Happy Holidays

I thought I might amuse you all this holiday season with a few other JibJab creations…ENJOY!

Oh, and one more because I LOVE Weird AL!

Have a very safe and awesome Holiday!

Unprepared and Full of Regret

On Friday December 18th, I needed to take my son to the doctor to get a sports physical. Whenever I have to take Simmi out to the store or anywhere else, that nagging fear of what is lurking on the floor or in some seat cushion is always plaguing me. I’ve learned to live with this fear for well over a year and at times I’ve been criticized or looked at weird when I explain that Simmi’s severe food allergies keeps us from attending some event, playgroup or even the thought of attending preschool in August 2010. Going out of the house is a major anxiety event for me each time I pick Simmi up to put her into the car. Questions always enter my mind “Who sat in this shopping cart before her? What was that kid eating? What was on his or her hands that they may have transferred onto the surface Simone touches?” If I go to a doctor’s appointment for her, on the way I’m wondering about the mother who lovingly brought along a snack for her toddler consisting of Honey Nut Cheerios, cheddar cheese Gold Fish, poptarts or anything else that is convenient and will keep a little one satisfied and happy. It seems so unnecessary to have those things swimming around in my mind, but I can’t help it. I worry about these things constantly, always being on guard for that stray peanut or other product that could harm or even kill Simone.

When we go out there is always a set of eyes on Simmi. Whether it is me, Dom or one of my kids, someone is always watching. We arrived at my son’s appointment and Simmi was running around being her cute self. My son Noah was faithfully keeping an eye on her as I filled out the paperwork for his visit. I was unprepared for the events that transpired shortly before Noah went in to the examining room. You see, I let my guard down. Whenever we enter a store or anywhere unfamiliar, I always scan the place with my eyes looking for that “thing” that could cause Simmi harm or death. I didn’t scan the doctor’s office. We walked into that office, I got the paperwork and just started writing. If it wasn’t for Noah’s loving attention to detail, our situation may be quite different. Neither Noah nor myself noticed that there was a vending machine located in the corner of the waiting room. It was the kind that dispenses candy when you put in a quarter, you turn the lever and grab the candy by the handful. This thing was filled with three different types of candy, one of which was Peanut M&M’s. Simone had wandered over to that machine which had a few M&M’s sitting in the tray just begging to be picked up and tasted! Who was she to argue with the small roundish brightly colored object? She’s never even seen a Peanut M&M before. Noah had turned around for just a second to look my way and when he turned back to watch Simmi, he noticed that she had something brightly colored in her hand AND she was just about to put it in her mouth. He ran across the room as fast as he could and his quick movements caused me to look up to see what was going on. I looked on in horror as he removed the peanut M&M from her hand and threw it in the garbage. At that point I quickly got up and started to walk across the waiting room…but this little toddler of mine was quick! Before I even got to her, she spotted another M&M on the floor and picked that one up too! I was in panic mode. Both times she picked up the candy with her left hand, so I grabbed her and held on to her left hand so she wouldn’t touch any part of her body or put her hand in her mouth. Now the receptionists were staring at us trying to make heads or tails of the events unfolding before their eyes. I rattled off to them all her food allergies and asked for the bathroom so I could wash her hands, but when I got into the bathroom, there was a pump container filled with liquid soap. Still holding her and now also trying to read the ingredients on the back of the soap container, one word stood out in the ingredients “Cocamidopropyl betaine” which comes from Coconut oil. Normally we wouldn’t be concerned with this product since she used to eat quite a bit of coconut oil, but after she had a violent reaction to coconut oil last weekend and because she is now highly allergic to tree nuts, I could not expose her to the soap! All of this was happening so fast that I wonder how I was even able to think properly. I quickly came out of the bathroom and asked Noah to get her wipes out of the diaper bag. I must have used five wipes just on her one hand. Was I over reacting? I had regret racing through my heart, and I was inwardly chastising myself for ever letting down my guard. I wiped off her hands…and mind you, this is all taking place in a matter of three minutes (it felt like an hour!) and all the sudden out comes the welts. She starts scratching her left hand and now she has a bright red rash traveling up her hand and arm. I alert the receptionist that I need Benadryl and I’m kicking myself in the pants now for NOT putting it in her diaper bag the one time we needed it most! Does the receptionist bring me benadryl? NOPE, she brings me cortisone because they don’t have any Benadryl available. I could have gotten mad at her, after all it is a doctor’s office…but I was super angry at myself for not taking the proper precautions in the first place. All I could do was hope that it was just a rash that she would get and stay armed with Epi-pen in hand. The rash traveled up her arm and before the end of ten minutes she was covered from head to toe in a raised red rash. All I could do was look at her like she was a bizarre science experiment. I felt helpless and so unbelievably guilty. We left the doctor’s office, I drove Noah to school and when we got home Simmi ran straight for her room saying “ba ba” “ba ba”. I tried to give her Benadryl but of course she is totally freaking out and screaming if I try to get it into her. It spills all over the place with only a very small amount actually swallowed. She fell asleep in less than five minutes and I sat in the dining room with the monitor turned up as high as it would go just so I could listen to her breathing. Simmi was so exhausted she slept from 11:30am to 4:30pm. I sat with the “shouda, coulda, woulda’s” running through my head.

