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[sikora]

I've read through these posts and am very inspired by, and actually quite proud of all of you.

I think the worst things about my chronic illness, PBD, is how invisible and unacceptable it is.  As I have said elsewhere, once people know, you lose your right to a bad day. My psychiatrist told me this story:  One of her patients had surgery for something unrelated to depression.  In fact, this patient had been stable and happy for a year.  After the surgery, once back on the floor, she developed nausea.  Did the surgical floor staff follow standing post-op orders and treat the nausea?  No, they called psychiatry.  Two hours later, the psychiatrist came up, talked to the patient, and wrote an order to treat the nausea.  The patient felt better, got some sleep, got up and walked around some, spent the night, and went home the next day. Recovered nicely from the relativley minor surgery.

But that's a long time to let someone be nauseous when there are standing orders to treat it, written by the surgeon.  The psychiatrist was angry, because this kind of thing happens to her frequently, she said, at least 1 a month.

In the spring of 2006, when I was trying so hard to hold things together, I broke down in tears in front of my students.  That was a 10am class.  I had a 1pm, but at noon I went to a colleague's office and asked him to take me to the hospital. That was the end of the semester for me.  I feel very, very bad about it, and wonder all the time that if I just tried harder I could have made it to the summer, 4 weeks.  Dereliction of duty. 

I taught the next year, but in September the dean had come to my office and asked me if I was going to stay on for 2007-2008. The question was a big hint. Plus, I had used up all of my mental health benefits in my insurance.

[sikora]

Take a look at this

http://www.vnsdepression.com/pp10-286-articles_6-23-04-Normal-Is-a-Place-I-Visit.htm


I think it applies to all kinds of chronic illness

[lenniel]

Welcome, sikora and I think there is a lot of great strength and hope here.  Anon4now, you are an inspiration and I am sending good vibes your way every day.  Health is what you make it, and attitude is a huge part of getting better. 

I find that I am also happy and make better choices about how to live my life and what to do.  I have bad days - the last two weeks were bad, and it seems like this was universal! - but it always gets better.  Sometimes hearing myself say the bad things out loud, rant and act stupid is enough to jar me back into sensibility.  I used to never do that, and then wondered why I was miserable...:)

We all have to find peace with our bodies and psyche, even the so-called heathy folks. As my laconic other half puts it "we're all terminal" to some degree or other, and how we cope with the day to day challenge of simply existing is up to us.

I have to have some tests this week - postponed from May - and have almost cancelled them several times because I can't afford them.  On the other hand, I need to act like an adult and just do it.  They are necessary and the data may be very good; meaning I am going to remain healthier or that my disease is moving slower.  I hope so.  If not, at least I'll know.  The worst part is that I can't have coffee in the morning before the tests.  That sucks so hard.  I will be tired, crabby and just evil.  I have a friend dying of cancer so afterwards I am going to a prayer circle for him, so will need to recaffinate promptly.  I am grateful for this - by helping another, I always help myself.

How is everyone doing today? MsP - are you feeling more relaxed?  Kissa_mau, are you okay?

I think the other half wants to play tennis today.  I last played tennis 20 years ago, and as I recall, I really really sucked.  There will be a lot of swearing and wheezing!

[sikora]

I want a job.

I want a place to go.  I am right now in a coffee shop; where I am living is not a home, and I am uncomfortable around the guy I rent from.  He's hanging out all day, and so I came here, to be away from him.    He's not a bad guy, he's not going to hurt me, it's just uncomfortable. 

I hope the volunteer thing works out, because I need a place to to go.

[contemporary_]

Anon4now, you are an inspiration and I am sending good vibes your way every day.  Health is what you make it, and attitude is a huge part of getting better.

Delurking to say reading anon4now is one of the most rewarding parts of being on the fora.  Wishing you all ease and happiness.

[kissa_mau]

I think that when doctors don't want to deal with you, they pull the shrink card. I have been sent for a whack of psychiatric evaluations, to no end, and no diagnosis in that realm. I even had a neurologist tell me that my entire issue was due to being a neurotic woman. That was before my latest 3 diagnoses. He didn't even run any additional tests, despite really clear MS markers in my spinal fluid. Jerk.

My husband, who is a clinically depressed alcoholic, gets no psychological help because his doctor is an idiot. The doctor throws drugs at him and never follows up. My meds go through 4 doctors.

I think that anon4now is totally right about that view of health. I saw a health psychologist for a while and this is what he was always trying to get me to see. Everyone is only temporarily-abled. But I've got mad coping skills now. And I'm up to the 5 pound weights. And I can walk through half of a Super-Target. And I can climb TWO flights of stairs. And when things go crummy again, I can be glad about standing up for a minute without falling down.

A bit of an aside, but I love this t-shirt slogan: "My disabling chronic illness is more real than your imaginary medical experience."

[msparticularity]

"My disabling chronic illness is more real than your imaginary medical experience."

I love this! At the moment I have very decent medical care, and I particularly love my rheumatologist. One of the scary things about moving across the country is that I'm going to have to find new doctors.

On the invisibility thing - two of my friends with MS have said (at different times) that it actually made their lives easier when they began to need a cane, because it made their conditions visible. Both had all the usual hideous stuff going on - especially the fatigue - but people would make rude or thoughtless remarks when they would try to sit down as much as possible. With the cane, though, they are clearly "disabled" so it's acceptable for them to need to sit. Amazing!

I am just incredibly lucky, and I have really been feeling the reality of that recently. RA runs in my family, but it's very slow-moving, and I seem to be following the family pattern. I have some other complicating factors that interact with it (asthma, depression, joint damage from injuries, subclinical fibromyalgia), but on the whole I'm able to manage well enough to function pretty well most of the time.

