I should clarify. I didn't think I was having a heart attack. I thought that my MS meds ate through my aorta and my heart was about to explode. Or something. Anyway. Chest pains.
I know that logically, you should not wait 2 weeks to visit a doctor if you are having chest pains. I also know that my neurologist's office is a fucking pain in the ass to get on the phone. And Dr. Google always has good ideas about what is ailing me.
In any case, if you are wondering what you should do if you believe you are having a heart attack (or a mutilated aorta), I'm going to give you a step-by-step guide based on my experience (I feel the need to apologize in advance to anyone who finds this post through Dr. Google and is looking for actual advice. GO TO THE FUCKING HOSPITAL. THIS IS NOT WHAT YOU ARE LOOKING FOR):
1. Ignore. I mean, you have been working out a lot trying to reach your goal of losing 8lbs by your birthday which is only 2 weeks away. Your muscles are probably just sore from all that activity (I mean, it is kinda weird that the only sore muscle you seem to have is in your upper left chest, but whatever).
2. Skip the gym for a couple of days. This is the gold standard for heart attack diagnosis. If your chest still hurts after skipping the gym, you are obviously dying.
3. Decide you are obviously dying. God, not before the end of the work day though, you lazy bitch. This can clearly wait until after 5:00pm.
4. Send a nonchalant text to your estranged husband on the train ride home. Does he think you should go to the ER for "this chest pain thing"?
5. Make babysitting arrangements. Obviously you aren't dragging a toddler to the ER.
6. Stop at Wendy's on the way to your aforementioned babysitting arrangements. Do you realize how long you will be in the ER? It's dinner time, you are starving and you won't be home until midnight. Also? Do you even understand how shitty that "heart healthy" diet is that they will obviously put you on after your shredded aorta is diagnosed? Priorities, people. This is the most important step. You must stop at Wendy's (McDonalds or Burger King are fine too, as long as you are soaking up as much fat and sodium as possible before your big trip to the ER- you are going to need your energy!).
7. Chat with your brother-in-law for several minutes about his plans for the evening. Your kid LOVES spending time with her cousin and uncle!
8. Finally head over to the ER. Don't be discouraged when the woman behind the reception desk spends 2 full minutes ignoring you while she hole-punches name badges. Chest pain is like an express ticket to PROCEDUREVILLE and you will be on your way any minute!
9. Skip triage. Go directly to the place the paramedics bring their ambulance patients! You are rolling in style now (literally. They won't let you walk, so you have to make the 50 foot journey by wheelchair)!
10. Take off your shirt for that EKG. God, your tits are looking old! It's okay though. The other 3 people in the room don't seem to notice.
11. Your EKG is normal. Time to start waiting! It's been a busy day in the ER, so your gurney is rolled next to the food trays and refrigerator, directly across from the guy who picks his nose continuously, the entire time he is in your sight lines.
12. "Take deep breaths" for at least 5 different people so they can listen to your lungs. Tell the exact same story 5 separate times- did you think people WROTE THINGS DOWN in the ER? You silly girl!
13. It's been 2 hours and your chest is still hurting? Well you are in luck- PERCOCET!
14. Try not to doze off while listening to the woman next to you chatter on the phone about how she has no signal and she had to borrow the hospital's land line and she can only make local calls and the battery is almost dead on this phone, but somehow she has enough power left to make 3 more 20 minute calls after that, where she tells everyone she has ever known (with the exception of her sister and fiance, as she noted to one lucky caller, because she had not been in touch with them yet- WHO THE FUCK WERE YOUR FIRST 4 CALLS TO, YOU DUMB WHORE?) about how she can't BELIEVE her gynocologist missed her internally bleeding ovary-because- ISN'T THAT HER SPECIALTY??? Also wonder why she keeps pointing out that "several friends already offered to come, but I told them not to bother because I'm going to be SUCH bad company!". You know what, lady? Agreed. You are fucking terrible company. Also? I hope no one else in this fucking ER actually needed to call someone besides their top 5 besties- you know, like their husbands or mothers or sisters- because you've been hogging the only land line in this cell reception dead zone for at least 2 hours. Also, you are a cunt, which is probably why your ovary is exploding.
15. Since percocet has done literally nothing for you, and your heart and blood tests have all been normal, your doctor informs you that he suspects acid reflux and will be bringing you something for your stomach to see if that helps. "Is it pills or something nasty I have to drink?", you may decide to ask. At this point he will lie to you and tell you "It's a drink, but it actually tastes really good. I had to drink it once".
16. After another hour of waiting, they finally bring you your "GI Cocktail". The nurse informs you that it contains "Maalox, Lidocaine and... blah blah blah other stomach stuff". This is another lie. Based on color, consistency, volume and taste, I suspect the actual contents are as follows: Horse semen, shampoo, grape flavored Triaminic.
17. Spend 15 minutes trying to choke down your "cocktail". Gag repeatedly. Feel surprised that even after the numbing effects of the horse semen kick in, the taste and texture are still so blatantly revolting that you can barely manage to drink it at all. After making it through 90% or so, declare "fuck this" and refuse to drink anymore.
18. Wait around and find that your chest pain is starting to subside. Feel dumb that you spent the entire night in the ER for what amounts to heartburn and a really big fart.
19. Take your first full dose of MS medication (if you do not have MS, I suggest something equally likely to cause "flu-like symptoms". Maybe go around licking some of the other patients). You don't know this yet, especially since you've mostly handled it really well, but the 5 hours you'll have left to sleep by the time you get home will be considerably disturbed when you wake up shaking with chills from your high fever, and aching from head-to-toe.
20. Get discharged without so much as a prescription for Nexium or a suggestion to take some extra-strength Maalox. "Follow up with your regular doctor" or some shit.
Your heart attack is now complete. Enjoy being tired as fuck at work tomorrow (because really, you can't call out and say "well, I thought I was having a heart attack but apparently I just had a really spicy burrito, so I'm just going to stay home today").
Showing posts with label Doogie says I have MS. Show all posts
Showing posts with label Doogie says I have MS. Show all posts
Thursday, June 7, 2012
Monday, April 2, 2012
I Stared at My Computer for 5 Minutes Trying to Come Up With a Clever Title. I Failed.
I've been avoiding making this post. I don't know how to make it funny or enjoyable to read. And I don't want you to know how much I'm struggling. I'm angry and bitter and the reflex reaction of everyone I've told is to pity me, which only makes it even more clear that I'm fuckity fuck fuck fucked. Which kind of makes me want to punch things. I think you all know where this is going:
I got the results of my spinal tap, which have confirmed MS (as much as you can confirm MS without a recurrent episode). Doctor says I have all the markers for it, plus blah blah blah medical stuff. And so I have to start on treatment.
