Food Allergies Suck!

I guess I should say allergies SUCK! And so does asthma!

So I know I haven’t said much about what has happened to our sweet Josie on this blog (in the past). I have promised an update or story but never really did it. It was too hard for me to travel back down that road and re-live the events that occurred. It was emotional and terrifying. But most recently (a few days ago), we had her retested and this was my update:

At 9 months old she had an allergic reaction to diary and eggs. And days away from her 2nd birthday, she had an anaphylactic reaction to dates and cashews (tree nuts). I almost lost her that day (I’ll always and forever be grateful for the love and friendship of Shantel Brock-you are an Angel). While her lifeless body lay in the hospital bed and her lips blue and her lungs trying to pull in all the air they could, I lost myself that day. Since that moment, I’ve never been the same. I’m scared at every given moment. No one TRULY understands. It’s painful. Not only does she suffer, but I do too. I always try to get out with other moms to get Josie to play with others but most people don’t know that I suffer in silence. I worry. My anxiety has turned into panic attacks. I make myself sick. I worry about too many kids with too many food items and not being able to watch her every move. It’s literally drove me insane. To the point where now I am seeking help to be the best mother to her. Because that’s all I want. I want to be normal, too. I try to stay strong for her. It’s hard. And no one can tell me anything that will make me feel better. Only a parent of a child with allergies can explain or relate to the never-ending fear that lives inside. The nightmares. The “what ifs” that seems totally ridiculous (to most people). Well, my little girl got blood tested after her near death experience and PICU at children’s hospital (over a year ago). And the results were shocking. Almost unbelievable. And here we are, more than a year later with high hopes that maybe, just maybe something has gotten better. Maybe something she was able to out grow. I finally found her a fantastic allergist. Who sat with me today for 4 hours ya’ll! 4 HOURS!!!! Why? Well, here’s the story: I made the appointment because my sweet girl starts school in August (Pre-K). And also because I’m tired of harboring her from play dates. I make up excuses but never want to blame it on her allergies. Really, it’s my worry (is what I keep telling myself). I just want her to get out more! The allergist and I sat there and talked about blood vs. skin testing. Skin testing is much more able to tell you the truth rather then false positives. Her blood work could have very well had some false positives. The doctor and I were positive and sure that that was the case. She asked me if I wanted the “tree nuts mix” or each separate nut tested on her skin. I asked for each separate. We tested, dairy, egg, tree nuts (all), peanut and chicken via skin test. Prior to this we were both so excited that she may be able to try COOKED dairy and egg (it changes the protein), and she may eventually out grow this. Skin test usually take about 20 minutes to react. Josie’s took 20 SECONDS! Yup…you read that right! 20 seconds! My poor girl came back positive then ever to all the allergens that she once tested positive to. Only this time it was actually worse. The doctor lost hope at that point. Her face said a thousand words. Her voice changed. She seemed truly concerned. I asked if we had to go to the ER? Was it THAT bad? She said it was pretty bad but we would keep an eye on her, give her benadryl and all that we spoke of earlier was out the window. No cooked dairy or egg. No trials. No reintroducing foods. She even mentioned that the likihood of her outgrowing this is not likely and won’t be tested again until she’s 5 years old. My heart sank. I can’t help but feel immense guilt. What did I do to her? Why? What happened? I made her, why can’t I fix her? I tried to keep my composure so Josie wouldn’t read my emotions and get even more scared. The doctor knew it was happening…I lost it. If I could do ONE thing in this world it would be to take THIS away from her and give it to myself. I’d do anything to make this go away. So the entire point of this post? Well, because some people don’t take Josie’s allergies seriously. THIS FOOD IS POSION FOR HER! It’s immediate and it’s DEADLY! IT IS POSION! IT CAN AND WILL KILL HER! And I hate when people say “oh just a little tiny bit won’t hurt.” Or they let their kid sip on my kids cup (well, your kid just ate a cookie that contains eggs/dairy, whatever else). People don’t realize the seriousness of contamination. Did you know that when I almost lost her more then a year ago, she ate a teeny, tiny bite of a Lara Bar (dates and cashews)? Tenny tiny! That’s all it took. Seconds went by and BAM…ambulance, ER, PICU and almost intubation. FAMILY, FRIENDS: PLEASE, PLEASE, PLEASE take this serious. I can’t bear the thought of anything happening to my baby as long as I’m living on this Earth. I NEED you to understand the seriousness! I NEED you to respect my wishes. Understand why I clean like I have OCD! Because there ARE allergens in our home. THIS is why I have a hard time getting out. THIS is why I have a hard time meeting other moms and getting my child to play with others. She’s a great kid! She’s super sweet and smart and LOVES to play with other kids. I just don’t want to be the mom that looks like I’m crazy, or hovering or nuts. The PTSD from almost losing her was and has been hard on me. The nightmares still happen. It could be why my panic attacks are at night, randomly. I wake up crying some nights re-living that event. The images just don’t go away. So although I’d LOVE to meet up and have my kid play with a ton of other kids. I just can’t because of me. I’m grateful to the friends and family who understand. Who truly know that one teeny tiny bite can kill her. Who respect my “craziness” and know I’m not insane. I love my daughter. And without her, there’s no me. Everything I do and don’t do is for her (them). Below are the pictures from today. They are heartbreaking. They are scary. They are what they are. My girl is happy and healthy. What she eats, is all she knows. She doesn’t eat junk. She’s doesn’t live off fast food, she just eats to live…she doesn’t live to eat. We live in a society where eating is all part of socializing. So with me having celiac disease and Josie’s food allergies, we don’t get out much. And it’s sorta depressing at times. It’s a lot of work to leave the house to go somewhere. I always worry about what she will eat…what I will eat…it really IS exhausting. So this is the truth ya’ll. THIS is why I am who I am. Josie NEEDS a mom like me who is hypervigiliant. I am her mother and her advocate. Please understand…my daughters life is priceless to me.

