Ludicrous Problems

I’m learning that when asking for help, there are magic words that get people all excited to help and other words that cause nothing but weird looks as people try to figure out the appropriate response.

Surgery. Cancer. Yes! People know what to do about that.

Nosebleed. Um… Huh? 

A few days before my husband left to farmsit for friends, which itself was immediately before he got his thyroid out, I got a nosebleed. I cannot find words that properly explain the severity of this nosebleed. I bent down to pick up a dropped pen and a hemorrhage began. I couldn’t get it stopped and couldn’t get ahold of anyone. I was at my office and thankfully thought of calling the building management and the receptionist drove me to my doctor’s.

My doctor and two of her partners couldn’t get it stopped. When they’d measured 400cc (almost half a liter) of blood loss, in addition to all the bleeding before I arrived and all the drapes and chux and towels, they called an ambulance. By then I was a mess, blood in my eyes, my hair, all over my clothes. The EMTs were very nice and transported me “lights and sirens” to the hospital. 

The ER doctor was very nice too. And my nurse, who got IV fluids going. The ER doctor got the bleeding slowed down but not stopped so called ENT. 

ENT wanted something else tried so the ER doc took out the soft packing that was sort of working and tried the ENT’s recommendation. Which didn’t work. So then it was an effort getting it slowed down again. And then the ENT wanted something else tried. And so forth. 

My nurse would get me all cleaned up, my face washed, a fresh blanket over me, and leave the room. The ER doctor would appear and try something else and make a huge mess. We were collecting 2 and 4 ounces of blood at a time. The doctor would finish and leave the room. Then the nurse would come back in, see me covered in blood again, and get an incredulous look on his face. “Doctor back in again?” he’d ask. Then he’d clean me up again. And call housekeeping.

Housekeeping would skirt around the edge of the room, looking at me the whole time, and empty a full trash.

Then we’d do it all again. 

Finally the ENT came in and did lots of really painful things to my nose. Injections of lidocaine with epinephrine right into the septum of my nose, which made my heart rate shoot up into the 200s. Silver nitrate, which burned and made me sneeze. But the bleeding finally stopped.

I was so grateful to go home and throw away my clothes. I had 4 times a day nose care instructions. 

That was a month ago. I was quite anemic (no surprise) and the next two days I sat in my chair and shivered and ached all over and struggled with migraines. 

But then it happened again. This time I’d learned a few things from the ENT and got it slowed down and convinced my PCP to try her hand at the silver nitrate. It worked.
But then I had to go back to work and my husband went to the farm. I made a visual list for the kids of what to do if I got a nosebleed so they’d be ready to go to the doctor with me. I’m so grateful we never had to use that list.

I only had a few nosebleeds while my husband was gone, thankfully, and I was able to get them stopped on my own. But they got worse and worse over time. They’d wake me from sleep and I’d be up for a couple hours trying to get the bleeding stopped. If I lay down it would start again so I’d have to sleep sitting up in a chair. I had to take a nosebleed kit with me everywhere. I’d have to see patients with a cotton ball soaked in Afrin shoved up my nose.

At my follow up with a different ENT, which happened a couple days after my husband’s total thyroidectomy for thyroid cancer, I was given a last ditch treatment before surgery… A compounded estrogen nasal spray. 

A few days later, I woke up in the middle of the night in a pool of blood. It was caked in my hair and made a huge circle on the bed. I’d been so tired, I’d slept through quite a nosebleed. I spent another hour getting it stopped and slept the last hour or so of the night upright in my chair.

My daughter woke up in the morning and looked for me. Since my husband had already got up, she found our bed empty and thought we’d gone to the hospital in the middle of the night and left her alone. She sat in the bed and cried and cried. I finally heard her and rushed in. She clung to me and sobbed, rubbing her soggy face into my shoulder.