On the upside, apparently my insurance is going to cover all but a $50 per month co-pay on my medication, and I qualify for the pharmaceutical company's co-pay program so they are actually even going to cover the $50 a month for me. That is pretty much the only upside though, the fact that this incredibly expensive medication isn't going to bankrupt me.
When I had my first symptoms, back at the end of December/early January, it took me almost 2 months to feel completely back to normal. And during that time when I felt tired and fuzzy and off, it was easier to say "yeah, there is definitely something wrong here", but once I snapped back to being me again, I guess I went into denial. My spinal MRI came back clean. My hearing and vision tests were normal. And so I started to think about how stressed I was in December, running around every day after work and then every weekend, trying to get ready for Christmas. I had myself pretty convinced that it was all a big coincidence. The brain lesions could have been from anything, especially considering my klutzy nature and my tendency to fall and smack my head on shit. And the lesions? They weren't even inflamed! They were tiny, inconsequential things that showed no exacerbation and no improvement. And the weakness and exhaustion were surely side effects of the steroids.
Truth be told, when I went in to get that spinal tap, I fully expected it to come back showing nothing of consequence. My doctor had already made it clear that that doesn't actually rule out MS, but in my own mind, it was going to. Because I'm too strong to have something like this.
Except that clearly, I am not. Because I do have it.
There's the immediate stuff I need to deal with. The fact that I finally feel like myself again, not sick or tired like I did for the first 2 months of this year, is making it really hard for me to deal with starting this medication. It's an injectable, which sucks right off the bat. But I've done that before. I took Lovenox when I was pregnant with Caitlyn. I don't look forward to the injections, but I can handle them. It's dealing with the side effects that's getting to me. It's the fact that the "flu-like symptoms" "USUALLY go away in 2-3 months". Usually. It's a little ironic to me. To finally feel like myself again, to be able to stay me as long as possible, to try to stop the progression of this disease, I have to inject myself with this medicine that is going to make me feel sick for the next several months. It's a cycle that will seemingly go on forever, as is the nature of this disease. Exacerbation and remission. So starting the meds, to me, is like a trial run for being sick all the time. I get a few months of being myself- the person, the wife, the friend, the mother that I see myself as, then I have to give that up and slip into being this person I don't even know: sick, tired, fuzzy, unable to focus on my daughter and my relationships and the things that matter most to me. A person in survival mode. Survival mode is not how I want to live half of my life.
Then there's the longer term stuff. I've waffled a bit on having another baby, even before I knew I would spend my life being sick. It's been a tough decision. As a person who grew up with 3 siblings, the idea of Caitlyn being an only child feels wrong to me, like I'm depriving her of something in not giving her a brother or sister. On the one hand, with this new information, I feel more inclined to have another baby. I don't know how long I'll have before this disease becomes unmanagable. Hopefully decades, but that certainly isn't guaranteed. So I think of Caitlyn being a little older, a teenager maybe, trying to cope with going through her own changes and maturation and having her childhood taken from her by having to help take care of her disease-stricken mother. And I wonder if having a sibling, someone who truly understands what she's going through, someone in the same boat, someone to talk to when she needs to say how much she hates taking care of me and she wishes she had a normal mom like all her friends, might ease that burden a little bit. Because burdening Caitlyn feels like the biggest failure I could have as a parent. I can't relieve her of the burden completely, she loves me and I know she will be there for me even if I tell her she doesn't need to be, but maybe having a sibling to help carry it will make it easier for her, to give her a break, a sense that she doesn't always have to be there.
On the other side of that coin, having another baby feels so selfish. Because relieving some of Caitlyn's burden, a burden I certainly didn't choose for her because I didn't know about this disease before she was born, means choosing to actively inflict it on another child. And how can I make a choice like that?
If I do decide to have another child, it's a decision that needs to happen soon. The longer I wait, the more likely it is that I'll have progression of my symptoms. If I'm going to do this, I can't afford to wait. Which wouldn't be so bad, if I just had to have Rodolfo roll on top of me for a few minutes a couple of weeks after I had my period. But it doesn't happen like that for us. So in addition to everything else that makes this decision so hard, all the pros and cons that already exist, now we have to figure out if we can afford to spend $8000 or so on IVF (we can't, in case you are wondering. Which really means we have to decide if we want to go back into debt to have another baby.)
And then, if I decide to wait, or not have a baby at all, there's the issue of birth control. The medication I'll be on causes miscarriages, so I would absolutely need to stop taking it before deciding to get pregnant. And that isn't such a problem, really. The problem is the fact that, because of our fertility issues, we don't use any birth control, ever (or at least not in the last 5 or 6 years). Not even the trusty old pull-out. Because our chances of me getting pregnant are so slim that it would be a miracle if it happened. A miracle we would have happily welcomed. A miracle I've always secretly hoped for. Yet another thing MS will take from me. Because I can't hope for that anymore. I can't hope to get miraculously pregnant, because my medications could kill my baby. And so I have to go on some sort of birth control, JUST IN CASE.
In fact, with all these tests and shit, I've found the issue of birth control comes up a lot. When I had contrast MRIs, I was grilled about the possibility of being pregnant. Same for when I had the spinal tap. As it turns out, medical professionals don't really appreciate the answer "probably not because my husband has shitty sperm, but I guess it's technically possible". They do not appreciate that answer at all. It's really frustrating because I always wanted to keep that little bit of hope alive that maybe it would happen on it's own, and now I can't even have that.
I don't know. I'm pissed off and bitter and scared, and I don't know what to do with any of it. My current plan is to get very, very drunk when I go on vacation in 2 weeks.
I got the results of my spinal tap, which have confirmed MS (as much as you can confirm MS without a recurrent episode). Doctor says I have all the markers for it, plus blah blah blah medical stuff. And so I have to start on treatment.
On the upside, apparently my insurance is going to cover all but a $50 per month co-pay on my medication, and I qualify for the pharmaceutical company's co-pay program so they are actually even going to cover the $50 a month for me. That is pretty much the only upside though, the fact that this incredibly expensive medication isn't going to bankrupt me.
When I had my first symptoms, back at the end of December/early January, it took me almost 2 months to feel completely back to normal. And during that time when I felt tired and fuzzy and off, it was easier to say "yeah, there is definitely something wrong here", but once I snapped back to being me again, I guess I went into denial. My spinal MRI came back clean. My hearing and vision tests were normal. And so I started to think about how stressed I was in December, running around every day after work and then every weekend, trying to get ready for Christmas. I had myself pretty convinced that it was all a big coincidence. The brain lesions could have been from anything, especially considering my klutzy nature and my tendency to fall and smack my head on shit. And the lesions? They weren't even inflamed! They were tiny, inconsequential things that showed no exacerbation and no improvement. And the weakness and exhaustion were surely side effects of the steroids.
