Tuesday, September 29, 2009

Here We Go.. Again.

Ever feel like life is throwing so many things at you that you can't really catch your breath in between? Right now I am a sorry sight. I look like I am carrying the weight of the world on my shoulders.. and I feel that way too. I don't even have to look in the mirror to know that my eyes are red, puffy and smeary.

Mickey has hives. Bad ones.

I woke up in a happy mood and excited to start the day with my sweet little mousekins. During breakfast I noticed that Micky had a red splotch on his neck. I assumed it was nothing but out of habit of being overly cautious about hives, I lifted his shirt and literally watched his back fill up with hives. I had Benadryl down his throat so fast it would make your head spin. The Epi-Pen was looming nearby but thankfully remains unused--for today. I called mom and dad and they rushed over in case I was needing to call an ambulance. The hives covered his body and remained for most of the day.

I was sick to my stomach as I try and process what our/his life will be like with more food restrictions. I try and reason with myself that sometimes kids get random hives. And I pray, pray pray that this is all it is. His hives eventually totally cleared up and I was breathing a little easier. Then tonight just as the my Ladies Bible Study group was finishing, my husband summoned me and my heart dropped. "Hives?" I asked tentatively. Of course.

Mickey was almost due for a new dose of Hydroxizine which is a high powered antihistamine. We will be on night watch to make sure that his lips and throat do not swell.

It will be a year ago next week that his allergies took a weird and wild spin and has been crashing down hill ever since.

First the recurrence of the milk allergy, then in January, daily hives, then high fevers and hives, then anaphylaxis (life-threatening reaction that restricts breathing). So here we go again.

And of course I am still wading through the difficulties of having my own illness which complicates so much. I am coming into this new issue already weary.

I had an appt. with my MD a few weeks ago and she went over the Neuro report with me. I told her my concerns about the testing that was done and how it reported no muscle twitches but continue to have them every minute. I am sure that it has crossed your mind if I have lost mine and if this is all a figment of my imagination. I wish. They are very visible when watching closely and have woken up my husband in the middle of the night. Anyway, the Neuro report basically says that I have a Neurological Disorder. Most Likely Benign. That gives some comfort but leaves much room for panic. It has been going on for 3 months now. Its exhausting knowing something is wrong but not knowing how bad it will progress. My Dr. would like me to get a second opinion at the University of Iowa. I am also seeking some alternative methods called Integrative Medicine.

Back to Mickey. Knowing that we have tests upon tests ahead of us and major food restrictions will be very hard on him. Due to what he was eating we will need to avoid oats, wheat, flax, and rice.

uggh!

It was hard already today. His hot dogs contain wheat, his "butter" contains flax... my head was spinning trying to figure out what to feed him without letting him be aware of how restrictive it was.

Its hard when I just want to sob and cry and pray, but must be a strong mommy and present a strong and unconcerned attitude. I know he takes his cues from me so I want to be strong for him, yet real.

I realize that I was avoiding writing this post all day even though I started this blog as support for allergies. I actually hate writing depressing posts and would much rather write entertaining and fun posts. But over and over I get "referrals" for moms that have just been told their child has a severe food allergies or has random hives. I am thankful that I have been able to help others and it is because of how I have publicly shared our experiences. And I am so thankful for all the other "allergy moms" who share their experiences as that has been a huge resource and community for me.

Last week I was talking with another "allergy" mom and we both confessed that sometimes we feel a little jealous of "normal" families, and wonder what it would be like. Yet we both know that even in our circumstances we have tremendous blessings. I told another "allergy mom" the other day that sometimes I just go back to the basics to focus on what a blessed person I am as dealing daily with the difficulties of allergies can definitely crowd out the feelings of gratefulness.

I thank God for clean drinking water, for Salvation, for friends and family, for a roof over my head, for medicine, for hospitals, for technology that allows me to research and grasp what I am dealing with. The list can go on forever and counting my blessings is the only way I can keep my head above the water.

Well, I must get to sleep as this will be a fitful and anxious night. I know I ask for your prayers all the time. And really, I am not usually this high maintenance, but we have just really had a tough year. Hopefully, maybe, some day our lives will return to a not-so-dramatic state. I can't wait.. but until then... help me press on!

7 comments:

Wee said...

Tricia and family,
First of all, please know that you are NOT "high maintenance." Thanks so much for sharing! We want you to know that we will be interceding on your behalf. I like how you phrased your journey..."pressing on." So true. We're with you along the way.

Kirk and Keri Plattner said...

Thanks for sharing Tricia. We will pray!

amy said...

T - God is carrying you. He never lets go of you. And you know I'm here 24/7. You are a wonderful mom and God will bless you greatly - even if its 100 more years of bad days!! God doesn't see bad days for us but days of opportunities to rest in him - and for me - sometimes he just keeps giving me more than my share of opportunities to keep running back to him. i love you. xoxo

Jen said...

I'm so sorry you are having to go through all of this. I know this isn't even close to being the same thing, but I have a puppy with awful allergies, everything makes him break out into hives. I'm frustrated and at a loss trying to figure out what he is allergic to. I can't begin to imagine what you are going through with your little boy.

Thank you for sharing this with us. You and your family will be in my thoughts and prayers.

Anonymous said...

Just wanted to let you know that our Bible study group prayed for miraculous healing for Micky tonight. We love you guys soooo much! Stay strong!
Auntie Jane

Rochelle said...

I'm so sorry you are dealing with this!!!! Praying for you and Mickey!

Jamie Kaufmann said...

wow, it's a small world. i just got your comment on my blog. i need to pop over here more often. you write some great stuff! i definitely want to hear a report on the allergies and on you. i also dealt with some health issues myself this past year and it made food allergy life much harder. i'm just rambling but i think your blog is great! :)