HeartStrung

photo by Ron Place I walk in smiling. I'm not necessarily keen on meeting new people, especially new people who are doctors, but I know that after the first appointment they are no longer new and every subsequent appointment will be easier. I walk in smiling. I'm grateful to be seeing this doctor. I'm hopeful that some benefit will come from the appointment. Or at the very least, I will be heard. I walk in smiling. I like people. I want to be a blessing to everyone I meet. And I know that sometimes a genuine smile from one person is all it takes to turn a person's day around. I walk in smiling. I know how this is going to end. But I walk in smiling. I wait. I do it with patience, even while I wonder what the point is of showing up 15 minutes early, as requested, when I will end up waiting in a colorless room for 45 minutes beyond my appointment time before they get to me. I wait with patience. I speak. I try to be clear, even as I use unusual simile...

It's November. November 2016. The air outside is chilly. The trees are half bare, their vibrantly colored leaves scattered on the ground, curling at the edges as their remaining moisture seeps into the air. My first friend-in-motherhood has been dead for a year now, her tragic death still feeling as fresh to my heart as the day it happened. And the anniversary of my getting sick has come back around. This month we mark five years of undiagnosed illness. Five years of unexplained, untreated pain and ailments. Five years. It is safe to say there is a lot of reflection happening here. I remember arriving at the testing facility for my first MRI in 2012. I'd driven there alone, not knowing what to expect. My palms were sweating as I signed in at the desk. I was afraid. Afraid of what the MRI would show. Was there a tumor growing in my brain, pressing on a cranial nerve in my ear? Was this MS? Was it nothing? The receptionist asked me some questions, one of which was how lon...

If you ask me how I'm doing you are likely to hear me say, "I'm okay." But...how I'm really  doing is so much more complicated than a quick reply to a passing question. I'm in a rough patch. It's been going on since school started at the beginning of September. Even though Mr. Amazing does the entire morning routine while I sleep, somehow I'm at least as exhausted as he is, possibly more. Whether or not I'm in charge of getting the clones off to school in the morning or not, school season brings with it a lot more activity. Our days are fuller. Or their days are fuller. And somehow it's affecting me, regardless of how involved I am in the busy. I can't get back to my base level of sick. Maybe it's all the car rides and the fact that the clones actually need clean clothes so the laundry has  to be done. Maybe it's the way we end up juggling dinners around soccer schedules. Maybe it's all the blood draws and doctor app...

“Brain fog is needing a reminder to remind you what your reminders are for.” — Selena Marie Wilson One thing most of us chronic illness warriors have in common is brain fog. It's like driving at night through heavy fog, when your headlights are bouncing off the moisture in the air and you can only see a few feet in front of you. You're not exactly sure where you are. You're not sure how soon the corner you need to turn at is approaching or whether or not you've passed it already, or wait...were you even supposed to turn? It is a couple bounds past "pregnancy brain" and a few leaps short of dementia. It is not being able to remember the names of teenagers you've known since they were in kindergarten. You open your mouth to cheer for them during a soccer game but their names won't come into your mind quickly enough. You echo the other parents around you, hoping no one realizes your slightly delayed cheering. You never know what day it is. You...

During all of the summer Neurology nonsense, I also set up an appointment with a Rheumatologist to have my cantaloupe-sized-swollen-knees looked into. Rheumatologists apparently aren't as busy as Neurologists and I was able to be seen within a couple of weeks. He ordered a long list of blood tests (13 vials of blood) most of which came back with normal results because that's just how things go for me. The Rheumatologist decided to look into a couple of things because even though my results were within normal range, they were on the lower (or upper, depending on which test we are talking about) side of things. So I headed on over to an Immunologist, who, in case you were wondering, was also able to see me within a relatively short time period. (Which leaves me wondering--Why are Neurologists busier than every other specialist?) The Immunologist gave me a shot as part of his investigation into how my immune system is functioning and sent me off for  more  blood tests but t...