Truth be told, when I went in to get that spinal tap, I fully expected it to come back showing nothing of consequence. My doctor had already made it clear that that doesn't actually rule out MS, but in my own mind, it was going to. Because I'm too strong to have something like this.
Except that clearly, I am not. Because I do have it.
There's the immediate stuff I need to deal with. The fact that I finally feel like myself again, not sick or tired like I did for the first 2 months of this year, is making it really hard for me to deal with starting this medication. It's an injectable, which sucks right off the bat. But I've done that before. I took Lovenox when I was pregnant with Caitlyn. I don't look forward to the injections, but I can handle them. It's dealing with the side effects that's getting to me. It's the fact that the "flu-like symptoms" "USUALLY go away in 2-3 months". Usually. It's a little ironic to me. To finally feel like myself again, to be able to stay me as long as possible, to try to stop the progression of this disease, I have to inject myself with this medicine that is going to make me feel sick for the next several months. It's a cycle that will seemingly go on forever, as is the nature of this disease. Exacerbation and remission. So starting the meds, to me, is like a trial run for being sick all the time. I get a few months of being myself- the person, the wife, the friend, the mother that I see myself as, then I have to give that up and slip into being this person I don't even know: sick, tired, fuzzy, unable to focus on my daughter and my relationships and the things that matter most to me. A person in survival mode. Survival mode is not how I want to live half of my life.
Then there's the longer term stuff. I've waffled a bit on having another baby, even before I knew I would spend my life being sick. It's been a tough decision. As a person who grew up with 3 siblings, the idea of Caitlyn being an only child feels wrong to me, like I'm depriving her of something in not giving her a brother or sister. On the one hand, with this new information, I feel more inclined to have another baby. I don't know how long I'll have before this disease becomes unmanagable. Hopefully decades, but that certainly isn't guaranteed. So I think of Caitlyn being a little older, a teenager maybe, trying to cope with going through her own changes and maturation and having her childhood taken from her by having to help take care of her disease-stricken mother. And I wonder if having a sibling, someone who truly understands what she's going through, someone in the same boat, someone to talk to when she needs to say how much she hates taking care of me and she wishes she had a normal mom like all her friends, might ease that burden a little bit. Because burdening Caitlyn feels like the biggest failure I could have as a parent. I can't relieve her of the burden completely, she loves me and I know she will be there for me even if I tell her she doesn't need to be, but maybe having a sibling to help carry it will make it easier for her, to give her a break, a sense that she doesn't always have to be there.
On the other side of that coin, having another baby feels so selfish. Because relieving some of Caitlyn's burden, a burden I certainly didn't choose for her because I didn't know about this disease before she was born, means choosing to actively inflict it on another child. And how can I make a choice like that?
If I do decide to have another child, it's a decision that needs to happen soon. The longer I wait, the more likely it is that I'll have progression of my symptoms. If I'm going to do this, I can't afford to wait. Which wouldn't be so bad, if I just had to have Rodolfo roll on top of me for a few minutes a couple of weeks after I had my period. But it doesn't happen like that for us. So in addition to everything else that makes this decision so hard, all the pros and cons that already exist, now we have to figure out if we can afford to spend $8000 or so on IVF (we can't, in case you are wondering. Which really means we have to decide if we want to go back into debt to have another baby.)
And then, if I decide to wait, or not have a baby at all, there's the issue of birth control. The medication I'll be on causes miscarriages, so I would absolutely need to stop taking it before deciding to get pregnant. And that isn't such a problem, really. The problem is the fact that, because of our fertility issues, we don't use any birth control, ever (or at least not in the last 5 or 6 years). Not even the trusty old pull-out. Because our chances of me getting pregnant are so slim that it would be a miracle if it happened. A miracle we would have happily welcomed. A miracle I've always secretly hoped for. Yet another thing MS will take from me. Because I can't hope for that anymore. I can't hope to get miraculously pregnant, because my medications could kill my baby. And so I have to go on some sort of birth control, JUST IN CASE.
In fact, with all these tests and shit, I've found the issue of birth control comes up a lot. When I had contrast MRIs, I was grilled about the possibility of being pregnant. Same for when I had the spinal tap. As it turns out, medical professionals don't really appreciate the answer "probably not because my husband has shitty sperm, but I guess it's technically possible". They do not appreciate that answer at all. It's really frustrating because I always wanted to keep that little bit of hope alive that maybe it would happen on it's own, and now I can't even have that.
I don't know. I'm pissed off and bitter and scared, and I don't know what to do with any of it. My current plan is to get very, very drunk when I go on vacation in 2 weeks.
Wednesday, February 22, 2012
Open-Mouthed Relaxation
Today we are going to play a little game. I'm going to tell you what she said and you are going to guess where I was.
"Relax and open your mouth a little"
Was I:
A) at the dentist.
B) on the set of a really bad porn.
C) participating in a hot dog eating contest (on the set of a porn about a "hot dog eating contest"?).
D) getting an EEG.
Let me start by saying that if any of you picked C, please just get out. Stop reading my blog. You don't know me at all. Jaclyn does not eat fucking hot dogs (I probably should take more offense to anyone who thinks I was on the set of a porn, I guess, but I REALLY hate hot dogs).
An EEG, for those of you who don't know, is when they hook up electrodes to your head and measure your brain activity. Specifically, for the test I was getting, my doctor wanted to measure the speed of my visual and auditory responses. So yes, another post about my fucked up brain problems. You're welcome.
To start, the woman performing the test measured my head and wrote all over my scalp and forehead with a red pencil to mark where to put the electrodes. Maybe you guys haven't noticed this about me yet, but I'm sort of chatty. So I tried to make conversation. I asked her if my head was freakishly large as I'd always suspected whenever I try to buy a hat. "Not really". Oh. Ok. Then I told her how we always have trouble getting shirts over Caitlyn's big head and how Rodolfo always tells her to "blame your mother". I think I got maybe a forced chuckle out of that one.
Clearly she did not think I was funny and she did not feel like making conversation. I decided to keep the rest of my thoughts to myself, especially the ones where I considered apologizing for the layer of dandruff she seemed to need to scrape through with that fucking red pencil. Or the fact that I knew they would be putting goop on my head so I didn't bother to shower before the test. It seemed perfectly logical at the time, but when it actually came down to it, I found myself pretty paranoid that I was being secretly judged for my greasy hair.
After the humorless head-scraper had cleared my scalp of any remaining dandruff (and skin), she began the test. For the visual part, I had to cover one eye and stare at a tiny red square at the center of a TV screen for like 10 minutes on each side. Which sounds simple enough. The problem was that all around that red square was a black and white checkboard that was constantly moving and flashing and it made it really hard to focus.
Head-scraper noticed this. Apparently my brain waves indicated pretty clearly that I was not paying enough attention. She walked over to the screen on more than one occasion and tapped her pen in the middle of the screen near the square and reminded me to "focus on the red square. Look right here in the center". Not all disciplinarian-like. She didn't smack her pen once and walk away. No, it was worse than that. She stood there for 20 or 30 seconds at a time, tapping her pen and gently reminding me to focus. I imagine she uses this same technique when she has to do this test on a 5 year old.
After we finished the vision test (and it couldn't end soon enough, I felt like I was fighting off a fucking seizure) we were ready to move on to the auditory test. But she had preparations to make.
She dragged a recliner into the room, put some headphones on me and told me how important it was for me to relax. The test would go much quicker if I was relaxed and, in fact, if I could fall asleep during the test, I should try to.
I tried to relax, really I did. But do you want to know what ISN'T relaxing? Trying to hold in a fart in front of a stranger who has already seemingly decided she kind of hates you. Also, when your husband doesn't understand what "I'm busy" means and keeps fucking texting you every 2 minutes except you don't have your phone right in front of you because you are super busy relaxing so you have to assume it's either him just being annoying or the babysitter trying to get in touch with you because there is an ACTUAL emergency (it was him, for the record). Yeah. Relaxing!
Again, my brain waves gave me away. I was not relaxed enough. And apparently, the default position for "relaxed" is to be slack-jawed. The test lady kept insisting that I open my mouth a little to assist in my relaxation.
You know those commercials for like, the Bahamas and shit? The ones where the actors are trying to convey how relaxing and enjoyable their trip is? They aren't telling you this, obviously, because then they would interrupt the serene-sounding voice-over saying shit like "The Bahaaaaamaaaaaas", all sing-songy. No, they are conveying this message via body language. They are frolicking on beaches. They are lounging on the balcony of their gigantic suite sipping cocktails.
My point is that they are obviously lying. Ok. Lying is a strong word. They are acting, poorly. Because they are smiling on those beaches and balconies. And everyone know that TRULY relaxed people do not smile. Truly relaxed people have their eyes closed and their mouthes open. Maybe they have a little bit of drool on their chin. Drool is the mark of true relaxation. Take note, Bahamas commercials: DROOL WILL SELL MORE VACATIONS THAN YOUR BEAUTIFUL BEACHES AND FANCY HOTELS! Also, I hear the comatose are extremely serene, so it would save you a TON of money in advertising if you just went to your local hospital and got some footage of a dude in a coma and be all "he just got back from the Bahamas". Yeah. I'm kind of a genius.
So my test took a while. Serenity is not my forte.
"Relax and open your mouth a little"
Was I:
A) at the dentist.
B) on the set of a really bad porn.
C) participating in a hot dog eating contest (on the set of a porn about a "hot dog eating contest"?).
D) getting an EEG.
Let me start by saying that if any of you picked C, please just get out. Stop reading my blog. You don't know me at all. Jaclyn does not eat fucking hot dogs (I probably should take more offense to anyone who thinks I was on the set of a porn, I guess, but I REALLY hate hot dogs).
An EEG, for those of you who don't know, is when they hook up electrodes to your head and measure your brain activity. Specifically, for the test I was getting, my doctor wanted to measure the speed of my visual and auditory responses. So yes, another post about my fucked up brain problems. You're welcome.
To start, the woman performing the test measured my head and wrote all over my scalp and forehead with a red pencil to mark where to put the electrodes. Maybe you guys haven't noticed this about me yet, but I'm sort of chatty. So I tried to make conversation. I asked her if my head was freakishly large as I'd always suspected whenever I try to buy a hat. "Not really". Oh. Ok. Then I told her how we always have trouble getting shirts over Caitlyn's big head and how Rodolfo always tells her to "blame your mother". I think I got maybe a forced chuckle out of that one.
Clearly she did not think I was funny and she did not feel like making conversation. I decided to keep the rest of my thoughts to myself, especially the ones where I considered apologizing for the layer of dandruff she seemed to need to scrape through with that fucking red pencil. Or the fact that I knew they would be putting goop on my head so I didn't bother to shower before the test. It seemed perfectly logical at the time, but when it actually came down to it, I found myself pretty paranoid that I was being secretly judged for my greasy hair.
After the humorless head-scraper had cleared my scalp of any remaining dandruff (and skin), she began the test. For the visual part, I had to cover one eye and stare at a tiny red square at the center of a TV screen for like 10 minutes on each side. Which sounds simple enough. The problem was that all around that red square was a black and white checkboard that was constantly moving and flashing and it made it really hard to focus.
Head-scraper noticed this. Apparently my brain waves indicated pretty clearly that I was not paying enough attention. She walked over to the screen on more than one occasion and tapped her pen in the middle of the screen near the square and reminded me to "focus on the red square. Look right here in the center". Not all disciplinarian-like. She didn't smack her pen once and walk away. No, it was worse than that. She stood there for 20 or 30 seconds at a time, tapping her pen and gently reminding me to focus. I imagine she uses this same technique when she has to do this test on a 5 year old.
After we finished the vision test (and it couldn't end soon enough, I felt like I was fighting off a fucking seizure) we were ready to move on to the auditory test. But she had preparations to make.
She dragged a recliner into the room, put some headphones on me and told me how important it was for me to relax. The test would go much quicker if I was relaxed and, in fact, if I could fall asleep during the test, I should try to.
I tried to relax, really I did. But do you want to know what ISN'T relaxing? Trying to hold in a fart in front of a stranger who has already seemingly decided she kind of hates you. Also, when your husband doesn't understand what "I'm busy" means and keeps fucking texting you every 2 minutes except you don't have your phone right in front of you because you are super busy relaxing so you have to assume it's either him just being annoying or the babysitter trying to get in touch with you because there is an ACTUAL emergency (it was him, for the record). Yeah. Relaxing!
Again, my brain waves gave me away. I was not relaxed enough. And apparently, the default position for "relaxed" is to be slack-jawed. The test lady kept insisting that I open my mouth a little to assist in my relaxation.
