Heroes

I am off to see the neurologist (again) this week. I am not even sure what to say to her. I feel like someone who was dropped off in a country I don't know, with language I don't know and people I don't know who can't give me directions to places I don't know. I don't even know what I want to see her for. I guess so I can be referred to a surgeon so I can discuss a surgery that I am not even convinced I am ready for.

Some family members and I sat down this past weekend and discussed my options. I kept asking them, what would you do? What would anyone do in this bizarre turn of events. I just never expected to have to deal with something that I didn't even know existed! I am still in a state of shock. And having to think about it with no one else in the house every night. And having to deal with the children every night without a partner...well when the pain hits it is from hell. Straight from hell.

Have I described the pain yet? I just refer to the pain usually. My family members asked me to describe it. I tried to figure out what it feels like. Why it is called the "suicide disease." Why I am such despair when I am having an attack.

The only way I can describe the pain is this: There is a burning hot knife cutting into the gum behind my teeth where the top and bottom jaw meet. There are also what feels like hundreds of bees stinging my gums above and below my teeth. And then under my tongue there is a pinching sensation that comes and goes. Add to this every tooth in my mouth feeling like there is an exposed nerve so when I breathe or drink or talk, the teeth pound with pain. Sometimes these different pains are individually happening. Other times they all occur at the same time.

I guess the reason it is so terrifying as well as painful is because I don't know if the pain is ever going to stop. For some reason the meds have stopped working enough to allow the pain to come back, so what if the meds stop working all together. What if I have to live with this horrible pain? What if I never go back to my normal way of life? I can't go on like this. I can't live with this amount of pain. And that is why they (who?) call it the "suicide disease." I guess some people just couldn't wait for that next day to find out if there is another drug, another ice pack, another miracle.

My family asked me if I ever considered suicide because of this condition. I guess in a way I have. I know when I am having a long, horrible attack, I know that I couldn't possibly live knowing that there is no end to it. I just keep the faith that by morning or by the next day the pain will subside. That the drugs will kick in again. That the ice packs will provide relief.

And I keep the faith that upstairs from me are three kids whom I pray to God will never, ever have to deal with anything like this in their lives, and who I couldn't leave in this world without seeing them grow to be happy adults. I also have faith that my husband, wherever he may be, is coming home and we can fight this together.

I am wandering in a foreign land dealing with a foreign disease, but my kids and husband are my oasis. They are what provide me the reassurance that I will end up back where I should be, back where I belong -- pain free and happy again.

Packing

It is almost ten at night and I am finally feeling some relief. It has been a bad pain day. And I feel so responsible for the day my kids had. My four year old ran away (walked really) from home. My three year old cried for most of the evening. My one year old, well he was fine.

I cannot subject my kids to me in this state any longer. My three year old prays for "all the teeth in the world" every night. I mean, who does that?! My four year old wants to live at his friend's house; hence, the running away episode. I tried every trick in the book. I told him to go ahead and to watch out for dogs and cars as he walked to his friend's house. I thought, surely he will come home after that statement.

I soon realized that he wasn't coming home. As I stood in the doorway watching his little body march down the street, my three year old sobbing, "I don't want my brother to go! Come back! Come back!" I knew I had to go get him. The tricks in the book obviously weren't working. I yelled to him, "You need to come and say good bye to your sister!" When he came back and hugged her, I told him that we want him to come home and we loved him. He nodded and came into the house.

Does this happen to other people who don't have severe pain ruling their world? Even as I type this I can barely focus on the screen due to all of the drugs I am taking to get through the night. Yes, we are barely hanging on. Sometimes I believe we are a family in crises. At least today we were. As I sat on the floor with ice packs stuck on my face I cuddled my kids as they cried for Daddy. I just don't think we are handling our life well right now.

I am going upstairs with jerking hands and blurry vision to check on my sleeping children. And when I come down I will be researching the brain surgery that I think I will have to have. My hands are jerking, my face is hurting, and my heart is breaking. I wish I could run away too.

Lipstick

I took a big step yesterday. I hired a cleaning lady. As you can surmise...I need the help. But it is a big step because it is a big admission: I can't do this, so you do this. You are officially handing over the mop. I have had cleaning ladies before, some good some really really bad. Good or bad, these ladies know your family better than anyone--even your friends and relatives.

When relatives come over, the house is sparkling (or at least twinkling). When friends stop by, the house is straightened. But the cleaning lady knows how disgusting you and your family members are. She sees the tubs, the toilets, the corners and crevices. The little ice dispenser tray on the front of your fridge. (actually in my case, my sister was able to come to the nasty conclusion that I have no idea how to clean my house by picking up the ice tray. I honestly never even thought about that little thing. I won't describe how it looked. Seriously, I don't even get ice out of there anymore)

And if you have ever stayed home while the cleaning lady/crew are doing their job, it is one of the most uncomfortable days of your life. First of all, you sit there feeling like the laziest person alive. (yes, yes, clean over there....and over here. Hurry up darling, my show is about to come on! ) It is really pathetic.

