Sunday, June 19, 2011

Frustrated and Angery

Latex allergy is a very serious, life threatening allergy. I have learned to refer to it as a rubber allergy. people understand rubber. when they hear latex, they think of only gloves and condoms.

I have a very dear friend living an hour away from me with latex allergy and now mast cell disease(from having such severe allergic reactions). She has anaphylaxed and been on life support in the ICU and in the ER.

Two years ago began a very terrible time for her that began with storing an open container of pool shock(pretty high chlorine) and having a chemical burn in her respiratory system. After that there were many minor reactions for her, but also three very serious ones that needed a call to 911. I was on the phone with her during each. I actually called 911 myself for two of them. I had to talk her into using her epi-pen for all three and coach her through it. One of the symptoms with severe reactions will be really bad confusion, almost euphoric, and sounding drunk. Reasoning can be difficult wit the one reacting.

She is a nurse who also became allergic because of latex glove use at work. Because she became disabled, she decided she would do her best to be a great stay at home mom. She has three children who are all very involved in many activities, all going in three different directions. She was being the perfect mom. However, she did this at risk of her own health, taking benadryl with symptoms, napping, then drinking lots of coffee to drive her children to sports and dance. She really was being casual and living right on the edge with exposures until she had serious reactions that involved hospital time.

About a year ago she lost her husband. She became very careful with exposures, getting pushed to ask for help transporting her children to activities because being the only parent it was so important for her to be alive for her children.

Well, time has passed and she's begun to get out socially. It's great, but not when she begins having a reaction with a serious exposure, takes benadryl, takes a nap, and then goes out on a date. She has become so casual about her allergy and health again. I'm really angry but don't know how to address this with her. She has become a sister with all both of us have been through, but I'm afraid of losing that relationship if I really speak up.

Any suggestions you have might help me.


Sunday, April 17, 2011

Anger and Frustration

I have been advertising on ebay and the local Pennysaver for the washable feminine pads that i sell. It has been frustrating with no phone calls. I sew an excellent product that I have been using myself for 2 years. I recently offered this for sale. It is a very green product, cost effective, convenient, and healthier than disposable sanitary pads. There is no natural rubber latex in them. Most disposables contain latex. Two friends have suggested that I start a website for this. I don't want to go really big, but I may have to do this. At this point in time, I have received no phone calls from the local ad and no purchase from ebay. I also used Craig's List. This has gotten to be very frustrating for me. Just now I received a phone call from what sounded like a young man. The call was bordering on obscene. I told him he obviously didn't want to make a purchase, and hung up. I have received calls like this long ago. They are still unnerving. I am a nurse, unable to work any longer because of a life threatening allergy to natural rubber latex. I have had sexual harrassment from patients and coworkers. This isn't something to get use to or be comfortable with. I also get angry that some people have nothing better to do because their brains are the size of peas. Their IQ is about 5. Now I wish I had told the caller to get his rocks off with someone else. I think this call has helped me to make my decision. Sal

Tuesday, September 21, 2010

Summer Vacation

It has been a wonderful summer. In spite of my allergy, I've actually managed to have single vacation days. I haven't had a vacation in a number of years because of natural rubber latex allergy. I'm unable to attend my nephew's wedding next month in southern Indiana because of progression of my allergy. This just tears me up.

To compensate, I planned a few trips within an hour of home. But it all started with a 3 day fishing tournament between my neighbor & me on July 4th weekend. We did have family members included in this, and a separate youth tournament. Well, we got creamed; didn't even want to count the number of fish they caught. It was a great 3 days of fishing on & off. Yes, I would do it again.

Next was a trip to Chimney Bluffs State Park by way of Fairhaven. The country is beautiful with many farms, a lot of apple trees. I found several books on the Erie in a gift shop. I'm really serious about soaking up as much history about the canal as I can.

The bluffs were just awesome. It was an overcast day, and we did have some rain while we were there. The bluffs are spires in the sandy cliff that are sculpted by Mother Nature's wind and water. They are always changing. I have seen them from the water, and they are truely magnificent. We didn't take the path that goes above them because of the weather. We created the senior path, straight to the picnic tables with our carry in lunch. The wind from the lake felt so good. All of this was created by the glaciers. It gives me goose bumps.