You know those commercials for like, the Bahamas and shit? The ones where the actors are trying to convey how relaxing and enjoyable their trip is? They aren't telling you this, obviously, because then they would interrupt the serene-sounding voice-over saying shit like "The Bahaaaaamaaaaaas", all sing-songy. No, they are conveying this message via body language. They are frolicking on beaches. They are lounging on the balcony of their gigantic suite sipping cocktails.
My point is that they are obviously lying. Ok. Lying is a strong word. They are acting, poorly. Because they are smiling on those beaches and balconies. And everyone know that TRULY relaxed people do not smile. Truly relaxed people have their eyes closed and their mouthes open. Maybe they have a little bit of drool on their chin. Drool is the mark of true relaxation. Take note, Bahamas commercials: DROOL WILL SELL MORE VACATIONS THAN YOUR BEAUTIFUL BEACHES AND FANCY HOTELS! Also, I hear the comatose are extremely serene, so it would save you a TON of money in advertising if you just went to your local hospital and got some footage of a dude in a coma and be all "he just got back from the Bahamas". Yeah. I'm kind of a genius.
So my test took a while. Serenity is not my forte.
Wednesday, February 8, 2012
Given the Choice, Always Go With the 9 Incher
In the continued effort to figure out exactly what the fuck is going on with my brain, I was told I would need an MRI of my spine.
As I mentioned before, I didn't really enjoy getting an MRI. I'm a bit claustrophobic and it's really hard to not freak out when you are shoved into a plastic coffin for 30 minutes at a time.
Imagine my enjoyment when the imaging center called to confirm my appointment and I casually inquired as to how long I should expect to be there. "Well," Appointment McConfirmington explained, "You will need to be here a half hour before the test begins and we are scanning two sections of your spine, each of which will take 45 minutes, so you should expect to be here for 2 hours".
What?
Two hours? One and a half of which will be spent in the chamber of noise and doom? No thank you, sir. "Oh. That's a really long time. I'm a little claustrophobic", I explained to AMC. I mean, it was just something I said in reaction to the horror that awaited me. I wasn't expecting him to, you know, comfort me or anything. But comfort me he did.
He wanted to make sure I knew it wasn't going to be as bad as I was expecting. He wanted to make me aware of the fact that the machine I would be in is new and larger than what I had previously experienced. He bestowed upon me his wisdom, words that would ring in my head during the entirety of my one and a half hours.
"It will be 9 inches from your face, instead of the usual 4 and a half". Wow. 9 inches instead of 4 and a half. I don't know anyone who would say no to that.
And so I had my 9 inch MRI and all was well. Loud, but well. I only felt like I was going to freak out once, and it passed quickly. In fact, with the way Caitlyn has been driving me nuts the last couple of weeks, it was kind of nice to lay down and not have to get up to pull Caitlyn off of something she knows she shouldn't be climbing for an hour and a half.
I do not have any results or information yet, in case you were wondering, but I will surely update when I do.
As I mentioned before, I didn't really enjoy getting an MRI. I'm a bit claustrophobic and it's really hard to not freak out when you are shoved into a plastic coffin for 30 minutes at a time.
Imagine my enjoyment when the imaging center called to confirm my appointment and I casually inquired as to how long I should expect to be there. "Well," Appointment McConfirmington explained, "You will need to be here a half hour before the test begins and we are scanning two sections of your spine, each of which will take 45 minutes, so you should expect to be here for 2 hours".
What?
Two hours? One and a half of which will be spent in the chamber of noise and doom? No thank you, sir. "Oh. That's a really long time. I'm a little claustrophobic", I explained to AMC. I mean, it was just something I said in reaction to the horror that awaited me. I wasn't expecting him to, you know, comfort me or anything. But comfort me he did.
He wanted to make sure I knew it wasn't going to be as bad as I was expecting. He wanted to make me aware of the fact that the machine I would be in is new and larger than what I had previously experienced. He bestowed upon me his wisdom, words that would ring in my head during the entirety of my one and a half hours.
"It will be 9 inches from your face, instead of the usual 4 and a half". Wow. 9 inches instead of 4 and a half. I don't know anyone who would say no to that.
And so I had my 9 inch MRI and all was well. Loud, but well. I only felt like I was going to freak out once, and it passed quickly. In fact, with the way Caitlyn has been driving me nuts the last couple of weeks, it was kind of nice to lay down and not have to get up to pull Caitlyn off of something she knows she shouldn't be climbing for an hour and a half.
I do not have any results or information yet, in case you were wondering, but I will surely update when I do.
Thursday, January 26, 2012
Peace Out, Girl Scouts. Did I Say Peace Out? I Meant Fuck You
Alright. So it shouldn't be news to any of you that I'm a bit of a fatty. You've seen my pictures. There is no need for lies.
I've been working on it though. I joined a gym and Weight Watchers and it's been slow progress, but I've lost about 25 lbs in the last year and a half or so. I could have done better. I could have lost more. But I've managed to drop a couple of pants sizes, a bra size (around, don't worry, the ladies aren't going anywhere) and a whole lot of fat shame.
I've kept it off, despite many lapses in judgment. It seems as if my body had a set point and I've managed to create a new one that is 20 lbs lower. What that has meant for me is that I don't have to be perfect in my choices. I haven't seen any real loss in a couple of months, but I'd been pretty consistent with going to the gym and my time at Weight Watchers really reprogrammed my brain into making better choices, even when I'm making shitty ones.
And then I went into the hospital. Did you know that you can get dessert with every meal if you are on an unrestricted diet in the hospital? And really, I was sick and feeling bad enough for myself that I absolutely ordered dessert. Every. Single. Time (Ok. With the exception of breakfast. Which was bacon, eggs and home fries every day for me, so it's kind of a moot point, isn't it? Bacon is breakfast's dessert).
Besides the cheesecake I regularly ordered, Nadine brought me daily snacks. The first day it was a bag of chocolate candies. Then hot chocolate from Dunkin Donuts. Then assorted pastries and soy hot chocolate from Starbucks so I wouldn't get diarrhea, then a dozen cupcakes from the fancy cupcake place near the hospital. It was all delicious and appreciated, but man, I fell into some bad habits with all those snacks.
When I got out of the hospital and switched over to oral Prednisone, it came to my attention that everything tasted awful. Everything was bitter and disgusting and tasted like it was covered in dirt. Except cookies. Add to that the fact that I was taking the pills every 4 hours and they gave me ridiculous heartburn if I didn't eat with them, and you can understand why I ate approxiametly 4 bags of Chips Ahoy in less than a week. I may be underestimating with 4 actually, but I have too much fat shame to admit to any more than that. Let's just say I ate a lot of fucking cookies.
The cookies spiraled into anything sweet. I started drinking hot chocolate every day, multiple times a day. I had to! Everything else tasted like shit! But it was getting ridiculous, so I finally sucked it up last week and went back to Weight Watchers to face the damage. To my utter shock, I had only gained 3 lbs. I was fully expecting 10. My body had not forsaken me.
Which brings me to those fucking whorebag Girl Scouts. I'm trying to get back on track. Trying to make better decisions and stop eating anything that crosses my path. And I keep getting reminders that soon I will have to not buy their cookies.
Every year in February and March, I get mauled almost daily in the train station by pushy Girl Scouts trying to whore out their product. And it's a good product. Hard to say no to. It's certainly better than that time the Cub Scouts were camped out trying to sell $18 bags of fucking popcorn (
Really Cub Scouts? Who does your fucking marketing?). But Girl Scouts? I don't need it this year. And what I especially don't need is to be reminded a month in advance that I'd better have cash at the ready or I'll miss out on your annual deliciousness.
You see, I work with people who have Girl Scout aged daughters. And those fuckers keep sending out "BUY MY KID'S GIRL SCOUT COOKIES" emails to everyone in the office. And I find myself resisting the urge to sign myself up for some Thin Mints. Those little bastards are like crack. MINT-FLAVORED CRACK. And, I mean, if I'm going to buy Thin Mints, I might as well get a box of Samoas too. Those are some unique cookies right there. You can't just find something similar in the grocery store. And actually, the Tag-Alongs are pretty good too. What's that? There is a new lemon cookie? I LOVE lemon!
And then I spiral into despair because I'll always be fat because of the Girl Scouts.
I've been working on it though. I joined a gym and Weight Watchers and it's been slow progress, but I've lost about 25 lbs in the last year and a half or so. I could have done better. I could have lost more. But I've managed to drop a couple of pants sizes, a bra size (around, don't worry, the ladies aren't going anywhere) and a whole lot of fat shame.
I've kept it off, despite many lapses in judgment. It seems as if my body had a set point and I've managed to create a new one that is 20 lbs lower. What that has meant for me is that I don't have to be perfect in my choices. I haven't seen any real loss in a couple of months, but I'd been pretty consistent with going to the gym and my time at Weight Watchers really reprogrammed my brain into making better choices, even when I'm making shitty ones.
And then I went into the hospital. Did you know that you can get dessert with every meal if you are on an unrestricted diet in the hospital? And really, I was sick and feeling bad enough for myself that I absolutely ordered dessert. Every. Single. Time (Ok. With the exception of breakfast. Which was bacon, eggs and home fries every day for me, so it's kind of a moot point, isn't it? Bacon is breakfast's dessert).
Besides the cheesecake I regularly ordered, Nadine brought me daily snacks. The first day it was a bag of chocolate candies. Then hot chocolate from Dunkin Donuts. Then assorted pastries and soy hot chocolate from Starbucks so I wouldn't get diarrhea, then a dozen cupcakes from the fancy cupcake place near the hospital. It was all delicious and appreciated, but man, I fell into some bad habits with all those snacks.
When I got out of the hospital and switched over to oral Prednisone, it came to my attention that everything tasted awful. Everything was bitter and disgusting and tasted like it was covered in dirt. Except cookies. Add to that the fact that I was taking the pills every 4 hours and they gave me ridiculous heartburn if I didn't eat with them, and you can understand why I ate approxiametly 4 bags of Chips Ahoy in less than a week. I may be underestimating with 4 actually, but I have too much fat shame to admit to any more than that. Let's just say I ate a lot of fucking cookies.
The cookies spiraled into anything sweet. I started drinking hot chocolate every day, multiple times a day. I had to! Everything else tasted like shit! But it was getting ridiculous, so I finally sucked it up last week and went back to Weight Watchers to face the damage. To my utter shock, I had only gained 3 lbs. I was fully expecting 10. My body had not forsaken me.
Which brings me to those fucking whorebag Girl Scouts. I'm trying to get back on track. Trying to make better decisions and stop eating anything that crosses my path. And I keep getting reminders that soon I will have to not buy their cookies.
Every year in February and March, I get mauled almost daily in the train station by pushy Girl Scouts trying to whore out their product. And it's a good product. Hard to say no to. It's certainly better than that time the Cub Scouts were camped out trying to sell $18 bags of fucking popcorn (
Really Cub Scouts? Who does your fucking marketing?). But Girl Scouts? I don't need it this year. And what I especially don't need is to be reminded a month in advance that I'd better have cash at the ready or I'll miss out on your annual deliciousness.
You see, I work with people who have Girl Scout aged daughters. And those fuckers keep sending out "BUY MY KID'S GIRL SCOUT COOKIES" emails to everyone in the office. And I find myself resisting the urge to sign myself up for some Thin Mints. Those little bastards are like crack. MINT-FLAVORED CRACK. And, I mean, if I'm going to buy Thin Mints, I might as well get a box of Samoas too. Those are some unique cookies right there. You can't just find something similar in the grocery store. And actually, the Tag-Alongs are pretty good too. What's that? There is a new lemon cookie? I LOVE lemon!
And then I spiral into despair because I'll always be fat because of the Girl Scouts.
Tuesday, January 24, 2012
Like That Justin Timberlake Song, But With IQ Points
My supreme sense of self-importance tells me you have all been wondering how I've been feeling:
It was like a rubberband snapping back into place.
I hadn't realized just how stretched I had become until I felt it snap back. I knew I had been off, tired. I joked repeatedly about losing 10 points on my IQ. And then one day I was on my way home from work and I snapped back. And I realized that it was probably closer to 20 points. And I finally had them back.
I've been slowly tapering off the steroids since I got out of the hospital and on that day I had gone from 4 pills a day to 3. I expected... I don't know, for my mouth to maybe taste a little less like a radioactive squirrel. I wasn't expecting it to be the threshold where they finally stopped impeding every fucking thing I wanted to do. But it was.
The best way I can explain is that it was both physically and mentally like taking cotton out of my ears. There had been an echo to everything my brain processed for weeks. Buzzing almost. And so it was taking twice the time it normally would for me to process things. It probably wasn't noticeable to most people. I'm pretty quick to begin with. But I noticed. I remember going to lunch with some friends and just feeling like everything I said was off. My timing, my jokes, they were all delayed. I felt awkward with a group of people that I am usually 100% comfortable with. I guess part of the problem is that I don't hang with dumb people. In interactions with people who don't know me that well, nobody noticed how off I was. But my friends, I know they saw it.
