I'm honestly surprised at myself that I still feel shock at bad news. After all this time and so many years of hearing bad news in this realm. While we were devastated and defeated at having to face another loss after Aidia's birth, we felt like "at least we know why." Kevin had been feeling some pain that we thought was scar tissue before, but another miscarriage we "knew" it must be more sinister. After all, Kevin's DNA issue was finally revealed after 6 consecutive losses (and after we had treated everything else known to man) and after his surgery, we miraculously got our girl. So, we fully expected to have another surgery this year, re-repair whatever needed to be fixed, wait the ten months of healing, have that last miraculous rainbow babe, and be done with it forever.
But then I did it. I said it out loud. Friends, never voice your worst fears aloud ok? Just don't do it. I actually said, "I think I'm most afraid of your DNA coming back normal, because then we would have nothing left to fix." And when that week passed and those results came in, wouldn't you know, Kevin's DNA looked even better than it did right before Aidia was conceived. And I was floored. And physically ill. And thought aloud, "what else could possibly be left?"
I was reading back through the Journal of Human Reproductive Sciences, an article called "Evidence-based management of recurrent miscarriages" (light reading I know) and it was all I could do not to laugh to myself. We have so many risk factors that the odds seem insurmountable. It mentions Leiden Factor V (I have it), MTHFR (have it), thyroid and autoimmune disease (check, check), male factor (had..thought we fixed with the surgery). The list goes on. I think there is so much more to MTHFR than medicine understands right now. Especially as it ties into neural tube development. Correlation is not causation, but talking to different doctors and other loss moms over the years it seems like there is a lot of smoke and we just don't know where the fire is yet (or how to treat it.) Many doctors treat this idea as some sort of internet conspiracy, but I've noticed the good ones know there is a bit more to it.
The article also mentioned several issues that might be a problem that I have either been tested for and found not to have (like uterine abnormalities or antiphospholipid syndrome) or recommendations we've tried that have not helped like Lovenox injections. We have spent so much money that we didn't have on treatments and testing like this. Is the answer really illusive or is it really the luck of the draw with us? It seems impossible that Kevin's surgery didn't make Aidia's birth possible- but of course we can't rule out that we didn't just improve our chances.
So we are left to decide now if we want to continue to try, and wish for the best, treating all the risk factors the best way we know how (because when the baby seems healthy, for the 2/9 times that they have been, they seem to do fine.) We can also consider doing karyotyping to see if there is something weird genetically going on with us that would explain so many lives ending early. The problem with karyotyping is, it may or may not change or course of action. I guess it depends on how bad the odds are. So far I'm feeling pretty bad about my 2/9 odds. I felt better once I thought they were fixed after the surgery, we just don't know if Vincent was an outlier loss. It's a cruel thing to think he could have been a "random 1/4 loss that just happens."
Karyotyping can also be wrong... it's not a guarantee.
Also, we aren't prepared to do IVF with ICSI (where you genetically screen the embryos before transferring them.) It's not in our realm of possibility.
And karyotyping is expensive. So do we do it to find out, or do we just try again to see if the odds are in our favor? Also, Kevin is increasingly concerned about my well being.
I don't know how many tries I have left in me. One for sure. Make it an even ten. Not sure what we will decide past that. I don't know how I will ever decide on doing something permanent (like a vasectomy or something) because it will be so painful. Ending on such a painful note. But I still have ten years of fertility left in me, and I'm not sure if I could endure the limbo that long with something less than permanent. Either wondering all the time if we should try again, or if we will lose again, or start over again with a miracle baby. I have been told I'm too young to worry about it, but it's actually worse that I'm young because it has to be a choice to give up my fertility that I want more than anything, to save my sanity.
We talked about quitting while we were ahead. We really did. It didn't feel right, and we were so hopeful to give Aidia a sibling a little bit closer to her. Jack will graduate high school before she starts jr. high school. I really wanted her to have a sibling at home to share the journey with. I think it must come down to God's will and just hoping I can learn to live with the pain of whatever will be will be.
It's probably just hard to imagine now. I am still at that point where I cry like four times a day. I probably have full blown postpartum depression. My thyroid feels pretty sick but I'm still waiting on bloodwork to come back. I think part of the reason the first month (at least) is always so difficult, is because even when you're in a place to feel joy, you're not ready to most of the time, you're not willing to feel joy yet, so you push it aside. Except in very rare moments.
I trust God, I do. He's got it figured out. He gave me Aidia in the right time. He led me to the right medical information that allowed us to have her. I just, don't understand right now. And I hurt.
I told myself often while pregnant with Aidia, enjoy this, even though you don't want her to be your last, she might be. So I really tried to enjoy every second of it. And I think I did my best (despite all the anxiety.) I had so much joy. And still do. I love every day and stage with Aidia. But I think since we believed we solved the mystery and problem of our losses before Aidia, I thought we would have another. It makes this that much more difficult. I honestly can't believe we're back here.
I was so afraid this would happen. It's not like my anxiety is unfounded. All of these things I'm afraid of keep happening. It starts to spill over and makes me afraid of basically everything. I feel like each loss has changed me; taken a piece of me back with them. It's like my brain has been rewired.
I tried to take back "control" of my life this month. I tried to do spring cleaning, go to hot yoga, go for a jog. It was like skipping ten steps. I'm really not even ready to get dressed every day, and I think it's going to take time for me to realize that. Like, I'm just going to have to survive this and I can't fake it or force it. I just crash and burn harder when I do. I'm just trying so hard to feel better, to feel like actually living, and it's impossibly hard.
I went to a new counselor. First time I've been to counseling in about four years. I mostly went because I love Kevin and I know how much he wants me to get some help. I believe in it, I just felt so raw still. I did not feel ready. But I've started the process. This was the second counselor to tell me I have PTSD in the initial visit, but I'm hoping she'll help me more with how to treat it. Like, I already knew I had it, but I feel like it's running my life right now instead of being part of my life. I get really angry at things lately, then come crashing down into really intense sorrow or panic. I'm hoping that I can learn some ways to somehow be out in the world with this pain and still be ok. Happy even.
I'm always trying to find that balance between pushing myself, and being kind to myself. I never know what is truly "my best." I have really appreciated this story this week if you haven't read it before. It really explains how it feels to live with any kind of chronic illness. Hashimoto's, you name it. So let's all be kind to each other!
The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.”
I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino
