Archive for the ‘The Health’ Category
I have hundreds of pictures of Williams smiling. People comment all the time about how happy he is and how fun he is and they are right. Will is truly an exceptionally happy baby. Except when he is in pain.
When we figured out that the cause of his nursing strike and associated screaming was reflux, we got some short term relief with medication. And after a few weeks of sad Will, we got our happy baby back. And then the dose wasn’t enough and he started to struggle. We upped the dose and he came back. And we’ve been doing that- a few days of happy Will, then sad Will, Zantac dose adjustment, repeat. We’re on our 4th? 5th? dosage now and he’s still struggling. And it’s heartbreaking.
The current rise of reflux is being made way worse by teething. His saliva is more acidic while teething so his reflux is more painful and ugh. It’s just awful. He arches and writhes and screams this high pitch scream that makes it very clear that he is not okay.
Last night I made the horrible error of trying to do a “dream feed” (where you quietly wake the baby up just enough to feed them and then put them back down) and instead I fed Will for about a minute before he refused to nurse and SCREAMED his face off for a half an hour. We ended up sleeping, poorly, on the couch all night.
This morning, I was trying to get ready for a birthday party for one of my husband’s past and future coworkers and Will would scream, to the point of gagging, if I was not holding him. It was awful. He’s so obviously uncomfortable, wanting to nurse, but then stopping after just a minute or two and then crying.
He has his happy moments and I cherish them, but a large part of the time he is really sad. I cannot imagine what it must feel like to be so small and have so much pain that you can’t control. To have eating, the ultimate comfort, be the source of discomfort.
And on a selfish level, it’s exhausting. I love this baby so, so, so much. Truly. He is the sweetest baby and I cannot for even an instant imagine my life without him. I can’t underscore that point enough, because I’m about to complain. I really need some rest. He went from getting up once a night to getting up 3 or more times a night on the nights he doesn’t end up sleeping on me on the couch. He loves his dad, but at night or when he’s really hurting, I am the only one that will do. I haven’t slept more than 3 hours in a row all month and I’m just exhausted. My biggest concern is Will’s comfort, but my secondary concern is for my own sanity.
Will has an appointment with the pediatrician on Tuesday and we will be discussing this at length. Zantac is clearly not cutting it. We either need a different medication or a referral to a GI who can give us better direction. We’re also checking Will’s weight. If he has dropped below the 25th percentile, they will be doing a series of tests to make sure nothing else is going on. Because he was over the 75th percentile at 2 months and is dropping past two major percentiles (50 and 25th), their office policy requires them to do bloodwork. It’s probably a good thing even if I suspect it’s just the reflux that’s slowing him down.
Basically, things are not great here. And it’s both sad and exhausting. I’m hoping very sincerely that after our appointment on Tuesday we’ll be on the right track to helping our baby be happy again.
I’m very much a live and let live person.
You want to breastfeed your kid? Awesome.
You want to formula feed? Super.
You want to unschool? Knock yourself out.
Boarding school? Hooray for you.
Parenting is tough. You have to wade through volumes of information from a wide variety of sources, balance what’s right for you and your child against what’s right for others and then inevitably something changes and you have to do it all over again. And by and large, I have nothing but the utmost respect for your parenting decisions. With one important exception.
Currently, Eli is sick. He came home from preschool with a 103 degree fever (he was fever free this morning). There are a lot of things I should be worrying about. His comfort, whether to take him to the pediatrician, when I can give him more ibuprofen. But I should not, in the year 2015, be worrying about whether or not he may have measles.
And yet, here we are.
I’m not here to preach about how perfect vaccines are, there are other people who can do that better than I can (they’re called scientists, physicians, etc), I’m here to talk about how mad this situation makes me.
In 2000, measles was eradicated in the United States. We killed it. Clearly it wasn’t with superb sanitation, because I’m pretty sure that didn’t get worse in 15 years, but it WAS because of medical advances, namely, a hugely effective vaccine. And it was because of herd immunity. The vaccine is 95% effective at preventing measles in a single dose, 99% effective after the second. 99%. That’s just incredible. Science, man. And enough people were vaccinated that even when people came from overseas with measles, there just weren’t any hosts to infect. We were protected.
And then a former doctor lied, in an attempt to secure a patent for a new MMR vaccine, falsified data and convinced parents to stop vaccinating. A few celebrities jumped on the bandwagon. And vaccination levels began to decline (notably, Autism hasn’t, so…) and hey, guess what? Measles is back. It’s back because we let vaccination levels dip so low that the 1-5% that don’t develop immunity from the vaccine are getting sick because there aren’t enough other people to protect them, as are children, like my own infant, who are too young to be vaccinated and those who cannot vaccinate.
It was gone. 15 years ago it was gone and now it is at my front door, almost literally.
I live less than 30 minutes from Disneyland, a mere few miles from Orange County where the most cases are focused. Someone with measles went to a mall we go to, went to a movie theater we attend. One of the parents of a kid in Will’s daycare is quarantined because he’s an employee at Disneyland and was exposed. This virus, which can hang in the air for hours, is in my neighborhood, threatening my toddler, and truly, genuinely threatening my infant. Measles isn’t like a cold, I don’t need to rub my snot on you for you to catch it. It’s highly contagious even without actual direct contact. If my infant is in the room with someone with active measles, there is an extremely high chance he will get it.
My infant. My tiny boy who is too young to be vaccinated and relies on everyone else.
And I am mad. I am mad that in the year 2015 when we can land a robot on Mars and can circle the globe in airplanes and have cars that run entirely on electricity, we can’t keep my child safe from measles. I’m upset that people have taken the words of liars and discredited quacks as the gospel truth and that it is putting my child at risk. I’m upset that some people are so selfish that they cannot be bothered to care about those too young to be vaccinated and the immunocompromised who cannot receive vaccines.
Because that’s the thing- those of you not vaccinating may believe you’re doing it for the right reasons. But in order to do so you have to make peace with some really serious issues. You may have blog posts from other parents, you may even have a few physicians (ones who, I will add, are making a metric ton of money off of telling you not to vaccinate, by the way), but you don’t have science on your side. You may think that this is what’s best for your child, but you also have to acknowledge that it puts other people in danger. Your child might survive the measles, but will my 5 month old? Will my sister’s father in law who had a bone marrow transplant? Will my 6 year old patient who is recovering from chemo and radiation?
Maybe this post will cost me readers. That would be a bummer, it really would be, but I’d rather piss you off than support a decision that directly puts my family in danger. I wouldn’t support you walking around with a vial of smallpox in your backpack and I can’t pretend to support not vaccinating without a legitimate medical reason. I feel strongly that your parenting decisions are yours to make, but when you choose to do things that put my children at risk, I get an opinion. I am mad. I am mad that you are threatening my child’s welfare. I’m mad that I can’t even go to a grocery store with my child without fearing for his health and safety.
I’m mad that it’s 2015, my child is sick and all I can think about is whether he got measles and how on earth I can keep my 5 month old safe. This shouldn’t be happening and it is because we have chosen selfish pseudoscience over real evidence and have completely forgotten to consider the welfare of others. It’s sad and it’s scary. And I’m pissed off.
Thanksgiving was last week and for the umpteenth year in a row I had planned to write something here but I didn’t. This year it was because I was busy in the best way- enjoying my life.
Seven years ago (it was 7 years on Thanksgiving Day), I had brain and spinal surgery.
My husband and I were talking about it on thursday and I think I didn’t realize what a big deal the surgery was at the time. I was so miserable with headaches, dizziness, nausea and weakness that the idea of something going wrong just didn’t have room in my mind. It had to work, had to make my life better because I had big plans. And thankfully, the surgery was a success.
The weeks, months and years after the surgery weren’t what I expected. The headaches came back, there were more MRIs than I can count, there were lumbar punctures and long discussions that all ended in puzzled and frustrated neurologists and neurosurgeons. We knew the problem, low intracranial pressure, but there was no cause and no treatment. While my family looks back upon my surgery as one of the scariest days, I look back on the years where my head hurt constantly and where no one could help me and those were far, far scarier than facing a scalpel.