Next on my schedule of planned exposures was touring the Lois McClure while she was docked in Palmyra. I was on her 3 years ago. She returned for the World Canals Convention in Rochester, NY. It was a beautiful day, and being a weekday, the crowd was small. The Lois is a canal schooner with the ability to navigate lakes and the canal. She is a replica of the canal schooners used in the 1800's to transport produce and goods across the state. The Erie was a boon for shipping, decreasing time and cost. The crew volunteers to navigate, and have to be quite adept doing so. They share all kinds of information about her so they need to be very knowledgable as well. I love this ship and all they tell me about her. Now, she navigates the canal with a tugboat. Back in time, mules or horses would have pulled her.

I just can't get enough or learn enough about the canal. Living here has certainly urged that need. I do feel like I had an Irish ancestor who helped to dig. I haven't yet visited the small cemetary up the road with Irish workers who died from smallpox and malaria.

Next trip is to a cruise in Lockport going through the locks. I believe now there are 2 locks. Originally there were 5. They are still there; called the "flight of 5". It goes through the lowest point of the escarpment to reach the Niagara River which is fed by Lake Erie. Rte. 104 goes below the escarpment. There is a highway that follows along the river at the top of the escarpment to Niagara Falls. There is also escarpment on the Canadian side of the river. We won't be cruising far beyond the beginning rocks of the escarpement. I just had to add what I've seen up there from living in Tonawanda and visiting all those sites way back then.

So far, I have been able to do these short trips, something new for me. I think I am learning how to schedule my exposures so that i fall short of reactions. We are entering fall with closed buildings which may change my situation. The best I can do is avoid.


Thursday, June 3, 2010


A very dear friend, soul sister, lost her husband Memorial Day morning. What happened with him medically wasn't something resolved with her CPR. So many losses with patients never prepares me for my own losses of loved ones. It's the Lord's choice when He takes us, not ours, but sometimes it just seems so unfair.


Saturday, May 29, 2010

2010 Memorial Day Weekend

Gee, what do I say? This is a holiday weekend. After 25 years of working holidays at least half the time, I still had no feeling for holidays, all of them. Now I finally do. But I spend my time alone because natural rubber latex allergy is so limiting. At least I do have Casey to keep me company, and she really does.

A good thing is that I've been on a new, to me, antidepressant that seems to have started working already. It hasn't stopped the down times in late afternoon and evening yet, but I know it will get better.

I had a lovely campfire last night, first for summer. Casey doesn't like fire so she went into the house. It was very noisy here thru the afternoon and evening til just before dusk. The Frey farm across the canal looked like Watkin's Glen with all the RVs and tents. It sounded like it too with all the dirt bikes and 4 wheelers racing around the field. It's been quiet today. Someone must have complained. I don't blame them. All the noise took away from the beauty of the canal and the peaceful time that many were here to enjoy. I'm so glad that all can enjoy the serenity down here.

Many boats have been going back and forth today enjoying the weekend and wonderful weather. Sometimes the boaters point to my house while passing by. I have a hard time keeping it all up and I'm still behind, but I love those compliments. I almost expected to see jaws coming out of the water, but he can't because he's already in my little pop up pool. :) Ken, my pool boy, sits on the top step of the ladder. Can't have a pool without a pool boy.

Because of a dear friend suggesting it, Casey now has the run of the backyard while I'm out with her. She loves it. I guess after almost 9 years I can trust her to leave the "sneak out spots" alone. I am so very lucky to have such a character for a companion.

I continue to workout at Curves Macedon even when I can't always go d/t reactions elsewhere. It's fun, there's great networking, I meet new woman who may become friends, and my energy level has improved a lot while I'm thinning down. This place has been a blessing for me.

Time to go fishing in my backyard. :) :) :)


Sunday, April 4, 2010


It's a lovely Easter Sunday here, as I sit homebound for the 3rd day. The last 2 were loaded with benadryl from a reaction beginning on Fri., right after I finished with my prednisone taper from a reaction that I couldn't get out of for a week. I know I have progressed with the disease of natural rubber latex allergy.

Because of this, I have missed 2 social functions this weekend. I rarely have social functions to go to, and, it never fails. I can't make it to them.

