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Discussion Boards => Reactions & Stories => Topic started by: Ciel on April 02, 2012, 06:41:29 PM

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Title: Picking up the pieces after a serious reaction
Post by: Ciel on April 02, 2012, 06:41:29 PM
Easter is fast approaching, which marks one year since my wildly mishandled and extremely scary anaphylactic reaction that was the result of eating at my aunt's house last year. I have seriously struggled with eating and anxiety since and Easter coming up next week has thrown me into an emotional tailspin. I am struggling with other very weighty personal stresses as it is; the added anxiety and uninvited flashes of memory make coping that much more difficult. How do others deal with things like this? Or am I the only one to feel this way this far out from a reaction?

Title: Re: Picking up the pieces after a serious reaction
Post by: Mezzo on April 02, 2012, 09:38:12 PM
I don't know if this will help you, but my DD's most serious reaction was also on Easter, years ago. It was anxiety producing to come up to that holiday the next year. It has faded. But I think it's human nature to feel that more intensely as you come up on the anniversary. 

I'm sorry you're going through that. :( :grouphug:
Title: Re: Picking up the pieces after a serious reaction
Post by: CMdeux on April 03, 2012, 01:28:53 AM
It has been 12 years this May 5th since DD almost died as a baby, and I can relive every single instant of that morning as though it were still happening to me.

Does that tell you anything?   :hiding:

No, it very definitely is NOT just you.  DD is two years out from her last really big reaction, but the circumstances are similarly cyclic and there is no way that she is "over" it either.  It's an annual event that she at one time was crazy about, and now is deeply ambivalent towards.  Uneasy or unsettled, I think.

She has changed her approach to things and that seems to help her to be internally reassured that "it can't happen like that again" because she has done X, Y, and Z now.  KWIM?  But will it ever just be "fun" again?  I don't think so. 

 :grouphug:  I'm sorry. 
Title: Re: Picking up the pieces after a serious reaction
Post by: GingerPye on April 03, 2012, 08:07:29 AM
I have similar memories of my kids' reactions.  Esp DD's first big one.  Those reactions are forever seared in my brain.  And DD's food allergies caused her eating disorder (as a baby) and the subsequent G-tube feedings for a few years.  (I HATE food allergies!)  So Ciel, I can somewhat understand your anxiety about eating and about this upcoming Easter. 

I have found, with my memories of my kids' reactions, time does help with getting past it and getting on with life.  But I can very quickly get myself back to that anxiety when thinking about those reactions.

I really have no advice --- but I'm wondering if there is something you can "reward" yourself with on Easter Day or maybe the day after, something to look forward to, to get through the holiday?  Not food, of course, but maybe a new craft kit or a new outfit or getting together with a special friend --- something that way?
Title: Re: Picking up the pieces after a serious reaction
Post by: MandCmama on April 03, 2012, 12:33:45 PM
Totally relate.  Ds2's reaction still brings me to tears to talk about, and it's been 2 1/2 years.  I still get sweaty palms when i drive by the parking lot where EMS met us.  I still feel my guts clench when I look at the family photo from that night (Christmas celebration).  The boys had matching PJs on that night and though DS2 now fits in the ones that DS1 was wearing, I only put them on in dire laundry circumstances...I still remember EMS peeling him out of them.  It is horrible.  I feel for you.  I do.  :heart:

Control.  Control is what helps me.  Knowing I'm prepared as I can be for similar situations.  Control over deciding which situations we put ourselves in.  Control in the form of being better prepared after looking back on past mistakes. Control in the form of edu others from our past experience.

I hope over time this gets better for you.  Maybe visit with family prior to the meal if they will be serving your allergens?
Title: Re: Picking up the pieces after a serious reaction
Post by: momma2boys on April 03, 2012, 07:13:00 PM
In June my ds had a reaction that I didn't post about.  It was a pretty bad situation, stuck on a school bus that wouldn't pull over.  Luckily I had insisted on going with him, and the thoughts of what would've happened if I hadn't still make me physically ill.  I don't know how to tell you to get past it, but I hope it helps to know you aren't alone  :grouphug: .
Title: Re: Picking up the pieces after a serious reaction
Post by: Ciel on April 03, 2012, 07:49:14 PM
It does help to know I'm not completely alone in this. It still feels pretty awful now though, even if it will get better in time.

How do you know when the line has been breached into a true eating disorder? I hardly eat, I know I don't eat enough and I know I don't eat a properly balanced diet -- but I eat enough to stay on my feet, if that makes sense. I've seen a dietitian, psychologist, family doctor, allergist, and yet I still feel overwhelmed and defeated by all of this. Life is just so difficult these days that these failures can feel crushing and make everything into even more of a struggle, kwim?

Thank you for sharing your stories, I know it is hard to remember and talk about these memories and I truly appreciate the sentiment.
Title: Re: Picking up the pieces after a serious reaction
Post by: Ra3chel on April 04, 2012, 10:11:02 PM
Quote from: Ciel on April 03, 2012, 07:49:14 PM
How do you know when the line has been breached into a true eating disorder? I hardly eat, I know I don't eat enough and I know I don't eat a properly balanced diet -- but I eat enough to stay on my feet, if that makes sense. I've seen a dietitian, psychologist, family doctor, allergist, and yet I still feel overwhelmed and defeated by all of this. Life is just so difficult these days that these failures can feel crushing and make everything into even more of a struggle, kwim?

Thank you for sharing your stories, I know it is hard to remember and talk about these memories and I truly appreciate the sentiment.

That's a difficult and thorny question. I'd say if it's significantly affecting your quality of life, it's problematic at a level that needs to be addressed. If the psychologist and dietician aren't helping, it might be worth looking for others; and maybe even considering seeing a psychiatrist and discussing the possibility of medication. Sometimes, even as a short-term solution, that can help mitigate things like uncontrollably severe anxiety enough for you to address the stuff behind it.

 :grouphug:
Title: Re: Picking up the pieces after a serious reaction
Post by: MandCmama on April 05, 2012, 10:13:51 AM
Quote from: Ra3chel on April 04, 2012, 10:11:02 PM
Quote from: Ciel on April 03, 2012, 07:49:14 PM
How do you know when the line has been breached into a true eating disorder? I hardly eat, I know I don't eat enough and I know I don't eat a properly balanced diet -- but I eat enough to stay on my feet, if that makes sense. I've seen a dietitian, psychologist, family doctor, allergist, and yet I still feel overwhelmed and defeated by all of this. Life is just so difficult these days that these failures can feel crushing and make everything into even more of a struggle, kwim?

Thank you for sharing your stories, I know it is hard to remember and talk about these memories and I truly appreciate the sentiment.

That's a difficult and thorny question. I'd say if it's significantly affecting your quality of life, it's problematic at a level that needs to be addressed. If the psychologist and dietician aren't helping, it might be worth looking for others; and maybe even considering seeing a psychiatrist and discussing the possibility of medication. Sometimes, even as a short-term solution, that can help mitigate things like uncontrollably severe anxiety enough for you to address the stuff behind it.

 :grouphug:
Very good advice. 
Title: Re: Picking up the pieces after a serious reaction
Post by: CMdeux on April 05, 2012, 11:29:03 AM
 :yes:


Anxiety-- even about NON-FA stuff-- can really cause eating problems, even if it isn't technically an eating "disorder" by DSM standards.

My DD really struggled with anxiety-fueled food intake issues for much of the 18 months following her last severe reaction.  The months leading up to the (recurrent) event at the 1yr anniversary were the worst.  We were seriously scared for her.   This self-resolved when she was able to face down that recurrent event (similar circumstances as the one that caused her reaction, but thankfully different location, since that would have been too, too much for her, I think) using her self-selected means of maintaining control over the outcome (less fun, less 'out-of-control' age-appropriate kid stuff, more sticking to business, serious attention to surrounding, forgoing shared touch-surfaces, etc).  What helped, ultimately, was getting through the repeat without incident. 

I wanted to offer that as a way of reassuring you that if you take precautions and get through the event/gathering without incident, that may go a LONG way to alleviating your anxiety.  This was a much more potent affector than we imagined, honestly.   

Professionals sometimes, I think, underestimate the power of an anaphylactic reaction to elicit PTSD and diffuse generalized anxiety. 
I hope that you'll do as Ra3chel suggests and keep looking for the right professional to really help, rather than shrugging at it.  :grouphug:
 
Title: Re: Picking up the pieces after a serious reaction
Post by: Mfamom on April 05, 2012, 12:50:43 PM
i'm happy to see you, but so sorry this is going on.
I had pretty serious stress/anxiety maybe ptsd after my ds reaction.  I understand how you feel.  Not sure what the answer is.   :heart:
Title: Re: Picking up the pieces after a serious reaction
Post by: Ciel on April 05, 2012, 08:41:42 PM
I left it off the list, but I actually did see a psychiatrist recently too. I am currently considering asking about perhaps seeking another opinion, but I am not sure if I can handle another 6 month wait. SNRIs have not helped at all. There are deeper issues than I can get into here, but yes, the food issues are pervasive and all tangled in with everything else. I feel so helpless. I sincerely hope that getting through Easter without incident will bring some relief.
Title: Re: Picking up the pieces after a serious reaction
Post by: CMdeux on April 05, 2012, 09:05:47 PM
I hope so, too.   :heart:

I wouldn't have believed how potent that anxiety was without seeing the evidence.  It was particular life-stress on top of the extraordinary anxiety surrounding the circumstances that led to anaphylaxis and fearing the repeat of them.  Once it was past, it was like the weight of the world had lifted off of our DD.  She regained the nearly ten pounds she had lost (and let's be clear-- this was ten pounds lost off of a VERY slender 90lb adolescent) within just a few months.  She weighs fifteen pounds more than she did a year ago (this was near the zenith of her anxiety issues).