The headaches improved dramatically when I got pregnant with Eli (increased blood volume and intra-abdominal pressure = increased intracranial pressure) and again with William, but when I’m not pregnant, the headaches are still an issue that I grapple with. The difference is that they don’t stop my life anymore. I’m not dizzy, I’m not nauseous (most of the time). I can work and care for my kids.
On the list of things I’m thankful for, my health is very near the top, if not the first item on the list. I am incredibly fortunate to be healthy, to be able to function just like everyone else in spite of my medical history. This surgery didn’t give me the immediate relief I’d hoped for, but it gave me back my life and gave me a future. It allowed me to have two beautiful boys and to be able to chase after them, lift them and play with them without pain. It allowed me to go to school and start a career that I deeply love.
This post may be a few days late, but I wanted to take the time to say that I am so very thankful for the life I have, for my incredible family who has stood by me through everything and for my future, which looks blindingly, beautifully bright.
Happy belated Thanksgiving, friends.
I have been treating a little boy in my clinic for well over a year now, in fact, I saw him just today. I’m not going to tell you his name, age or diagnosis, not just for legal reasons, but also, because for the purpose of the story, it doesn’t matter. But I will tell you that I adore him. If I was allowed to have favorite patients, he would be high on my list and he has captured my heart in a special way.
A few months ago, I ordered a special piece of medical equipment for him. It took months to get it created and adjusted properly. We had to go through his pediatrician, the company that makes it, repeated appointments to fix things that weren’t right and on and on. And finally, about a month ago, he got it. This is not his first piece of equipment, but it was the first that he might actually use and it is important for his wellbeing and function.
We worked hard to get him comfortable using it and made a BIG fuss over how cool it was and things were going really, really well. Last week, he and his mom went to Target to do some shopping. As they were walking through the store, a young boy sitting in the shopping cart noticed the piece of equipment and like any kid, was curious about it. And so he asked his mother why my patient had that.
And her reply was “well honey, he’s different.”
That one word, that one 3 syllable, 9 letter word, undid months of work. It crushed a little boy’s self esteem and it set him back weeks in terms of his function.
The question in and of itself is completely appropriate. That boy in the cart had every right and reason to ask his mother, and there are a million great ways to answer that question (“why don’t you ask him?” “It helps him do x, y, or z” “It makes him jump really high!” etc, etc, etc). But instead, she chose not to explain it at all, but instead to label.
Her response was possibly the worst thing that she could’ve chosen to reply with. It instantaneously created an otherness, one that we had all been desperately trying to avoid, and set it right in my patient’s lap. It was an otherness he had not yet come to fully recognize, but is now hyperaware of. That one stupid word literally changed his life.
The problem with labeling someone as different, especially with the tone that is so often used, is that it separates people into typical and atypical. It makes the group that are somehow atypical feel like they don’t belong or can’t fit in. And in the case of my patient, all he wants in the world is to belong. To have a group of friends, to play in a typical fashion, to be anything but different.
And he isn’t different. He’s a little boy. He loves Disney movies and pirates and cars and everything that kids his age love. He skips the number 17 when he counts. He is obsessed with superheroes and will do just about anything if you can make it into a game about Spiderman. He is not “different.” He may move in a way that the rest of us don’t or require help with things that other kids can do alone, but he isn’t different. He’s bright and fun and loving and everything that you want a child to be. His sameness is so much greater than his difference, but for some reason, no one can seem to get past the things that don’t fit.
I wish I could’ve met the mother in Target that day. Not because I want to scream or yell (though I do, a little), but because it could’ve been an incredible opportunity to open someone’s eyes to how powerful their words are. I wish I could’ve shown her how important a question that was and how important her answer was. I wish I could’ve educated her on all the ways my patient is not different, or on all the ways that using different in that tone is a terrible thing to do. I wish I could’ve helped her to understand how different can be good, how different can sometimes even be better.
We must do a better job of explaining and introducing disabilities and differently abled people to our children. By making these differences a negative we do a great disservice to these children and adults who have incredible talents, amazing personalities and bright futures that we completely miss because of our preconceived expectations about them. We need to teach our children to look beyond the things that give them pause, to push through their unintentional prejudices and realize that underneath what we may see as differences are often layers of sameness.
On Saturday morning, I heard Eli wake up, so I dragged myself out of bed, turned off the monitor and walked into his room. He stood up and immediately his face fell. His lower lip quivered and I knew something was wrong. I asked him if he was okay and he sadly said no. I asked him if he wanted to go drink some milk and he said no again. This, combined with the several times I heard him whining in his sleep were a pretty good sign that something was up.
As soon as I picked up his hot little body, I had a sinking feeling about what we were facing. When I changed his diaper later and saw little blisters on his bottom, I was even more sure.
His fever didn’t respond to anything on Saturday, but disappeared overnight, and in its wake was the most miserable version I have ever seen of my child. For hours on Sunday he writhed in pain, laying on my lap, drooling, refusing food, water and just generally being the most pathetic person on the planet. I’m not normally one to rush to the pediatrician for a fever/virus, but seeing how much pain he was in was enough for me to call the doctor for an appointment, especially since we had no idea what hurt.
So we went to the pediatrician, where my gut feeling was confirmed: hand, foot and mouth disease. Which may as well be called hell on earth disease because dear God, it is truly the worst. In Eli’s case, there is not a single spot on his hands or his feet, but instead he has a rash covering his entire bottom, the backs of his thighs and the backs of his calves, which does not seem to bother him at all and isn’t particularly ugly, just unusual. And of course, blisters all over his face and on his soft palate and tonsils.
The pediatrician told us that this was really painful. Like, really painful. And that what we could do was aggressively medicate him. She told us to alternate Motrin and Tylenol with codeine ever 3 hours and to offer whatever food/drink he would eat, regardless of the nutritional value or lack there of. She even told us to let him watch Finding Nemo all day long since that’s the only thing he wanted to do.
And so we did. Sunday night was the absolute worst. Eli went down at 7:30 and woke up at 9 hysterically crying despite being well medicated. He finally went back to bed at 11:30 and then was up at 3, 4:45 and slept on me until 6:45. I have scarcely ever felt so helpless in my life. I literally fed him unlimited ice cream at 10pm, just because it was the only thing that stopped his crying. I would do it again in a heartbeat.
Thankfully, things have already started looking up. He’s interested in playing again. He’s eating pretty voraciously (though with lots of wincing). He’s definitely still a little whinier than usual and his face is still pretty yucky, but overall, I could not be more grateful for how quickly this has turned around.
The only thing left in the air is his birthday party, which is on Saturday. The pediatrician we saw told us that he would not be contagious once his fever broke, but the CDC very strongly disagrees with that, and I’m pretty conservative with this kind of thing. It seems that once all the blisters scab over we’re mostly in the clear, you know, so long as people stay out of his diaper, which seems a safe bet at his birthday party. We’re not holding our breath and we’ll cancel if we have to, but hopefully it won’t come to that.
And hopefully, we never have to deal with this virus again. Or if we do, hopefully I can drink heavily during that time.
Things have been a little quiet around here this month and that’s entirely because November kicked our collective asses. The first week of November wasn’t so bad, but Eli came down with a stomach virus and puked through the 8th and the 9th. I then caught his stomach virus and was puking the 10th and feeling like I was going to die all through the 11th and to a lesser degree for about a week afterwards. This was really my first glimpse of how resilient kids are, because he was so fine that I didn’t even realize he was sick, just thought he was randomly puking for 2 days.
I haven’t thrown up in 20 years and have a serious fear of vomiting and you know what? It actually wasn’t as bad as I thought it would be. I mean, it was awful in the way that everyone knows vomiting is awful, but it wasn’t the life altering event I expected. And I survived to write too much about it, so there’s that, too. My husband was spared the virus, though he got to witness more vomiting than any one person should.
A week after the stomach virus we had our first brush with croup. It wasn’t as awful as I know it is for many others, but the barky cough was jarring and scary. And a few days into that, Eli had a sudden deluge of boogers and a dramatic increase in misery. Within a few day, so did my husband and I (both boogers and misery).