Sometimes I have the worst luck. Maybe luck isn't the right word. But whatever is the right word things have a way of working out in unexpected and somewhat unpleasant ways for me. Not always. But when it happens it seems to come in a downpour. In June, I chose a new Neurologist for myself. I researched all of my options as best as I could and chose a woman doctor who I had a very good feeling about, feeling that she was going to be the right doctor for me. I got my referral and set up an appointment 4 months out, because getting in to a Neurologist's office always takes months. I guess they are very busy people. I asked them to put me on the cancellation list, hoping that I'd be able to get in to her office sooner, rather than later, knowing full well that I'd be on the bottom of the list so it might take a while. And so then I waited. As summer progressed onward, I slowly moved up on the cancellation list. Neurology called three times offering me a sooner appoin...

I've been feeling really frustrated with my body lately. I don't want to just sit around, barely moving, accomplishing nothing, feeling bad physically and emotionally. So I get up. I clean. I do laundry. I bend and straighten and walk. I push myself to get done all the things I need to get done and want to get done and could have gotten done more quickly and efficiently before . But I can't do it quickly anymore. I can't do it efficiently. Half of it I can't even do. I get through some and then I have to stop to rest. Mr. Amazing shakes his head. "Why are you doing this to yourself? You are doing too much," he says. I know he is right but I don't want him to be right. I get back up. I push some more. I crash. I lay in bed the whole next day. And the next day after that. Five days later, I still haven't recovered. I'm miserable. I'm frustrated. I'm thinking, I can't even clean the house without ruining the rest of the week. L...

Dear Fellow Warrior, You are sick but it isn't your fault. This can happen to anyone. Right now, you are that anyone. I know what people have said to you. It has also been said to me. I know it hurts. I know you walk away from the conversation feeling as though that person is right. That one way or another you deserve  this or caused  this to happen or that you are even causing  it to continue. But what they said is not true. This is not your fault . Disease does not discriminate. This did not happen to us because we are negative. This did not happen to us because we don't have enough faith. This did not happen to us because we deserve it. This did not happen to us because we've made mistakes in the past. This did not happen to us because we are imperfect. This did not happen to us because there is something wrong with who we are. This just happened. And it happened to us. Just because someone says something does not make it true. I'm not saying that ...

I wrote this post almost a month ago but didn't publish it because I was still trying to wrap my mind around everything. I was upset and frustrated and feeling pretty hopeless. I offer it now, even though it is totally after-the-fact and included an update at the end.  I saw my general practitioner a few weeks ago. I needed to discuss a medication with him and wanted his help figuring out which specialists to see next and what to do for myself as my health continues to decline. It was one of the worst appointments I've ever had with my general practitioner. I did get my referrals but I also got some things I wasn't expecting. This man has been my doctor for 13 years. He has watched my children grow up since birth. He stitched Clone 1's face back together, in office, after she took a tumble and cut herself open. He was the first person I saw when I started feeling unwell almost 5 years ago. He typically has a way of setting me at ease about whatever is going on...

I have a plethora of time with which to think so I often think about who I want to be. Specifically, who I want to be with this illness. As you might imagine, I would prefer not to have a chronic illness. I wouldn't choose this for myself. If I could get rid of it once and for all, I would, no hesitation. As it is, I actually have no control. It wasn't a choice and I have to live with life being this way for as long as it is this way. There is no amount of resolve, dedication, optimism, anger, or fear that can change my chronic illness. I'm fairly certain that you, Dear Reader, can relate, one way or another, because I know we all go through challenges and circumstances where we have no control. Your story is different than mine but we all know what it means to suffer. We have our lack of control in common. It is difficult to be in circumstances under which we have no control. It can be a very depressing place, full of hopelessness and unpleasant emotions. We have...

Fourteen years ago on this day, I married my best friend. Mr. Amazing and I got married outside a little church in Colorado, with the beautiful Rocky Mountains as our backdrop. I wore my mother's wedding dress, which was originally her mother's wedding dress. Mr. Amazing's uncle was our Minister. It was a beautiful day, sunny and 70, just as I knew it would be, despite the weather man predicting cold and potentially snow. We stood in front of our families and beloved friends and recited vows that I had struggled to write and be satisfied with and then we exchanged our rings. With this ring, I thee wed... We pictured ourselves still loving each other when we were old, our bodies stooped over, shuffling from room to room in that characteristic elderly way. He might have a form of dementia by then but of course he would still remember me. I might be disabled by then but we would still cuddle and laugh our nights away together. We thought that was all far far into ...

