Children with Disabilities

I just finished reading Jodi Picoult’s “Handle With Care.”

It was excellent, as are all of her books, and it really caused me to think. As usual.

I won’t give anything away, so don’t worry.

The main premise of the book is a girl who is born with a rare disorder that makes her life very difficult and very painful. Basically her bones break all the time. Very easily. Even just by bumping a table or wall corner. It’s called osteogenisis imperfecta. You can learn more at http://www.oif.org/site/PageServer .

This girl’s mother and father struggle to pay for their child’s health care and more. Mother has to quit her beloved career because she is constantly running from emergency to emergency, and who will employ someone who is constantly having to leave to run their child to the hospital, or stay in the hospital with them, or drive to another city to get treatments?

Anyway, the book brings up the hot topic of abortion in the cases of disabled children.

We now have many screening tools to help us see if our children are healthy before birth. I feel like these tools are very important. A parent who is going to have a disabled child is greatly helped if they can study up, learn what their children will need, and have therapies, specialists, home health needs, etc, ready when the child is born.

Some parents who find out their children will be severely disabled choose to end the pregnancy.

Now, at this time, this is a highly controversial topic in the US. In other countries I know it isn’t. In other countries they used to euthanize children who were born with severe disabilities that could be seen right away. Perhaps they still do some places. I am sure it happened here at some point in our history too, though I doubt it was widely accepted publicly like it has been in some countries. Now in those countries it is common practice to abort. Truly the people in these cultures feel they are saving their children from a life of hardship and pain. We, in the US, have doctors that are willing to abort for reasons such as down’s syndrome, OI (mentioned above) and other permanent disabilities. We also have a large disabled population that resent the implication that their lives are somehow worth less or not as fulfilling as more “able bodied” people’s. There are several groups trying to change the conversation about disabilities in general – pointing out that a “different” life is not necessarily a “lesser life”.  Though in our society, it can be very hard to be disabled or to raise a disabled child. Simply from a “assistance” or “money” stand point it can be draining on parents. Getting money, proper health care, proper therapies, proper rest, etc can be very difficult for parents and they often need to be able to be at home full time.

In Jodi’s book there is some discussion about who gets to decide what life is “worth” living, what “disabilities” are severe and what aren’t. There is a part where the argument is given that perhaps one day we will have the technology to see what the child would look like, what kind of grades they will get, what they IQ might be, what their personality would be like. At what point do we draw the line in deciding what “kind” of child is a child we “have the resources” to take care of?

I think these questions are worthy of thought on everyone’s part.

As I was reading this book I thought of a lot of things. I have known some pretty severely disabled children in my life. Children who will never live on their own. Children who’s parents will be taking care of them, physically and financially for the rest of their lives. Some day if the parent dies first, someone else will have to take care of their child. These parents struggle to take care of the child, but also love them dearly and say they wouldn’t change their lives if they could. I have known some people with “lesser” types of disabilities, people who can live on their own eventually, even if they need help learning certain things, or with certain activities. Again, though it may be a struggle, parents love them and care for them, help them learn, help them find the tools they need.

What about parents who live in severe poverty? I can imagine that a child that is disabled in this situation has it much harder than a child who’s parents can afford therapies, equipment, and such.

My mother worked in special education her whole life. She truly helped people in her district. She helped the students and the parents, and she knew that no matter what the doctors say, the children can surprise you. She learned never to put a child in a box, to always challenge them and let them become what they are able to become, instead of telling them what they can become.

 

Here were a few of my thoughts about this whole topic:

What if we really could see into the future and see what our child would be like? Would we change things if we knew ahead of time they could have a serious mental illness like scizoprenia or  borderline personality disorder? What if we knew in utero that our child might be very low functioning (also known as mentally retarded)? What if we knew they might commit suicide later? What if we knew they would be a true genius as a child? Some parents think those kids are just as difficult and costly to raise. What if they might have a difficult time in school, or will be bad at sports? What if we knew they could become a Ted Bundy? At what point do we draw the line?

(I am not advocating terminating the pregnancy of a person with any of these disabilities, simply having a theoretical discussion.)

Victoria’s Secret

Yesterday my FIL asked me if there was a Victoria’s Secret store at the mall near us. I almost choked. 

Apparently his sister is wanting to sell the makeup, lotion, etc from Victoria’s Secret in Russia. It is a big thing over there right now. 

I told him that we did, indeed, have a Victoria’s Secret store at the mall near us. But I didn’t know how to warn him about what most of Victoria’s Secret really is….

He is a very proper, private, modest person and I can’t imagine him walking into a store with all those thongs and lace lingerie and stuff.

This morning my husband was getting ready for work. His mother and father asked if I needed the car so they could go to the mall.

I told my husband, “your dad wants to go to Victoria’s Secret.” He almost choked. He literally did a double take and said “who said that?” Like there is no way it could be true.

I said “Your dad said it. Apparently your aunt wants to see how much the makeup and lotions and stuff are. You better warn him before he goes what the store really stocks.”

He starts laughing so hard he can’t breathe and walks out of the room to ask his dad what is going on.

Ah…

I guess we will see if his quest for makeup is successful. LOL

Well, it was MY laugh for the day anyway.

Being Poor

There has been a lot of talk in our society lately about being poor. About welfare. About what being poor really means. About why people are poor.

I won’t even start to go into the whole “privilege” discussion. I will just touch on it. Anyone out there who doesn’t truly believe that their family/background/schooling/race/gender/neighborhood/church effected their entire life – the way they ended up – I can’t change their minds. But please know, I truly know deep deep down in my soul that if I had not had the things I had as a child/young adult, I would not be who I am today. If I had been born a different color or in a different country or in a different state/city/part of the world, I would not be who I am today. I barely – BARELY – made it to this point in my life. And I had all the help anyone could ever want. I am sure I would be on the streets, on drugs, doing god-knows-what to get by if I had not come from where I came from. If I had not been born white, middle class, in a small middle class town in a white middle class state. If my parents hadn’t been able to bail me out of trouble hundreds of times – I would not be the me I am today. I was not mentally/emotionally/chemically equipped to do what I needed to do in life. And I was “lucky, privileged, blessed.”

Beyond that, I also never knew what it was like to be truly poor. I never even KNEW that I didn’t know what it was like until I married my sweet husband. When I married him I had a single apartment in my own name. I didn’t have cable, I didn’t have a nice car, I didn’t have the internet, and I had a broken down second hand computer that I had used at one point to work on college classes. That I dropped out of. I always had food, once in a while the lights or water bill were a little late. A few years before that I had been evicted, and lived with a lady who turned out to be a crack addict. She stole our rent money and we were evicted again. I didn’t always have a phone. I didn’t always have what I really wanted. But I had a roof and I had food. If I was evicted I had friends to shelter me. Or I could have gone home. I had a car to go to work when I finally figured out the whole “YOU HAVE TO GO TO WORK EVERY DAY OR YOU GET FIRED” thing. I had some friends that helped me out and my parents helped me get my new apartment and gave me a car my brother was done with and paid insurance on it and sent me money when I needed it. THAT got me out of the gutter/slump/craziness… Not everyone has that. Actually, I dare say, MOST people don’t have that.

But when I met my husband I realized I had no idea what poor was.

He would not want me to share everything about his life. He is a modest and proud man. His family is wonderful – they have all helped each other out when they needed it most. His neighbors, his community – they all help each other.

My husband spent his early years in Georgia – of the former Soviet Union. When his parents got married it was a time of prosperity. His mother’s family had a big house, held big dinner parties. She tells me how her dad had china for 200 people for weddings and such. When my husband was a child they took summer vacations in the mountains at a summer house. They all had more than they needed. This was during communism. They had jobs, they had a little more than what was comfortable. Then Georgia was embattled in a civil war. Everyone he knew lost everything they had. There were times there was not enough food, or enough heat or any electricity. His friend has told me they would sneak into the government orchards to steal fruit for their families. His father moved to Russia to find work and eventually was able to bring his family over. They lived 3-4 families in what we would call a studio apartment. He showed me the apartments when we were there. It was hard for me to see. Times were much harder. The soviet union was falling. People didn’t have enough work. His dad was a hard worker, but things were more expensive and they didn’t always have what they needed. His family is Armenian and finding jobs there is tough for Armenians – even today. Especially jobs that pay a living wage. At some point his dad couldn’t work anymore. He had heart problems. His mom worked, my husband worked, his brother worked when he was old enough. His dad made wine and sold it for a little extra money. They had what they NEEDED – food and clothing and shelter. But truly, that was all. He did not have a lot of toys. Sometimes none. He did not have tv or computers or games. He did not go on vacations. He had a full belly, and a family that loved him, and went to school. And that was enough. His family still lives in what we would consider poverty. They bought a piece of land, intending to build a house on it. But his father needed heart surgery which they had to spend their life savings on (and borrow for), and the economy got even worse. They live in a trailer now. They have an outhouse. They have an outdoor shower and sink. They have what they need. Heat, water, electricity, food. But they don’t have what they want.

And still, they are better off than many there. The conditions I saw appalled me. There was a homeless man who lived in the “dump” area near the family house. There were people living in houses made out of half of a grain silo on it’s side with dirt floors, sharing the space with their pigs and goats and chickens so they would stay warm or cool in the weather, no electricity, running water, or toilet. I think for heat they used a wood fire place. There was no where to let the smoke out. There were children who lived down the street who came to play. Their father drank too much, they lived with about 4 families in the same home – their grandparents home. They had no toys at all. They wore the same clothes every day. Their mother was potty training the 10 month old because diapers are too expensive. When they came to play with the toys people had brought for my 18 month old, they were so careful with them. Treated them like precious items. They loved to have something to play with. The older boy would come by once a day and ask for a cup of sugar or flour or some tea. Here is my mother in law who has just enough, generously giving to the neighbor who has nothing.

http://whatever.scalzi.com/2005/09/03/being-poor/

I read this ^ today. It tugged at my heart. It is a well written “story” of what being poor in America is. This is being poor in our country. Please read it, it puts things in perspective. But even this is nothing compared to what I saw in parts of Russia, or what my brother saw in parts of Peru. Don’t get me wrong – some people are very well off there. The neighborhood his parents have their land and trailer in has very lovely big houses. His uncle has a beautiful house, with plenty of room for the family and even grandma to come stay. There is a lovely lovely garden with fruit and grapes and vegetables. But some people just get by. And some people don’t even do that.

