We do need to talk about it much more etain. I fight those feelings all the time because if I give in to them I'm quickly drowning in self pity and that gets me nowhere except in an ever tighter downward spiral. You've got to accept your condition and situation, it is what it is, then you can begin to deal with improving your mental situation. The drugs we're given can also add to these feelings. To handle this intense inner feeling you describe I do two things: first I rub a couple of drops of Frankincense at the base of my skull where my spine enters it; if that doesn't completely make it where I can handle it I do something really strange and silly....I will go to youtube and watch an old SNL clip of Senator Al Frankin playing Stewart Smalley sitting in front of the mirror giving himself a pep talk "and doggone it, people like me". I'm clueless as to why the Frankin thing helps but it makes me smile and that seems to break the fall. I will tell you etain, you must get rid of the guilt, that is just someone else's expectations so shed it. The most important real estate in the world for you is the six inches between your ears. You are the only one that can control it....it can be tough to do but you can do it....you will do it.

Thank you, nonightshades. I remember those SNL skits! :)

Not even having a rheumatologist at the moment (and having a really hard time finding one that will see me) and having my dx in question is really compounding my stress, guilt, and depression. It was RA for a long time and it may still be RA and/or PsA and/or Lupus and/or some other connective tissue disease. Being seronegative without a definitive diagnosis and seeing a couple of dismissive doctors is not helping.

I also have a new boss and feel that I have less support and acceptance than I used to. There's an urgency to get my health under control or else. So I dread missing work. Guilt and the sense of loss are eating away at me. I can't do the the physical activities that used to keep me sane. I don't have hope for the future career options that I used to have. I don't even have much hope for my current job. I'm not being treated so I worry about the damage to my body. I fear disability and its emotional, financial, and social implications. I know that should be in therapy, but I also know from past experience that there's not a heck of a lot they can do for me. Getting in to see a doctor who will actually make an effort to diagnose and treat me, would go a long way ...

As it turned out, the fatigue was even worse than I realized yesterday. I slept in four hours, was awake for maybe one-two hours then shortly after writing that post, I fell asleep in my recliner and didn't stir for 5 hours. Woke up for a few hours and went right back to bed. Kind of nice actually, I haven't slept that well in a long time. But I came into work this morning and had people telling me how much they needed me yesterday. :(

Wow, so in addition to login issues, formatting is goofy. I had paragraphs separated by spaces and now it looks like one giant run-on ...

Indeed, the formatting sucks. My personal favorite is the webpage with the posts......in a huge size font. To read more you click and voila....there it is, in half size font. Then you go to reply, and it blows up in size again. Send your post and it's back to miniature size. Hey, I'm old, my eyesight isn't as good as it once was.....and then there's the matter of the detailed post in miniature size going clear across the screen. What, 40 words to a line? I'm sure this web page was designed by some 20 year old with no appreciation or respect for the impaired eyesight of older people.

But.....enough of that. Back on track.

This is an issue we don't talk much about and we should. Many of you know that I'm very well controlled on MTX and Humira and always claim to have my life back. And I do [compared to how it was for 15 years with MTX alone]. But I still have plenty of fatique. People still don't understand how/why I don't attend certain events. Clients don't understand why I severely limit trips to their offices. I'm sure they think I'm out sailing or something. The truth is that I have to ration my energy. I'm serious. I ration it. And then there are work deadlines.....it takes so much out of me. I keep telling myself I'll cut back.....and I actually have...but it's still not enough.

Still, I think I'm one of the luckier ones with this disease. And I credit that largely to a fabulous rheumatologist, great orthopedic surgeons, and Humira/MTX.

I no longer compare myself to others my age......how much they can do and I can't. It is what it is.

Etain, it's hard for me to review your other posts, but - if I may ask - what's holding you back from treatment? Seems to me that if you could get that, it would resolve a number of issues.

Also, why not call the Social Work department in your nearest major hospital and ask if there's a support group for people with chronic diseases. It just might help a bit. You mentioned therapy and that it didn't work.....but therapists need to be a good match with you......you might have to go through a few to get the right one. Try to find a cognitive behavioralist where you can learn some useful tools for coping, reducing anxiety, and changing your frame of reference.

I wish you well.
In the interim, I would sit down and discuss with your new boss your current limitations and that you're in the process of getting medical treatment that might take a while to kick in.

Another thing I'd like to add: sometimes the people you work with don't understand the disease and just simply don't know what to say to you......so they keep their distance, hoping you will open up a dialogue.

Just a thought.

I also have guilty feelings when I miss work. Its a really hard decision that has to be made first thing in the morning. I guess I base my decisions on the amount of pain I am in and how much sleep I lost. Once you make that decision to stay home then you have to make the phone call that you are not showing up that day. But I have come to the realization that I have to stay home on really bad days, because if I don't the next day after could be even worst due to lack of rest. But the guilt is still there. As nonightshade said, you have to take care of # 1 and the most important real estate is that 6 " between your ears . As I do get the guilt I really try my best to get over it and move on with my day. I sincerely hope that you are able to battle these feeling s as I think all of us have gone through them, could be work or missing a family get together or just about any social event that we used to never even give a second thought about going to.

Californialynn, I had a flaky rheumatologist who is moving towards naturopathy. She was very inconsistent from one appointment to the next and has a fragile ego. I was allergic to or intolerant of the DMARDs we tried. When I complained about back pain, she referred me to my orthopedist who referred me to a physiatry/pain management doc. The pain management doc took me off ibuprofen and put me on Indocin and Baclofen and that, combined with Imuran worked better than anything else we'd tried so far. She seemed really PO'd that I'd gone to pain management, then she told me, repeatedly and clearly that NSAIDs do not help inflammation and if they helped me, then there was no way that I have inflammatory arthritis. Her logic made no sense at all given my medical history and medications and, ya know, widely accepted medical knowledge. She was clearly off her rocker. She also seemed really perplexed by the pain in my spine, hips, knees, shoulders etc. Despite my 30+ year history of psoriasis, she never considered PsA. Despite the butterfly rash that does not present like rosacea, she never considered Lupus or Mixed Connective Tissue disease. She got really flustered and said she didn't have the skill to treat me. I agreed.



So I tried to get in to see a rheum that my pain management doc recommended, he rejected my referral repeatedly, claiming that I already have a rheumatologist, despite being told that was not the case. So they referred me to another guy, I had one visit, he was incredibly dismissive, barely examined me, wouldn't consider my medical history or the pictures of flaming red, swollen finger joints. He tried labeling me with fibromyalgia despite not having the symptoms of fibromyalgia. I do have the hallmark symptoms of RA and PsA and they are documented. I am working on a referral to yet another rheumatologist. Hoping he'll take me and live up to his reputation, but I'm not as optimistic as I used to be.


I find it incredibly stressful to be in limbo like this, especially because my health is putting my job and education in jeopardy and has rendered my personal life nonexistent. I have some other autoimmune stuff that's flaring right now too.


I agree, finding the right treatment, or even the promise of finding the right treatment, would make things so much better and I'm working on it. The rheum I'm trying to get in to see now has requested more records, so I'm taking care of it personally and I'm going to send him a nice letter explaining my situation as well as a concise timeline of diagnosis and symptoms, I hope that if I serve it up on a platter, he'll make the connections that the other rheums have failed to make.


The boss comes from healthcare and therefore thinks they know everything there is to know about RA. At times they are compassionate, at times, they are resentful because, to be perfectly frank, my poor health is adversely affecting them. In the workplace, most people are only compassionate to a point. When your problems start to become a problem for them, they are a lot less understanding. Human nature. Hints have been dropped that my boss and their boss would love to see me leave.

Etain11, try not to worry what you think others think! Easier said than done. I thought I had RA, l have a lot of symptoms, but it's not. So now I go back to feeling like a hypochondriac. But you know what, I know my body and whatever is wrong makes me different than other ppl and I have to listen to it if I want to get the best out of it. Try not to look for answers with your emotions. Pretend you are a scientist looking for the answer bc you know one is out there. Research and try different routines. Find what works for you. I'm still searching, some days are better than others. I try to keep hope even when I don't think it's there. Find a good dr that you trust, that's the 1st step. I'm fortunate to have good Dr's and Healthcare but right now, I can't seem to find a job. That makes me so depressed! But I will keep on truckin' and something will work out. Keep your chin up. And you are not a complainer...this is LIFE. There are others who have gone thru this and completely understand. We support and help each other. I may not feel good but I always have my ears and hear open to listen :)

I just read your last post... it can take awhile to find a good team. I've been very lucky to find excellent, caring drs. Keep looking and you are doing the right things: patient persistence and keeping good records. That shows the Dr that you are taking responsibility too. I keep notebooks with my info but most of the docs I see are within one unit so all the records are available within that network. I bring copies of test results to them if it's outside the network...

Etain, thanks for filling me in. Laurie is spot-on regarding finding the best rheumatologist you can. And sometimes we have to fire a number of them before we find the godsend. I think I fired 5. Now my big fear is that my wonderful rheumatologist might be thinking about retiring......

It's hard to keep up the good fight. But you must. Keeping records and timelines, I think, is an excellent way of documenting symptoms.

And remember......half of all doctors graduated at the bottom of the class. [Not very reassuring, is it?]

Etain, if you haven't had one, get tested for HLA-B27.....many people with PsA and 90-95% of all people with AS are positive.