Holidays have never really meant a lot to me because as a nurse I worked half of them for 25 years. No one ever made their holiday plans around my work schedule. That includes 2 ex-husbands and their families. I pretty much became immune to holidays. I do have several that were my big favorites that I could participate in somewhere after I finished at work. I think I'll just list all that I can because I'm in a fowl mood, maybe withdrawal from the prednisone.

New Year's Eve-balloons are always part of the decor anywhere. Then in restaurant/bars, latex gloves are used for food service. Well, I usually sleep thru midnite anyway.

Valentine's Day-It does help to have a valentine, but I find I gift myself better than they ever did. I can't eat chocolate. :( I know from contacting Hershey's that they use latex gloves in the manufacturing plant. I'm learning from others that most chocolate makers use latex gloves.

St. Patrick's Day- a super day for an Irish lass. I always went out to celebrate! I'd dress in funky green clothes & take along my green food coloring for my beer. One year, I even went to South Hadley, Mass. They paint the center line green. The parade is 4 miles long. There is more everything in that parade than Macy's Thankgiving Day Parade. Every once in a while you go into the bar to refresh your drink, & warm up if need be. The whole parade route is a party, long after the parade has finished. The 2 very Irish bars that I would go to use latex gloves. The one right around the corner always has balloons. Now I just stay home & cook corned beef & cabbage. This is a huge dissappointment for me. Last year, my big few minutes out was to Wal*Mart with my Irish cap.

Easter-no chocolate says quite a bit right there. I've heard from 2 friends who already know I'm stuck at home. No one else has called, not even my out of state family.

All summer holidays I'm better off here. I would be reacting to the rubber from all the road traffic & road construction. Besides which, many people are out on the canal & the pathway. My friends tend to migrate here as well.

Halloween-another big fave is now a nightmare for me with rubber in masks, grease paint, the decorations. I use to dress up when I lived in the trailer park, not wise. I worked out a costume with sheets to be a ghost, but it still didn't filter out the latex protiens. No children come by where I live now. I don't even decorate, too much rubber exposure.

Thanksgiving-everyone is going somewhere. I do cook a nice turkey.

Christmas-I am allergic to my artificial tree, but I still put it up. The day is a family day: that's where everyone else is.

After 13 1/2 years with this, the dissappointments seem to get worse instead of better. I just can't let it roll off my back.


Wednesday, March 24, 2010

Falling of the Plateau

Last week, I had the pleasure of taking my vehicle to the dealership, if you can call it that. The pleasure, I mean. The engine light was on. I couldn't fix it with oil, antifreeze, or transmission fluid. They plug your vehicle into the computer to find out what's wrong. That is an immediate charge of $89. Why? They don't have to spent 2 hours looking for the problem. Then they don't have the part, but they can get it. Also, along with the fee for the sensor, there is a list of things my vehicle needs that will total $2,000. I decide to just do the air sensor. It won't take too long, so I decide not to have them shuttle me home.

Alas, the trip starts going downhill fast. They are inflating gigantic balloons near the waiting room. I try to wait outside, as I have done before, but the temperature is 32o. It won't hit 50o for a couple of hours. I spend my time in the service area next to the pile of tires, no chair to sit on, but I can lean against the wall a lot while I read. also, for my enjoyment, it's all windowed so I get "free" entertainment watching all the mechanics working in their bays. I can't figure out whose working on my van, but the guy in the next bay is snapping his latex gloves on & off . My hood is open. The airborn rubber protiens have become hitchhikers on my engine. I end up spending 4 hours there because the part was only available at the furthest dealership.

The hives are popping up in my mouth, and my driving is poorly focused as i drive home. I'm having a reaction. Of course. I can't stay much longer than 15 minutes in any public place. i'm usually homebound for 2 days with a reaction and stoned on benadryl, even tho' I know it can take 3 days to recover. Well the 3rd day, I was still in the reaction. The 4th day I had to cancel an important fun day for me. (Latex Allergy allows me about 3 of those a year and not necessarily the ones most important to me.) The 6th day I get some groceries. I'm still reactive or I'm rebounding. After 7 days stoned on benadryl, not getting out of the reaction, I am frustrated with my whole life and what I can't do. On the 8th day I hold the benadryl and get into the doctor's office for a script for prednisone.

I haven't mentioned all the anger, frustration, feeling like crap, and the revelations about what I can no longer do that have gone through my mind this past week. I do know in my heart that this disease is progressive. There is no textbook about NRLA, just those of us who have it.