***The top left is PEANUT. The bottom left is CASHEW (what she had a reaction to in the Lara Bar a year ago). To the right is Chicken, Egg and Milk (top to bottom).

After thinking about this for the past several days/nights, I’ve determined that I’m not stopping here. We are going to see another allergist next Thursday. I want more done. More testing. Most opinions. I can’t stop and won’t stop at “well, we will re-test her again when she is 5-years-old.” At first that was okay. But the more I think about it…no! I am not done! What can we do?! There has to be more! I want blood work done. I want it all. I want her asthma reassessed. People seem scared to touch her. Tell me what to do-I’ll do it!

Pregnancy Bumpdate UPDATE

So as some of you may have noticed, I haven’t posted my “update” of my belly in a while. Well, it’s because I’ve decided to stop. Maybe I’ll regret that or maybe I’ll pick back up again to get one more photo before Juliette comes, who knows? But the real truth behind it is so much more…

Some of you look at this blog and think my (our) life is so great and flawless. It is far from. I never wanted this blog to portray such a thing because in all honesty I wanted it to be something I could reflect on in the future to see “how far I’ve come” or “what I’ve been through”. And look at milestones my kids have been through. The most detailed I really ever was in my posts were the posts about my dad and how much he’s destroyed me in different ways or how he’s damaged my inner child. Some of you know the story, a lot of you don’t.

And some of you really know me (and what I’m going through now), and a lot of you don’t. It’s not always rainbows over here. So I thought I’d be completely honest and tell you exactly how it is or has been these past 34 weeks (or more).

We tried so hard to get pregnant after Josie. Miscarriage after miscarriage after miscarriage. God had HIS plan. Which I think worked out well because I’m not sure having a newborn when Josie is even THIS young is a good idea, but God made it happen so he must believe in me some way or another (that I can do this).

I was sad because I couldn’t get pregnant. I was sad because I wanted another baby. Preferably another girl for Josie to have a sister and lifelong friend. I feel like I’ve spent so much of my recent life just not being happy and never living in the “moment”. Living for the next day…

I have always hated facebook in the sense that it reminds you in so many ways what you want, don’t have or what you wish for. But in reality, not everyone has perfect candy coated lives. Because if you look on my Facebook page, you’ll see only certain things posted. You don’t see the good the bad and the ugly. You really truly only see the good. And that goes the same with everyone else. I don’t know if the person who looks like they’re in complete bliss in their marriage, is really struggling to keep it together or if they are in counseling trying to “make it work” with their spouse. Who knows? These are just examples.

I guess, basically what I’m trying to say is that I have been struggling for quite some time. I would honestly say since I stopped running, working out, exercising and feeling incredibly independent. I feel like I lost myself. It all happened after Josie was born. Not that I don’t think my life is complete or fulfilled by the most amazing little girl. I do, please don’t mistake what I’m saying here. What I’m saying is that motherhood changes you. Well, it changed me. It changed the chemistry in my brain. It changed how I look at life. It changed how much I worry, sleep, rest and eat. It changed how I take care of myself. It changed every single aspect of who I am. It has made my anxiety feel like it’s high on cocaine. And quite frankly it has been incredibly exhausting. I sat inside the house for 19 months while I pumped breastmilk to feed Josie. I barely left and made excuses constantly. And when we moved to Florida, I swore I’d get out more. But with my preexisting anxiety disorder I had prior to ever having children, I found it very hard to calm my mind. It raced at every angle. Every thought. I slept with one eye open. I worried about foods to feed Josie, nap times, pump times, working, my marriage…blah, blah, blah. The list is endless. But the difference between me and other moms (who may say this is completely “normal”), is that my thoughts sometimes weren’t normal. Actually most of the time, they weren’t normal. Sometimes they were so completely and utterly ridiculous that even I noticed they were ridiculous but I just couldn’t shut my mind off from it. I couldn’t stop the thoughts. And I still can’t. They are slowly killing me. These thoughts ultimately smothered me and still are today. I feel trapped. And it’s getting worse daily. I feel like something is crushing my chest in…an elephant on my chest. I feel isolated. I feel tired but hyperactive. I feel happy but sad. I feel like I’m out of my own body. I can’t help but ask, “what happened to me?” I’m a rollercoaster of emotions.

Not every day is like this…

I have my good days…

But my bad days really do out number the good.

I was so truly happy during my first pregnancy. Comfortable? No. But happy? Yes.

With my second, I waited for those happy feelings. The first trimester went by and my anxiety grew. The second trimester came and the worries and depressed thoughts took over my brain like flies on hot Texas garbage.

I tried to force happiness. When you’re pregnant and your belly reaches the point where it’s obvious to everyone else that there’s a baby in there, that’s when everyone starts talking to you about it. Asking you questions…

“is it a girl or a boy?”

“is it your first?”

“are you excited?”

No one wanted to hear why I wasn’t excited. No one wanted to hear me go on and on about how we tried and how I spend every day in fear. No one wanted to hear how I would obsessively look every time I wiped after using the bathroom to see if there was blood (again). No one wanted to hear how stressed out I was because my husband was gone for two weeks straight every month, my two year old toddler spent her second birthday in the ICU because of newly found severe food allergies. No one wanted to hear how stressed I was that I was sleepless and restless, my mind was racing, I was thinking ridiculous scenarios in my head and that my toddler decided to turn into a monster overnight with her random extensive tantrums over absolutely nothing.

No one wanted to hear the stress of moving, having no family, no friends near and no support system. Or that I didn’t have an adult conversation on most days. No one wanted to hear that I have PTSD and horrible worries about Josie going outside, going to different places or even “what if something was accidently added to that cereal that I trusted?” Every time she has an itch, I jump. Every time she gets a bump on her I’m reaching for the Benadryl and contemplating the ER. Is she having a reaction? Did she eat something she shouldn’t have had? Did she get bit outside? I’m like a shadow that follows her every move and it’s exhausting. The worry I have for her daily is enough to drive a person insane and that and so much more has put me at my breaking point. And I can’t turn it off. It won’t stop.