After she awoke from her long nap, I went in to examine her body and the rash was still there, but so where a few other things that I haven’t seen since she had a severe reaction last year…purple little spots on her chest which happens when she has a severe allergic reaction. She’s OK now, but all that day and into the night Dom and I sat there staring at each other, reminded of just how serious her allergies are. We started going over action plans again, discussing the new things that can’t be brought into the house like Duralogs for the fireplace (they contain nut shells), or real pine wood because of her allergy to pine. It feels like our world is closing in around us as we must continue to do things that will safe guard her well being. Our home has now become completely food allergen free as well. We do not bring anything into the house that contains peanuts (that was always a rule), wheat, milk, soy, eggs or tree nuts. At her allergy appointment when we got the results back from her RAST, we realized that there is a good possibility that even cooking foods that contain the things she is allergic to, could be breathed in by her and caused her levels to increase to an alarmingly high level.

With her speech and vision problems complicating things more, we are hopeful that in time she will be able to communicate with us and let us know when she is starting to feel some sort of reaction coming. All I can do at this point is learn from that experience and always stay on guard and alert without making her feel like the world is a dangerous and unsafe place to live in.

Here are some photos I took of her after her first rash from our dog. Three days after those photos were taken, the outer skin on her nipples started to fall off:

What’s That in Your Foot?

Before I talk about my hair woes, I wanted to put a picture up I created of me and Eric. I am a HUGE True Blood fan, and I’m really mad that HBO has been keeping me in suspense since I missed the last three episodes of the second season! It feels like its taking forever for them to just get through that first season of reruns. Anyway, Eric is one of my favorite characters from the show and I am posting this picture for my own absolute enjoyment. LOL

OK, Over the last month my hair loss has seemed to go into remission again. I say that with hesitation because it typically takes about six months to know for sure a person with alopecia is in remission. After keeping the swamp cooler off for three months, my circled patches started to grow back in and my hair started to fill out. Its coming in quite nicely again, with very little permanent loss. After shaving it off about three months ago, I had it in my mind to never try and grow my hair out again. It will never look or feel the same as it used to and it would be necessary for me to get some sort of hair system to make my hair look semi normal. I’m not into hair systems or toppers, and I only wanted to get a wig for days that I felt like mixing it up a bit. So why am I growing it back this time around? Well, about a month ago my scalp started hurting very bad. As I’d bic it, it felt like the razor was dulling with each stroke against the scalp. By the time I’d be done shaving it, my head felt like it was on fire and I’d end up nicking my scalp pretty bad. I don’t need any new interesting designs on my beautiful bald head due to razor scars! So I laid off the razor for awhile. As November came and went, it perplexed me as to why my razor would dull so bad and my head hurt like a million needles were being pierced through it.

One of the lovely side affects for some individuals living with Alopecia Areata (in its many forms) is the possibility of growing what looks like translucent hairs. To the ‘lucky’ people that have to deal with this strange phenomenon it is almost surreal to view. Guess who has these hairs growing in? Yup, yours truly. It isn’t a pleasant experience for me to feel them coming through my scalp, nor is it any comfort to feel them on my head. You see, they are like hard plastic strands of see-through hair. Ever hear of see-through hair? They shimmer when light is cast on them…they feel like freshly laid astro turf! There is nothing soft or pleasing, feeling hair you can’t even see. And these rogue hairs are dangerous too! I’d like to share an unbelievably true story that takes place in my bedroom just a few short weeks ago:

Picture this…it’s nightfall and all is well in our house. I settle into bed and Dom comes in the room and is walking around barefoot. All of the sudden, he starts to limp. “Ouch!” He exclaims as he makes his way over to the light so that he may better view the “thing” that has pierced his foot. He looks but doesn’t see anything. Then he says to me “Can you look to see what’s stuck in the bottom of my foot? I think there’s glass in there!” He limps over to me and puts his foot up on my lap. I look and look, and at first I didn’t see anything. I moved his foot closer to the light and I said “Yes! You do have something in your foot.” It was glass like in appearance but thin. I reached to pull it out, and I realized that it was one of those damn rogue translucent hairs! Oh-My-God! It went half way into his foot. I pulled it out and said “Its one of my HAIRS!” He said “No!” and I gave it to him so he could see for himself. My translucent hair is like shards of glass piercing my lover’s foot. How bizarre is that? Now imagine if my hair can do that to the tough underside of a man’s foot, what is it doing to my scalp?

At that point I realized why the blade was dulling on my razor so quickly too. You try shaving something that feels like thick hard plastic strands and see how far you get! The thickness of these hairs is also not the same as my regular hair…its thicker! I’ll be laying off the razor for a while until I don’t have any more pain, but I’m going to have to find either a very sharp industrial blade, or let it grow. I don’t even know how well an electric shaver would work at this point. I love being completely bald, but I can’t risk at this point damaging the skin on my scalp either.

