Has PA decreased your quality of life?

Posted on: Fri, 06/13/2003 - 2:57pm
BS312's picture
Joined: 09/05/2001 - 09:00

In the current issue of the journal Pediatrics there is a supplement on food allergies. One of the first statements in this publication is that food allergy "significantly decreases the quality of life" for patients and their families. Am I the only one who finds this offensive? How can they make such a blanket statement about our quality of life? I do not want our pediatrician to read this and think that somehow DD's quality of life is lower than that of a kid without PA. Her life is different because of food allergy, not worse.

Posted on: Fri, 06/13/2003 - 3:15pm
Driving Me Nutty's picture
Joined: 05/01/2003 - 09:00

That is quite a presumption. Not to mention that quality of life is intangible and ambiguous to define.
On the other hand, I would say that my quality of life has decreased in the sense that I get 20% less sleep and have additional stress.
But I'm only 2 months new to PA also [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Fri, 06/13/2003 - 3:17pm
erik's picture
Joined: 05/15/2001 - 09:00

My quality of life has not been diminished.
Sure - I can't eat at Thai restaurants and I have to skip many baked goods, and miss out on Snicker's, M&Ms, etc. But the alternatives (Italian restaurants, Touche/Bransons bakeries, Smarties, Aero, etc) are even better!
Plus look at the people in the rest of the world... war and famine in Africa.. war and death in the Middle East.. malaria... dengue fever... poverty...
I think my quality of life (even with a peanut allergy) is much higher than that of the majority of the world's citizens so I have no complaints. I find my peanut allergy is managable, and I have had it my entire life so it's not a big hassle at this point.

Posted on: Fri, 06/13/2003 - 10:48pm
Renee111064's picture
Joined: 07/05/2001 - 09:00

No! Our quality of life is not different.
Everyone lives their lives differently. It is what you put into your life that counts. We are not loosing out on life. PA people experience things differently. We are more cautious because of food allergies.
Does my son miss eating steak or peanut butter? Absolutely NOT. You can't miss what you don't have. IT is up to each individual to live life to the fullest, but their quality of life is not different from anyone else!
best wishes,
Renee [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]

Posted on: Fri, 06/13/2003 - 11:45pm
Peg541's picture
Joined: 12/29/2002 - 09:00

Quality of life? In a Westernized society where most everyone else can willy-nilly go anywhere and eat, touch, and breathe anything they choose? Yes our Q of life has been changed.
What we will always miss is the carefree (ness) of our life before PA.
We were walking into a restaurant after graduation last week and I realized I had DS epi pens because he did not wear them under his graduation robes. We had to go back to the car to get them. No big deal but the feeling of DS eating in a known restaurant WITHOUT his epi pens scared me to death.
Might sound selfish, we have nice cars, plenty of food and relative safety but yes
our quality of life has changed.

Posted on: Fri, 06/13/2003 - 11:58pm
erik's picture
Joined: 05/15/2001 - 09:00

Hi Peg,
I guess I would probably respond differently, because I have had PA my entire life. I have never lived without it so this is the only life I have known. It seems normal to me to always have to be aware and careful.

Posted on: Sat, 06/14/2003 - 12:07am
Peg541's picture
Joined: 12/29/2002 - 09:00

You are so right Erik and your comment about the rest of the world in poverty and disease really hits home.
You are also a shining example that all of the mothers on this list can look up to and say "Erik did it, we can too!"
Sending DS off to college in a peanut-filled world feels like a mine field to me. He's smart, he's vigilant and he's wonderfully educated and he will be fine.
I would still like a bit more carefree though.

Posted on: Sat, 06/14/2003 - 12:09am
Anonymous's picture
Anonymous (not verified)

Quote:Originally posted by BS312:
[b]food allergy "significantly decreases the quality of life" for patients and their families.[/b]
Personally, I consider pa a bump in the road. It doesn't [b]significantly[/b] decrease the quality of my life. I do think some other food allergies do.