(Please no quoting that)

Title: Re: Picking up the pieces after a serious reaction
Post by: SilverLining on April 07, 2012, 03:07:48 PM
My most serious reaction happened when I was shopping for the stuff I needed to make a special Easter treat for my kids.  To this day, I canmot do special Easter baking.  i suppose if I had to I could force myself, but why bother.  Other then that, I've gotten past the depression/anxiety related to the holiday.

As for dealing with the daily anxiety of fa's.  I was taking antihistamines daily for quite a few years.  Eventually, I switched to one that was an anti-anxiety med as well.  It was very mild, so when I finally vuilt up the nerve to cut back and eventually cut off the daily meds, I didn't have any issues.
Title: Re: Picking up the pieces after a serious reaction
Post by: MandCmama on April 08, 2012, 08:43:58 PM
Thinking of you today. Hope all was peaceful for you.
Title: Re: Picking up the pieces after a serious reaction
Post by: Ciel on April 10, 2012, 05:52:08 PM
Thank you. I don't feel any great relief or anything, but I lived through it.

I guess for now that is as much as I can ask.
Title: Re: Picking up the pieces after a serious reaction
Post by: CMdeux on April 10, 2012, 07:52:05 PM
 :grouphug:  I'm really glad that everything went off without a hitch.  I will hope for better days ahead for you, Ciel. 
Title: Re: Picking up the pieces after a serious reaction
Post by: MsMissy on April 10, 2012, 08:06:06 PM
I can understand this fully after my last reaction landed me in the hospital throwing up blood on a windy Sept. AM almost 2 years ago im still finding it nearly impossible to eat anywhere near "normally"  :-/
Afterwords, My doctor had me go on a total bland diet (blaming GERD at first) and it was though the BRAT diet we found i cant tolerate gluten then came an elimination diet......then the Doc left the residency...and the new one doesn't know what the old one was doing and hasn't cleared me to eat anything new.....and i've got way too much to do to be down ill by a random reaction....sorry got off on a rant there. :rant:
I really do hope you find some way to heal and be able to enjoy holiday parties again, i wish i could....but the OCD usually keeps me from enjoying anything. :pout:
Title: Re: Picking up the pieces after a serious reaction
Post by: Ciel on April 12, 2012, 08:58:49 PM
I am trying; I got up enough courage to start looking harder and once again end up overwhelmed, isolated and brick-walled as per usual. Too difficult. Standard eating disorder questionnaires don't really fit. I can take that as a good sign, or I can take it to mean that I simply cannot find relevant information about diagnosing anxiety linked eating disorders in food allergic adults. This is not traditional body-image issues. Does anyone know where I can find out more? I'm not sure what difference an "official" diagnosis will make or if it will help me figure out the next step but at least I can feel like I am at least trying to do something to help myself.
Title: Re: Picking up the pieces after a serious reaction
Post by: MandCmama on April 12, 2012, 09:33:33 PM
Are you in the US? I seem to remember Canada? I know here in the Us there are data bases for finding psychological help. I find word of mouth to be much more helpful, though.  I think it's more of having someone help you sort it out and come up with a plan, rather than getting a diagnosis.  After C's reaction I mentioned in an earlier post, I scheduled DH and for an appointment with a marriage counselor Id heard wonderful things about. I was terrified to feed C and was ion lock down mode. She validated my feelings, ran me through the what ifs, helped DH to get on the same page , but the biggest and most unexpected benefit was how she helped us think outside the box....
Title: Re: Picking up the pieces after a serious reaction
Post by: Ra3chel on April 13, 2012, 12:48:57 PM
Ciel, I'd suggest looking more in the direction of therapists or psychiatrists who specialize in anxiety disorders and/or OCD than ED specialists.

Database / search availability and usefulness varies wildly and tends to be linked to specific insurance providers.
Title: Re: Picking up the pieces after a serious reaction
Post by: CMdeux on April 13, 2012, 03:18:44 PM
I think Ra3chel's advice is good.  ED therapy is really about delusional thinking, at its most fundamental level.

Anxiety re: LTFA which grows out of control is more like OCD or GAD.  It's not that the threat of infectious illness isn't real, you know, but those who have compulsive handwashing as part of OCD just can't separate "real" from "not real" or "beyond what is reasonable to worry about right now."

