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[biomancer]

Well, I am to be accommodated, and it is recognized that I have a disability. Why don't I feel like cheering?

Hey, it is good news, right? 

TZ has the right idea (as she so often does) - <hug>, and <offers a mug of dairy-free hot cocoa for you>

[gennimom]

Well, I am to be accommodated, and it is recognized that I have a disability. Why don't I feel like cheering?

Hey, it is good news, right? 

TZ has the right idea (as she so often does) - <hug>, and <offers a mug of dairy-free hot cocoa for you>

Thanks, TZ and Biomancer. It is good news, but I hate that I need it.
I figured one person in the family with that kind of problem was enough.

[ms_turtle]

Well, I am to be accommodated, and it is recognized that I have a disability. Why don't I feel like cheering?

Because you don't, and probably won't ever, have what you really want -- to be healthy and normal. Still it is a positive step forward and your disability has been recognized.


My vent of the day: all the people who think that you can pray away mental illness can just bite me.

[bibliothecula]

My vent of the day: all the people who think that you can pray away mental illness can just bite me.

Don't even get me started on this. People who do that make me want to become far more militant in my atheism than I already am.

[shambelle]

I'm slowly being attacked by my guts. Must be in a flare that the 6MP and the Remicade are having a hard time controlling. I'm going to give it another week before I call my GI doc - I think another time it took me 2 weeks after an infusion to get into a more stable pattern.

So it goes.

[msparticularity]

I'm slowly being attacked by my guts. Must be in a flare that the 6MP and the Remicade are having a hard time controlling. I'm going to give it another week before I call my GI doc - I think another time it took me 2 weeks after an infusion to get into a more stable pattern.

So it goes.

Shambelle, I'm so sorry that this is not resolving better. I'm sorry that I've lost track of this, but aside from the stress of the illness itself, do you have any other significant stressors in your life right now? I know from my own experience and from my doctors that this is just an enormous piece in autoimmune disorder management, and I have found that aggressively treating pain, anxiety and insomnia have been the keys to getting me out of flares.

[gennimom]

Okay, remind me again why I thought it would be a good idea to adjunct a course while working at a full time position? I'm praying I survive the semester!

[shambelle]

Hi, MsP.   :)

Stress is ever-present, but I really do a lot to keep it at bay. I also have an amazing staff and colleagues that can help me with work-related matters when necessary. One of my biggest stresses - how to pay a hospital bill that I don't have the money for - just got resolved today, so that will help a lot as well.

I think so many of us try to manage our stress... and I know I fail pretty miserably at times.   :)

You said managing pain is important - and I took a step to try and get that taken care of. I finally pulled a string with someone I know to get me an appointment with a pain doctor. I've had enough; the constant pain is probably a huge contributing factor. I'm worried that I'm going to be on very - and I mean VERY - long term narcotics after this appointment, but I guess I actually really need it.

As an aside, are any of you on continuous narcotics, or other sorts of constant pain control? If so, what have your experiences been and if you don't mind sharing, what medications do you take?

I'm slowly being attacked by my guts. Must be in a flare that the 6MP and the Remicade are having a hard time controlling. I'm going to give it another week before I call my GI doc - I think another time it took me 2 weeks after an infusion to get into a more stable pattern.

So it goes.

Shambelle, I'm so sorry that this is not resolving better. I'm sorry that I've lost track of this, but aside from the stress of the illness itself, do you have any other significant stressors in your life right now? I know from my own experience and from my doctors that this is just an enormous piece in autoimmune disorder management, and I have found that aggressively treating pain, anxiety and insomnia have been the keys to getting me out of flares.

[gennimom]

I'll be following this as well, Shambelle, as apparently long term pain treatment is in my future. I don't think my current medication would help you as it is a seizure medication, but I'm taking a muscle relaxer to sleep. As my illness progresses, I may need narcotics later. I'm hoping to avoid oxycodone and oxycontin, which seem to be the most common pain relievers for people in my place.

*sigh*

[lenniel]

Just a quick check in, since I'm on the road for the week.

Gennimom, glad you will get some accommodation!  This is good, but still doesn't change the overall crappiness of what you have to go through.  Thinking about you and we are always here for you.

Glad you doing okay, biomancer, though the breaking cyst thing sounds unpleasant.  Is the medication helping?

Shambelle, I hope they get the pain under control for you, soon. 

How are you, ms_p and bibliothecula? Need some nagging for the rheumatologist?

Thank you, all for the support - I really appreciate it.  I sat down with the Other Half and told him of my concerns, and he's going to discuss some treatment options with his doctor.  He'd already been thinking about it, and I am hopeful he'll follow through.  My job still sucks, but hey, that's only part-time and they will pay me sometimes.  On the good side, I passed my comps with flying colors (so they say), and this is good!  I was a total wreck.  Now, I am a brain-fried wreck.  The next challenge is coping with allergies at home (mom has long-haired cats. 'nuff said) and preparing for some concertizing. 

