Life is Beautiful

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I heard a song today – one line just floored me:
“Life is beautiful, but it’s complicated. We barely make it.”   (Life is Beautiful by Vega 4)

Really.

Sometimes I feel like I am barely making it. Or like I will barely make it. I mean – really, some times it’s so so hard. It’s so so hurty and brutal and draining.

I know, I know, it’s all about perception. I know that. I know if I find a different way to see it that all that hurty and brutal and draining stuff can actually seem good. Or at least useful and meaningful.

But sometimes – sometimes I just want to feel like I am barely making it and spend a day or two in bed with a good book and some movies and some junk food and myself. Crazy thing about that. Once you are a mom, you don’t get to do that anymore. I know – shocker, huh?

Where was I going with this?

I don’t even know. I guess my point is this:

Life is beautiful. But it’s complicated. We barely make it.

Dissect that a minute and what you get is what life is really all about. It IS beautiful. Truly truly full of beauty and wonderful amazing things. Full of light and color and rainbows and flowers and butterflies and streams and all that jazz. BUT – and here is where it gets complicated – it’s also pretty full of dangers and pain and sadness. I guess we just try to make sure the beauty and joy and the wonder outweighs the rest of it. Part of that is by providing those things to others. Helping other beautiful complicated humans get through it all. And that’s how we make it. Even if it’s just barely.

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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

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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.

Grieving

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I am learning about grieving.

I have had big losses before, but I wasn’t in a place to learn from them. I was too young, or too “not in the moment,” or too “masking my feelings with unhealthy coping skills.”

Today I was able to get some things done. Little things, but things I needed to do. I also got my son and I out of the house for a while. Which we both needed.

It occurred to me as I was sitting in Karate class with my thoughts that part of death is the living people moving forward. Moving on. And it has a lot to teach the living if they let it. Some days moving forward is simply putting one foot in front of the other. Literally moving on.

One day I will be ready to jump back into our real life. One day I will have to. I am thankful that it is our summer break and we didn’t have to come back to ALL of the things we do during the school year. It might have broken me.

For now I am thankful for putting one foot in front of the other. For moving forward little by little. That’s what I could manage today. And that’s ok.

So this morning…

Aside

So this morning I ran an errand, came home, and got my son ready for one of his last days of school.

Simple, right?

Well, you have to remember this is ME and my family I am talking about.

So, I went to Walmart to exchange a swim suit for my son. He has water days this week and is supposed to take a squirt bottle and towel and you know – water stuff – and they will be outside playing most of the day. I have several water bottles from last summer and the winter (we paint the snow with food dye and water) however, some of them don’t work well anymore and so I wanted to get a new one. Well, you know, you can’t have a squirt bottle that looks like a gun in the schools now. So I found one in the kid’s section that actually looks like a squirt bottle, but is more fun and shoots farther. AND a regular one in case.

But then I was doubting myself, so I went around the toy section asking parents “do you think this looks like a gun? My son needs a squirty toy for school but it can’t look like a gun (roll my eyes and act like I’m all put out by all these crazy school rules) so does this look like a gun to you or not?” They were nice about it, except the lady that hurried her kid along away from me after hastily answering and giving me a wierd look. (please, you are the one with 50 lbs of  cat food, lady!)

On the way home I had this conversation with myself:

“OMG! I can’t believe you acted like that about the toy gun rule! You do live where Columbine happened – what if one of those people were a columbine graduate or grandparent or something?”

“What? That’s just crazy – that school is clear on the other side of town. Besides, it really has gone too far. Boys can’t even wrestle around with each other anymore. Or play ninjas. NINJAS, for heaven’s sake.”

“Are you serious? Just try not to offend people who’s friends may or may not have been hurt in Columbine.”

“SIGH”

(I can’t make this stuff up.)

So I get home and my father in law is “showing people America” – meaning he is walking around the yard with his laptop and someone on skype – showing them our yard. Which definitely isn’t the most beautiful yard in America.

OK, compared to my conversation with myself this suddenly doesn’t sound so weird. I guess it’s time to be done now.

 

**UPDATE: I guess the teacher wasn’t happy with my choice of water bottle. I need y’all’s opinion:

Who thinks this looks like a gun?  If ANYTHING it looks like a water hose connector. To me.

 

 

Heartbreaking

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I read an interesting heart breaking blog once in a while. I can’t do it often. It tears at my soul. It’s the story of a family who lost a child. And who are trying to keep moving forward. And it kills me to read.

Today I had a kind of hard appointment. My son’s special ed team thinks it’s a good idea for him to go to summer camps – you know – stay socialized, etc. And honestly we would both go crazy if we were home all summer together. Last year we did a very nice rec center camp series, but this year I am going to be gone for a whole week (which didn’t go well last year) and I think it’s better to have consistency. So I went to a preschool that is close by and has a summer camp. And told them my concerns. I have learned it’s better to be honest. What he needs. What he does that he needs help with. About his eating – and can I bring his own food – which I can if I have a Dr’s note, but they’d like him to at least sit with the other kids and let them put the food in front of him that they are serving to the other kids “who knows? maybe he will try it.” I assure you he will not and this will lead to more consternation than is worth it – and he is on a waiting list to get into a feeding clinic for this very problem with REAL professionals – doctors and OT’s and such. BUT ok – you know best, I am sure….

And then I read this.

http://aninchofgray.blogspot.com/2012/04/home-run.html

Tonight it tore at me again. She writes about her son playing baseball. And the change that occurred throughout the baseball years. She writes of her son, who was not perfect. She writes of his getting upset at birthday parties, having meltdowns when he didn’t win a baseball game, not playing with anyone at recess, needing everything to be “just so.”

And I see some of my son’s traits in her writing. The traits that I worry so much about, and the ones I hope we can help him make into good, wonderful assets.

And then she writes about how by second grade he had started to use his uniqueness to make more friends and find where he belonged. And the struggles with baseball. And her wonderful friend who said ““Don’t worry, gifted kids are just more sensitive, Anna.” at a game where he was melting down.

And then she writes about how her son’s little league group wants to make a special “sportsmanship” award in his name, because of how far he came and how hard he worked to be a better team player.

And I THANK THANK THANK everything there is out there to thank – the universe, the lucky stars, any gods that might be listening – THANK YOU that my son is still here to struggle. And to grow. And to teach me that it is NOT perfection or hope of fitting in, or hope of getting him through one more day with a “good job” from a teacher that matters. But that he is a wonderful, kind, giving, lovely soul that matters. And that he is here, in my life, and I in his, that matters. THANK YOU!