Who knew a nosebleed could take over one’s life? But it has. I can’t go anywhere without a nosebleed kit. I can’t lift, bend down, or exert myself without risking a nosebleed. I’m miserable but I can’t get emotional or cry unless I’m willing to risk a nosebleed. 

Everyone has been asking how my husband is doing. He’s fine. A little tired. A bit of a sore throat from the breathing tube. We’re hoping the final tests in a month are good and indicate no residual tumor. He’s not allowed to lift over ten pounds or bend down because he could bleed into his neck. But he looks and acts and feels pretty normal.

And then we try to explain that I’m *not* fine. But that word… nosebleed… it spoils any explanation of severity. But gradually my friends have figured out that I’m preoccupied with my nose and seem to humor me. One wonderful neighbor has fed us a couple times and helped with the kids. But overall, I’ve felt so scared and hopeless and helpless and alone.

Then day before yesterday I was done. I didn’t care if it made me bleed: I cried. I didn’t let myself sob, but I overflowed with tears. I wrote an email to a few friends asking for prayers that this would stop and I wouldn’t have to have surgery. Surgery for a stupid nosebleed. Surgery is apparently a magic word. One of them called my husband to ask a bunch of questions and apparently he was fairly compelling in his description of what was going on.

The next morning not one, but two pastors showed up at our door together to pray for me. Did I mention that two of my friends are married to pastors? It was 8:15 in the morning and my daughter was in the bathtub and my husband was naked. So I stayed by the front door and was anointed (did you know they have roll on anointing oil these days?) and prayed for.

“So since I have two pastors right here,” I said a little shakily, “I have a big worry.” They both looked at me with pastoral concern. “What if I’m taking one for the team? What if I mess with what’s supposed to happen by asking for this to stop and instead something terrible happens to one of the kids?”

One validated my fears but said that God isn’t that sort of person. The other pointed out that when Jesus healed people, He just healed them… He didn’t make someone else get sick to balance it out. (Later, when I told my husband about it, my husband pointed out there was that herd of pigs…)

Then the first asked if his wife could organize a meal train. I admitted that we haven’t coped well in that arena and would be grateful for some help. 

And now all of a sudden, after years of feeling like we had to soldier on mostly alone, we have people not only praying for us but bringing us meals, helping with the kids, we’ve even had a offer to clean our bathroom for us! I’m guessing this is the community that people are always talking about. It’s a little overwhelming but really nice too. 

The Freedom of Art History


My kids have gotten to an age where they worry that their drawings don’t look “right”. This was worsened by an art class my son took at his homeschool connections program where they were taught a correct way of drawing trees, people, etc. Afterwards my son lamented that he couldn’t remember how to draw trees his own way.

Today my daughter sat down to draw a baby but realized she didn’t “know how.”

So I pulled up an image search for “cubism” and another for “fauvism”. We looked at paintings and I asked what they saw. They saw a lot. An angry man yelling. An excited dog. Women laughing and talking together.

“Do these paintings show us exactly what people and animals look like?” I asked. They shook their heads. “Then how do you know what it is?”

They both thought a moment.

“Because they show us what the people and animals feel like,” marveled my son.

A Post I’m Going to Finish

I have about a dozen posts that I started and never finished. I’ll start to write about something important to me but then something important drags me away. That’s the theme of my life right now. Like all moms, I’m pulled in multiple different directions… With the difference that I’m starting with a half empty energy tank.

I’m feeling just well enough now that I want to improve our quality of life. We were completely dependent on our tax return to pay for basics like car registration and any extras like music lessons. My income provided a home and bills plus $350 a month for anything else we wanted. Like food. And gas. And shoes.

So working more and earning more income looked really good.

But now that I’m doing it, I’m questioning the advisability. I’m exhausted. Dizziness is my constant companion. Headaches. An achy tired arm. Tripping. I’ve had a few good falls and I’m always bruised.

Thankfully I made this decision just in time…There were holes in our roof and we found out that we don’t qualify for a loan to pay our deductible because of my crazy student loans… oh well, I thought, we can come up with the equivalent of our entire monthly income over the course of the next six weeks… but then we lucked out and there were problems and we had a little more time. Lucky us.

