another reaction

Posted on: Sun, 09/28/2003 - 3:51am
sillyfeline's picture
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another reaction last night. truth is i think one of these days im just gonna have one of those horrible new york deaths over this and no one will notice til the smell hits the hallway. im scared to death to use the epipen (i just kinda clutch it) and really, what are the odds that i could inject myself, call 911, lock my door behind me, and make it down 4 flights of stairs alone (with a back injury)? anyway response time is over half an hour and nobody yields to an ambulance here anyway so likely its much more than that. this is just it. no matter what i do this keeps happening. im up to about a dozen allergies now. and its not like i have anyone who i could live with and no one around here makes eye contact much less speaks english. one of these days its just gonna go all the way. no hope. i hate this city. i wonder how long i could just not eat.

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Adult onset.
Anaphylactic to soybean and peanut.
Allergic tree nuts, eggyolks, certain fruits and veggies, and lots of medications.

Posted on: Sun, 09/28/2003 - 7:16am
Love my C's picture
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Joined: 04/03/2002 - 09:00

sillyfeline!!
I am so sorry this is happening to you! Do you know what caused last night's reaction?
Do you have more than one epi? You should probably have at least 2. You really should come up with an action plan for yourself. This might help take away some of the fear. If needed and you gave yourself the epi & dialed 911, you shouldn't have to go down the stairs. Just leave the phone off the hook so they can locate you.
Aren't you in NY? I know there are support groups there. Have you found one?

Posted on: Sun, 09/28/2003 - 8:54am
sillyfeline's picture
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there is no active group in nyc yet. its always discussed but never happens. i have 2 epipens i just never use them cuz it never gets worse than rapid pounding pulse, severe wheezing, itchy mouth, and diarhhea and honestly i dont know if the treatment might be worse than the reaction. but the truth is no one will let a paramedic into the building so even if it did arrive (estimated 30-180min wait), they couldnt get in and if they could, then my apt couldnt be locked. and to top it off, my insurance company would stick me with the bill if i went to the hospital or my allergist without days of red tape. so really the best i can do is carry them in case i have no choice and probly die either way if it comes to it. i hate this condition and i hate this city. at this rate ill never be well long enough to do anything. ive been recovering from chronic reactions while covering from back surgery alone in a 4th floor walk-up. i dont think im ever getting well and i cant afford thousands of dollars every few days over this it. its awful. i cant help hoping something else will just kill me 1st.
------------------
Adult onset.
Anaphylactic to soybean and peanut.
Allergic tree nuts, eggyolks, certain fruits and veggies, and lots of medications.

Posted on: Sun, 09/28/2003 - 9:01am
sillyfeline's picture
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Joined: 03/28/2001 - 09:00

besides, has there ever actually been any group or seminar not geared toward the parents of allergic children? its a very different situation for adults. the issues really are more different than they are the same.
------------------
Adult onset.
Anaphylactic to soybean and peanut.
Allergic tree nuts, eggyolks, certain fruits and veggies, and lots of medications.

Posted on: Sun, 09/28/2003 - 9:22am
Anonymous's picture
Anonymous (not verified)

sillyfeline (actually, that darn cat sounds more appropriate right now [img]http://uumor.pair.com/nutalle2/peanutallergy/eek.gif[/img] )
I really can [i]feel your pain[/i]. I don't know if this will help you at all, but I went through similar feelings when I first started having reactions (peanuts and sesame seeds are my poison). Once I was able to figure out what was causing it, I was then able to avoid it, and life goes on. I once suggested to my doctor to stick a bag of that glucose in my arm and I'd just walk around with that. (Hey, I'm slim, I could live on sugar.)
Honestly, I don't think you could last long *just not eating*. But, have you tried either a rotation diet or an elimination diet? I know, these things are easier said than done. Or, maybe a (boring) bland diet until things settle down.
As another adult onset, I can understand what you mean about the situation being more different than the same.
Well, I don't know if any of this helps at all, but, you're in my thoughts.
{{{{hugs}}}}

Posted on: Sun, 09/28/2003 - 9:47am
sillyfeline's picture
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Joined: 03/28/2001 - 09:00

i control my diet but nothing helps. too many allergies to control everything and companies lie. even staples are a risk. this time i have no clue what it was.

Posted on: Sun, 09/28/2003 - 9:47am
margaret's picture
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Joined: 11/01/2000 - 09:00

Sillyfeline,
You sound really depressed. I am sorry that things feel so hopeless right now. I hope you will seek out a support group in your area or perhaps a counselor who can help you with an action plan to make you feel more empowered. Lisa Cipriano Collins, president of Food Allergy Matters, does telephone counseling. She specializes in consultation to families and various systems to provide info and support regarding the practical and emotional aspects of managing a child's food allergy. (I got this from the back of her book). I know whe specializes in kids, but she just may be able to help you or point you in the right direction. You can contact her at 1-781-270-4945 or email her at [email]cipcoll@rcn.com[/email]. You can get through this! I am pulling for you.

Posted on: Sun, 09/28/2003 - 9:50am
sillyfeline's picture
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Joined: 03/28/2001 - 09:00

of course, EVERYTHING is for parents. the depression predates the allergies but too many allergies to treat and too poor to pay $200/hr for therapy. and honestly if anyone has reactions chronic enough that their pulse cant normalize would be like this anyway. i dont know. i wish i had teachers and mommies who would buzz in a paramedic but i dont.

Posted on: Sun, 09/28/2003 - 9:55am
Going Nuts's picture
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Joined: 10/04/2001 - 09:00

Hi Silly Feline,
I'm so sorry that you are going through this. Have you contacted Food Allergy Initiative? They are in NYC and may be able to help: [url="http://www.foodallergyinitiative.org"]www.foodallergyinitiative.org[/url]
Please try to hang in there; I can imagine how frustrated and panicked you must be!
Amy
[This message has been edited by Going Nuts (edited September 28, 2003).]

Posted on: Mon, 09/29/2003 - 3:03pm
Love my C's picture
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Joined: 04/03/2002 - 09:00

sillyfeline, please check out the support groups board. Allison, an adult w/ PA, lives in NY and is trying to get people together!

Posted on: Mon, 09/29/2003 - 6:14pm
toomanynuts's picture
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Joined: 08/23/2003 - 09:00

Hi SillyFeline!
Is it the food you are worried about or just having a reaction? If you are looking for safe foods our family has had the best success with small manufactures and totally nut free facilities. We have more than just PA/TNA we also have many other food allergies. I have a very long list of safe foods if you would like it. They also have online stores so they could mail the items to you if you can't find them in the stores. I know that it is scary! I too wish that you had someone near that could look out for you. Hopefully you can get in a support group and meet some other people near you. Anyway your not alone. What about just eating whole organic foods. Try to stay away from a lot of processed food items because that is where you may run into problems especially with the nuts and soy allergies. Let me know if I can be of any help I don't live in your state but I would be happy to share list of safe manufactures with you and whatever advise you might need. You can e mail me [email]toomanynuts@att.net[/email]

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