I challenge all of us to try to remember that being poor is not what we might think it is. Being poor is not always the fault of the person who is poor. Being poor is sometimes beyond control. We are taught that being poor is a defect – that being poor is a product of lazy, stupid people who would rather live in slums worrying about dropping the bowl of macaroni on the floor instead of “trying to get out of that situation”. This is untrue. If I think about when I was poor, I think about it this way: me being poor was “easier” than someone who was born poor in a “bad” neighborhood, without an education or family support, who was brought up around gangs and domestic violence and drugs being poor. Picture us both climbing a mountain – the same mountain, but I started out about 100 yards up the mountain and have tools to climb with, while the person born into different circumstances has to start lower, has no tools, hasn’t been taught how to climb. Possibly doesn’t have the right clothing or shoes or even a water bottle. Maybe they don’t even know where they are trying to climb to.

People like to talk about how anyone in this country can get ahead with a little hard work and perseverance. And luck. It simply isn’t that easy. This dialogue has to change. People have to challenge their idea of what poor is, what the causes and what the reasons are. Only then will we be able to make a change. Only then can we really help people. Only then can we change the “broken welfare system” that keeps people alive. I agree, it needs to be changed. There has to be a way to make it easier for people to get off welfare, to progress, to climb. But we can not change it until people REALIZE the problem. Until people start to see what really needs to be done.

Food Therapy

My son is a picky eater. I know what you are thinking – all little kids are picky. This is beyond that. He eats 3 meals: spaghetti with marinara, eggo blueberry waffles, and dominos cheese pizza. That’s it. Everything else he eats are sides – cheese, frozen gogurts, fruit, cucumbers, crackers, etc. It had become a problem. He wasn’t getting the nutrients he needed, even with vitamin supplements. I grind meat up in his spaghetti sauce with the Cuisinart and make special cookies that have beans and nuts pureed in them to help with iron and protein. I read every parenting magazine that claimed to be able to “help you feed your picky child.” And those magazines made me feel like a failure. These people were talking about edamame and humus. I can’t even get my child to eat pancakes.

My in laws made me feel like a failure. Their toddlers were walking around eating dried fish with bones in it at barbeques. My son wouldn’t eat the cucumbers if they weren’t cut right. Most of them force feed their child as a toddler. I don’t agree with that – I am not going to sit and hold my son down and force feed him. In fact, when we were in Russia I got very angry with my MIL for doing that. I don’t think it’s healthy. But still, my son wasn’t eating anything and I didn’t know what to do. I knew what I didn’t want to do, but I couldn’t fix this problem.

I was at my wit’s end and I didn’t know what else to do. Now, my son has sensory issues – his main problem with foods is texture, smell, and taste. (I know – that’s all of it.) I had read about food therapy and decided we needed to ask his doctor. At his last well check I asked about it. She referred us to the children’s hospital, they did an evaluation on him, and we got into the food therapy clinic. In food therapy an OT helps figure out what the issues are, and how to fix them.

He has always kind of had feeding issues. He had a hard time learning to nurse, and then I had to stop breastfeeding due to cancer treatments and he had a hard time with any nipples except a certain type. He never got past the newborn nipple – he would gag and spit up and cry with the nipples with more flow. He ate baby food pretty well. But I was really sick and couldn’t make fresh food most of the time, so we just used jar foods and while those are healthy, they weren’t the same flavors as what we normally eat. I wish I had just ground up our food for him. Getting him off baby food to solid food was very stressful for him. At one point he really ate well – pretty much every thing I gave him, but then he started eliminating foods and it became a struggle I couldn’t deal with. In fact, I got so frustrated with meal times that I just gave up. I stopped making family meals since my husband came home late (and later his mom came and she makes the foods he prefers). I stopped eating at the table with him, we just ate in front of the TV. I stopped trying to get him to eat other foods. I just couldn’t handle the frustration. We adapted to him instead of continuing to challenge him and get him to eat more things.

So, food therapy – I have had some questions from friends about what we do. I am not an OT, and having someone to go work with, having someplace that isn’t home to do this work has helped a lot. He fights less with her than he does with me. But I will share what we do, what we have changed, and what our techniques are at home.

First the new rules: 1. we eat at the table as a family. Right now that usually just means me and my son except when his dad is off. His grandparents eat on their own schedule after work and such. 2. I choose what to serve, he chooses what to eat. I don’t force him or struggle too much with him about what he eats. Every meal has SOMETHING he prefers so he doesn’t go hungry. 3. We put the food on the table and pass it around (or in our case serve ourselves from the bowls) – “family style”. We both put some of everything on the table on our plates. It can just sit there if he doesn’t want to eat it, but I try to have him spear it with a toothpick or something. He at least looks at it and smells it. I have gone back to divided plates for him (like toddler plates with dividers) because that makes it much easier for him – not such bad anxiety over foods contaminating “his” food. 4. Eat on a schedule. He isn’t allowed to graze. I always just gave him a snack when he wanted one. He isn’t allowed to just eat when he wants. He eats breakfast, snack, lunch, snack, dinner, and a snack if he needs it. He has adapted well to that and I rarely have to say “you need to wait for snack” anymore. If it’s within half an hour and he is starving I am flexible with the time, as long as he isn’t just walking around eating small snacks all day.  5. change the way you talk about food. Correct statements like “that’s yucky” or “I don’t like that” to “I am still learning about this food.” And even with you, don’t turn up your nose to something at a restaurant, or at a friend’s house. Be positive about food. If it is something completely new, we use the phrase “that surprised our tongue. Remember, our tongue has to try a new food 10 times before it knows if it likes it or not.” Also when anxiety arises, saying “you don’t have to try it, we are just LEARNING about it.” Eventually you get to the point where you have to push more and then we stop just learning about it.These types of phrases helps disperse the anxiety.We also say “I think your eyes are tricking you” if he doesn’t want to eat it when he just looks at it. Our biggest rule is “you don’t have to eat it, but we are going to learn about it.”

Desensitization: Kids like my son need some help to get over the struggle with foods. He has so much anxiety around foods. So we do it in steps, we let him get to know the foods before he actually tastes them, and we take it slow.

Some of the things we do for him to get used to food was hard for me at first. It’s messy. It’s not pretty. It’s everything you don’t want in table manners. The therapist said some families just play with food at snack and say dinner is time to practice being polite and using our manners. I use the techniques at every meal because it makes it easier for him to interact with different kinds of food. The order of desensitization is: sight, smell, touch, in depth touch (like pulling it apart, crumbling it, squishing it), touch on the face or head, kiss, lick, bite, chew, swallow. Those are all separate steps.
Our therapist said that kids need to step up slowly to eating new foods. We start with what it looks like – if I serve something new he might not even want it on his plate, but we are getting past that. We put a little on his plate. We will talk about what it looks like. What color, what textures, do we think it might be crunchy or soft or gooey? Then we have him smell it. At first even that made him so upset. Now he will smell anything. We will compare the smells to other foods we know. Then we start with touch. We do a lot of messy projects with food. Pudding finger paints, crunching up cheetos or veggie sticks (like potato chips kind of, but made with more veggies, different colored, and stick shaped – less fat too), putting goldfish crackers in our jello or fruit, chopping, mixing, feeling, crumbling, getting totally messy with the food. Just exploring the textures and smells and stuff. She said they need this – they need to feel what the food will be like in their mouth before it gets to their mouth. It’s messy. And it’s hard for me to let go of that sometimes. But we do it. I bought some of those sword toothpicks, some fun bowls and utensils, etc for him to play with – and I have him help me cook which he likes – this all desensitizes him to the foods before it ever gets close to his mouth.
Next step at first was touching it to his face or head. He didn’t want it near his mouth, and we were mostly doing things like crackers or veggies sticks, nothing extremely messy. He would bounce it on the top of his head, or tap it on his ears to a song, etc. Eventually she would have him tap his lips or teeth. This was much more fun and less threatening than “try it.” We have eliminated this step for the most part. He has gotten to the point where he will put the food to his lips without freaking out.
So now we start putting it to his mouth by kissing it, then licking it, then finally biting it and allow him to spit it out if it’s too strong. After he has been exposed to a certain food in several of our “sessions” at home or in therapy, we move on to “take 3 bites with chewing and swallowing. This is still difficult for him. This is still a struggle. But I remind him that he KNOWS this food, I remind him that this food isn’t scary. And he has gotten to where with most things he will do it without too much of a struggle.

An important thing to remember is to try to branch out from foods your child already eats. If it’s somewhat similar it will be easier to make that transition. They call this “food chaining”. For example – if your child will eat spaghetti with marinara sauce, start trying differently shaped noodles. Then you can try different sauces. We are trying this right now with mac n cheese. He will eat macaroni noodles with marinara on them, but not cheese sauce. We have let him put some marinara on the mac n cheese and it helps him tolerate it more. If your child likes waffles you can try pancakes, blueberry muffins, french toast, etc – other bready breakfast foods.

Some of the best things I have learned:

Kids think that they only like ONE KIND of thing by sight. Like he will only eat square graham crackers and not any teddy grahams or grahams shaped like spider man, etc. So we take that one food he likes, and put 3 different “types” out to taste test, play with, explore all at the same time. He eats eggo blueberry waffles. We have tried plain, strawberry and are now going to try chocolate chip. We did different flavors of applesauce. He only liked one kind of string cheese. I got him to try another after a lot of work and playing with it and looking and touching it, and he liked it. He would only try it after we had done several of these types of activities – because he thought if it looked a little different or had a different package he wouldn’t like it. We talk about how these things are the same. With the cheese: it’s the same color, it’s the same shape and size, it feels the same… etc. We tried different colors of jello, kix cereal now has a couple different flavors, cheerio shaped cereal like Fruit Loops or Apple Jacks. She said even different types of fruit snacks, etc. Just to desensitize. Different types of ice cream, different types of cookies – she said don’t worry about how healthy stuff is at this point – i mean, still try to get a balanced diet over all – but let him try different snacks, deserts, etc – just to show him not all new foods are scary.

We mix foods we already know with new foods to make them less scary. One example: when we tried new flavors of applesauce he used graham crackers to dip in it and eat off the cracker. He already knows graham crackers. And it was less applesauce at once mixed with something that isn’t scary. Right now we are trying for mac n cheese. He eats most kinds of noodles (macaroni, spirals, spaghetti) with marinara sauce. But won’t try cheese sauce or alfredo sauce or anything. Right now he is helping me make mac n cheese, which I eat, and he puts marinara ON TOP of the cheese sauce on his plate and mixes it in good and then he can eat it. If it doesn’t have marinara he gags. I don’t know why. We have used one of those nut chopper things that you put the food under and hit the top of to chop up crunchier items and mix them in with the food that was new. He loved the chopping. He likes to peel and cut veggies up too. I was amazed he would do this mix in activity because he hates his food to touch. But he did – he crunched up veggie sticks and put them on noodles, today he made crumbs out of cheetos and put them on his mac n cheese. He crunched up the veggie sticks and crunched cheetos into them when the cheetos was new. It was more veggie sticks than cheetos and then they did “puppy dog licks” where they lick their finger, dip it in the pile of crumbs, and lick the crumbs off their fingers. It helped with the taste, texture, etc.

Change the shape of foods. Since he was so worried about packaging, what color or shape things were, since he had such a set idea about what “his” food “looks like”, I started changing the way his foods look. I would cut the waffles with cookie cutters to change the shape – I cut pizza into squares or stars or different shapes. I did different colors of a similar food, I did bigger sizes, smaller sizes. I used fruit cutters to make balls or differently shaped slices out of our fruits. I mixed cut up strawberries and bananas in the same bowl. There are lots and lots of ways to change how food looks.

Another fun thing the therapist did (and kind of gross) is she had like a medium sized mixing bowl and when he put something in his mouth at first they “blow rockets” with them. Like put them in their lips and them blow them (spit them) into the bowl. And call it blowing rockets. Then he is tasting it, touching it, getting it to his mouth for fun. I have done it at home with a few things he was really worried over.
Also just playing with it. Like the mac and cheese, we made smiley faces with it. Because he hates those stickier textures. It helps him to touch them. We did frosting on graham crackers with our fingers, we did jello to squish in our fingers. We did painting with those cheese and pretzel packs you get at the store (the ones where you dip the pretzel or tiny bread sticks into a cheese sauce).

We give him “choices” like do you want to take an ant bite or a birdy bite? Then we move up to a bigger bite – the biggest is a t-rex bite and it’s huge. I will also say “are you going to lick it or kiss it?” or “are you going to take 3 bites or 4?” He feels more in control. If your child has a problem with getting her fingers in the food, or getting their fingers messy, keep a wet washcloth beside her – that helps us too. He doesn’t like the juices or crumbs or whatever on his hands.

We have several things we say when the anxiety starts to get bad. We say things like “what’s going to happen if the taste “surprises” you?” (we never say “if you don’t like it”) I will say things like “is it going to bite your nose? Are you going to explode? Is it going to hurt you somehow?” and he laughs and says no and then it breaks the concern and he feels better about it. Important- if you seem frustrated and anxious (which I always was about food) he will get frustrated and anxious. He has to see that it’s just food. It isn’t a big deal. It’s just fuel for our bodies. Help your child take the control factor out of it without you being in control – that can lead to more issues later on – anorexia and stuff. It’s JUST FOOD. It’s no big deal. That’s how we approach it now.

My goal is to have him eating something he can take for lunch next year. We aren’t there yet. I mean, he could take stuff. I have plenty of “meals” I have made up over the past couple years – crackers, cheese, cucumbers, a fruit. And at camp for a few weeks this summer he took spaghetti and ate it cold. But a sandwich or a wrap would be awesome. He won’t be buying hot lunch for a while, I guess. Maybe on pizza day if it’s the right brand

It sounds like a lot of work. At first I was like ????? After our first appointment I was so stressed out. It felt like something I just couldn’t do. Changing the way I have been doing things for the last couple years? How would I manage. I think most families probably eat more meals together and haven’t given up cooking family meals like I did. So some of the work is already done for you. It will be the playing, the steps, the waiting until he/she is comfortable with the food to actually have them taste it. That part is the work. But it’s worth it. Yesterday my son ate meat at food therapy. Real meat. That wasn’t pureed into his marinara sauce. I am going to start pushing him a little more, start really trying new things. Soon, he will be eating stuff I never imagined he would eat. Then this morning when he went to give his dad a hug and his dad had been eating a piece of cheese on toast, he freaked out that his dad’s fingers were dirty and getting “that yucky food” on him. We still have work to do. LOL

Remember, this might not seem like it needs to be so anxiety ridden to you. You may not understand WHY your child can’t just eat normal foods. You may not understand why one food is just fine and another is not. But you don’t have to understand. Just try to be kind, don’t force, and remind them it’s JUST FOOD.

Dear Synthroid:…

Aside

Dear Synthroid:

I hate you.

Please keep on keeping me alive.