And then my husband was diagnosed with thyroid cancer. It’s the “good” kind with 96% survival. What we keep hearing is how great it is that he has this kind of cancer. And I totally get that it’s way better than having another type of cancer. But can we just all agree for a minute that not getting cancer at all is a better option?

This happened right when we were going off Medicaid. Of course. So I went with a good plan instead of the cheapest plan. But we’re still looking at thousands in medical bills this summer. Plus the premiums on the good plan.

I’ve mentioned before that when I get too overtired I start getting really scary dark thoughts. So that is my biggest fear during his treatments this summer. How to avoid extreme exhaustion.

Friends and family are helping some… But I’ve learned that sporadic help is more tiring than no help. I have to explain and prepare things ahead and then deal with the repercussions afterwards. So I’m hiring a teenager to nanny for us for a couple weeks to allow some consistency and so that I only have to explain a few times. I’m glad I can afford to do this. Now that we’re getting closer to 200% of the FPL, we’ve some fat in our budget after all.

But why oh why do these things keep coming down on me? Everything is just one more thing now.

But then I think about the family summer pass to the local swim park that I bought even though I didn’t know if we’d have money for the deductible. Because that is the glory of being “low income” rather than impoverished. I now have enough money to make decisions that other people would look down on as irresponsible but I know are fabulous decisions. Seeing the joy on my kids’ faces is worth every penny.


This isn’t the tone I usually have in my posts. I think I may sound just a little sick of it all. And well, I am. Just because I keep making lemonade from these lemons doesn’t mean I am enjoying the lemonade anymore.

Best Brother Ever

Today I took my kids for their flu vaccine. There was a sign saying they were out of flu mist so I explained they would have to have the shot instead of the nose spray (they knew going in that it could be either). They both bravely stepped up and my son was prepared to go first and show his little sister that it was okay. Then the nurse said, “Would they like flu mist? I have three left and I’ve been saving them for kids.”

Much rejoicing!

So the kids got flu mist (I had my flu shot last week). We left and then realized we forgot our book we were reading. So I stuck my head back in the room to ask for it and out in the hall I heard my daughter: “I tirsty [thirsty].”

“Here,” my son said. “Get a drink of water.”

I turned around after thanking the nurse for handing me the book, and this is what I saw:


Best brother ever!

Married With ADHD Reality


I was recently given “that look” by someone who doesn’t understand what it’s like to live with someone who has significant ADHD and executive functioning problems. That look that says that I must be some sort of crazy control freak. That look that says that my husband must be a saint to put up with me. It’s not that I regularly complain… That is reserved for my blog! I said something lighthearted about how hard it is to have my entire life constantly disrupted by it.

But it’s so subtle that it’s hard for other people to understand what it’s like. People who struggle with ADHD and executive function do the same things the rest of us do occasionally… forget an appointment, set something down, leave something lying around, keep something because they don’t know what to do with it… but they do it consistently, with everything.

And then this morning I was doing my usual routine of tidying up as I came across things out of place and realized that a picture is worth a thousand words. Every cupboard, every surface, everything in my entire house is plagued with the same problem as the shelf at the top of this post. In the last two days this shelf has accumulated a battery, a potato peeler, nose spray, a hair clip, two empty jars (one with the lid beside it), and an empty can.

Here’s what it looks like after a quick tidy:


It only took me a few minutes to run everything to the place where it belongs. But imagine if every shelf, the counter, the stove, the bathroom sink, the back of the toilet, the table, the chairs, the sofa, the mantel, the floor, every single surface in your entire house accumulated the random flotsam and jetsom of life at the same rate. And that doesn’t even count the chaos of the yard, the garage, the inside of the car.