You arrived and there we were: two souls, one infinitely large universe, a sky full of stars sparkling like diamonds in our eyes. And it was as if all of space and time compacted. We could carry it all in the palms of our hands. And then the weaving began, creating a tapestry of lightness, of being, that burrowed beneath our skin,                                 and entwined our very existence. For Mr. Amazing   11/22/13

I feel pretty strongly that Charitable Judgments come from Love and Critical Judgments come from Fear. I work diligently to keep my judgments of others charitable and favorable. Sometimes it is really difficult. I often struggle with identifying the line between charitable judgment and critical thinking. I want to believe in the light within us all. I want to believe that when we are at our worst, we are not being our true selves. I want to believe this of everyone. My fears often get the best of me though. I fear those friends of mine who won't talk to me anymore never actually cared about me at all. I know this isn't true. The Charitable side of me says, she is just having a hard time dealing with the reality of my illness. She is just having a hard time letting things change. She just doesn't know what to say. I try to silence the voice of fear inside of me that says, she thinks I am boring. She doesn't care about me. I don't want to listen to that cri...

I am a spoonie. (For more information you can find The Spoon Theory  written by Christine Miserandino  here .) I am happy to be a part of this community. This is a group of some of the most compassionate, honest, accepting, supportive people. It feels a little bit like I've finally found my tribe. But I also seem to have a hard time accepting my inclusion. Even after 4 years, I still dabble with denial. This past weekend we all went out to do errands. I felt horrible but didn't particularly want to stay home alone and leave Mr. Amazing to get all the groceries and  help Clone 1 shop for clothes (because this is not an easy task) so I piled into the car with everyone and hoped we wouldn't be gone too long and that I'd be able to manage the car ride and all the stops. Four hours later we came back home and I took up residence in the rocking chair while pain took up residence in my legs. I had made it through the day with smiles and enthusiasm but it took ...

"Privilege is a headache  that you don't know  that you don't have." ~Ani Difranco  I remember playing on the stairs when I was growing up. I liked to put my little pink bunny on the railing, propped against the wall, and send it sliding down the banister to the floor. Occasionally, I'd try to race the bunny to the bottom, to be there to catch it before it fell. Sometimes I had my sister or my friend stand at the bottom and catch the bunny. I'm not exactly sure why I found this activity so enjoyable but I did and I hoped that some day my own children might come up with their own stairway-fun. My in-laws have a nice long stairway in their home leading to a basement. The clones liked to roll stick cylinders down the steps when they were younger. They would race their sticks and rank them according to which rolled the farthest. Now they hang out on the stairs with stuffed animals and action figures and they run up and down them numerous times throug...

I had to go to the dentist today. Admittedly, I don't go out much anymore. Partly because I don't drive. Partly because I don't often feel well enough to go out. Partly because I worry about what will happen. I sat down in the chair and had to tell the hygienist to beware of my twitching. It was mildly embarrassing to bring up but we just moved on and I willed myself not to twitch, especially not to twitch my head because I was afraid I might get stabbed by their torture tools. (Is it just me? Their tools are creepy and archaic looking, right?) Wishing and willing it not to happen doesn't usually heed the desired results but it is all I can do. I have absolutely no control over my twitching. My head didn't jerk. Well, okay, that's not quite true. It didn't twitch at all while she had tools in my mouth. There were a couple head and full body twitches that happened behind her back. There were a number of subtle arm and leg twitches that went seemingly un...

I met one of Mr. Amazing's coworkers this week. She is kind and funny and has an infectious laugh. She is 32 years old. I remember my early 30's. I'd waited my whole life for these years, anticipating that I'd be wiser, calmer, put together. I remember things were good when I turned 32. Both clones were in elementary school and I spent time in their classrooms, getting to know their peers, their teachers, their school. I loved it there. I had a job at a day care and spent my mornings with my favorite demographic: 2-5 year olds. I had friends and interacted with people. The laundry was always done. The bathrooms were always clean. I played outside with the clones and took them hiking and to hands-on museums. We had play dates and birthday parties. We had fun. But that was all before. Three months after turning 32, I got sick. "May I ask what you are sick with?" Coworker said. I shrugged my shoulders. "I don't know. They can't figure it out....