That said, Sikora, I really resonated with what you said about losing the right to a bad day. I really liked the article you posted the link to, also.  I think that's what some of my angst was about above - I seem to feel okay about having a bad day, but when they just grind on for weeks I start to feel illegitimate somehow. And the depression is very much that way too - it's really only possible for someone else who has it to understand. People who have never had depression just immediately leap to the conclusion that I need different meds (a perspective I think is fed by the US having all this drug advertising).

So - Up in the air, Junior Birdmen!

[ms_turtle]

Sikora,
FWIT, I hear you. -- CB

[cyano]

Good things and bad things. I was finally starting to feel better and was thinking I might make it to the end of the school year without prednisone, then I got really sick last night. At lunch, a friend shared some rice with me and forgot that she had put barley in it. Gluten triggers the type of colitis I have. Miraculously, by tonight things seems to be settling down again and I will probably be ok teaching tomorrow.

Anyone have suggestions about teaching lectures with "digestive problems"? I'm afraid of having to leave the classroom suddenly. So far, not eating and taking enough medication has worked.

[paddington_bear]

Good things and bad things. I was finally starting to feel better and was thinking I might make it to the end of the school year without prednisone, then I got really sick last night. At lunch, a friend shared some rice with me and forgot that she had put barley in it. Gluten triggers the type of colitis I have. Miraculously, by tonight things seems to be settling down again and I will probably be ok teaching tomorrow.

Anyone have suggestions about teaching lectures with "digestive problems"? I'm afraid of having to leave the classroom suddenly. So far, not eating and taking enough medication has worked.

I've enjoyed reading these posts, although I haven't posted (at least I don't think I have!). I was diagnosed with ulcerative colitis about 7 years ago. Anyway, occasionally the thought of teaching for 50 minutes causes me to panic, but thankfully my colitis is more or less under control. When it's not, that's when "Read to yourself for a minute" or an in-class writing assignment comes in handy!  I try not to eat right before class, though. And to not go to class hungry, which seems to exacerbate my digestive issues.

paddington

[threadkiller]

Good things and bad things. I was finally starting to feel better and was thinking I might make it to the end of the school year without prednisone, then I got really sick last night. At lunch, a friend shared some rice with me and forgot that she had put barley in it. Gluten triggers the type of colitis I have. Miraculously, by tonight things seems to be settling down again and I will probably be ok teaching tomorrow.

Anyone have suggestions about teaching lectures with "digestive problems"? I'm afraid of having to leave the classroom suddenly. So far, not eating and taking enough medication has worked.

I've enjoyed reading these posts, although I haven't posted (at least I don't think I have!). I was diagnosed with ulcerative colitis about 7 years ago. Anyway, occasionally the thought of teaching for 50 minutes causes me to panic, but thankfully my colitis is more or less under control. When it's not, that's when "Read to yourself for a minute" or an in-class writing assignment comes in handy!  I try not to eat right before class, though. And to not go to class hungry, which seems to exacerbate my digestive issues.

paddington

I agree.  Can you do group work?  Or show a video?

My flares are so intense that I can't get out of bed.  Luckily they are brief and (knock on wood) relatively infrequent.  So I just cancel class--but obviously you can't do that too often.

[gourmetless]

Lenniel, Do the tests.  Study hard.

I think Anon is quite right about personal outlook and attitude.  It is quite easily to get dragged down emotionally.  Choose not to give into it.

Sorry about the UC flares, folks.  I have had great luck with Asacol.  It (mostly) protects me from outrageous flares.

[paddington_bear]

Lenniel, Do the tests.  Study hard.

I think Anon is quite right about personal outlook and attitude.  It is quite easily to get dragged down emotionally.  Choose not to give into it.

Sorry about the UC flares, folks.  I have had great luck with Asacol.  It (mostly) protects me from outrageous flares.

I'm on Asacol too. My doctor has tried to get me off it twice over the years, but it hasn't worked. I don't really have terrible flares, so things are really quite good.

paddington

[lenniel]

I am so grateful I don't have to worry about such flare-ups - I am so sorry and am glad there are at least some things that can be done.  I'm lucky I can hide most symptoms if need be (except for hacking up a lung), though I am NOT a morning person.  That may be personality.  I'm just evil in the morning, if efficient...

I've been having energy dips lately and reading how others have coped has been extremely helpful!

Tests coming up on Wed., so I am walking and we played tennis yesterday.  I suck, but it was a lot of fun.  The other half can play, but we made up additional rules when we couldn't remember the real ones.  (As if I every knew.)  I only got wheezy a few times and that was climbing the bloomin's stairs to the apartment, so I'm feeling pretty smug.

How's everyone today?  Does the weather impact how you feel at all? 

[gourmetless]

My gastro won't even try to take me off.  It's great stuff!!  UC, if controlled through meds, isn't so bad though.  Though in moments of flare, excruciating.  Luckily (or not), it is the least of my problems.

Funny story though: I was in the procedure room for a colonoscopy.  I had this terrific little old pakastani doctor for a while (loved him!).  He was pretty 'values' outspoken and conservative, which at first grated on my nerves, but then I found rather endearing.  Always telling me to get married, that he was worried about my emotional care since I was living in sin.  (Yes, I am exaggerating, a little)

Anyway, in the procedure room, and Doc says to me "You know, for some reason, pregnant women with UC, totally go into remission for the duration of their pregnancy."  I raised my head and said "Bring on the meds, then.... rather be doped up than have a baby."  The nurses, who apparently ribbed Doc constantly about his outspokenness, really appreciated this.

Good job going out and playing!!  It is necessary thing, even thoiuygh you might have to take a four hour nap afterwards.