Think of every item you touch in a given day. Toothbrush, toothpaste, junk mail, keys, shoes, socks, empty containers that once held food, the receipt the cashier handed you, the lint from the dryer, your dirty dishes, your used Kleenex. Plus all the stuff you consciously use. Now imagine that the part of your brain that told you what to do with that item got knocked out. So you have literally hundreds of items pass through your hands on any given day and there’s really no telling where you might put them. Your toothbrush might mysteriously end up on the mantel, your used Kleenex in the dirty dishes, the dryer lint on the floor, your keys in the refrigerator. These are all real-life examples from our own house.

As the neurotypical member of the family (other than my strokes), I see this happening all day long. My brain registers all these things as out of place. I can pick up each item, picture where it goes and take it there. I can even group similar items quickly so I grabbed up a couple handfuls of things to take to the bathroom all at once rather than just take the nose spray.

I watch my highly intelligent husband get completely overwhelmed by the same task and sometimes apparently not even see half the stuff that doesn’t belong. I have been accused of enabling him. Or being a perfectionist because if you don’t see this in action, it sounds like I want a “company ready” house all the time rather than a “lived in” look. Let me tell you, company ready at our house still plenty of that “lived in” informality.

Some people continue to think of executive function disorders as convenient excuses for laziness and that the person should just try harder. I have my days when I feel this way too! But the reality is that someone who struggles with their brain working right can have just as much trouble functioning on a day to day basis as a wheelchair bound paraplegic would have trouble in a career as a roofer. But it’s subtle… Just as subtle as the nose spray and the empty can on the cupboard shelf.

When the Endless Time Ends


Today I took the kids to the Nature and Science Museum. My sister gave us a membership so we go fairly often and just stay a short time. Our goal is always to be there right when they open at nine so we can enjoy the hands on Discovery Zone before it’s mobbed. Being the first in is fun. The volunteers are usually still setting up. Today a facilities guy stopped by and admired the gears table and explained how my son had designed a brake that worked just like a clutch.

As the families flooded in around 10, we left the area to have a snack. The kids begged to go back in for just a few minutes despite the two dozen families already crowded in there. As we hit the wall of mommies and toddlers, I realized that a period of my life that I thought would never end has quietly ended.

About half of the women in there were visibly pregnant. My son (6) was definitely the oldest kid there, probably by a couple years. As a spunky second child, my daughter (3) happily managed on her own or with a little help from her brother so I mostly sat off to the side and resisted the urge to doze. No other parent was enjoying that sort of rest. I’d say the average age of the children was about eighteen to twenty four months so these were kids who could get into everything but lacked the foresight to behave logically or the attention span to stick with one activity. The parents were kept in constant motion.

Given the age, most likely none of the children in the room could buckle their own seatbelts and the majority were not potty trained. Several of the non-pregnant women were wearing their infants while chasing their toddlers and two were trying to nurse amid the chaos.

When I was in that phase I thought it would never end. For six continuous years I was either nursing or pregnant (or both). We had two in diapers for over a year. Every trip out required several minutes of strapping and unstrapping car seats. Or a baby carrier or bike trailer or stroller.

I’m not someone who looks back on that time reverently. I was not a happy pregnant person. The hormones made me crazy and my medical knowledge of everything that could go wrong made me anxious. The newborn period was just a blur of body fluids to me. I was bleeding and crying and leaking milk and lochia and the baby was urping and peeing and pooping on everything and all in all it was just a very soggy time involving a lot of laundry. I loved my babies, but a bundle of joy? More a bundle of needs.

But now, this period of parenting, this is a time I’ll likely look back on with a certain amount of warmth and sentimentality. Parenting is no longer a matter of keeping alive a creature who seems designed to make it as difficult as possible to do so. How strange to suddenly realize that the endless nights, the years of always having someone feeding off my body in some way, the never ending potty training, it’s all behind me. I will never again feel a baby kick me from the inside… Or suffer the unrelenting sciatica and sacroilliac pain of pregnancy. I will never again cuddle an infant to my breast to feed. That endless time has ended.

I love my children dearly and they were totally worth the early years of mothering. But the strongest feeling I have right now when I think about that period of our lives is guilt that I don’t miss it, that I don’t exclaim over how badly I want another. Maybe someday I will regret that there won’t be anymore babies. But for now, I’m happy that pregnancy isn’t contagious and I safely walked out of the Discovery Zone and enjoyed the native birds dioramas with my potty trained children who speak English and can be reasoned with if necessary.

And who understand the concept of posing in front of a green screen in order to go home with a photo of us with a dragon.


Gaps in Recovery

My experience with my elderly patients is that I never really know their true functional level until something bad happens to their spouse. Over time a couple seems to compensate for each other in so many ways. My mental picture of this is one elderly couple of mine who I cared for during some major life transitions. They literally leaned on each other as they walked. Neither one was very stable, both were extremely stubborn, and neither would use a walker. But together they could manage. One day one of them tripped in the parking lot outside my office and they both went down.

There are so many little things that have to happen every day. We need to eat, have dishes to eat off of, clothes to wear. Bills must be paid. Social obligations attended to. And even if the amount of work isn’t split evenly, going from sharing duties to 100% responsible is an opportunity to both appreciate my husband and realize in what ways I’m still struggling.

No surprise to anyone, but fatigue is my Waterloo. I can cook supper, drive my daughter to ballet, and even figure out how to fold clothes (all things I’ve mostly left to my husband). But the fatigue comes down on me like a cider press. Unrelenting, constant, overwhelming, crushing.

It’s nothing like immediately after my strokes when I’d quickly reach the point that I couldn’t write or lift my leg. Those days are gone. But by 5 o’clock when I needed to return office messages for the day and my work computer had restarted, I was about done. All I had to do was go to my office three blocks away and hit the escape key and then I could log in from home again.

The thought of walking out to the car and driving those three blocks made me want to sit down and cry with exhaustion. Thankfully, both kids are old enough to walk out, get in the car, and strap themselves in. In fact, my son unlocked my office so I didn’t even have to fiddle with the key.

But I’m realizing how much I depend on my husband for what we used to call scutwork when I was in training. I sometimes get frustrated at what isn’t happening. But I couldn’t manage on my own for any length of time. I suspect my sweet husband couldn’t either. But between the two of us…neither one of us is very stable and we’re both extremely stubborn, but together we can manage.

Proud Parenting Moment

We started my son in “kindernastics” at the beginning of this calendar year when we stopped occupational therapy. He likes being upside down and has a lot of energy so it seemed like a good fit. The teacher pulled my husband aside after the first session and asked if my son had taken a gymnastics class before (he hadn’t, unless you count the toddler mommy-and-me classes with circle time and songs).

She wanted him to move up into boys gymnastics right away but technically he had to wait until he was six. So he finished out the session of kindernastics  and we registered him for beginning boys gymnastics in the spring. Then today my son fetched me at the end of gymnastics, “Mom, the coach says he needs to talk to you; he wants me to move up.”

I love and enjoy my kids no matter what, no matter whether they excel or not. And no one in my family is an athlete so there were definitely no expectations for him to perform in that realm. Nevertheless, I got this crazy feeling, almost a high off of my son’s success. We’re only a couple weeks into the fall session and my son is moving up into intermediate boys gymnastics.

He’s worked hard for this, which is what we’ve always stressed to him over any natural talent. Aptitude means nothing without putting in the effort. After my own experiences being able to slide through school without much effort while still being valedictorian, I’ve been determined that my kids won’t be as lazy. I don’t want them to come unhinged when something is difficult. I want them to know they are capable of putting in the effort even when it’s hard. (Side note: obviously, I figured out that I’m capable of making the effort, but it was a horrible thing to find out when I almost flunked anatomy my first year of med school.)

