Archive for the ‘The Health’ Category
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.
I know I didn’t formally update (I hid it in the comments), but my MRI/MRV got moved from when it was scheduled on Wednesday to today. According to the guy who called me, it had to be moved because there wasn’t a radiologist on site to administer the contrast on Wednesday. So they moved it to today and it worked out alright because I was already going to be in the general vicinity. Frankly, as long as it was done before my insurance year started over again on Monday, I was okay with the change.
So I arrived and waited in the waiting room until it was my turn, then disrobed and gowned up to make sure I didn’t die from the zipper on my shorts.
When I got into the MRI room they went ahead and put an IV in for the contrast, which isn’t unheard of, but normally they just pull me out and inject the contrast in the middle of the scan without actually doing the whole IV thing. And then they hooked up the IV to this huge machine with two big fluid containers, and I my curiosity got the best of me.
Me: “What’s that?
Radiologist: “The Auto Injector 2000.”
Me: “Oh. Okay. How is that different from what you guys normally use?”
Radiologist: “From the Auto Injector 1000?”
Me: “Um, no. From a needle in my arm and you pushing the plunger.”
Radiologist: “Oh. Well, this is an MRV so we’re going to give you a lot more contrast quickly with a bolus of fluid and it needs to be timed with the scans.”
Me: “Oh. That sounds unpleasant.”
So that’s what happened. They sucked me into the tube and about 20 minutes in I got a warning that the first contrast injection was about to go in. It wasn’t too bad, definitely not worse than usual. A little cool going in my arm and I got the nasty gadolinium taste, but totally tolerable. When that scan ended, they did nothing for a while. Which was disconcerting.
After a 5ish minute break, they did a few more short scans, then they informed me they’d be injecting more contrast. And let me just say, holy crap. This was like a metric fuckton of contrast. I wanted to rip the IV out because it hurt A LOT going in. It wasn’t just cold, it was cold and stinging and really freaking unpleasant. And besides that, I not only got the nasty taste in my mouth, but also the all over flushing, feeling like I peed my pants and my tongue tingled for a solid minute. It took everything in my power not to scream to be pulled out because I was convinced I was going to die of something gadolinium related, but I didn’t. I knew that they needed those scans right then to time it with the contrast, so I managed.
Now I need to back up for a minute and clarify something- the reason they decided to do the MRV in addition to a standard MRI was in large part to make sure that I hadn’t developed any clots in the veins in my brain which can happen when you have low pressure for an extended period of time. Clearly clots are not something to be messed around with and until I got ready for the scan, I really wasn’t all that worried.
So in light of that, you can imagine my absolute freak out when the radiologist came to let me out of the tube and goes, “So, uh, have they started you on anticoagulants?”
I was told my doctor would get the results in 2 days, so I’ll start calling Monday, but in the meantime I totally plan to spend my time freaking the hell out about potential clots in my brain. Because I was totally out of things to worry about. Whew, that was close. I almost got a mental break on my summer vacation.
It’s been more than 4 weeks since I saw my new neurologist and in that time I’ve been taking the (stupid) Vitamin A and waiting for a call to schedule the MRI/MRV that my neurologist ordered. Those are the only two things on our treatment plan and I have been totally unable to make progress on one of them. I really like my doctor, but this whole process has reminded me of how much I dislike her office.
When I left my appointment that day, they told me I’d get a call within a week to schedule the MRI/MRV. They were just going to get my insurance authorization. So I waited a week. And nothing. I gave them a few extra days and then I started calling.
Each day I called and listened to the whole stupid choose your options menu, I was bounced around to about 8 different desks where I left messages with my name, date of birth, patient ID number, phone number and the entire story of how I just want to schedule this damn test. In all, I left more than 10 messages, and it wasn’t until Friday that someone finally called me back to tell me I could just call and schedule it, my insurance was good to go.
So I called, and the earliest they could get me in on Monday, August 15th, in the evening, and not even in the main radiology center, but at a satellite center. Whatever, I took it. I had to. It was all set and I was willing to wait.
Then I got a phone call today. Let me just tell you that when your doctor’s office calls and says they have “bad news” they are not exaggerating.
So, funny story. My insurance year ends on August 14th. So on August 15th it’s like a blank slate. I have no authorization to see any medical professionals besides my primary care physician (COUGH*the student health center*COUGH) and in order to get the MRI/MRV I would need to first go to my PCP and get a referral to see my neurologist. Then I’d have to wait to get in to see her. Then I’d have to have her write new orders for the MRI/MRV. Then I’d have to wait for them to get insurance approval and wait to get it scheduled. And sometime next year, I’d get an effing scan.
Oh, and as icing on this crap cake, my deductible would reset so it would cost me in the neighborhood of 2000 bucks to get it all done. Which, we totally have laying around.
I cannot even begin to tell you how very angry I was. So I called the radiology center and I groveled. I explained that it needed to be done soon because it was ordered a month ago, because I was about to start a new job that I couldn’t get time off of (job, clinical, same difference) and oh, I also didn’t have all kinds of extra money laying around.
He put me on hold for half a lifetime, then came back and said he had a few options. But only if I was willing to drive to Manhattan Beach, which frankly, at that point he’d have said I needed to drive to Arizona (which is not that much farther away from me than Manhattan Beach), I’d have said yes and kissed his feet in gratitude.
So I am getting these scans done tomorrow, finally, in Manhattan Beach, in the early evening. My day will be spent in my car, fighting traffic, but fighting traffic is better than scheduling 2 unnecessary doctor’s appointments and spending money that we don’t have any day.
I’m not sure what to hope for with these scans, so I’m just going to hope that in some way, they points us in the right direction. Whatever direction that might be.