When I lived in Bratislava, Slovakia I had a wonderful cleaning lady who is now practically a member of our family. But before we became close, I would try to describe using body language what I would like her to do or didn't have to do. After a while I just gave up. She knew what she was doing.

She was a wonderful addition to the family, but I am sure she thought I was nuts. At one point, when she was cleaning the wooden stairs, I was in the kitchen opening a package from the States. In it was a tube of lipstick that I thought would look nice on her. So instead of waiting, I rushed over to her and handed it to her. I said in slow English, "I think this would look great on you!"

She took it, and looking at me, put it on. Right there on the stairs. And then continued to clean the stairs. I stood there in horror. Oh my God. She thinks I want her to wear the lipstick while she cleaned my house. She looked at me out of the corner of her eye while she rubbed the stairs with a rag. I could only imagine what she was thinking. "Okay lady...whatever you want. I always heard Americans were weird."

I was completely embarrassed and felt like an idiot. From there on I didn't give her anything while she was cleaning. I waited until she was done and my husband could translate everything for me.

This time I am going to be out of the house and no gifts for the cleaning lady or her crew. I am comfortable in admitting that the house is too much for me right now. I am fine in paying someone else to handle the cleaning. I'm even okay if they think we are disgusting. I just don't want another person to think we are weird.

Too late, right?

Cricket

Have you ever felt like you have lost complete control of your life? Yesterday I had that feeling and then some. I guess it is normal when you are the only adult in the house and the four, three and one year old are ruling the roost. We had a meltdown in Walgreens. One of those meltdowns that make the entire store (remember, it is Walgreens, not a massive Walmart. Tiny.) stop and see how you, the Mom, are going to handle the situation. I am quite sure I did everything wrong. It all started because the three year old wanted toothpaste with Dora on it. The four year old wanted the watermelon one. And stupid Mommy tried to give a lesson in being a smart consumer. The conversation went something like this:

"I want the Dora one!" said the whiney three year old.
"I want the watermelon one!" said the whiney four year old.
"But look, the bubble gum one is less money and more toothpaste! Let's buy this one!" whined the twenty-eight year old Mommy. (It's my blog, I can fib a little)

"NO! DORA!" yelled the three year old.
"NO! WATERMELON!" yelled the four year old.
"No, bubblegum," said the very calm, nurturing young mother. (again, my blog)

"DORA!!!" screamed the three year old.
"WATERMELON!!" screamed the four year old.
"Bubblegum my sweet children," sang the beautiful, skinny mother. (what?)
"Hi!" said the one year old.

At this point I realized how ridiculous we all sounded and I took all of the tubes of toothpaste and threw them on the shelf. I grabbed one and headed for the check out. Which prompted an even bigger tantrum from the three year old. I had grabbed the watermelon one.

I just knew everyone was thinking what a horrible mother I was. I could read their minds. Don't people know about birth control? and I would never let my kids act that way.

We finally made it to the checkout. The four and three year old were both crying now. The young clerk rang me up quicker than anyone has ever done. I felt like grabbing the intercom phone and saying, "I am all alone in this! You try to do it better!" But I didn't. Instead I hustled everyone into the car and ignored every plea for every children's song or audio book. I just ignored them. And miraculously, they all fell asleep for the ride home. I had a few minutes of peace and quiet.

And then the evening. I thought I was being a strong, take no prisoners mommy. I had found a cricket under my bed (ewwww...show no fear, show no fear) and because my four year old was with me, I had to remain calm. I quickly got a bag and tried to make it bounce into it, but my four year old started crying hysterically when the cricket jumped towards him. So I put the bag over the cricket and tied it up. My son is still crying and my daughter is now asking to see the cricket, where is the cricket?, where is the cricket? (over and over and over while clinging to my leg)

As I am dragging both kids and the bagged cricket over to the back door, I walk into the kitchen to see the one year old has found a new ability:

"Hi" he said.

Gamble

The time has come to start seriously considering the dreaded surgery. The pain has come back and I am now taking so many pills throughout the day that I am constantly looking at the clock and running to my pill case. Which is hard enough and would be OK if that was the only obstacle with taking them. But as usual, there is a dark side (bum bum bum-- supposed to be shocking music).

These pills, and I am not sure which one, have the lovely side effect of giving me grade A, disgusting acne. And no I am not talking about a couple of zits. That I can handle (and have been handling my entire adult life.) No, I am talking about the kind of acne that makes you want to wear turtle necks in the spring time, your hair curtaining your face (remember when I said I am glad to give up my Goth days? Well, I might be revisiting them), and you avert your eyes whenever someone really good looking comes within five feet of you. My God, I am a 13 year old again.

Now, imagine all of this, all that I will feel when my husband comes home. I think he will turn around and pretend he doesn't know me, except, he does want to see his kids. So they will be there to distract him enough to let me quickly throw on a turtle neck and enough makeup to hide underneath.

I don't think I am being vain by considering the surgery due to horrible acne. The pain is making me take more and more pills. And I am not sure my kidneys and liver can handle the amount of drugs coursing through them. Apparently my skin can't. I do, however, have to consider the risks and side effects of the surgery. And the fact that it is only effective in 80% of the people who get the surgery. And I just know that I will be in that unlucky 20%. Let us not gloss over nor forget that only 1 to 15 people in 100,000 get this condition in the first place. Again...not so lucky in stats.

So what do I do? Do I go under and have the docs cut open my head and "move my brain over" to place a disk between a blood vessel and a nerve? (I imagine it like a slot machine. Insert the disk, pull on my arm and my eyes spin around.) Do I risk the infections that could occur? Do I risk the swelling of the brain? Do I risk the fact that it might not work?

I don't know. I do know that the pain is back and doesn't seem to be going away. I do know that I can't live like this. But I also know that I can't imagine my kid's lives without me if something should go wrong. Or the look on my husband's face if something should go wrong.

But the pain is back. It is back and I have at least 30 more years to go. 30 years of turtle necks and shaggy hair cuts? Of ice packs and more and more and more pills? So do I risk the 30 years?

Do I?

Smiles

My youngest son's first birthday is in three days. It seems impossible that a year has passed since he came into this world and then two weeks later tried to leave it again by contracting RSV. I never felt such relief as when they admitted him into the hospital. I had known for a couple of days that something wasn't quite right with him and finally someone agreed and took control of the situation.

Isn't it always a relief when someone else takes control? I think that is one of the hardest parts of a deployment. Having to deal with every situation. Every creak, every bug, every scraped knee and every call from the bank, the landlord, the utility companies. You know going into the life of the army wife that as soon as he steps out of the door, the skies will open up and poor down rain, sleet, hail and that is when the tires on your truck will deflate. With all three children in it.

It is also when every stair, floor, wall and window will start to creek and moan -- never during the daylight hours. Only right before you go to that lonely sleep. And every snake (yes it has happened to me), mouse, spider and other unidentifiable creepy crawlies come out as if he were the only reason they were keeping away. I literally had to call my friend and neighbor to come over and kill one of these nasty suckers. I just couldn't be that brave. She was. And her husband has been gone for three weeks.

I know for a fact that I lose control of my household on weekly occasions to the children. I can see it happening before my eyes. The kids just know when Mommy doesn't have it in her to take hold of the situation. And boy, do they run with it. By the time I snap out of the "Mommy's checked out for a while" fog, the house is covered in parts of sippy cups, toilet paper shreds, fruit chew wrappers, all the clothing in their closets that they can reach -- and yet they are running around naked -- and towels from their baths the night before. Even the baby gets into the demolition by emptying every cabinet in the kitchen to his great delight.

Usually the reason I lose control of the kids, the house, etc. is when the pain has gained control over me. And unfortunately that is what has been happening this last week. It is hard to make dinner with one hand holding an ice pack to my face. It is impossible to change diapers that way. Calming a melting down four year old while you are on the brink of melting down yourself is a challenge and having to turn down your three year old's request to play dollhouse with her because you literally can't form sentences is heartbreaking. Getting the children re-dressed while they squirm under you -- well you can only imagine.

I so look forward to when my husband comes home and can take over some of the issues. When my pain can be controlled by me being able to go be alone for a while. And for when my youngest's second birthday comes around and we are all there: smiling, clothed and ice packless.

Tremors

Unfortunately the monster doth protest. I have had some real breakthrough pain in the last couple of days. I have tried to get by with taking Motrin and doubling up on some of the meds. I guess the good news -- can there be good news with any of this?-- is that I am only feeling pain on one side. Which means the diagnosis remains correct. Which means I am a candidate for the surgery. Which means I can start freaking out again about said surgery.

I have been having incredible dreams due to, I am sure, the massive amounts of drugs, I mean medicines, coursing through my system. (I really do need to stop calling them drugs. I had to go tell my kid's teachers that I am not on "drugs" I am on medicine) And one of the weirder parts of being on the four different meds and having these crazy dreams is that I remember them in the middle of the day, quite clearly and I have to literally stop and think, Was that real? Did I really experience that? Or was that a dream?

The way I realize that those moments aren't real is that they suddenly stop replaying in my head and I can't remember them. I assume that if they were a real memory, I would be quite clearer in my ability to keep them going and remember them. I am sure I look crazy with my hands jerking about and my mind suddenly wandering and wondering. I tend to drop a lot of items now, my usual grace (that of a fencer) is completely gone. I am jerking and shaking all over the place. If I wore a suit of armor, it would be clanking and clanging. Surely the people around me would protest this, but in my image of me is a mess.

My life has taken such a strange turn. I spend every Thursday night as a seventy year old woman. I get all of my bottles out and my tray of pill cases and divvy them out. I might as well have Lawrence Welk blaring on the TV. It used to be Thursdays were "Jousters Nights" (a little shout out to my dear old Ohio friends) a bar that would sell anything to anyone no matter what the age. Now I am hoping that one of those drunks got their degree in Neurology and is working to solve my condition.

And as I get ready to go to bed and have a night of crazy, vivid dreams, I place my ice packs in a neat little row in the freezer so I can easily grab them in the middle of the night. In the dark, my ice packs are my only defense against the monster under my skin. It is me against it as I struggle for sleep. I am staring down a gigantic windmill, holding an icepack and praying that someone out there can relieve me of this journey.