When I followed up with the MS specialist, I wasn't given any new information. I'll be going for an MRI of my spine to try to pin down the diagnosis, but as of now we have essentially no new information. I suppose that isn't completely accurate. The other possibilities for demyelinating diseases were eliminated. I don't have Lyme Disease or Sarcoidosis.
I expected this. I had already spoken to the neurologist in the hospital in depth and she told me we couldn't confirm based on the information we have right now. So I wasn't surprised or upset. But I was curious about the recovery period. If I have MS, I wanted to know when I should expect to feel normal again. And the answer to that question is what scared me.
What my doctor told me is that most people recover fully within 6-8 weeks, but that if I had not within that timeframe, I shouldn't expect to ever fully recover. I had had significant improvement to that point, but I was still missing those 20 something IQ points and for some people, the neurological damage of an MS attack is permanent. I might never feel like myself again. That was hard to hear.
A few days later is when the rubberband snapped back. And I was unbelievably grateful. I went home that day feeling great. I had the energy to cook dinner and play with my daughter. I had the mental clarity to appreciate it. I felt like myself for the first time in over a month. And that's where I'm at right now. Feeling like myself and able to fully appreciate that for all it's worth.
It's funny how much more you appreciate something when you don't have it for a while.
It was like a rubberband snapping back into place.
I hadn't realized just how stretched I had become until I felt it snap back. I knew I had been off, tired. I joked repeatedly about losing 10 points on my IQ. And then one day I was on my way home from work and I snapped back. And I realized that it was probably closer to 20 points. And I finally had them back.
I've been slowly tapering off the steroids since I got out of the hospital and on that day I had gone from 4 pills a day to 3. I expected... I don't know, for my mouth to maybe taste a little less like a radioactive squirrel. I wasn't expecting it to be the threshold where they finally stopped impeding every fucking thing I wanted to do. But it was.
The best way I can explain is that it was both physically and mentally like taking cotton out of my ears. There had been an echo to everything my brain processed for weeks. Buzzing almost. And so it was taking twice the time it normally would for me to process things. It probably wasn't noticeable to most people. I'm pretty quick to begin with. But I noticed. I remember going to lunch with some friends and just feeling like everything I said was off. My timing, my jokes, they were all delayed. I felt awkward with a group of people that I am usually 100% comfortable with. I guess part of the problem is that I don't hang with dumb people. In interactions with people who don't know me that well, nobody noticed how off I was. But my friends, I know they saw it.
When I followed up with the MS specialist, I wasn't given any new information. I'll be going for an MRI of my spine to try to pin down the diagnosis, but as of now we have essentially no new information. I suppose that isn't completely accurate. The other possibilities for demyelinating diseases were eliminated. I don't have Lyme Disease or Sarcoidosis.
I expected this. I had already spoken to the neurologist in the hospital in depth and she told me we couldn't confirm based on the information we have right now. So I wasn't surprised or upset. But I was curious about the recovery period. If I have MS, I wanted to know when I should expect to feel normal again. And the answer to that question is what scared me.
What my doctor told me is that most people recover fully within 6-8 weeks, but that if I had not within that timeframe, I shouldn't expect to ever fully recover. I had had significant improvement to that point, but I was still missing those 20 something IQ points and for some people, the neurological damage of an MS attack is permanent. I might never feel like myself again. That was hard to hear.
A few days later is when the rubberband snapped back. And I was unbelievably grateful. I went home that day feeling great. I had the energy to cook dinner and play with my daughter. I had the mental clarity to appreciate it. I felt like myself for the first time in over a month. And that's where I'm at right now. Feeling like myself and able to fully appreciate that for all it's worth.
It's funny how much more you appreciate something when you don't have it for a while.
Labels:
Doogie says I have MS,
undiluted awesome
Sunday, January 15, 2012
God's Radioactive Ballsack
I've written about it here before. My hatred. For ribbon magnets.
It occurs to me now that I could be the fucking queen of them. All the diseases. I possess them in some way. Some connection. I could go all the way with the magnets. I could support so many Chinese factory workers.
Because I refuse to make another whiny post (at least before I go to the doctor tomorrow, and have fresh things to whine about), I will list for you, the magnets I could have. You're welcome:
M.S.- It's important for me to know what color this magnet would be. Does anyone know? Because if I'm absolutely certain of anything, it is that there is already one in existence. So what color? Because I've decided that the best way to deal with this diagnosis, to throw all my support behind this disease, is to wear it's representative color, head-to-toe. I need to know what color underwear I need to throw away, so someone get me this information as soon as possible, please.
Cancer- Ok. There are lots of cancers. Breast. Ball. Et cetera. But maybe we can just lump them all together and say "cancer is bad, let's beat cancer". Can I get a "cancer is bad" magnet? Because I would be all over that shit. And can we not make it pink? I know I have tits and a vagina, so I should be all about the lady cancers, but my personal experience is with Rodolfo's cancer, thyroid. And I'm pretty sure the color of that magnet should be "scar"... which is a brownish color in case you are wondering.
AIDS- I know this one is red. I can't say I've been personally effected by it, luckily. But everyone hates AIDS, man. And I do like red.
Besides these three big hitters, I could own the magnet game with specific diseases. My mother has heart disease. I have friends whose children have ADHD and Autism. My one sister-in-law has Lupus. The other one has kidney disease. They even make ribbon magnets to support stillbirth research and miscarriage. I could get on all those things. People would think I was mocking the magnets, I would have so many. The problem is that they would be right.
I came to this conclusion simply. I briefly considered which magnets I could not, in good conscience, have on my car. Naturally, I started thinking about the ones that are supposed to be jokes, to support weed and pimping.
And then I realized something else. MS? It's one of the few diseases where medical marijuana is actually considered a sanctioned treatment. I could support weed in all seriousness and people would have to look the other way. Even feel bad for me and shit.
I feel I need to tell you something about myself, though. I'm a bit of a freak. Or maybe it just seems that way to me because I grew up ghetto-adjacent and I might just be the only one in a 200 mile radius. So here it is:
I've never gotten high. In all seriousness, like ever. I've been in situations. I've had the opportunity. In fact, all I would have had to do would have been to stay in a room where some shit was going down and I probably would have caught some sort of buzz. But I always walked out. Because, okay, is it just me? Weed smells like shit.
I mean, that realization came later for me, if I'm being honest. Because during the sunrise of my adolescence, I was convinced that people didn't do drugs. Well, unless they were drug addicts, of course. I was truly and thoroughly horrified a few years later, to find out how many people I knew that I would classify as drug addicts.
