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[gennimom]

Dang, too late to edit my last post. I just remembered one good thing: My carbamazapine will have a generic version next month. The pharmacist said she would make sure to order some for me!

[biomancer]

...

Namazu:  how long do you teach each day?  I've done the 5/week thing most semesters but usually I have at least 2 days where I only have one lecture class, or two sections of the same course, so those days aren't quite so overwhelming.  Anyway, plan out your day as much as you can and have some "down time" where-ever you can fit it in.

I think that was Bibliothecula with the new, unwelcome teaching schedule.
...

Oops!  Sorry, Bibliothecula!  That's what I get for Posting While Uncaffeinated.

[lenniel]

Ms_turtle, I agree with the wisdom here that melatonin will give you strange dreams.  I also took it for awhile and it helped, sort of, but the dreams were more vivid than usual.  That being said, I always have anxiety dreams - last night, I dreamed I was late to teach my students because I was helping my mother (who is disabled) through the snow while dressed in a giant bunny suit.  I woke up convinced this all happened, and was greatly relieved that it hadn't.  I'm not sure what was more distressing, being late, or the bunny suit.  My dreams always take the form of being late or traveling incredible distances only to not get there in time.  Yay.

Gennimom, I'm so sorry about your situation, and maybe we can be a support group in the meantime?  To be honest, the only way I cope with anything is helping others and listening, so in a way, you would be helping us, too. 

Other than sheer cussedness, bibliothecula, I have no idea how I cope with heavy schedules.  Basically, I always schedule time off into the day and week and keep close tabs on everything I do so I make sure I don't lose track.  I also try to get some exercise for stress relief when I can, and bag it when I can't cope or feel rotten.  Permission to rest is one of the most important skills we can learn, as it also implies forgiveness of human weakness.  In our society, we view all disease and disability as weakness, even though it is a fundamental part of the human condition.  I'm sure others here will have more wisdom on these matters than me.

I hope you are feeling okay, biomancer, despite the cysts?  Is the new medication doing anything helpful, or is it too soon to tell?

How are you, shambelle and see_wolf?

Is the asthma better today, namazu? 

I woke up with lots of back pain and the beginnings of a cold.  Probably a side effect of romping in the snow in the bunny suit. (see above)  Or sleeping with restless cats and human male.  Almost strangled them all this morning.

I've also been experiencing a certain amount of chest tightness that I am deciding is stress and anxiety.  It's not my heart (that is healthy, thank goodness), but I have been under a lot of stress lately.  My other half has also been extra depressed lately, and I will be engaging in the battle to have him consider antidepressants.  He was on a variation of them recently for a different condition and did okay, but the changes in his job have made him retreat.  He's in that "the world hates me so why bother" place, and I react by going intothe "maybe if I try to be perfect I can make him better" mode.  This means that on top of my regular work (dissertation, getting ready for comps, research projects, helping family and friends, lessons) and part-time day job that can't afford to pay me, I am cleaning, shopping for food and necessities, and cooking every night. 

Well, I guess that explains the chest tightness...:)

Any words of wisdom?  Having suffered from depression, etc. myself, I know how hard it is to pull out and to hear suggestions of help, but I need to get more pro-active.  He also smokes and the cough he has decided is due to "allergies or post-nasal drip" is really pre-emphasema (sp?).  I know the sound because I lost a few people to the disease.

Does that popcorn comes with quaaludes and beer??  Thanks for listening, all...sorry for the pathetic digression. 

Stay healthy, and, as we say in Arabic, insha'allah, we'll make it through the day!

[gennimom]

Oh, man, Lenniel, that sounds rough. I don't have quite your experiences, but with GD having trouble finding a job, I worry about him as well. There are times I wish he could find a job that pays as well as or better than mine so I could quit. Being the breadwinner on top of everything else is not helping.

I appreciate you all listening to my complaints and whines, I really do. I'm just wishing I could find some people suffering this illness so I could find out what to expect. The literature is singularly unhelpful. It just says the "long term prognosis is unknown." I don't know if it gets to a point and levels off or keeps going until the patient is bedridden. Or somewhere in between. That was mainly my complaint last night. With most illnesses people have vented about on here, you know what is most likely going to happen. I can't find out anything. I know what the symptoms are, but not how severe they may get. This REALLY sucks.

So I'll vent on here about the illness in general, and keep wishing for more information in specific. And keep searching for help from someone who might know. I'm so tired.

[bibliothecula]

Thanks, biomancer and lenniel. I was having a bit of a freak-out, there. Luckily the T&Th classes are in the afternoons, so I can sleep in a bit, and the MWFs are early enough that I can still swim at lunchtime and rest afterwards a bit.

Lenniel, when I find myself in your situation I say to hell with all but the most important errands and to-dos and get take-away or do very easy meals until things are more normal again. Meanwhile, can you make an appt with your SO's doctor and accompany him to it, to make sure he goes? If you couch the situation in terms of that it is hurting your relationship, will that spur him into action?

Namazu, I hope you feel better soon.

GM, I don't know what to say other than I hope you and your doctor can find out more, and soon.

[gennimom]

Well, after all that complaining, I found a site that has threads for different issues, and there is one thread on Isaac's that has over a thousand posts on it. All I've been able to do is skim some of the posts, but I've found people who are going through something similar. That is great. What is not so great is the outlook. I wanted to know, but some of these people are in bad shape. We'll have to see as I try to read more.

*sigh*

[msparticularity]

Wow, such a difficult week for so many of our little community.