I am mentally and physically exhausted. And not the normal type of pregnancy exhaustion. People always say “oh it’s the hormones, girl, you’ll be just fine afterwards.” But most of you have no idea that I struggled with anxiety pretty bad before pregnancy. Before Josie. Before college, during college and afterwards. I don’t think I was ever depressed but the two really do go hand in hand. And for the first time in my life, during this pregnancy, I can honestly say that I AM depressed. The worst part is that people look at my life and say: “well look at all you have to be happy about”. “You have a beautiful daughter, your husband is so amazing, you have a big huge house, you can buy anything you want…” Or THE WORST: “you just need to relax.” It’s NOT about that. People act like I don’t try! I don’t WANT to feel this way! I don’t WANT to think this way! I don’t WANT my heart to race constantly!

It’s about inner peace. It’s about waking up and not wishing it was bedtime already. It’s about enjoying the day not staring at the clock waiting for the day to end. It’s about not being aware of the day of the week rather than counting down the days, weeks or months until this or that, etc. Every single morning I want to pull the covers over my head and sleep. Sleep through the first, second and third trimester. Sleep through these thoughts and worries and crazy thoughts. Sleep through this anxiety. Sleep through the time my husband is gone. Sleep through the move. Sleep through the unpacking. Sleep through the birth. Sleep through the first month…

I did realize I had a problem. I realized a long time ago. I tried to talk to “friends” and “family” but it was all the same…”just relax, Stacy.” No one took me serious. No one took me serious when I really thought “life would be better if I was no longer in it.” No one took me seriously when I’d have a meltdown and tell them my thoughts. That I was struggling pretty bad. No one really took me seriously. No one REALLY understands. They see the “happy Stacy” and think, well she’s just “moody” or “having a difficult day”.

Those things are normal (to a certain extent), I get it. But what isn’t normal is crying every day. Or being short fused at pretty much anything. Or saying the most crazy stuff and looking back and thinking “what the hell was I thinking?” Or thinking, really, really thinking that everything and everyone would be better without me in their lives. Or contemplating in your head whether pills or using a gun would be easier? THIS…THIS…is what brought me to seek help. Because I’ve honestly never reached this point until recently. It was 2:00am and I was desperate for an escape from myself. I considered the ER but I called my husband instead. Who calmed me down after several hours and begged me to call my OBGYN right then and there, or go to the ER, or call the police. I was having the ultimate meltdown and I had no one. Just a two and a half year old crying at my feet. No adult to turn to. No friend to call up locally. I never, ever in my life felt so out of body. It was terrifying.

…obviously I was and am okay. That very next day I saw my doctor.

I almost didn’t stay at the doctors. I was so upset in the waiting room I could barely control myself. But the receptionist begged me to stay and then eventually told me that I wasn’t leaving. After sitting down and talking about all of this plus more for an hour or so. I felt a sense of relief. I had someone ACTUALLY listen to me. Someone actually take me seriously. Someone understand. She gave me a plan and put me on a low dose anti-anxiety/depression medication. And I’ll be the first stubborn person to say, I am no longer ashamed to admit that I need medication (at least right now).

I’m praying that within the coming weeks I can feel a sense of relief. That the sun will shine better and the days will become shorter (because I’ve had too much fun to realize that they’ve come and gone). I’m praying so hard that God teaches me how to be a mom to TWO beautiful little girls. That I CAN make this work. That I WAS meant to be a mom. Because the worst thought I have had throughout all this was: “I don’t think I was meant to be a mother.” But that’s not true. It’s the best, most rewarding job on the planet. And as I sit here and sob at the near thought of life without my Josie girl, I feel so angry at myself for allowing it to go on this long. She is my world. My heart and my everything.

Just to have a little bit of peace and a little bit of relaxation is worth the fight.

I just want to feel like I can breathe again. I want to feel above water and not attached to an anchor at the bottom of an ocean as I barely can take a breath of air.

I just want these racing thoughts to disappear. I want to sleep again. I want to let my kid play outside without inspecting every inch of her skin looking for a bite. I want to just let it go without saying the words “I know, but I’m just worried.”

I don’t want to “worry” anymore.

Our daughter deserves better. My husband deserves better. I deserve to feel happy. I am no longer ashamed to say that I sought help. As I sat at my OB’s office, I cried to them like a sobbing baby about this and that and went on and on and on. I truly believe the medication will make me a better person. It’s not something I hope to be on for a long period of time, but I certainly believe that it will give me a sense of peace. At least make me functional. It will make my marriage better, my mothering skills better, my patience better and my overall wellbeing better. My girls deserve a present mother. Not one wishing away the days.