Posted on: Sat, 06/14/2003 - 12:14am
erik's picture
Joined: 05/15/2001 - 09:00

Quote:Originally posted by Peg541:
[b]We were walking into a restaurant after graduation last week and I realized I had DS epi pens because he did not wear them under his graduation robes. We had to go back to the car to get them. [/b]
Also, be careful about storing the epi pen in the car, especially on hot, sunny days. I had read somewhere that the epi pen should be kept away from extremely hot environments.. Unfortunately, I can't remember the exact details at this time.
My epi pen states to store it between 15C and 30C (59F to 86F)

Posted on: Sat, 06/14/2003 - 12:18am
erik's picture
Joined: 05/15/2001 - 09:00

Quote:Originally posted by Peg541:
[b]I would still like a bit more carefree though.[/b]
Hi Peg,
Yes, I do understand the "carefree" idea. I would love to be able to eat any chocolate bar I want, eat at any restaurant I want (ie: Thai), not have to always carry around an epi-pen...
So I guess rather than my quality of life changing, I guess I would say PA is a nuisance... an extra complication I have to deal with.
I also think it is easier for someone like me who has had PA all my life. For an adult who develops PA, I think it is harder as they have to make all the life adjustments.
And yes, the fact that myself and others at PA.COM have managed PA for our entire lives is a good way to demonstrate to the mothers at PA.COM that the future for your child is promising. They can have a relatively normal and safe life as long as they always keep aware and are careful [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
[This message has been edited by erik (edited June 14, 2003).]

Posted on: Sat, 06/14/2003 - 12:37am
Peg541's picture
Joined: 12/29/2002 - 09:00

You are correct about the car Erik. Graduation was the first time in YEARS that DS did not wear his epi pens on his belt. I kept them in my purse and later left the purse in my car not wanting to drag it to the restaurant since DH was paying!
I actually carry two epi pens of my own for DS and always keep them out of high heat.

Posted on: Sat, 06/14/2003 - 12:41am
erik's picture
Joined: 05/15/2001 - 09:00

Hi Peg,
I forgot to say one thing... Congratulations to your son on his graduation! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] You must be a very proud mother. I wish him all the best at university. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Sat, 06/14/2003 - 12:56am
becca's picture
Joined: 05/22/2001 - 09:00

The operative word here is *quality* and is quite subjective. I would say my life has changed, but I do not know if I would attach the description of lesser quality to it. It is just different and different than most other families.
My greatest inconvenience would definately be the dining out factor, especially when travelling. In a new area, I just would never allow my dd to eat at unfamiliar establishemnts in unfamiliar territory, not knowing the true quality of medical care there, should we need it. But, I actually take peace of mind in just bringing my own food for her, rather than feel the anxiety of allowing her some unknown food and feeling anxious all night!
Inconvenience? Sure! Lower quality of life? No way. I think we are all terrible spoiled in our current life beyond what I could have ever imagined as a child. My dd is possibly *more* priveledged than I would like her to be! Her quality of life, as well as ours is great.
I can think of very non-life threatening situations that compromise quality of life to a much greater extent. Arthritis, headaches, any chronic pain condition. But gosh, we could come up with long lists. becca

Posted on: Sat, 06/14/2003 - 4:02am
anonymous's picture
Joined: 05/28/2009 - 16:42

Absolutely not! In fact, I think it has increased our quality of life. We have learned so many things merely because of Ryan's PA, we have saved tons of money (from not going out to eat, we work together more, etc.
From my own perspective, I'm a much better cook and can decorate beautiful cakes for my family now. We eat so much less or processed foods and have increased our grains.
Really, there have been so many positives that have increased the quality of life for our family. I really don't have time to list them all. Although, I think the first six months after being diagnosed was a little hard because you go through that period of mourning all the things you "lose" like going out to eat. After a while, however, you really don't miss it anymore.

Posted on: Sat, 06/14/2003 - 5:56am
Anonymous's picture
Anonymous (not verified)

I'll just basically echo what Anna Marie said. I consider PA a "blip" in our lives. And yes, I do find that blanket statement offensive.
Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Posted on: Sat, 06/14/2003 - 6:56am
Sandra Y's picture
Joined: 08/22/2000 - 09:00

I don't find the statement offensive. I don't think it means our lives totally suck, but it means our quality of life is less than it would be if there were no PA.
For me, as the mother of a PA kid, this is definitely true. I have significantly less freedom than other mothers I know. I am more tied to my kids. It is harder for me to leave my son, harder for me to get a babysitter, harder for me to relax and enjoy myself when I'm away from him.
This is a big problem for me because he is 7 now and I am chomping at the bit for more freedom for myself. I didn't mind being with him all the time when he was small b/c I felt he really needed me. But now he's older. In a few years I would be able to leave him with his older sister (if he weren't PA) but I don't know when I'll really be able to do that.
I love and adore my kids but I have been a SAHM for 10 years and my husband works constantly (admittedly, part of the problem, in addition to the PA, is being married to a workoholic). I am not naturally drawn to other mothers and I hate having to be around the school so much checking up on everything, hanging around boring kids' birthday parties, etc. I long to go out to movies and plays with friends and do things without the kids. Having a PA kid makes it very hard for me to get away.
Whenever I want to do something it is a HUGE hassle trying to arrange care for my son. This makes me avoid doing things I need to do for my own intellectual stimulation. I find I enjoy my kids more and I'm better with them if I have some time for myself, and it's hard to get that because of the PA.

Posted on: Sat, 06/14/2003 - 12:17pm
Driving Me Nutty's picture
Joined: 05/01/2003 - 09:00

I'd have to agree with Sandra Y's comments. I also think that I am a better mother when I have some time to myself, which is harder to get now.
I'm new to PA and I feel the quality of my life has already changed due to all the stress and effort that PA puts on me and my family. Right now, the additional time of reading, researching, calling companies, working with sitters & family about PA, all take away from quality time I could be spending with my dd. The added stress and sleepless nights worrying about it also take their toll on my brain power and disposition.
And I'm just trying to deal with today and not worry about 3 yrs from now when my 2 yr old is going to school.
I also think that quality of life is very subjective statement. I was just reading on webmd and noticed a statement 'The Journal of the AMA reports that even moderate weight gain significantly lowers quality of life'. An unrelated topic but that statement jumped out at me as many might disagree with this comment also.
I do find it encouraging to read all the other posts, where people don't feel their lives are as negatively affected by PA. Kind of gives me role models to aspire to.

Posted on: Sat, 06/14/2003 - 3:02pm
WoozerMom's picture
Joined: 12/28/2000 - 09:00

I don't think it has decreased my quality of life. It is just a different life, but I mostly feel lucky.
Allergies give you a different perspective. Your true friends help you. You develop a stronger feeling of service to community.
I'm 63, and I have learned to adjust. I've been all over the world and learned how to cope in lots of different situations. I don't consider myself to be disabled. My 74 year old husband has a bad heart and is very deaf. Now that is something that decreases the quality of life.

Posted on: Sun, 06/15/2003 - 1:04am
river's picture
Joined: 07/15/1999 - 09:00

This got me thinking about ways PA has increased my quality of life:
-I find that myself and family are surrounded by a higher quality of friends and relatives, partly because sharing in our problem makes them better people and partly because those less than trustworthy types get weeded out.
-I'm a much more compassionate and caring person because PA has helped me truly realize the importance of good community and how individuals can make this happen.
-My children attend a superior school because I needed to find one with a superior attitude about PA.
-We eat healthier since all those bakery items that usually tempt people in the grocery store have no power over me.
-We eat higher quality food because I must buy brand names and avoid the germ laden bulk bins.
-We take higher quality vacations, because this is where we're likely to find more education about peanut allergies.

Posted on: Wed, 06/25/2003 - 5:13am
LisaMcDowell's picture
Joined: 12/06/2002 - 09:00

Not for me or my family, however I believe this to be true for many people. If I had been the author of that article & using this discussion board to gather information I would also say "definitely yes".
In gathering info, my focus would be on those who have a child(ren) that have had the allergy the longest period of time & those who have been here for years & those that post regularly. I'd research their overall attitude, the last time their child had a reaction, why it happened & how they coped w/it, etc. I believe the attitude one has developed over the years reflects what they have truly chosen the allergy to be for them. Its not something one has to admit to because some people are perceptive enough to pick up on what it really is for that person.
I've read that it takes about 6 months to learn all that is necessary to work w/the allergy & I believe this to be true.
As for emotionally, most workplaces allow 3 days off for bereavement of the death of a loved one. I've read that the natural process of accepting that loss is about 5 years. The question is how long will a person allow themself to be caught up in the "what ifs". And when will that person decide to realize their power by controlling what they can & not what they can't.

Posted on: Wed, 06/25/2003 - 8:13am
MeCash's picture
Joined: 04/18/2001 - 09:00

PA actually 'improved' our quality of life. From NOT knowing why my son was constantly having severe asthma to finding out about PA, I'd take the PA to the ignorance ANY day. Those five years were brutal...
When I look back on it, I can say that I would much rather live with this, in my opinion, minor problem to the alternative, which was weekly (or more) visits to the Doctor, ER or after hours care centers!
Fact of the matter is, no parent can be everywhere their child is and protect them from every evil in the universe. Peanuts are just another 'evil' to me that I must protect my children from until it is their own responsibility to protect themselves.
I think I don't stress out about it as much as many people on this board do. I know my kids are PA, I make what accommodations I can, and I take pleasure in the time I get to spend with them, PA or no.
Mind you, it's taken me over 2 years to feel this way about it. It's just so much better KNOWING what the problem is than wondering and worrying and panicking and freaking out!

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