There is a level of anxiety which is beneficial.  This makes the situation quite different from most ED triggers.   :grouphug:
Title: Re: Picking up the pieces after a serious reaction
Post by: Ciel on April 15, 2012, 06:55:57 PM
I brought this up the other day with the therapist I have been seeing and we are going to work on a plan. I knew she specializes in general anxiety, but found out she also has experience working with eating disorders. In the past I've felt like she discounted my reaction last year as a panic attack, which I am even still open to considering even though I don't believe that it was, but felt somewhat slighted by her confidence that it was likely something else. This was the first time I felt somewhat validated and felt like she truly believed that it was anaphylaxis/severe asthma, etc. We came to the agreement that it doesn't matter at this point to pin down the precise underlying mechanisms because at the end of the day I am not eating and that is by far the most critical factor right this very minute. At the same time, she thinks the treatment structure for traditional EDs can be effective in the meantime with the baby steps to just get some food into my body while we look at the anxiety concurrently. I will probably go back to the dietitian eventually to have her balance the menu properly, but first I need to just get through the first part. It sounds so simple, yet I have been struggling and failing miserably for the last year. We shall see, but for now I am working on scraping up enough courage to face this straight-on. I don't necessarily feel like getting slapped with more labels, but I guess it is what it is, labelled or not.

I apologize if my replies are somewhat scattered, but unfortunately that seems to be all I can manage these days. Thank you for all the feedback and support.
Title: Re: Picking up the pieces after a serious reaction
Post by: Janelle205 on April 15, 2012, 07:28:36 PM
 :grouphug:

Hoping that you're on the path to being more comfortable soon.
Title: Re: Picking up the pieces after a serious reaction
Post by: CMdeux on April 15, 2012, 11:30:20 PM
 :grouphug:  Facing this takes a tremendous amoung of strength, Ciel.  I know that you can do it.   :heart:
Title: Re: Picking up the pieces after a serious reaction
Post by: CMdeux on April 26, 2012, 09:41:47 AM
How are you doing? I keep thinking about you and wondering how things are going now that you're past that anniversary week.   
Title: Re: Picking up the pieces after a serious reaction
Post by: Ciel on May 08, 2012, 10:11:45 PM
Thank you CM. Not much better, but trying hard. I will be checking in with my dietitian weekly now, for a while, and she is sending me to a compounding pharmacy for a more tailored supplement. My GP is doing more thorough testing for deficiencies; there are more health concerns coming up due to not eating, which only fuels my anxiety and a sense of urgency. And we are taking a more structured and more of a team approach with therapy. It's just a very steep hill to climb, you know?
Title: Re: Picking up the pieces after a serious reaction
Post by: GingerPye on May 08, 2012, 10:18:56 PM
So glad you checked in with us tonight!  I've been wondering about you.  I hope things continue to improve for you.  It's good you are seeing the dietition weekly.  Hang in there!  Please continue to let us know how you are doing.   :grouphug: 
Title: Re: Picking up the pieces after a serious reaction
Post by: Sweet Olivia on September 23, 2012, 09:33:38 PM
My 6 yr old had an anaphylactic reaction last week after having a few sips of a protein shake that I was told was made in a nut free facility.  Turns out that I was given the wrong info by a "product specialist". I am usually pretty calm and "laid back".  I am a total wreck.  I am crying just thinking about it.  Do I need counseling?  I am scared to death and overwhelmed w/ the responsibility to keep her safe.  I am with Shaklee, the company that gave us the wrong info.  Anyone know where I can get statistics on cross contamination?
Title: Re: Picking up the pieces after a serious reaction
Post by: momma2boys on September 23, 2012, 09:47:43 PM
I always have some post traumatic stress after my ds has a reaction.  The worst is when there are circumstances that make you realize it could've been much worse with just one minor change in what happened.  Those are the hardest for me to get over.  It does get better, but if you feel like it isn't there is no shame in talking to someone.   I'm sorry your son had a reaction, especially when you did the right thing and called.  :grouphug:
Title: Re: Picking up the pieces after a serious reaction
Post by: ajasfolks2 on October 01, 2012, 07:34:41 PM
As you work through the events, perhaps consider working to improve the food labeling laws?

Start with your own company -- insisting on REAL knowledge and understanding of cross-contamination AND information supplying to customers.

Before you suggest changes, have the CHANGES you wish to see (the "best practices" solutions) already in hand for them.  In writing.  Kept simple.

Sometimes you have to "help" people/companies/manufacturers "get it".

Know what I mean? 

{hugs}   :grouphug:






Forgive yourself.  THAT needs to happen first.   :heart: