Slices

 We made it through Thanksgiving.  I hear a lot of parents talk about how hard the holidays can be.  For us, it was the days leading up to it.  When we have a holiday, or visitors coming, and this year we had both, I create an in depth cleaning list and then pass it around and let the kids initial next to what they want to do.  I use the word "want" very lightly.  I handed it to my oldest, and noticed his upper arm was sliced up.  I simply pulled his sleeve back down and looked at him.  

Earlier that morning, I had gone into the garage to get the extra fridge organized and cleaned out so there would be space for pies and Thanksgiving sides and found a lighter on the arm of a beach chair.  I took it, and hid it.  His little sister then told me she had seen his arm the night before, and that it looked fresh. It looked fresh that morning.  My heart sank.  While I know self harm doesn't just stop, I had kind of hoped it had.  Hiding things constantly gets harder every time because you run out of places to put things.  My drawers now hold all sorts of "unmentionables".  

I called his dad to let him know, as this always brings up the question, is it bad enough to have a 72 hour hold placed on him?  I did not want to do this right before Thanksgiving.  There is always the fear when you put an ED kid in the psych ward, that only the mental issues will be addressed.  Most of those floors are not well versed in handling someone with an eating disorder of some kind.  So if that patient doesn't want to eat, they don't really do anything about it.  Wouldn't it be better to have him home, so I could make certain he eats some delicious calorie laden holiday foods? Food in this situation is medicine.  Feed the body, feed the brain, erratic behavior and the ED voices begin to lose their hold.  

So I pulled him aside and told him to come upstairs so we could talk.  He knew I was aware of the cuts and he knew he had to tell me about it.  I want him to always feel like he can be honest about how he is feeling and how he is handling those feelings.  Even then it is still hard for him to tell the truth.  This was a Monday, the cuts on his arm were very fresh, as in it looked like the blood had barely dried.

When?

His answer was a few days before his dad had last come, which he had just gone back the day before.  I knew instantly this was a lie.  The lighter in the garage, he acknowledged he knew it was on the arm of the chair.  Burning and cutting himself.  Pain caused by pain.  

Why?

He feels like he will never be better.  HE FEELS LIKE HE WILL NEVER BE BETTER.  My son wants help, he wants someone to help him, and it is taking MONTHS to get him into a program, for someone to take us seriously.  So he cuts, because that is a pain he can control.  

I explained that this was honestly enough for me to Baker Act him.  Did he want that? Not yet.  Which to me, means he at least has a little bit of hope left that there is help out there for him.  

Much Love

Messy

 Somehow in the midst of all that is going on, I have become this person I don't really like.  I feel like I constantly need validation that I am handling this well.  Big surprise, I am not.  It has been a very long time since I was the person who needed a shoulder to cry on, someone to hold my hand and listen to my sob story.  Turns out being the strong one that my friends came to for answers was a job I enjoyed.  Now I feel like every time I text someone, its to whine about our problems.  

There are good things happening, my son will hopefully be in treatment soon, which means there is light at the end of this chaotic tunnel.  Two of the positions I sent in my resume to have set up interviews with me this week, which is super exciting.  Being able to work in the field I got my degree in, to be able to make a difference and see some good come out of it, and feel like I am contributing to my family feels really good.  

With all of that, why do I still feel like I need people around who are willing to scrape me up off the floor? I would much rather be the helper and not the help-ee. 

Much Love 

Strong

One of the things I wish people would stop pushing, is how strong the military child/family is.  November is Military Family Month, which means all month long, while they honor military families, they will also be talking about how strong and resilient military families and children are.  You want to know a secret? While we are sometimes, we aren't always.  This proclamation of our strength and ability to handle anything, it promotes this belief that we can handle all of the things, that nothing phases us, that when deployments and times away happen, we carry on.  And we do.  But it comes at a price. 

What doesn't get discussed is the blow our, and our children's mental health can take.  My main squeeze, and my kids Dad, we have been married for 20 years now, came this weekend for a surprise, one last visit before his upcoming deployment.  Part of me wanted to say no, we had already done the goodbyes the weekend before.  Our oldest son, whom is dealing with his ED, and all the mental health issues that come along with it, had broken down at work last weekend, I didn't know if this was a good thing to put him through again.  At the end of the day, we still want to see him, and spend as much time as we can as a family.  

It was a good weekend, of course it was! 24 hours of him home, and spending time with our kids.  Driving our anorexic son to and from work so he could get some extra time with him.  And he got to share his worries, he eats a little more when his dad is around, the dynamic is different.  He loves his dad.  So the more we are pushed and told to be strong and just get through it, the more irritated I get.  

I sobbed last night. I put so many expectations on myself.  To be this perfect parent who can fulfill all the roles, raise excellent people, take care of a house, our finances, and find time to work and fill in all the gaps.  It is A LOT.  So guess what.  I am not strong.  Not all the time.  Some days I am barely holding it together.  I don't think any of us truly are all the time.  

That is ok.  It is ok to fall apart, break down, and collapse under the pressure of everything.  And stay down for a day or two until you can get up again.  

Much Love

Heard

I think any parent in this position, with a child with an ED of any type, worries about being heard.  Will this person, this medical care giver, listen to us, really HEAR what we are saying? A lot of the time the answer is no.  You get shuffled through a system, a number, another blurry face in a long line of people.  You have anxiety, all you need to do is breathe, you're a boy, boys don't have eating disorders.  You're thin now, that's great! Such willpower!  

Today we were heard. In order for the treatment center here to allow him to start next Tuesday, there were lab tests, and an EKG that needed to be done.   I had made an appointment last week for today, and mentioned what it was for, they should have in his file what has been going on.  I haven't been super pleased with the front office staff at the doctors office, and the past two visits haven't really felt like we were listened to.  Turns out third time really is the charm, as is the third doctor! 

When she came in, she thought we were there for a yearly well visit.  Ok, strike 1. the office did not take note of the reason we were coming in, even though I made it clear it was for admittance into an eating disorder treatment center.  As soon as I said, we are here because he has an eating disorder, specifically Anorexia, she wanted all the details, asked the right questions, and immediately had suggestions, referrals, and help.  We talked about his chest pains, around his heart and how it feels when he breathes.  

Cardiac issues are a huge part of Anorexia. One of those is Bradycardia.  This is low heart rate, which can mean different things for each individual.  I have been closely monitoring my son's heart rate, he wears my lovely rose gold Apple Watch daily.  The watch face at the moment is Hello Kitty, super cute! And it makes me smile a little knowing he walks around with Hello Kitty on his wrist.  He has gotten down as low as 43, and the other day while stumbling around a roller skating rink clutching the side, it shot up to 175.  

Again she listened! 

Before they did the EKG, they did the Orthostatic test.  This involves taking blood pressure and heart rate while laying down, having the patient stand up, take it again, and then have them sit and take it a third time.  If there is a big jump, say 20 beats per minute, this can be indicative of something called POTS.  Otherwise known as Postural Orthostatic Tachycardia Syndrome.  Blood flow should be steady whether you are sitting or standing or upside down.  When you have POTS, your blood will stay in your lower body when you stand.  This is common in ED patients because lack of food and low weight, and low heart rate causes the heart to have to work harder and thus slower.  

We also talked about his depression, his self harm, and his suicidal ideations.  She looked directly into his eyes when she spoke to him.  There was encouragement to reach out, that when thoughts of suicide invaded his head, to know he needs to reach out, to treat it like an external force that he needs help fighting.  I feel certain, she made sure he knew he was worth fighting for.  We are fighting for him.  And today we were heard. 

Much love

About Last Night

Who knew that in order to get myself to be better at blogging, all I needed was a kid with an ED.  

Last night, or do I call it super early this morning, we experienced our very first AN emergency room visit.  Now since we were made aware of my son's ED he has complained of some level of chest pain most days.  I am constantly keeping an eye on him, but having read everything we have, and what we have seen others go through in some of the support groups I am in, I am always leery about taking him in unless it is serious for fear that they will brush us off.  

I went to bed around 10:30 last night, I was exhausted and ready.  Around 12:40am he came in and said "Mom, my heart hurts really bad, I think you need to take me in".  I am a fairly light sleeper and I sat upright in bed, blearily awake.  Thank goodness I sleep in pajamas! It took me a minute to fully awaken, and then I began asking all the usual questions, It hurts more than usual? Is it unbearable? For how long? I had him sit on my bed and try and relax so 1. I could think and see if I could figure out which ER would be the best to take him to and maybe have someone on staff who was experienced with ED and 2. To see if he could relax and the pain lessen.   He really felt he needed to be taken in, I thought I had found a better ER so we both got dressed and headed out.  

As per usual, we were given a short registration form to fill out, and we made sure to mention he is AN.  All they wrote on the intake form was chest pains.  No one asked about family history.  Which we have a lot of.  Both side.  Heart attacks, stents, genetically high blood pressure.  They weighed him, fully clothed, shoes on, pockets full of a hefty phone and wallet and then announced his weight to him.  The kid understands kilograms so he knew.  1 of many rules of dealing with a kid with an ED, DON'T tell him his weight.  DON'T tell him his fully clothed WEIGHT.  

We are so new to this.  So very new, we are learning as we go.  So I am unsure of what tests to ask for, I am unsure of challenging a medical doctor who is supposed to know more than I do.  Aren't we supposed to be able to trust the system? They escorted us back to the Peds ER ward.  Walking.  No wheelchair.  Just a come on lets go.  Really taking those chest pains seriously aren't they.

Ok.  

The doctor and nurses were very nice, do I feel like they knew how to handle our situation? No.  He asked some questions, again my son mentioned he was AN.  They decided to check his electrolytes, and his thyroid, and do an EKG.  They set him up to start an IV.  Not that he ever got one.  They attached all the stickers and brought in the tech to do the EKG.  Which she had to try and do 3 times.  And then proceeded to tell me that it was such an old machine and didn't really work properly.  Great.  We were there until about 3:30am.  The doctor came back in and said well we don't really see anything to be concerned about.  They gave him an Ibuprofen, and then decided it was probably just anxiety.  Do they give Motrin for anxiety? He was then given instructions on how to breathe through it.  I will say, at the end of the very short stay, I felt like the doctor realized he was ill equipped for this and suggested we see a cardiologist because their EKG would be more comprehensive and they would be able to see more that was going on.  1 point for him! 

The big question here, for today, is how on earth does one find out if and which ER's are going to have someone on staff who is ED competent? In an emergency, an actual emergency, I am not going to have the wherewithal to call around and find out which one is the best.  Who is going to understand the disease and the protocol that goes along with it.  Through all of this I am consistently validated that getting my masters in clinical mental health counseling and becoming licensed to work with ED is exactly what I need to be doing.  How are there so few resources, and I keep reading how too many doctors that claim to know how to help, don't really.  

Much Love

Progress is Progress

 Earlier this week we had some progress in this attempt to find help for my son.  Kate, from the facility I mentioned before called so we could take part in an intake meeting.  My son was there for it, as was his dad (my husband) which was so important.  The majority of the phone call she spoke with our son and he was very open and honest.  Some of it was incredibly hard to hear.  I know a lot of how he feels, because he does talk to me about it.  To hear it spoken out loud to another person, was heart-wrenching.  He admitted to the self-harm.  Since I had removed all of his access to box cutters and razor blades, he had resorted back to burning himself.  I had no idea he had begun doing this again, and the last time was only a week or so ago.  When pressed, he told us how he uses a lighter to heat up nails and then puts them on his arms.  

She also asked him more about the suicidal ideations.  She asked if he had a plan.  While it isn't a super complicated one, there is a way he would want to go about doing it.  It did bring a spark of hope when he said he knew if he did his mom, dad and siblings would miss him.  Which is why he hasn't.  I hope that he really truly does know how much we love him and couldn't be without him in our lives.  

To hear your child admit that they don't want to be alive, and the only reason they do hang on is because they don't want to hurt you, is one of the hardest things I think I have ever experienced.  It makes it so obvious that this ED is working so hard to take him.  His brain is encompassed in this haze of depression and fear of gaining weight.  

Last night for dinner I made nachos, he was at work so he didn't witness the making of the queso I made.  I love to watch cooking shows of all kinds and lately have been rather obsessed with Selena + Chef on HBOMax.  It gives me joy, its so real and fun to watch!  Yesterday morning I had watched the episode where she makes nachos with Chef Richard Blais.  I was inspired by it and decided to make grilled marinated steak nachos.  Let me tell you about this cheese sauce.  This queso.  4 cups of heavy cream, maybe half a brick of Velveeta, more if you like, and handfuls of shredded colby jack and mozzarella and melt it all down until it is so ooey gooey delicious you can't help but dip a chip in it before it even hits the table.  

Fast forward to this afternoon, I knew he had eaten nachos when he came home from work, a small bowl full.  He said to me he had barely eaten anything yesterday and while he had the nachos, he didn't think it had a lot of calories due to the size of the bowl.  I looked at him and simple said 4 CUPS OF HEAVY WHIPPING CREAM.  

This is what parents of kids with ED resort to.  We hide fat and ingredients in the foods we make.  We trick our kids into getting calories by any means possible.  I could tell by the look in his eyes he was upset by this reveal.  It may change how he eats the rest of the day today.  I am making an early Thanksgiving dinner since his dad leaves tomorrow to go back to his ship and shortly deploy.  You better believe I slathered the turkey in butter before it went in the oven, the mashed potatoes will be brimming with butter and cream, and cheese.  The gravy will be made from the drippings of the turkey.  And there will be pie.  

Deception by food.  Because we are fighting a battle for his life, and I plan to win.  

Much love

Genetics

 Research shows that genetics play a huge part in the development of an eating disorder.  In fact, if a mom or sister have anorexia, it is 12 times more likely another family member will develop it. 

 I wanted to share a little of my history with disordered eating today.  I was never anorexic per say.  If you had asked me when I was 16, if I thought I had an ED of some sort, I would have told you no.  I ate food, I wasn't purging, although a friend and I tried one night and were unsuccessful.  I did however go on strange diets trying to constantly be smaller and smaller in size.  It wasn't until a few days ago, when I was reading Life Without ED, by Jenni Schaefer, that I finally recognized the voice that I have had in my head for an eternity.  