The other issue I have with my hair now is that with these translucent hairs coming in, it looks like I have less hair than I really do. I can’t use conventional hair dyes because they trigger my autoimmune response and they don’t grab the white hair (another lovely part of alopecia) very well. I’ll have to try a henna dye in a dark brown. I’m unsure whether the white hair and the translucent hair would hold color with henna though. I know it would work for my gray hair (I have plenty of those!). I guess all I can do is try huh?

Bald Beauty of the Day

The Sensitive Souls Network

Before I talk about The Sensitive Souls Network, I have to update you all on my “writer’s block” because maybe I wasn’t so honest about my problem. I believe that I hit that middle aged “wall” (crisis of sorts) and I’ve become quite introverted and introspective. I guess that comes with the territory of getting older. I know I’m being cryptic at this point especially since there are MANY things that I would just love to spill my guts over, but it would be in incredibly bad form to do so.

We’ve been here in New Mexico for one year now, and I must say I truly love The Land of Enchantment. I took a trip this past weekend back to New Jersey and I couldn’t wait to get my ass out of there and on a plane back home. There were only four things great about that trip and it had NOTHING to do with being in The Garden State! I got to visit with my daughter, spend some travel time with my son (who came with me to NJ), I got to meet up with a good friend of mine and spent some time with my dad. That’s it! Beyond those things, there was absolutely nothing redeeming about being there. My patience and tolerance (this past weekend) of extremely self serving people is wearing extremely thin (of course I’m being cryptic again!) and I find I now blame myself for creating any assumptions of decency in these types of people…there really is no decency at this point. I really kick myself in the ass for wanting to believe that certain people I’m in contact with are generally good in nature, when in fact I merely allowed the illusion of them being “good” to cloud the truth of the matter…they are self serving, ego-vested, mean people to the core of their being, and no matter how much they want to cover that up with “appearances” they will always have to live with who they are! The experience of my shattered assumptions was enough to make me sick to my stomach. Not because they made me sick in the least, but because I allowed such “good assumptions” to exist in the first place. What does that make me? A sucker? Yup, I’m a sucker! I duped myself into believing things that were only half truths and partial realities. BLAAAA! Introspection is a bitch. But I’ve learned some very valuable lessons about myself and I feel I’ve grown quite a bit as a result of it. That was just a little update on my own emotional state of affairs. Now I’d like to switch gears and tell you all about something I’m pretty excited about:

I’ve been busy building a new social network that I just launched. It is a Network for families with disabilities. I announced the launch on my other blog site Loving Simone, but I’ll also copy it here.

In March 09′ I created “Loving Simone” as a way to reach out to others who may be struggling with the same types of health and neurological issues Simmi is faced with. I also joined several different message boards, groups, listserv’s, as well as social networks trying to get a handle on what was happening to Simone. What I found were some of the most generous and beautiful families struggling to give their disabled children a better life. What I also discovered was that all of us are so scattered across the internet in little micro groups and categories without any place to connect us all.

There are parents out there that may have children suffering with a single food allergy and others on the other end of the spectrum holding on for dear life as their child struggles to live just one more day. No matter how mild or severe the problems are, we need to gather strength from one another and blaze forward in search of the answers that we seek. I believe that The Sensitive Souls Network can be a tool in connecting us with one another easily. I created this Network to be a stepping stone to providing a better quality of life not only for my own grand daughter, but also for all children suffering with a disability.

Reaching out to parents who may have a child with problems but is undiagnosed is another important goal that is very close to my heart. Parents often feel very alone as they take their child from one doctor to the next trying to figure out what is wrong with him or her. It’s frustrating to say the least, and when a child doesn’t fit into any one diagnosis OR has multiple unrelated health problems, parents can feel “left for dead.” I want this Network to be a place of comfort as well as a way to receive much needed resources, wisdom from experienced parents, and a place to grieve if necessary.

I was going to wait till the new year to launch The Sensitive Souls Network, but as I thought about it, I realized that this Network will always be a work in progress with new things to be added daily. The site is kind of empty right now and I still have a lot of resources and information to add, but I would like to open it up and invite you all to become members. Its free to join.

Here are some of the features I put in place, and there are more to come in the future:

• Personal profile page- You can set up your profile to let others know who you and your child are
• Blog- Blog as little or as much as you’d like. The thing I love about this feature is that it can help chronicle your life and keep everyone updated about how your child is doing (or you). I’m a part of a few different message boards, and when others inquire about Simmi, it can become frustrating to try and retell a story over and over. With your own blog on the Network, you’ll be able to write it once and then refer others to your blog about what’s happening so you won’t have to retell a story multiple times.
• Groups- You’ll be able to create your own groups and/or join an existing group.
• Forum- I’ll be adding the Forum in the next few weeks
• Video chat- You can start a private video chat with other members or simply instant message them
• Add photos and videos

Here are some things still to come and in the works:

• Resources
• Main chat room
• Facebook application- you’ll be able to keep your peeps on Facebook up to date with your latest blogs as well as signing in to the Network through Facebook
• Lots more!

As I said earlier, the Network is a work in progress. I value feedback and suggestions! If you have a link, resources or information that you feel would help add to the site, leave a comment on my profile page or send me a private message there.

http://www.sensitivesoulsnetwork.com

Thanks for reading!