I don’t want to look back and regret that I didn’t enjoy when they craved my embrace over a fall or sitting down and reading books and playing with toys together. I want to be in the moment when the moment happens. They deserve that. And I owe that to them.

I don’t want to be the mom who harbors her children from the world out there.

I want my children to feel at ease. I don’t want them to feel my tension or anxiety over the smallest, silliest things.

The most important thing I did was acknowledge that I had a problem. The second most important thing was that I have an incredibly supportive husband.

I thank God for my strength. Because a lot of people don’t have it in them to seek help. Although in these moments, I feel like the weakest person on the planet, I am actually very strong to keep my head above water and talk to someone about this. Because enough is enough. I want it to stop.

I didn’t have a great childhood. My memories are mostly painful. And I want nothing more than the best for my girls. And knowing I was giving them the worst of me, was killing me inside. Josie sees me daily and Juliette doesn’t get the love or connection she deserves. I want to love this little girl like I loved Josie in my belly. But throughout this pregnancy, I haven’t. It’s not that I don’t love HER it’s just that my love for her is overshadowed with anxiety and depression. It consumed me.

There’s no miracle that will happen. I will always have this horrible disease called anxiety. But there are ways to make it tolerable and make life enjoyable. There are ways to treat it. There are people to talk to about it. And I’m no longer ashamed to hide it. I’m no longer afraid to admit it.

I have depression and anxiety.

I will get better.

I will be better.

I want to be better.

If you or anyone you know is suffering, please know that there is help out there. There are people you can talk to. And there are others out there that feel the same. It’s all about seeking help. That’s the first step. Don’t be afraid.

I can’t thank God enough for giving me a husband (although we’re not perfect) who understands and supports me. Who loves me so much. I can’t thank him enough for encouraging me to talk to someone.

Food Allergies Suck!

image1 image2So this happened today guys. I was at work and had to rush home. I almost took her into our ER (again) but treated her at home with medications we had. Thank God for my patient and amazing friend (Josie’s babysitter). For staying calm, keeping me calm and staying to talk with me for a bit. I am grateful for you.

Food allergies are real! Allergens hide in everything. All she did was put a piece of chicken on her tray and her face started to swell. It started to move down her chest and then her nose started running and she was nasally. I was so worried about her airway. My worry never ends for this child. I worry about her 24/7. I barely sleep at night because I want to make sure she’s still breathing. How can I not when things like this happen? Everything she comes in contact with I worry about a reaction. I worry so much I’m seriously mentally exhausted. I am so so exhausted. 

So to those moms/dads out there who are frustrated with the food restrictions allowed/not allowed in schools…please know that it may be inconvenient for you, but my daughters life depends on it. And so do so many others. She has scared me one too many times. And I have been lucky that it wasn’t worse.

It is SO hard to get her to eat foods. Let alone to even FIND something that is safe for her to eat. She’s picky because she’s thrown up way too many times. She’s smart and doesn’t trust the food.

I’m thanking God today for allowing me to work so close to home. To be able to come home. To have the knowledge of how to treat her in this type of situation. But what I struggle with is staying calm. My mind goes everywhere. I feel like I can’t catch my breath. I’m on the verge of a panic attack. I literally saw my life flash before my eyes today as ran out of work as fast as I could. “That’s my baby girl” I kept thinking. “She is my world.” The airway is nothing to mess around with. And Josie had already spent last weekend in the ER from RSV/Bronchiolitis. Poor thing. I wish I could take it all away.

This is probably the most difficult part of being Josie’s mom. Getting her the nutrition she needs and making sure it’s safe. I never stop worrying. Never.

As most of my friends and family know from the past that Josie has egg and dairy allergies. It seems to be a lot more than this now. Hopefully future testing can tell.

Has anyone ever heard of someone being allergic to chicken if they are allergic to eggs? Would that makes sense? I just don’t know. Any thoughts? Suggestions?

By the way…she’s doing better now. But here I am sitting up, mind racing and worried about her. I have already checked on her 3 times in her crib. Dear God…give me the strength.