My mother was constantly trying to lose weight.  Due to medications she was on, it was incredibly difficult, but it leaked into every aspect of our lives.  I remember being forced to go on 3-4 mile long walks every day with her, so I didn't gain weight, or so I could lose.  I obsessed over the size of my thighs, someone once told me I had a bubble butt.  I cried a lot over that one.  I was a teen in the era of models like Kate Moss, Shalom Harlow.  Tall, painfully thin.  I was neither of these things.  I was a 5'2 girl with 32D boobs and a butt.  Perfection would always be out of my reach.  When I was 16 and on a summer trip with my church youth group, I refused to eat anything and only drank 32 oz cups of soda a day.  I dropped weight like crazy and bragged about it to my friends.  Why didn't I see that as a size 3/5 back then, I was perfectly fine? 

The consistent voice in my head through all of that, and still comes out to scream at me? "You're fat and disgusting". "You'll never be as thin as your friends". "Why can't you just commit to eating next to nothing and working out all the time? Maybe then you could achieve the body you want". 

I decided to try doing KETO for a while.  Carbs were the devil.  If you eat them, you are hurting your body.  I joined several groups on Facebook that touted the glory of being able to follow a KETO diet to the letter.  I felt amazing when I conquered the desire to eat bread or sugar.  If I slipped? I beat myself up.  Carbs and sugar would make me fat, so I had no business eating it, I wasn't one of those lucky naturally thin individuals, so I didn't deserve those things.  I would say with such pride, "I don't eat sugar, I don't even want it any more".  Looking down on those who were not strong enough to say no to the white crystalline demon.  This lasted about 2-3 years.  

As an adult, I came to realize I had Body Dysmorphia.  It didn't matter how I looked, all I saw in the mirror was myself, grossly overweight.  It haunted me.  It wasn't until about 4 years ago, I had a tummy tuck done, and I still felt overweight, but when I saw a photo of myself, that was the FIRST time I ever saw what my body actually looked like.  And yet I still struggle with that.  

I have come to realize, that food is food.  There is no good or bad food.  Bread is not a villain.  Poptarts are not evil.  Broccoli and bacon deserve room on my table.  Unfortunately, this realization is not genetic.  Eating disorders, disordered eating, are.  I passed mine to my oldest child.  And I am sure mine came from past generations of the same fears and need to be perfect.  

Now I try to take what I am learning, have learned, and help my son get through this. I had him finally sit down with his dad, (he is in the military, so he comes home whenever he can), and really share what was going on.  How he felt daily, where his mind goes.  It is scary, to witness this fully grown ED, speak through him. To hear him shout out, "I WILL NEVER BE FAT AGAIN".  ED has come to believe it is part of our family, ingrained in our genetic makeup.  We have to find a way to let "him" know he will never be welcome here.  

Much love. 

Beyond

 I am becoming beyond frustrated with this process.  We came across a facility for my ANS17 that seemed to be the perfect fit.  It was an intensive out patient program, local to our home, and he would be there 5 days a week and be able to sleep at home.  I feel like this is so important to his therapy and well-being as he and I are close and he has been very open with sharing with me where he is at and how he feels.  

He is not in a great place.  He is angry any time his weight goes up, he hates how his face appears round to him.  But his health is spiraling.  Chest pains, trouble breathing, incredible fatigue.  All of these go hand in hand with an ED.  

I was on the phone today with the lovely admissions person, Kate at a facility here in Florida. I reached out because the Alliance For Eating Disorders recommended this particular agency.  Our initial discussion was incredibly positive, and for the first time in several weeks I felt a ray of hope.  As requested I sent in all our insurance information, and then waited for it to be cleared.  A few hours later I received a call, telling me otherwise.  Again, Kate was incredibly helpful, she wants us to find a way to make this work.  For my son to get the help he so desperately needs.  However, our insurance came up as a HMO instead of a PPO and thus requires us to call and get them to switch it to something they will take, or complain until they grant us a single case reprieve.  I'm looking at you TRICARE.  

So now we sit. On the phone, hoping to get someone to listen to us.

In the meantime, I am wondering SO MANY THINGS.  Why was I not born independently wealthy?? WHY is it so difficult to find the help we need? Why on earth would someone withhold care from a child who needs mental health intervention? Why is mental health in our country, maybe just our state, just out of our reach?  I am feeling incredibly desperate at this point.  

It is a huge part of the reason why I am going to pursue my Masters in Mental Health Counseling, I want to create a facility that will reach boys and men in the same position as my son, who need help and can't find help.  And when their insurance won't cover it, or it runs out, that we can provide funding for them, to help them heal and conquer their ED.  This is my dream.  Consider making it yours.