Love, Ashley

 

This is what my relationship with my thyroid medication is like. Thyroid medication is an interesting thing. I had my thyroid taken out – because of cancer. Apparently if I didn’t take thyroid hormone replacement I would eventually go into a coma and die. I know that when I haven’t taken it in the past to get ready for tests (we call it going hypo as in hypothyroid) I get extremely sick. The worst time was when my TSH got up past 86. Normal is between 1 and 3 IU/ml. That was when I was getting ready to do a radiation iodine dose. It was meant to kill any small cells left behind after my surgeries. I was so sick I couldn’t lift my new born who was maybe 12 lbs by then. Maybe. I had to have others feed him, burp him, dress him, change his diapers, bathe him. I missed all those little nice moments. My mom or my sis-in-law or some ladies from my mom’s church would take care of him physically and would put him on my lap or lay him beside me and he and I would coo and stare at each other. 

Wait, back to the topic. I was so sick I couldn’t carry my child. I couldn’t shower without being so exhausted I couldn’t walk. I couldn’t think, I hurt all over – I mean think of the worst flu you ever had and how all your bones and muscles and joints ache for a few days. That’s how I felt. Times 10. For 2 months. I was moody, I was freezing all the time, I couldn’t digest right so everything I ate made me sick. I couldn’t even lay in bed and read because my eyes went blurry until I was on my meds. 

So, you see, I know I need this medicine. I know my body needs to have this hormone replaced. But in MY opinion the options for thyroid replacement hormone are not all that great. You have Levothyroxine – which is the generic name for several different brands of T4 hormone. I take the name brand synthroid – I have had the most luck with it being a steady dose and not making me sick, etc. 

Most doctors these days say that MOST patients do fine with just T4. If you have a properly functioning thyroid, your body produces T3 and T4. But supposedly our livers are supposed to change the T4 into T3. And honestly, all my labs come back normal – my T3, my T4, my T3 uptake. So my liver must be doing it’s job. 

Some patients need to take T4 and T3 to feel right again. Sometimes their livers just don’t do what it should. So they take a T3 pill also, the most common brand name for that is Cytomel.

Some patients take a combination of T4 and T3 in a more natural form of the medication. PLEASE, if you want to try this, talk to your doctor – do NOT go to the vitamin store and buy the thyroid “boosters” they have there. It is actually very similar to the medicines sold by prescription, in make, but it is not properly stored, it is not usually properly dosed, and it can cause serious damage to people who need this hormone to live because they can’t keep their hormone level at the right level. There ARE prescription medicines made from dessicated bovine or porcine thyroids. One is called Armour Thyroid. Some patients feel much better on this more natural, more “complete” medicine. My doctor won’t let me try it because I am a cancer patient. I need to keep my TSH at a certain level (an abnormally hyper level) to help keep the cancer from growing. My doctor says she can’t control people’s TSH as well with the Armour. Or with generic brands of what I take for that matter. She told me she has let several of her patients take Armour or generic brands of levothyroxine, but never cancer patients. Only those who have a functioning thyroid that needs help with medication.

So, back to “I hate you synthroid.”

Right now I am in the middle of a dose change. For 5 years I had absolutely no problem with my TSH fluctuating. It didn’t matter when I took it, whether I ate or drank with it or not, what part of the day, what I ate during the day, etc. Some people have really bad absorption problems. They have to take the medicine a couple hours before eating on an empty stomach, no dairy or other calcium or iron or coffee or grapefruit or nuts or cabbage, or…. within 4 hours of taking it. Some people have to really struggle to keep their dose at the right level. I never did. I took it with or without food, with or without vitamins, with or without fiber.

Last fall I started having my TSH fluctuate. I really couldn’t figure out why. I hadn’t changed anything. We have had to change my dose 3 times in one year. 

When we change my dose it affects me greatly. I get moody, I get anxious, I get sleepless and restless – though not a productive restless. I get angry. I get hungry. I crave carbs and salty foods. I get aches and pains, I get frustrated. I get greasy skin and dry scalp and my hair falls out in chunks. I get heat and cold sensitive, I get tired. I think the worst is my temper and mood swings. They are hard enough for me to deal with, but my husband and son seem to get the worst of it no matter how hard I try not to let it affect them. Last time we changed it I yelled at my husband in front of his friends. Which is a HUGE no no in his culture. 

Anyway. I love that the synthroid keeps me alive. But I hate that it affects me so much in so many ways. I wish WISH someone would come up with something that works better for us. We need something better.

Thankful to be ME

Aside

I am so thankful I am not a Russian wife.

I mean, don’t get me wrong. All the Russian or Armenian Russian women I know are really nice and they are wonderful wives and mothers. It’s just – they are so different from me.

A little background: I grew up in a family where both parents worked full time. My dad helped a lot with things like cooking, cleaning, laundry, yard work, etc. He had no problem taking care of us, he knew the basic routine, knew what we ate, knew what things were expected from us, etc. I wouldn’t say he did 50% of the work in the home, but he did a lot compared to most dads I knew.

My husband’s cousin has to have his mother take care of his laundry, cooking, cleaning, ironing and more if his wife leaves town. Yep. He can’t do his own laundry or cook for himself. You see, most of the men we know live with their mothers before they get married, then they live with their wives. They never really know how to take care of themselves. This isn’t an across the board type of thing. I know a couple Russian/Armenian men who can cook, make coffee, do some laundry and could probably keep a house in decent shape if they had to. My husband can do laundry and clean, but the most cooking he does is sandwiches, leftovers, and fried eggs. He hates ironing but can do it if he has to. He can take care of our son for a few days if he has to. Though the amount of junk food, juice and cookies increases dramatically while the amount of rules followed decreases dramatically. He can follow our routine pretty well and dress, bathe, and put him to bed.