I had an appointment for physical therapy yesterday and my PT asked me how I was, and to my dismay, the answer was better. I cannot tell you how many times I’ve come to see her in the past few months and the answer has been some derivation of “ugh” or “not great” and what I really mean is “freaking awful.”
She started poking around at my neck like usual, assessing how my muscles and joints were moving and she stopped with a gasp. For the first time in months, my neck is actually moving the way it’s supposed to be. Apparently having a few days off of really ugly headaches is a pretty great cure for chronic neck issues. Who knew? We always assumed the neck pain was tied to the headaches but it’s been so long since I’ve had more than a day without a really bad one that we’ve not had a chance to test the theory.
It was nice to see something improving for a change.
I started the Vitamin A last week, just around the same time my head finally settled down a little. I started at a low dose and have been slowly upping it every day. As the dosage has gone up and the headaches have gone down, I’ve been letting myself jump to conclusions about the headaches, about the Vitamin A. I know that this Vitamin A was a shot in the dark, but it seemed like it might actually be working.
Spoiler alert: it’s not.
Last night I upped the dosage again, and am now feeling the real wrath of the side effects of the vitamins. But even more fun, I have a substantial headache. I actually opted to drop the dosage a little tonight to give myself a break from some of the side effects, especially considering how much my head hurts today anyways. I’m a little bummed out, but I’m not really surprised.
I know it’s too early to draw conclusions, but given that I was on 5 times the normal daily dose of A and have been for several days and still got this headache, I think we can safely assume that the Vitamin A is not a miracle cure. Not that we ever expected it to be, but still. It would be nice to have a miracle cure.
Or even a miracle break. A few more precious days in a row, where life can be a little closer to normal would be more than enough. I’m not stopping the Vitamin A altogether, I said I would give it a fair shot and I intend to, but I’m done putting a lot of hope in it, because I know better.
I’m hopeful that the rest of my time in San Diego is more gentle and if it isn’t, then I hope my tolerance to the headache improves. I want to make the most of this experience and going to bed early and missing out on fun isn’t really part of my plan. All I can do now is hope that tomorrow is better.
As I was attempting to mentally pack for my trip, I realized that the transportation of pills to BlogHer this year was going to be different than in years past, primarily because I now have a whole lot more of them. The great irony is that though I’m taking more pills each day, all the pills I am taking daily are non-prescriptions. They are all vitamins and supplements, but ones that my doctor has prescribed and that I’ve gotten through my pharmacy.
In trying to figure out how to pack the pills I realized that it was time. Time for a thing I have long avoided. The pill sorter.
Hi, I’m my grandma.
After I filled all the cells for the days I’d be gone, and to be honest, I had to put some AM pills into the PM box because THEY DIDN’T ALL FIT, I realized that that wasn’t even all the pills I needed to bring with me. The pills in the box are only my daily meds, and there are a whole lot of other “as needed” ones that need to be brought along too.
I try really hard not to let health stuff get me down more than it has to, though some days that easier than other. And it’s worth mentioning that the past few days have actually been good ones. The headaches have been totally bearable, for which I am extremely grateful. But when I take a look at all those pills, of how big a role medicine plays in my life, I just feel old. I feel worn.
I feel like I’m falling apart at 28 years old.
I look at my friends on Facebook and I see pictures from their hikes, their marathons, their pictures of their kid(s), I see these lives and I feel like I’m both behind them and ahead of them. Like in some ways I haven’t reached that point in my life and in other ways, I’ve already passed it up.
I know clamoring for normal isn’t a healthy thing to do, I know that it won’t get me anywhere. But that doesn’t stop me from wishing for it anyway.
Today has been a hard day. After yesterday my mind, my moods have been in a constant state of change.
As most of you observed, I am hopeful. I hate that I am because hope has led me no where good yet, but damn, I am. I don’t know that the next scan (an MRV with gadolinium for those interested) will actually show anything, but at least I feel like we’ve got a real, somewhat reasonable plan, for the first time in MONTHS. And I feel like if the scan doesn’t show anything, I can go back to this doctor and she won’t try to toss another band-aid onto these headaches, she’s going to try to find a way to stop them altogether. I don’t know if she’ll ever be successful, but it feels like we’re finally trying to treat the cause instead of the effects. I like that.
On the other hand, I’m scared.
I really, seriously do not want another brain surgery. I especially don’t want it because it will unquestionably derail my schooling. I can barely tell you how hard I have worked to not have to fall back a year in school. I’m not trying to paint myself a hero here, and probably I should’ve given in and gone on a 4 year track instead of staying on 3. But I didn’t. I’ve lost hours studying long after I normally would. Weekends lost to trying to relearn things that I didn’t get to learn in class, that didn’t make sense because I had missed the previous week due to pain or tests.
I caught up. I passed all my classes. I am on track to graduate in May. And the idea that this scan could show what the others hadn’t, and that it could show that this can and should be repaired now? Kind of sucks. In a warped crazy kind of way.
I don’t want surgery. I don’t want to start my next clinical and my fall classes late. I don’t want to be behind ever again.
But on the other hand (I have a lot of hands, okay?), there’s no way I can turn down a fix. If this scan shows a leak, I will have it fixed, almost unquestionably. The quality of my life depends upon it. It would be crazy for me not to. And given that my brainstem is slumping out of my head, there’s no question that physiologically, it would be crazy not to also. I try not to get too dramatic when I can avoid it (shut up, sometimes I try), but your brainstem is essential for your ability to live. I’m not willing to mess around with mine.
And so I wait, somewhat patiently, for insurance to authorize the scan, for the pharmacy to fill the pills. I craft scenarios in my head of what if the scan shows something. Of what if it doesn’t. I find worries where I don’t need them, I push others away. I make plans tentatively right now, knowing that the future is still very much uncertain.
That everything ahead is now unwritten. That it all remains to be seen.