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[threadkiller]

This post could be entitled "when threads collide, " ha ha!

Anyway, I am in my late thirties and we have been trying for awhile to get pregnant.  I had been very optimistic b/c the Crohn's has been in remission.  We finally went in for testing and it looks like I am not ovulating.

The point of this post is not for fertility advice (although that would be welcome as well.) :-)  It is more that the diagnosis reminded me of when I got my Crohn's diagnosis.  Part relief, to know there actually is a problem and it is not in my head, but also intense anger. 

I have, shall we say, control issues, and not being able to control my body really upsets me.  I can do everything "right" and still get a flare up. And the flare-ups come at the worst possible times. The disease really clashes with my self-image of being healthy, hard-working and successful!

[note--I know this is not rational.]

Any thoughts about dealing with the emotional baggage surrounding having a chronic disease?

[elsie]

I used to think of it as a civil war, but now I'm more at peace. I'll have to think about why and post more later.

[hegemony]

One of my professors when I was an undergraduate has a chronic illness.  She never got a clear diagnosis, but it became increasingly incapacitating, so much so that she struggled on for years with all kinds of artificial aids, and finally had to take early retirement.  Yet she is unbelievably resilient.  When my chronic illness developed, I asked her how to cope, and she said, "Compare yourself to people in your peer group who are worse off."  She had come to that conclusion by herself, but I later read some research that said the same thing.  And when I can focus myself to do it, I am reminded of how much worse things could be!  I remember Christopher Reeve saying that he didn't understand how people who could walk and move on their own could let anything stop them.

[tenured_feminist]

Sorry to see I'm not the only one struggling with allergies. I thought I had an absolute killer cold, but saw an ENT today who diagnosed allergies. About the only up side to this is that I don't have to do any more lectures.

Does anyone else find that despite the "no side effects!" propaganda for the newer allergy drugs, you still get a bit muddled when you take them? I find it really hard to focus and concentrate well enough to write when I am on claritin or allegra. And one freaking benadryl knocks me out.

[lenniel]

Threadkiller, I wish you luck in getting pregnant! Alas, I have no advice except that the group effort is, at least, very nice...:)  One of the toughest parts about having an illness I have found is that I just can't be cheerful about it all the time.  When I was first diagnosed, I went through a lot of grief stages, and then settled on denial, and then got to acceptance.  I find that I am unafraid of death and comfortable with knowing it will be sooner, rather than later.  What I struggle with is the fear of incapacity, of slowly getting worse and seeing myself transform into an invalid.  This is not necessarily going to happen, but I have seen too many people deteriorate to illness, cancer, dementia, not to have some fear.

What has helped, though, is to allow myself to experience the fear, and play the "worst case scenario game" in order to confront my fears vs. reality.  So, I start with "What if I can't walk without oxygen and then become 400 pounds on the couch?"  then I examine that with "Do you really think that can happen?  Why?" and defuse the fear, or see it and move on.  Usually the questions get silly and I put myself in a better mood.  I also force myself to see all ends of the situation: okay, I'm going to die.  Whatever.  Or, I might go into remission, and will have a number of years that will be good.  Or they will find a treatment other than lung transplants and so forth.  (Oddly, I don't want the transplant option.  I'm getting older and figure some kid can use those lungs far longer than me.)

Most of the time, I feel okay and being a control freak, myself, I have to remind myself that I can't control this.  What I can control is how I cope, and it has been helpful in getting me to admit to various feelings, talk more, be honest and make better decisions.  My family is fragile, in some ways, so I avoid talking to them about it unless necessary.  My better half is a realist, and he says stuff like "ah, shut up and go for a walk.  You're not dead yet." so I get jolted out of my pity party.  And go for the walk, grateful I still can.

Lately, I've been having some bad days and looking at tests that will tell me how bad (or not!) I have gotten.   However, as elsie put it, this is my body and I need to live in it, now, and take it as it comes.  It is, though, okay to get angry, sad, etc. on occasion, as long as you don't let yourself live there too long.  The emotion is fine until it becomes a reason unto itself.

As for allergies, T-F, they suck and all the medications seem to make me either stupid, sleepy, paranoid or hostile.  I can't take them when teaching, much to the delight of my students, as I have zero impulse control  under the influence and will say just about anything in class.  Claritin and knock offs are the best, as is Allegra.  I take the cheap version of Bendryl at night when extra snoggy and it knocks me out.  The best thing for me is to not take anything until absolutely necessary, and be prepared for minor weirdness under the influence.  If I have to work in the garden, clean or mow the lawn, I take some meds and the work over-rides the effect.  My allergies are seasonal, so tend to diminish as the summer progresses.

Geez, enough about me, already!  How is everyone else?  All of you finishing up, doing okay? It's Friday! 

[shambelle]

<delurk>

I am an undiagnosed, likely to be Crohn's patient (I've posted elsewhere why we can't confirm it yet - recovering from surgery, still), and I am having a horrific flare up of a day. I am finding myself thankful for the long weekend (even though I have to come into my lab), and even more thankful that my campus is relatively empty right now.

I'm also thankful every day that I'm here, because so many others have problems much worse then mine. But days like today try to not-so-gently remind me that I need to chill out and eat better. I have yet to figure out what all my triggers are, but sometimes, I should know better. Then again, sometimes, there's no predicting what's going to happen.

I feel like I'm 130 instead of 30. Oy.

My best to everyone else as we all march forward...  :)

</delurk>

[iomhaigh]

TF, have they tried you on the nasal corticosteroids?  I would keep trying meds until you find one (it took me three or four, and I refuse to switch to the newer ones because the old ones are fine).   The nasal sprays may have fewer side effects -- I can't remember. 

[groundhog]

Sorry to see I'm not the only one struggling with allergies. I thought I had an absolute killer cold, but saw an ENT today who diagnosed allergies. About the only up side to this is that I don't have to do any more lectures.

Does anyone else find that despite the "no side effects!" propaganda for the newer allergy drugs, you still get a bit muddled when you take them? I find it really hard to focus and concentrate well enough to write when I am on claritin or allegra. And one freaking benadryl knocks me out.

Luckily I can take Claritin and Zyrtec, but they don't cover everything.  The nasal steroids don't help me (except when I have a sinus infection) but NASALCROM nasal spray helps tremendously.  It's now over the counter, but it was prescribed for me when I was pregnant, so it's really safe.  It doesn't get into the bloodstream (or very little, hence its use when I was pregnant. 

Good luck! 

[tenured_feminist]

They were just prescribed -- I will give a try today. Thanks, all!

(Choke, cough, gasp.)

[gourmetless]

How's everyone feeling? 

I just got back from visiting partner and family yesterday.  My body is protesting vigorously.  Part of it is the six hour drive.  Part is my getting used to sleeping on a heated waterbed again (ah, rapture), and then coming back to my full-sized mattress.

The car is about half unloaded.  I do it gradually, so I don't overwhelm myself.

Tomorrow, headed back to the office for some inspired work.  I think my body can handle the chair again!

[lenniel]

Welcome back, gourmetless! Glad the trip went well - reentry can be tough...:)  I have to head off to my summer place of work soon and am not relishing the long drive.  The body takes a beating, even when sitting still.  Always a mystery to me why this is!

I've been overdoing it, mostly out of boredom, but soon will be back in a schedule so I will have to take better care.

How is everyone else?

[msparticularity]

I did the looong drive thing, too. We did the 9-10 hour trip to and from Palm Springs in order to spend some time with the in-laws before we move to the Midwest in a few weeks. Also we swung through LA to see some other family members. After the better part of two days in bed, I'm feeling closer to human again.

[kissa_mau]

I feel like crap. Made it home and crashed into the wall, and then the counter, and then the desk, and then the floor. BUT, I did make it through the day and got my stuff done.

Last week was really stressful, so I'm thinking this is the payback. That and these crap allergies. I've been doing zyrtec this year, with benadryl at night. Allegra-D is amazing stuff, but I can't take it for long... that and my doctor hates prescribing it for some reason or another. I'll have to trust his judgment since he tends to be right about what's actually good for me.

I guess everyone here has been up to car trips :) I've just been doing my normal thing, but being able to work a few extra days from home is always nice!

[msparticularity]

I have, shall we say, control issues, and not being able to control my body really upsets me.  I can do everything "right" and still get a flare up. And the flare-ups come at the worst possible times. The disease really clashes with my self-image of being healthy, hard-working and successful!

[note--I know this is not rational.]

Any thoughts about dealing with the emotional baggage surrounding having a chronic disease?

Yeah, I keep falling for the dynamic where I get "a little run down," so I throttle back and take it easier for a couple of days. Then, I apparently think I ought to be all better!

I sat in my rheumatologist's office yesterday morning and listened to myself tell her what kind of a spring semester I'd had (normal teaching and travel, plus job search and travel for campus interviews, and now getting ready to move), it was like "Well, duh!"

And then I listened to myself telling her about the fact that I've had to go back on inhaled steroids for my asthma (because my insurance decided to quit covering my alternative meds), and how poorly I tolerate them, so I'm having headaches, fatigue, constant spotting, and so on...

So, okay - I've had a really cr@ppy couple of months! And I'm just now - after devoting a lot of time to just good diet, exercise, and sleep - beginning to feel slightly human again!! And now - argh! - I have to get ready to move (not to mention prepping for two new graduate courses)!!!

Okay, back to coping now ;)

[anon4now]

I have, shall we say, control issues, and not being able to control my body really upsets me.  I can do everything "right" and still get a flare up. And the flare-ups come at the worst possible times. The disease really clashes with my self-image of being healthy, hard-working and successful!

[note--I know this is not rational.]

Any thoughts about dealing with the emotional baggage surrounding having a chronic disease?

Hi, threadkiller, and all,
Lots of thoughts on this, but not sure how much it will help. Individuals differ so much on how to get through things. The trick for me is holding both things in my head at once: both my strength and my condition.  I am hardworking, successful, strong, capable, and yes (in a way not recognizable by most common measures), healthy. I also have a serious and progressively debilatating disease that we all know will eventually bring me down (like those horrible slo-mo films of safaris in the 50s taking down elephants, ha). So, yeah, in a strange way, I am healthy, with each breath in and with each breath out; I am healthy when they put the IV in me and when they take it out. I am healthy using my cane and when need arises, I am healthy in my wheelchair.  To me "healthy" has come to mean not some perfect condition of physical fitness---an illusion anyway, that most people cling to so as to deny their own mortality---instead it means looking up and out and doing the best with whatever that day's condition happens to be.  I am healthy in my hospital bed when I crack a little joke with the nurse who comes to change the tube dressing.  To me it means I am present and working well with what I've got---managing, hanging in, staying steady, keeping perspective.  Yes.  (Ditto for all those other things you listed--hardworking, successful. Redefine your terms; other people's definitions won't work now.)

Does this suck? You betcha. Do I miss that illusion of perfect physcial condition? I was an athlete; you bet I do. One of the tricks for me is to accept what is, in all its ickiness, to really really accept it as part of me, not something to be banished or ashamed of or struggled against, but something to work with, to dance with, something to know. This is hard. I don't have to like it all the time, though sometimes it can be wierdly satisfying; separate the attitude to it from the thing itslef and observe both closely.

Something that always helps me: I refuse to give this disease any more of my life than it is already going to get. That means thinking wisely about it and taking very good care of myself, but not dwelling on it (a fine line).  Thoughtful and attentive to it, and accepting of it, but not making it the center of me. Nor the center of any conversation, or any journal entry, or any day.  Even in the hospital when it seems to be taking up a a lot of my mental space, I make it a point to keep saying/thinking to myself, "OK, yes, anon4now, we know you have this thing and are getting treatment; what else?  What else is going on in life? There is stuff of interest all around---let's focus attention on that." I like those moments when I get bored with this disease, and turn my head and heart to something outside it. Keep your attn on all the other stuff that is still interesting and good in your life---and there is plenty; don't turn yourself over to it. 

Now, dealing with other people about it is much harder for me. But once the inner stuff is steady and good, even that part gets a little easier.

One of the lessons gifts in this for me has been that I once was a control freak and am now nearly healed of that.  I cannot control the Tcells and leukocytes and neural transmitters and CPK and creatinine and so on. Even the best rheumatologist in the world cannot. I can do everything "right" and end up in the hospital with a flare. So another approach is required; I got the gift of learning other ways to be in the world. Healthier!

Another thing that helps me is to remember that everyone else, those "healthy" folks, also have something that will kill them off in some way; they just don't know it, whereas I have a head start on, and more awareness of, and actually a closer & deeper relationship to, what is in fact the human condition.   

Oh there's more (I have been working with this for over a decade) but I hope that helps.  I am not all that cheery about it--let's face it, this is not cheery---but I am a happy person, a truly happy person. Big diff. And I think I'm happier overall now than before diagnosis, oddly enough; or happy in a more grounded and real way. Good luck to us all!