Clone 2 read  Conversation with Myself  the other day and asked, "do you really hear and talk to yourself like that, Mom?" Yes. I really do. I have two sided conversations with myself as if I'm actually talking to someone else. I don't know what the conversations other people have with themselves in their own heads sound like. This is just the way I do it. I've always done it this way, though I will admit the dialog has changed in recent years. It used to sound very much like there was a bully in my head. But that is changing. I've been trying to learn to be my own best friend. Part of my reason for this is because right now, I'm really the only person who can provide for myself exactly what I need. Other people try but for the most part I can't be satisfied. For example: I don't want people to ask me how I'm doing because I don't want to complain, I don't want to freak out the healthy people, I don't want to bore the heal...

Me: I can't do this anymore. Brain: Yes you can. Me: No. I can't. Brain: Yes. You. Can. Me: You don't understand. Brain: I do  understand. I'm the only  one who truly does understand. Me: Fine. But I still HATE feeling this way and I can't do it anymore. Brain: It will pass. You'll feel better tomorrow. Me: No I won't. And so what if I do? It's just going to come back again another day. Brain: You don't know that. Me: Yes I do. It always comes back. Brain: You make a good point. Me: Thank you. Brain: You're welcome. But still, it will pass before it comes back. There's a good day coming. Can't you just look forward to the good day? Me: No. Brain: Why not? Me: What good is the good day  when it's constantly being replaced by another bad day ? Brain: Well, the good days give you hope. Me: No they don't. The good days suck just as much as the bad days. They m...

I'm tired. I can't do this anymore. If I never felt this way again, it would be too soon. This illness has changed my entire life. Every relationship I have or had, the things I can do and how I do them, my conversations, my accessiblity, my relatability. Nothing has been left untouched. I feel like I've given up so many things I love. Just for today I wish I had something identifiable. Something surgical. Something treatable. I'd even take something terminal. At least there would be an end to it. No one understands. No one can relate. I've never felt so alone, so unsupported, so much like an island. Most days, I can handle this. I can deal. I can find a smile, a joke, a lightheartedness. I can find somewhere positive to focus. I can distract myself with making something. Knit. Crochet. Sew. Write. I can find something beautiful to look at, to take a photo of. I can call a friend and let their joy be my own joy. But not today. Today I have nothing p...

It is incredibly frustrating to have symptoms that have to be described but never can be seen. You might think that it would be easy for me since I'm a writer. That I would welcome the opportunity. But the symptoms I experience are just about the most impossible things to describe. I once tried to describe my dizziness to a doctor by saying that I felt like 2 minutes ago I had played dizzy-bat. So not the immediate dizzy feeling but the leftover one. She just stared at me. She had no idea what I was talking about. Initially, I suspected that Dr. Carry was an alien. I also suspected that she wasn't really a doctor because after listening to me she googled my symptoms on her little pink phone. Yes, you read that right. She  googled  my symptoms in front of me and then prescribed an antibiotic for an ear infection I didn't have. I never went back to her again. I also never described my dizziness like that again. Apparently dizzy-bat is not a universally p...

Nothing can prepare you for this moment. As far as you know, it is just another day at another doctor's office. You are sitting in a room. The walls are peach-brown and thin enough that you can hear a mother and a child talking in the room adjacent. There is a poster on the wall advertising Botox injections to help manage epilepsy. There is another poster on a different wall explaining the differences between various epileptic medications. In one corner of the room, there is a laptop on a little fixed table with a cabinet underneath. On the opposite wall is a brown exam table. The paper on the exam table is crumpled in one area. Next to the exam table is another computer on a rolling desk that is hooked up to a machine you are pretty sure is used to torture people. You say out loud that you hope you never need to have done whatever it is that machine does. (In the coming weeks you will find out what this torture machine is actually used for and that it doesn't hurt yo...

It's been a while. I didn't intend for it to go down this way. I started this blog with the intention to write about some of the wonderful and terrible thoughts in my head. I wanted to write at least one blog every week and I didn't want to just write about chronic illness. There is so much more inside this crazy brain. But here we are, about a year and a half since I started this and I haven't even written one post per month. Not only that, but I have very little to say about any subject other than chronic illness right now. It doesn't surprise me that my adventure in blogging has gone this way. I mean there are plenty of reasons why I don't knuckle down and write. There are many days that I can't stand to look at the computer screen. The dizziness and nausea won't tolerate it. Some days I have a hard time tolerating staring at a wall. On the worst days, the dizziness is so bad that I can't tolerate the backs of my eyelids. If the ...