This last Tuesday, we went out to dinner at around 6:30, which is a pretty normal dinner time for us, at a restaurant about a mile from home. After a few minutes of coloring, Eli started screaming, which we assumed was because we took away the phone he had been playing with at therapy a few minutes earlier, so my husband took him outside to try to calm him down. They came back in a few minutes later and the screaming started back up again. They immediately went back outside, he calmed and came back in. The third time it happened, we told them to get our food to go and I took him out. No matter what I did, he wouldn’t calm down, he just laid his head on my shoulder and cried and cried. It was so sad because that’s just so not him. Eli is a busy, happy guy and to see him so miserable was just awful. And so we went home and in the 5 minute drive at 7pm, Eli fell asleep. He slept through a diaper and clothing change and though he whined in his sleep a lot, he slept until 5:30 the next morning.
I probably should’ve realized something was up at that point, but I didn’t. Until 6:30am on Wednesday, when once again he began crying and didn’t stop for 90 minutes, which was when the Motrin I forced into him kicked in. All day he slept and cried on and off. He spiked a high fever in the afternoon and was a limp noodle who only wanted to be held and snuggled and did the saddest cry when he couldn’t. I cannot describe how heartbreaking it was. We were able to get in to see our pediatrician that afternoon and he discovered a “raging ear infection” (his words) in Eli’s left ear.
Our pediatrician is a very low key guy, rarely concerned about anything and he was seriously concerned about this ear infection. He told us that he wished he had a medical student because this was the clearest ear infection he’d ever seen. He also warned us that there was a really good change that his ear drum would rupture within the next 24 hours and that if he didn’t use the right antibiotic, the infection would spread to his sinuses or the bone behind his ear (mastoid) by Saturday. He gave us strict instructions on what to look for, put him on a very high powered antibiotic and gave directions and the dosage to break the no decongestants before age 2 rule.
We are very, very lucky that after 2 doses of antibiotics, Eli was a new kid. He is still a bit whinier and sleepier than usual and has a diaper rash from hell, but you’d never know how sick he was on Wednesday. I am hoping to someday forget how sick he was on Wednesday.
My husband and I are still in the post viral cough phase and for funsies, last night, on the very last night of this blasted month, I spiked a completely random 102 degree fever with chills and aches that broke, coincidentally right around midnight on December 1st, which makes me feel very confident that this was all some November phenomenon of awful.
I have a big post about what I am thankful for tossing around in my head, but I just need a few hours to recover from November and prepare for a big trip we have this week. Mostly, I’m just really, really glad that this month is over. Last winter was a long one, but I’m holding out hope that we’ve seen the worst already and that the rest of it will be much, much happier and healthier.
Prior to getting pregnant and having Eli, I was kind of a crappy eater. I mean, I was a healthy weight and my BMI was in the “normal” range, but you’d probably have cringed at my diet for a few reasons. First, I could live on carbs alone, and be completely happy about it. But also, I am a big fan of preservatives. I even wrote a post several years ago where I bashed organic foods as a scam.
I always internally rolled my eyes at the “crunchy” moms who only fed their kids organic, hormone-free stuff. It just seemed so over the top and unnecessary. And even though I found/find the “well, we survived when I was growing up doing x, y, or z that is now unsafe” argument infuriating when it comes to just about every other part of parenting, I gave the same excuse for food. I was healthy on a diet of preservatives, why did I need to freak out about feeding my son the same stuff?
When I got pregnant, I felt a small shift in my thinking. I still ate Easy Mac by the heaping bowl full, I still overate carbohydrates, but I began to linger longer at the organic section in our grocery store. I scrubbed fruits and veggies before eating instead of casually rinsing. I started to choose meat from the organic market and read labels slightly more carefully.
After Eli was born, we were in survival mode for a while, eating whatever was in the house or delivered to us, regardless of its health benefits, but when we started him on solid foods at 5 months, I began to feel uncomfortable with our eating. The first thing we did to try to combat our discomfort with the situation is joint a CSA and get a basket of fruits and veggies every other week. Eli’s first several foods came from those baskets and it made me feel a little better to be able to give him non-genetically modified, non-pesticided foods, locally grown food.
As he started to be more interested in real table foods, it got more challenging. We’re very fortunate in that we live walking distance from an organic market, but the distance isn’t the issue now- it’s the cost. Last week I bought a few lunch items for Eli, as well as ingredients for 2 dinners (that would feed us for 4 nights) and it cost over 80 dollars. And look, my child’s health is important, but that is unsustainable.
We also decided to quit the CSA basket this week, not because we don’t like it, but because we’re not making good use of everything and having to throw away too much produce. I found a small local produce stand that will likely be more reasonably priced than the market that I’m going to try out, but either way, it’s been frustrating to balance my desire to feed my child healthy, whole foods and not spend my entire paycheck on it.
And it makes me feel more frustrated because we’re fortunate, we can afford to spend extra for organic, but that’s not the case for everyone. I hate that other families may want to feed their child the same way I want to feed Elijah, but are unable to do it because the cost is prohibitive. I’m frustrated that we’ve reached a point in society where we’re comfortable with feeding animals antibiotics prophylactically, even when we know it causes antibiotic resistant bacteria to proliferate. I’m frustrated that we’re comfortable spraying pesticides on foods, even when we know that some of these chemicals in large quantities can be very dangerous.
I’m frustrated that it’s so complicated to feed my child safe, healthy foods.
I have no solution, not even really any good ideas, just worries and frustrations. I want to be able to feed my child well without breaking the bank. And I just can’t understand why that’s an unrealistic desire. I can’t understand how we hope to manage all the health crises facing our country if we can’t even find a way to make healthy food affordable. I’m frustrated and I think I’m not alone.
Five years ago today, I had brain surgery.
It’s funny how even after 5 years that doesn’t sound any less crazy. I have done a pretty good job of hiding those memories away, the anxiety, the recovery, all of the unpleasant parts, in the very back of my mind. I rarely access them because it wasn’t a particularly pleasant time. I’m a completely different person than I was 5 years ago and so I look back upon that day almost as though it happened to someone else instead of me. Yes, I have the same scar as that girl, but I am a completely different person.
Most of the emails I get from other people with Chiari Malformation always ask me the same questions. First, they ask if I had the surgery (yes). Then, they ask who my surgeon was (he’s retired, sorry). Then they ask how I am today and if the surgery was worth it.
I don’t have an easy answer for those last questions.
I am better today than I was 18 months ago, I am worse than I was 4.5 years ago. I would argue I’m better than I was pre-surgery in most ways. I can laugh and cough and sneeze without feeling like my head will literally explode from the pressure. My balance is pretty average these days and my left hand has pretty good dexterity and strength, though if you measure it, it’s definitely not quite up to par. I don’t have nystagmus anymore and I have days without headaches. But I do still have them. And a few other holdovers here and there.
Was the surgery worth it? Maybe. There are just so many unknowns. Would my Chiari have continued to progress if I hadn’t had the surgery? Maybe. Would I have been able to tolerate pregnancy and deliver Elijah without a c-section? Maybe. Would I be where I am today? Maybe. I can’t say for certain if it was worth it, because I don’t know what the alternative outcome really looks like.
I can say that there were some benefits to the surgery. It helped confirm the career path I was on and have now completed. It has allowed me to connect with and have more compassion for my patients. It has improved my quality of life in some physical ways and has connected me to other people like me, which has further improved my quality of life in a more abstract way.
Yes, I still have headaches. Often severe ones. I am not without symptoms as I had hoped, but they do not inhibit my life like they used to. I’m working, I’m caring for my son. No one I work with knows about my medical history because they don’t need to- because it doesn’t have an impact in the way it once did. If it weren’t for the scar, most of the time it would be as though it never happened.
But it did. And if I was faced with the situation over again, ultimately, I think I would make the same decision, but I wouldn’t make it lightly this time either. Though I realize that not everyone would I agree, I like myself and my life more now than I did then. Much has changed in 5 years, and for that, I am grateful.
For the last month I have been keeping a secret from you. It has pretty much almost killed me and I have almost told you about twice a day since then, but I didn’t. I actually kept a secret. And a pretty big one too.
You see, a month ago, this happened.
In case you don’t know me well enough, you should understand that I have probably never been as shocked or excited about anything in my whole life. You guys. A baby. A BABY.