Hope everyone is staying healthy and taking care this weekend!

[msparticularity]

Hi everyone -

Lenniel, I hope you survive the kitties this week!

And Shambelle and GM, I am actually struggling right now--although not in a full-on flair--because I have run out of a couple of my meds and haven't found a new doctor. In addition to the joint pain I also get muscle spams, so I have taken Flexeril on and off for years, which does also help with sleep. I have also taken Lunesta occasionally for sleeplessness. In the past 18 months I have taken Tramadol a couple of times a week on top of the 600-800 mg ibuprofen I almost always take at night. (I have also taken Vicodin from time to time.) I usually need one or the other 2-3 nights out of the week, and I try to alternate around among these so I don't develop a tolerance and start needing escalating dosages.

All of this is pretty well within the guidelines for RA and quite uncontroversial, but the not-great rheumy I was seeing last year was only comfortable with occasionally refilling the Tramadol. I still have a couple of months' worth of the Flexeril, but I've run out of both Tramadol and Lunesta, so I'm not sleeping well at the moment, and the pain is far more constant than I can really cope well with. It's more along the lines of a low grinding annoyance than an acute issue, but it wears, you know?  Just being relatively pain-free for a night or two a week turned out to be pretty important to my well-being, and I've found I really miss it.

Happy Friday to all! Also best wishes that all of us can find the care the the meds we need!

[gennimom]

Oh, MsP! A plague on doctors who don't believe in pain meds! Here's hoping you get some relief SOON!

[shambelle]

Broke down and finally decided it's time to see someone in the Pain Clinic. I have an appointment for next Tuesday. This doctor won't give me anything for the pain - we're just going to talk - but I need some perspective and idea of where this can go, how it can go wrong, and what the management options are for someone like me. Then, it looks like my surgeon will end up having to manage the actual medication since the pain is related to my operations.

We'll see....

Hope everyone is doing well.   :)

[msparticularity]

Broke down and finally decided it's time to see someone in the Pain Clinic. I have an appointment for next Tuesday. This doctor won't give me anything for the pain - we're just going to talk - but I need some perspective and idea of where this can go, how it can go wrong, and what the management options are for someone like me. Then, it looks like my surgeon will end up having to manage the actual medication since the pain is related to my operations.

We'll see....

Hope everyone is doing well.   :)

Shambelle, I hope this goes well for you! Medicine is so schizophrenic on the subject of pain management, it's just insane. On the one hand we have practitioners prescribing boatloads of Vicodin to addicts--and on the other side we have entire categories of patients who are clearly receiving medical care that is inadequate in terms of pain management, as demonstrated in study after study. And still no clear guidelines for practice that are followed consistently for those of us with significant and ongoing pain issues. :(

[ms_turtle]

Broke down and finally decided it's time to see someone in the Pain Clinic. I have an appointment for next Tuesday. This doctor won't give me anything for the pain - we're just going to talk - but I need some perspective and idea of where this can go, how it can go wrong, and what the management options are for someone like me. Then, it looks like my surgeon will end up having to manage the actual medication since the pain is related to my operations.

We'll see....

Hope everyone is doing well.   :)

Shambelle, I hope this goes well for you!

Me too.


In other developments, I have an appointment this afternoon with a new psychiatrist. My check up with the sleep doctor last Friday was odd. He doesn't think that melatonin can cause bad dreams. Oh hmmm, so the fact that the only thing that I change about my sleep habits is that I take the melatonin and the only significant thing that happens is that I start wigging out on bad dreams doesn't mean anything to him? I must have given him, not intentionally I might add, "the look" that I am known for giving students. He quickly clarified by stating, that he doesn't think that was impossible but he doesn't have experience with that happening.

We also had the conversation that I told my therapist I was dreading. Part of the sleep diary was that you had to record your stresses, moods, etc. twice for each day for six weeks. It doesn't take but 4 or 5 days to realize, "Yes. Get a clue! I have depression!" So, even though he has had bits and pieces of my history as related to a list of medications that I state when I have a semi-annual checkup, I gave him the abridged version (which still takes a good 15 minutes) of my history, the variety of meds, and what happened with the last psychiatrist. We talk about options and a newer psychiatrist in town and that guy's philosophy. I then get the statement that I hear too frequently, "There isn't anything more I can help you with."

I agreed to the consult with the new psychiatrist only because I don't think any patient with any condition should close the door on a different perspective. I don't want to, and will not, start chasing the next pill again. I'll listen and we'll see.