have a behind the scene appreciation for resp therapists…even if they are not able to do that work anymore…you are brave.
Hi Tommie. I too understand where you’re coming from. I wa a caseworkr for Human services for 14 yyrs. I dealt with people on ssd and those trying to get ssd. It wa a long and hard process. It seemed like they were always denied the first few times and until I told them to supeana their drs. for hearings they seemed to keep losing. when I could not do my job anymore, i got up and walked into the co-ordinators office and told him I needed disability papers and his responce was mental or physical? I responded with both because I was in the middle of a Lupus flare and didn’t know it. My mind was in a fog, memory was gone and i hurt like crazy. All my co-workers said I would never get disability . I took my own advice and had drs go to bat for me, not just written reports. I was approved in 6 months time. I felt like going to the welfare office where I worked and show all the naysayers that they were wrong and heartless. Hang in there and lest I forget, I will be praying and thinking of you. Good luck and ahng in there.