Thursday, June 11, 2009

Dreaded Allergist Appt.

I should warn you now. I just finished writing the post below and it isn't the happy-go-lucky feel good blog post that will warm your heart.

So if you were looking for something light and entertaining... check back another day or scroll through older posts.

I have had such a heavy heart the last few weeks with this impending allergy appointment nearing that I was having a hard time coming up with blog posts. I found myself not wanting to taint my blog with heaviness, but I realize that is silly and certainly not real life! So bear with me, buckle up and join the ride!

I should be preparing for tomorrow (Friday). I just can't face it yet. I am so sad for the suffering that Mickey will have to go through tomorrow. He will be getting many skin pricks to be testing for more of the latex allergy fruits(banana, kiwi, mango).

They cannot do an actual latex skin prick test due to patient death during test. nice, eh? I am sure we will skin prick for milk as well. It will be very interesting to see how the milk goes.

If we do have a negative milk skin test then we will be slowly introducing milk. When I say slow, I mean SLOW! As in with a medicine dropper. (some allergy history on side bar of blog for those new to our story)

All of this is uncharted territory as there is no documented cases of this ever happening before. Mickey's allergist has consulted with the best allergists in the nation and they have never encountered anything like this before.

However I do have a "friend" from the UK that I found on Facebook whose daughter has experienced the EXACT same thing. Its amazing how similar life experiences can pull together two strangers on opposite sides of the world.

I am also dreading the emotional aspect for myself. I get sick to my stomach thinking back to the last few times Mickey had his blood drawn and how terrified he was. He panics. I feel so bad for putting him through this. I tell him it is so we can learn more about keeping him safe. I also am dreading the emotional aftermath of having to bring the allergy stuff to the surface in my mind.

Really... I am doing okay with the food allergy stuff, its the latex allergy that totally freaks me out.

Actually, I wish I could go back to just dealing with food allergies. I don't want to diminish how exhausting and scary food allergies are, its just that the latex allergy has hit an emotional nerve with me that has been unprecedented.

I am a researcher. Not a professional one.... just a junkie:) My husband describes it as "analysis to paralysis". Whatever topic I am faced with, I scour the Internet, invest in books and track down other people to hear their experiences. But for some reason, I just can't deal with this one (latex allergy). Every time I would start to delve into gathering information, I would just fall apart. I ordered several books on Latex Allergy and gave them to my husband with strict instructions to HIDE them for me. I put him in charge of the research and I just ask him questions as needed.

So yes, I am a bit like a turtle with my scared little head tucked inside of my shell and tomorrow I have to bring it out and face reality. And I REALLY don't want to.

I do have to deal with it in small amounts on a daily basis. Like today I took Mickey to the dollar store as he had earned a whole dollar for helping clean up the basement. He asked me about 50 times when we were in there, "mom is this rubber?" I felt so irritated. Not at him! But irritated at the fact that my little guy has to be so careful and ask..that he can't just be a carefree child!

The dinosaur he desperately wanted--one that grows when placed in water-- felt very rubbery and I told him he could spend his money but that I would have to call and find out what it is made of. That will take weeks to get an answer.. if any answer comes. I have been waiting over a month on some of the things that I have called about... ( pharmacy syringes, elbow pads for biking, JC Penney shirts with dinosaurs on the front.)

The saddest was today when he begged me to get him a new John Deere shirt but they all had the rubbery print on the front. Its hard to keep telling your child no because of his allergies. I tell him "no" all the time just for discipline, that it breaks my heart to have to do it way more because of rubber items all around him.

I found myself feeling frustrated tonight with the kids and short-tempered... followed by waves of guilt. I sat down to analyze my emotions and I realized that I have anxiety about the Dr. appt. and frustration with the complexity of the latex allergy and how much it controls our life.

This week started out badly allergy-wise.

Hubby and I are teaching Sunday School for the summer and I poked my head out of the classroom to see if I could get sense for how soon the service would be over. I saw several kids toting latex balloons and my heart nearly leaped into my throat. Having balloons in a closed building has been extremely dangerous for latex sensitive individuals. I know to avoid them, but what to I do when I already have my child IN the building?

We kept Mickey in his classroom until we delivered all the kids to their parents and then left quickly out a side door. Hubby and I talked on the way home from church--our hearts heavy and sad. We discussed how we needed to approach the leaders of the church with our situation so that we were not in a dangerous situation again.

Having to involve other people with our child's disability is very hard for me. I feel sick to my stomach just thinking about it. Nobody wants to be the one to inconvenience other people or cause more work..or worse yet...I fear that others will resent my innocent child.

I wrote a letter to the Executive Director of our church and explained our situation. He was great about it and promised to see it through so that we could have a plan in place. We of course are not asking that our church become Latex or Balloon Free, but that if balloons are going to be present that we be informed.

I know that this has been a bit rambling and all. But I want to include this stuff in my blog as this is our life. More importantly, I want this to be a place where others with allergy issues can come and find solace in not being alone. There have been several times that I have read on blogs that have described their heartaches and sorrows with food allergies and I have literally wept with them.

That is why I started this blog. We need each other, and we need understanding from the "rest of the world". And the rest of you probably know the heartache of wanting a "normal" life for your child!

There is so much support for Food Allergies, but absolutely NOTHING for latex allergy. I know that there are other families out there calling every single manufacturer like I am and how sweet if could be if we could join forces! So do me a favor and pass this blog along to anyone you know that deals with food or latex allergies!

Meanwhile, keep us in your prayers tomorrow!

2 comments:

Anonymous said...

We have been covering you all in our prayers..praying for wisdom for the Dr., Mickey's skin pricks and a spirit of calm and peace for you parents. Everyday we pray for God's protection from allergens and that He would graciously give Mickey the miracle of healing. We serve an awesome God and we praise Him!!

Anonymous said...

T - 'm so sorry your heart is heavy. I wish I could take all of this pain a way from you and Mickey :)
God knew before Mickey was born what his journey would look like and knew you two would be equipped as parents to guide his steps in freedom - in spite of the many restrictions he faces each day. What a gift to Mickey - he is learning at a young age freedom is resting in jesus and not the daily stuff of wearing and playing with any type of toys he wants!
We serve a God bigger than our questions and heart aches. I have no doubt this journey will be used to Glorify God - as all pain is used in our life for Him. No heart ache ever goes unwasted. Life is not about us - it is about God.
Life is hard and gross at times and it is so hard to remember life is not being comfortable and keeping others comfortable. Don't EVER feel quilty for asking people to adjust lifestyles for Mickey. You are his addvocate and stand tall!!
Sweet hugs to all of you!!