GM, I think many of us really identify with the whole lack-of-prognosis thing since autoimmune disorders are just so unpredictable. You, however, have an even worse situation since there's much, much less information out there on Isaac's. And that uncertainty, combined with the constant physical pain and the pain in the a$$ that your boss has got to be just about more than even the best Dr. Pepper can medicate!

And I totally identify with the spouse concerns, too, Lenniel and GM. MrP has an autoimmune disorder also, and (like me) a history of depression and anxiety. He's been pretty stable for years now, but I worry that he's too isolated since we moved, since he's not working outside the home right now. Aside from the anxiety of being the sole wage earner, I get afraid that he'll deteriorate physically and/or mentally. 

Namazu, how are you doing? If you're still having difficulty breathing and there's any chance you have the flu you should go straight to the ER if your doctor can't see you! The swine flu is generally not a big deal, but it is dangerous for those with respiratory conditions.

Bibliothecula, I'd be freaking out if I had to teach on all five days, too--but it sounds like the schedule itself isn't actually too bad. I agree that prioritizing self-care is just crucial, especially rest, food and exercise. I've learned in recent years that I just can't skimp on any of those any more--at all.

And related to that...Ms_T, I hope you're able to get some help on the sleep stuff, and my experience with melatonin wasn't great in terms of sleep quality, either. I have no idea if this is any comfort, but my experience was that a lot of the exhaustion-related stuff got better as my daughter got older. This was because it became much more possible to do things like take a nap in the early evening when I was just completely worn out. I also know that my own sense of being unable to cope with the physical and emotional stuff gets the most out of control when I'm tired, so I could identify with your sense that no one else could handle your problems and you'd be stuck with them.

Biomancer--how are things with you? You're taking care of the rest of us, but how about yourself? I hope you're enjoying a happy Friday evening, too!

[biomancer]

I can't complain much.  The cysts are still there but they're not as painful as they were last week (though I think I am to some extent just getting used to having pain there).  The asthma seems to be under control with the medication (singulair, I think?) so I have no complaints there.  I seem to be having a bit of allergies today - my nose is drippy, but I don't have any other symptoms to make me believe that it's a cold or flu, so it's not too bad.  It's chilly and raining so my joints are singing a little bit, but I'm keeping warm and I don't have to walk Biopup in this weather as she's been playing with NeighborPup in the backyard.  (I do have to get the muddy pawprints out of the carpet, though.)  Spending an evening on the couch, cuddling with my dog and getting kibble-flavored kisses, is a pretty standard Friday night at Chez Bio.  Life's pretty good at the moment.

I hope the weekend brings everyone some much-needed rest and recuperation!

[gennimom]

You guys help keep me grounded in the fact that while I have Isaac's, I'm not the only one going through a tough time with a chronic illness. It helps keep me from driving GD crazy with "nobody understands me!" I've got a meeting next week where hopefully I can get it through people's heads that this condition is real and it is serious. And it ain't getting better.

Thanks for being there for me and for all of us, each of you!

[msparticularity]

You guys help keep me grounded in the fact that while I have Isaac's, I'm not the only one going through a tough time with a chronic illness. It helps keep me from driving GD crazy with "nobody understands me!" I've got a meeting next week where hopefully I can get it through people's heads that this condition is real and it is serious. And it ain't getting better.

Thanks for being there for me and for all of us, each of you!

I also had a couple of years of sheer He!!, trying to figure out what was going on while nearly unable to function at all, getting a series of non-diagnoses, and then trying to figure out what to do once things began to get (a bit) clearer. Somewhere in all of this, I also began to pay a lot of attention to diet, rest and exercise, and finally found medical people who would help me with the symptomatic stuff that got in the way of those. Even though I'm doing a lot of griping right now because I'm struggling with finding help on the symptoms again, I'm still much more stable than I was a few years ago. I think it's because I had to learn to know my "new" body, and I've gotten better at that over time. From what others have said here, I'm thinking that this trajectory has been shared by a lot of us.

So, I hope your meeting goes well next week, and also that you begin to find some things that work for you--even if the MDs don't get it! :)

[gennimom]

Well, I have one MD that gets it: My GP. He is the one that suggested the Isaac's, after all. From what I've read on the forum I discovered, that is half the battle. I dread moving to some other place if I can't find a doc that also believes me.

I feel like I achieved a great victory today. I can talk about my twitching all I want. It doesn't do it on command and half the time I don't think people believe me. Well, a muscle in my shoulder started twitching and I grabbed GD's hand and placed it on the twitch. He was, "What the h*** was that?" When I told him it was a twitch, he finally got it personally. He understood it in a theoretical sense, but now he knows what I feel in a way he didn't before. Phew!

[msparticularity]

Okay, GM I'm had the weirdest experience today. My mom called and was telling me all about the strange symptoms my cousin is having: numbness, massive and debilitating exhaustion, pain, spasms and twitching in his muscles, and so on. I had heard about some of this a couple of weeks ago--the numbness and exhaustion--and we were all afraid he had MS and/or ALS. So, on Friday he had his appointment with the neurologist, which ended up taking all afternoon. Basically, the neurologist has now eliminated everything that his primary doctor had thought it might be and says he has no idea at all. And my mom just told me about the twitching and pain and spasms.

I sent them the link to the NIH site on Isaac's. It will just be friggin' unbelievable if that's what he has, and if I recognized it purely by chance because of you. Wow.

[gennimom]

MsP, after what I've learned on my other forum, if it is what he has and the doctor goes for it, he'll have one of the shortest times from onset to diagnosis of most of the people who have it. Which is a very good thing. If I have helped someone else just by talking about it here, that's great! Sorry that he has it, but figuring out what will help can get underway sooner.

[gennimom]

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

[tinyzombie]

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

HUG.