I went to my obgyn for the first time yesterday, had a wildly invasive exam and then I got to see this.
That? Is my baby.
Wow. That sentence may never not be weird to say.
At the ultrasound yesterday I was measuring at 8 weeks, which is a few days earlier than the period math led us to believe, but I’m okay with more time passing because this has been the longest month of my life. My due date is tentatively May 12, 2012, which in case you wondered is the day after I’m supposed to graduate from Graduate School. We are SUPER good at planning.
I realize that it is still early in this pregnancy and there is a fair possibility that something could go wrong, but I got to stare at that tiny little blob with it’s tiny flickering heart beat (160 bpm for you detail people) and I just about died of happiness on the spot.
I had planned to wait a little while longer to tell you, but I was offered the opportunity to join the Babble Being Pregnant team and I thought that might be a good way to share what’s going on with this whole baby thing without making this blog all about babies. I mean, this blog is still going to be all about babies, but it’s probably good to have a secondary location to share my crazy.
So there. That’s my secret. It still doesn’t feel real, but I’m not gonna lie, it feels pretty freaking exciting.
(p.s. For those of you who happen to be Facebook friends with me on my real last name account, I would really super appreciate if you could not post anything on my wall about this yet because we are not telling the whole world for a while. You guys get to hear early because you’re special, don’t abuse my generosity or I’ll unleash my hormones on you.)
I got the MRI/MRV results last night.
I didn’t tell anyone except my husband and a friend. Not because it wasn’t good news, but because it was. They were clean. Nothing showed up.
Nothing showed up.
Please don’t misunderstand me, I wasn’t hoping for a blood clot, I wasn’t hoping for a tumor or something requiring urgent brain surgery. But I was hoping for something. Hoping for anything. Because the thing about a clean MRI is that it’s not always a good thing. A clean MRI does nothing for me. It doesn’t mean that I don’t have unrelenting headaches. It doesn’t mean that I’m suddenly sleeping more than 3 hours at a time. It doesn’t change anything. If anything, it is the opposite of change.
A clean MRI means that we have no plan. It means that we are absolutely no closer to finding a way to slow down these headaches. It means that we are back at square one.
For the record, I hate square one and the fucking horse she keeps riding into my life on.
I didn’t sleep much last night because I kept having dreams about my headaches. Over and over I’d dream about sitting in doctor’s offices and being told that there was nothing to be done. I woke up short of breath, in a cold panic. I realize that this dream may not sound like much of a nightmare, but it is for me. It’s my nightmare, my future.
All day I’ve wandered around in a fog. My doctor told me to call and schedule a follow up appointment, and I put in the call, but have no expectation of being called back anytime soon. (The only way I got the results was to email my doctor and she said that she hadn’t gotten any messages. Yes, that does make me want to scream.) But I also just keep thinking, why even bother?
We know that there aren’t any medication classes that we haven’t tried. We know that we’ve done all the tests. There isn’t really anything left to do. These headaches aren’t going to kill me. They don’t seem to be doing any real damage to my brain (if you let go of that whole brainstem slumping business). There’s just really nothing to be done.
For the last two years I’ve had a headache for every moment of every day. I haven’t had a day off, I haven’t had a night off. There is literally not a moment where there isn’t pain. I know that some of the people in my life think I’m exaggerating. They think that the pain cannot be that bad because I still go to school, because I bake, because I go on vacations. Because I refuse to give up on the life I chose.
I have learned to live with pain. It was not something I ever wanted or hoped to do. It was a necessity. It was the only way I didn’t have to give up on everything I’ve worked for. The pain is very real and if anything, it’s generally a whole lot worse than I make it out to be.
I don’t know what the next step is. I don’t know that there even is one. Right now things feel tired and hopeless. And in a way, I think that’s easier. This cycle of hoping and hurting sometimes feels more exhausting than the pain. Two years of disappointment only intensifies the ugliness of the two years of pain.
I just keep thinking that maybe it’s time we stop trying altogether. Maybe it’s time to stop thinking that this is just a phase. Maybe it’s time to realize that it isn’t something that’s going to suddenly stop.
That this is just my life.