another reaction

Author:
Updated:
Original:

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.

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

On Sep 28, 2003

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?

On Sep 28, 2003

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.

On Sep 28, 2003

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.

On Sep 28, 2003

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}}}}

On Sep 28, 2003

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.

On Sep 28, 2003

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.

On Sep 28, 2003

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.

On Sep 28, 2003

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).]

On Sep 29, 2003

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

On Sep 30, 2003

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]

On Sep 30, 2003

sillyfeline, I am so sorry for you. Is there any reason that you have to live in the city? I am just concerned that maybe you could move into a better and more comfortable surrounding. Is it because of a job that you must stay or is it just that you have never lived anywhere else. I am just thinking that maybe you would be better off in a different environment. I am just trying so hard to think of the right answer. Also is there any chance that you are allergic to more than you are aware of. Have you been retested lately? That also may be something to think about. I feel so badly for you. Take care and good luck. CLaire

On Sep 30, 2003

I have also noticed that this forum is very parent-oriented. A lot of us who are not parents are wondering where we can get a sympathetic ear. Often, our allergies were not diagnosed until we were adults, even though they had been a problem since childhood.

Assembling that all-important documentation is really a hassle, because it can involve trying to hunt down doctors and pediatricians that have been dead for decades. However, without the documentation, our claims are often not taken seriously.

[This message has been edited by Elisabeth (edited October 01, 2003).]

On Oct 1, 2003

Elizabeth, I'm not sure if I'm misunderstanding your post, but, personally I've found the parents here very supportive and helpful. Recently I had a reaction that upset me and I posted in the Reactions Forum. A lot of the support and help I received came from parents of pa children. Off the top of my head I recall posts from: Peg, Amy, and river. (I realize my response to river was misinterpreted and she is still upset with me, but, she did come and offer support when I needed it and I do appreciate that. Maybe one day she'll read the next response and forgive me.)

This whole board is much more parent-oriented because that's who tends to come for help most often. But these people are definitely sympathetic and helpful.

[i]If I've read more into your post than intended, please forgive me. In print things often come off different than intended, and I definitely DO NOT want to scare you off the board, or send you lurking.[/i]

On Oct 1, 2003

Sillyfeline, If you contacted the EMS (911) people in your area of NYC and told them that you existed and what the story is with your PA then when your call came in they would pay extra special attention and get to you faster.

On Oct 1, 2003

Maybe I worded things wrongly. Actually the parents in this forum are very open and supportive. Not being a parent, I tend to skim over many of the posts when I see them. I would like to see more posts about workplace issues. (Maybe I need to contribute more myself.)

On Oct 1, 2003

i dont think the issue is whether parents support allergic adults. i just think that adults have other concerns from the parents, that generally do not get addressed since we are not the target audience in most forums, i.e. self treatment, workplace, travel, roommates, dating, etc.

On Oct 1, 2003

Sillyfeline-

I do agree that parents have different concerns than allergic adults, but that's why the "adults living with PA" forum is here. If you have questions reguarding any of the topics you mentioned (i.e. self treatment, workplace, travel, roommates, dating, etc. ) you should definitely feel free to ask. Even though the adult population on PA.com is small, the members are full of a lot of helpful information.

Allison

On Oct 7, 2003

Yet another set of endless allergic reactions. I have no medical recourse and no support system. I no longer believe such support exists for adults. I can't do this anymore. I'm sorry. Bye.

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

On Oct 7, 2003

I'm an adult and I find this site extremely helpful and I do receive a lot of support here. Sillyfeline - you should hang around here longer as you'll find it very beneficial rather than being on your own. There's lots of adults with allergies here. I had thought the posts above were very supportive of you [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

[This message has been edited by erik (edited October 07, 2003).]

On Oct 8, 2003

Sillyfeline, I sent an e-mail to the address you have listed in your profile last night. Thought I'd mention it here, in case you don't usually check that address.

On Oct 8, 2003

Sillyfeline

Are you OK. Maybe we can pull up Chat time lets all get togeather. Stay strong Love this site Synthia

Related