The boys gymnastics coach and his assistant are great. They have both been doing this forever (I’d guess the coach is in his fifties and the assistant is in his forties) and they understand boys… Especially the high energy boys who get signed up for gymnastics by parents desperate for a way to wear them out. I also love that they match what they are doing to the boy. They give one on one attention to each student but they are gentle with the boys who are obviously just there because their parents signed them up and definitely get more demanding and stern and step up the expectations for someone who is showing interest and aptitude.

We’d been noticing my son getting some extra attention the last couple weeks. They were picky about his form, giving him extra recommendations for practice during the week, and even having him demonstrate how to do a  handstand correctly last Saturday.

I can’t help thinking of the Pygmalion Effect, a term used by researchers who have found time and again that if a teacher thinks that a student will excel, they treat that student differently and that student does excel. I definitely think my son has a natural gift for being in constant motion and he’s put in a lot of practice at home, but I also see the effect of his coaches’ extra attentions.

I could have never convinced him that doing push ups is a good way of spending his free time. And a generic recommendation to the whole group probably wouldn’t have worked either. But today when his coach got down on the floor in the hall and showed him how to do “a gymnast’s push up” and told my son to do them this week to build strength, my son tried it immediately there in the hall and then pulled out his mat to practice it as soon as he got home.

I also see how important a supportive family is. We definitely are not pushing my son to succeed. But we are helping him to succeed. We are still on an extremely tight budget but we either find the money for gymnastics or put it on the credit card (same with that gymnastics mat we store along the living room wall). We don’t know much about gymnastics, but we watch YouTube videos explaining whatever he’s working on and then parrot them occasionally while he practices. “See how slowly you can go up into that handstand.” “Good job being controlled with that cartwheel.” “Your bottom is sticking out, pull it in.”

And I think about other boys I know who will never have this sort of opportunity. Whose parents never sign them up. Or aren’t available to take them because they are working two jobs or have mental health problems or transportation issues. Or who punish handstands done anywhere but in the gym. Or make fun of their children’s enthusiasm. Or put so much pressure on their kids that it isn’t fun anymore.

And then I think about all the realms in which this happens. It’s not just gymnastics. It could be school. Or a hobby. Or another sport.

Being a parent is complicated! There is a middle ground between over-involved and under-involved. Between pushing too hard and not challenging them enough. When my kids have kids, they’ll realize how hard it is to find that balance.

But for the moment, I’m going to bask in that feeling, the wash of pride that I felt when I heard, “Mom, the coach says he needs to talk to you.”

They are All the Same Under Their Skins

My grandma came over from Germany after The War (World War II). Her husband, my grandpa, was enlisted in the army and my grandma has told me many stories about her life as an army wife. There are two that always spring to mind when I’m fixing potatoes for my family.

One day I was sitting on a tall stool at my grandma’s counter while she peeled potatoes and she told me these two stories together:

When I first married your grandpa and moved to America, other wives made fun of me because of my accent. I thought that was silly because all of them only spoke one language and I spoke two, but you can’t control what other people say about you. So I became friends with a black woman. They wouldn’t have anything to do with her at all but I thought she was really nice. All they could see was that her skin looked different. But on the inside she was nicer than most of them.

One of your grandpa’s friends was an officer. His wife was a real grand lady, always turning up her nose like she smelled something bad. One day they were going to come over for dinner and she called me ahead of time to make sure I was making white potatoes and not red potatoes for supper. Red potatoes were lots cheaper then so I’d buy the red potatoes and peel them. ‘Mrs. B-, my husband will not eat red potatoes; you are serving white ones, aren’t you?’ she asked. 

‘Yes,’ I told her. ‘Of course I would only use white potatoes, what other potatoes are there?’

I figure once they’re peeled no one can tell the difference; they’re all the same under their skins.

My grandma is no saint when it comes to race. She holds stereotypes of immigrants who work at the commissary and complains bitterly about doctors with accents who are difficult to understand. At the same time, she was so much ahead of her time. And her telling those two stories together always stuck with me. I think the world would be a better place if everyone remembered that under our skins, we’re all just human.