Now that we have the background out of the way, here is why I am glad I am not a Russian wife.

One example: My MIL’s birthday was on Friday. She had worked several nights late, and then was up several nights really late cooking. I thought she must be going to have friends over on her birthday, but apparently I was wrong. (this is where it would come in really handy to have a Russian daughter-in-law because I can’t cook a single thing she does. I have tried a few and I failed miserably.)

So, she was up late and then on Friday she filled our grocery bags with tons of stuff and took it to work. It turns out she was making food to take to work to celebrate her birthday with her friends at work. At a restaurant. No, you don’t have to read that twice. She works at a Russian restaurant and she took food to have dinner with them. After they closed up they all had dinner together and some glasses of vodka or wine and celebrated. They gave her some flowers and such, but I just couldn’t get over the fact that she had to cook her own birthday meal. These women can obviously cook. In fact, that is how it usually goes. If you do something for your birthday it isn’t going to get pedicures and coffee or lunch or perhaps seeing a movie with a friend (like I would do). You cook a huge amount of food, have people over, and then have to clean it all up. It baffles me. I’d never have a birthday party in my adult life.

So, today is her day off and she is tired because she worked a lot of overtime last week, and she really needs to rest, and she says her headaches. And does she rest? No. She cooks all day long. She tells me that her friend might come over later for dinner. A friend. Might come over.

Seriously? I love my friends. I ain’t gonna cook all day for them. I’m talking like 8 hours. I might do a nice lasagna that takes 2 hours. Maybe. If I want to do something special. More likely we will meet somewhere and go out.

I love that she wants to give of herself – that cooking for others makes her happy. I love that she is thankful she CAN feed her family and friends. I love that she loves to cook (cause I don’t have to very much anymore). But honestly, I’m glad I’m not her.

Love Wins

Huh. I have the need to write today I guess. This week really.

There is this blog that I read. It’s called “Momastery”. No, not mom mastery. Momastery – like a monastery. With moms. http://momastery.com/blog/what-is-momastery/

Anyway, this Glennon that writes the blog, she has some great great great advice. I suggest you read her if you don’t already. She also has some great sayings that somehow seep into your head and become little mantras to get you through your days, or that pop up when you are in conversation with others.

One of those sayings is Love Wins.

Love wins.

It’s simple. Seems like it’s too simple. But honestly, it’s not.

This week we have had some attacks on several US embassies. We have had unrest in our country – or more specifically in other countries, but surrounding our citizens and officials. In these cases, in these instances, I can’t help but think that some love could help. Could help heal, could have help prevented. If we all saw each other as human beings, capable of and worthy of love, if all people could look inside themselves and find love for each other these things wouldn’t happen. If we realized that no matter what religion, what country, what family, what political affiliation, what sexuality, what color, what culture we all are or come from – if we realized that no matter what all that other stuff is we are really the same. The same inside. We want love and we want to love. If we stopped to realize that, then I believe there would be no wars.

I have a friend who mentioned a family member made insensitive and harmful remarks toward her baby because she is biracial and because her father isn’t in the picture. I can’t help but think that stopping, putting some love in her heart, thinking of what that baby means to the family and how wonderful she is could have helped avoid this very situation.

Love wins.

When I am frustrated with my son. When he isn’t listening, when he is fussy or cranky or not doing what I have asked. When I am just exhausted and I want my own time… Love wins. If I look in his eyes or hold his hand or really listen to his sweet little boy voice, I realize he is still so little. He still just wants my love. He still needs my love. If I stop and think about this and think about how much I love him, I am so much kinder. So much more tolerant. So much better of a mom.

Love wins.

When we put some love in our hearts, stop, slow down, and let that love be the driving force, suddenly we are no longer mean and brusque with our fellow people.

I was in the store the other day. There was only one lane open since it was 9 am. I was picking up a few things and then wanted to get home and rest a bit before going to pick my son up from school. I was behind a woman who was doing her entire month’s worth of grocery shopping (or possibly shopping for a small school). I was not in a hurry, so I took a deep breath and reminded myself that I was NOT IN A HURRY. Then at the end she handed the checker LITERALLY about a hundred coupons. The checker sighed a big sigh, and then both of them turned to look at me. Because I had already taken a deep breath, reminded myself that love and kindness and decency to our fellow man (woman) is more important than me getting my starbucks and sitting on my couch, I was able to smile at them both, and act as if I had no idea what they were staring at me for. Surely they both expected me to sigh, shift my weight, roll my eyes, look to the person behind me with a knowing grimace, and in general act like an ass. And I have before in this exact same situation. But this time I didn’t. Because love wins. And you know what? The two people who came behind me did the same thing. No one sighed or grimaced or winced. I bet everyone in that line that day had a better day because I did NOT start the chain reaction.

Love wins.

Even in the little things. Even in the little ways. And all those little things added up makes big things.

You know what the funny thing about love is? When you give it, it doesn’t get smaller, it gets bigger. I give someone love, I still have more love. And that person has more love, and then they pass it on.

Love wins, my friends.

It does.

Try it today.

Running Away

I have this fantasy in my head. 

It’s been there for a good 29 years or so. 

It’s the place my mind wanders to in order to escape something hard.

I dream of having a cabin in the woods. With no neighbors, no people around at all. In fact, I’m pretty sure I wouldn’t tell anyone where it was. If family wanted to visit I’d meet them at the bottom of the mountain and bring them up all black hood, blindfold and earplugs style. Then take them back when the visit was over. I dream of living there with my husband and son. (in other years it might have been a friend, a family member, or by myself) I would home school him, we would have a garden, my husband wouldn’t have to work. We would stock pile supplies for when we get snowed in, take walks in the woods, watch deer come in the morning to eat our flowers, and listen to the birds sing to us. My son would be dirty All. The. Time. 

No drop in visits from friends or family. No room for people to stay forever. Just us, in a little cabin in the woods. 

This is how I run away nowadays.  

Awesome things Russia has that America doesn’t

There are quite a few, but I chose my favorites from my trip there. I was going to include some wedding ceremony stuff, but I think that will have to be a whole separate post.

1.Ice Cream in a bag. You go to the little corner store and in their freezer section they will have ice creams called “plombier ice cream” (translated of course). They are vanilla ice cream cones in a bag. Cone and all. I know, you are thinking “how good can ice cream in a bag be? It’s darn good.

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2. Knowledge Day. On September 1 every year the Russians celebrate Knowledge Day. It’s the first day of school, whether it’s Saturday, Sunday, Monday, or what have you – it’s the first day of school. The kids get dressed up in white and black nice clothes, the girls put GIANT white bows in their hair. They take flowers to their teachers. They have parades of the first and last (entering and graduating) class. They do a little program and see their classrooms and go home. They even have certain sayings – like “perve class, perve raz” which means first class, first time. Some times the first class (entering class) students ring the school bell while being carried on the shoulders of a final year student (graduating class). They also have a big family dinner and often give flowers to mothers and grandmothers. There is usually a special treat or dessert for the children. It’s a big holiday type atmosphere. Especially important to those first year students.

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3. Turkish Coffee. Made in a special pot called an Ibrik, with finely ground coffee and sugar and water. Instructions on how to make it are VERY specific, and you drink it out of tiny “demitasse” cups. It’s very strong, and honestly I don’t like the taste too often, but the tradition of it is really more important. When you get together with friends or family the hostess usually makes turkish coffee.

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4. Live monkeys to pose for pictures with. In clothing. Need I say more?

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5. Vodka by the gram. When you go to a restaurant you order a certain amount of grams of vodka for the table. Say 300 grams for a couple people. You do not order 5 shots. You order 500 grams. They bring it in a pretty glass bottle and give you shot glasses for the table. You only drink it straight. No mixers. Even by little old women. Pickles, lemon wedges or smoked fish for chasers. (or, if you can’t do that, soda)

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6. Napoleon Cake. Honestly almost every desert I have had is delicious. But my favorite and my husband’s is napoleon cake. It is a many layered cake with light flaky dough layers and thick creamy layers in between. So nummy. (the picture I have here has decoration on top, but I have never seen that – usually it is covered in crumbs from another layer of flaky crust.

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7. Banya. To be fair I have not gone to do this, though one of our friends here in Denver does have one. It’s called Red Rocks Banya. I don’t think I can take the heat. It’s usually done only with the same sex. A group of women will go together or a group of men. I am under the impression more men go than women, but that may depend on where you live, or the community you are in. It’s a type of sauna/spa ritual. You go sit in a super super hot sauna naked. Like so hot it can fry your brains. Then someone beats you with sticks. No really. They beat you with birch, or eucalyptus branches which still have the dried leaves on them. All over your back and legs and stuff. Supposed to increase circulation. Then you go jump in a cold pool area, or you roll in snow, or something cold like that. (Here it is a cold pool.) Then you re-enter the sauna. Sometimes you repeat this several times, but the beating is only one time usually. Then you go into a still hot but dry area and play games, drink beer or vodka, and talk with the other men. It’s supposed to cleanse your body of toxins. Sometimes they do honey masks or mud packs. I won’t go into what the mud packs are. I will just say they are “good for the prostate.”

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Burned Toast

My FIL toasts everything. I mean everything. He toasts crumbly rye bread, thick rolls, tortillas. Yes. Tortillas – he folds them into quarters and toasts them. So now we have a lot of burned stuff in the bottom of our toaster every day and it stinks bad. No matter how many times I open it and clean it and shake it over the sink, it stinks when someone puts something in the toaster.

I talked to my husband about getting a toaster oven just for him. Because it is driving me INSANE. I mean, really, burned toast smell would be a terrific torture technique. 

Text conversation between my husband and I tonight:

Me: “Can you stop and get a toaster oven on the way home? This burned toast smell is totally driving me insane.”

Hubby: “??? you want me to stop and get a toaster oven? At 10 at night?”

Me: “could you? I just hate this smell.”

Hubby: “Can’t you get it tomorrow?”

Me: “But then I have to smell it in the morning too.”

Hubby: …….

Look, torture should be avoided at all costs people. Don’t judge me.