A boy I liked and his pre-law friend gave me a good talking-to at a party once (where, coincidentally, I didn't see anything wrong with getting so drunk that I was still hammered at work the next day) about the actual criminalization of marijuana and how it isn't actually that bad or unsafe as a lot of things that are currently perfectly legal. And they mostly convinced me. Except that I still wouldn't do it because I find it so fucking disgusting.
And now I'm wondering about all the potheads I know who don't have MS. Fuckers.
I've also considered blaming all this on God's radioactive spunk. Basically I've decided that New Jersey is the epicenter of Jesus' Chernobyl ballsack and living here made neurological decline an inevitability.
And now I'm wondering one other thing: Was this even funny the FIRST time I wrote about it? I don't know, but I suspect it was not. Cut me some slack people. Holes in my brain and shit.
It occurs to me now that I could be the fucking queen of them. All the diseases. I possess them in some way. Some connection. I could go all the way with the magnets. I could support so many Chinese factory workers.
Because I refuse to make another whiny post (at least before I go to the doctor tomorrow, and have fresh things to whine about), I will list for you, the magnets I could have. You're welcome:
M.S.- It's important for me to know what color this magnet would be. Does anyone know? Because if I'm absolutely certain of anything, it is that there is already one in existence. So what color? Because I've decided that the best way to deal with this diagnosis, to throw all my support behind this disease, is to wear it's representative color, head-to-toe. I need to know what color underwear I need to throw away, so someone get me this information as soon as possible, please.
Cancer- Ok. There are lots of cancers. Breast. Ball. Et cetera. But maybe we can just lump them all together and say "cancer is bad, let's beat cancer". Can I get a "cancer is bad" magnet? Because I would be all over that shit. And can we not make it pink? I know I have tits and a vagina, so I should be all about the lady cancers, but my personal experience is with Rodolfo's cancer, thyroid. And I'm pretty sure the color of that magnet should be "scar"... which is a brownish color in case you are wondering.
AIDS- I know this one is red. I can't say I've been personally effected by it, luckily. But everyone hates AIDS, man. And I do like red.
Besides these three big hitters, I could own the magnet game with specific diseases. My mother has heart disease. I have friends whose children have ADHD and Autism. My one sister-in-law has Lupus. The other one has kidney disease. They even make ribbon magnets to support stillbirth research and miscarriage. I could get on all those things. People would think I was mocking the magnets, I would have so many. The problem is that they would be right.
I came to this conclusion simply. I briefly considered which magnets I could not, in good conscience, have on my car. Naturally, I started thinking about the ones that are supposed to be jokes, to support weed and pimping.
And then I realized something else. MS? It's one of the few diseases where medical marijuana is actually considered a sanctioned treatment. I could support weed in all seriousness and people would have to look the other way. Even feel bad for me and shit.
I feel I need to tell you something about myself, though. I'm a bit of a freak. Or maybe it just seems that way to me because I grew up ghetto-adjacent and I might just be the only one in a 200 mile radius. So here it is:
I've never gotten high. In all seriousness, like ever. I've been in situations. I've had the opportunity. In fact, all I would have had to do would have been to stay in a room where some shit was going down and I probably would have caught some sort of buzz. But I always walked out. Because, okay, is it just me? Weed smells like shit.
I mean, that realization came later for me, if I'm being honest. Because during the sunrise of my adolescence, I was convinced that people didn't do drugs. Well, unless they were drug addicts, of course. I was truly and thoroughly horrified a few years later, to find out how many people I knew that I would classify as drug addicts.
A boy I liked and his pre-law friend gave me a good talking-to at a party once (where, coincidentally, I didn't see anything wrong with getting so drunk that I was still hammered at work the next day) about the actual criminalization of marijuana and how it isn't actually that bad or unsafe as a lot of things that are currently perfectly legal. And they mostly convinced me. Except that I still wouldn't do it because I find it so fucking disgusting.
And now I'm wondering about all the potheads I know who don't have MS. Fuckers.
I've also considered blaming all this on God's radioactive spunk. Basically I've decided that New Jersey is the epicenter of Jesus' Chernobyl ballsack and living here made neurological decline an inevitability.
And now I'm wondering one other thing: Was this even funny the FIRST time I wrote about it? I don't know, but I suspect it was not. Cut me some slack people. Holes in my brain and shit.
Tuesday, January 10, 2012
Who Will I Be?
So yes, I just posted. I know this. But I've found myself to be ambiguously anxious all day and I couldn't put my finger on it until just this moment.
I realize what it is that is really worming it's way into my brain and making me feel desperate.
My mother. I was just thinking about my relationship with her. It occurs to me that it's probably not the relationship most people have with theirs. We are very close. Besides Nadine, she is my best friend. She is the person who understands me. The person who would see through my insecurities and get right to the heart of the matter. She has always been the person I talk to when something isn't quite right.
When I initially thought of having children, my relationship with her is most certainly the reason I always pictured myself having a little girl. I could relate to that relationship. I could see myself having a teeny-tiny version of myself to be my best friend. I could feel my relationship with my mother and how it would color my own relationship with my daughter. And I've always wanted that so badly.
Now, with a life-changing disease on the fucking horizon, all that starts to blur.
I think about losing Nicholas and how hard that was. For a mother to lose her child. There is truly nothing worse. But this, this idea that Caitlyn could lose parts of me, it's a close second. I wonder if she will ever truly know who I was before this disease. I wonder if she will be old enough to remember a mother who could walk and run and play with her. I wonder if my mind will become a mess and I won't be able to convey to her just how special she is, that I won't be able to put things into perspective when she is still too young to understand that being a tween or a teen or a young adult isn't, in fact, the hardest thing in the world.
And I grieve for those things. The things I may miss. The things she won't ever know about me. This blog gets more important to me by the minute. My daughter needs to know who I am now, while I'm still me. Because I'm afraid I don't know how much longer I'll be the same person.
Alright. That is all. I promise I'm not going to go kill myself or anything. I just needed to spit that shit out because it's been driving me crazy.
I realize what it is that is really worming it's way into my brain and making me feel desperate.
My mother. I was just thinking about my relationship with her. It occurs to me that it's probably not the relationship most people have with theirs. We are very close. Besides Nadine, she is my best friend. She is the person who understands me. The person who would see through my insecurities and get right to the heart of the matter. She has always been the person I talk to when something isn't quite right.
When I initially thought of having children, my relationship with her is most certainly the reason I always pictured myself having a little girl. I could relate to that relationship. I could see myself having a teeny-tiny version of myself to be my best friend. I could feel my relationship with my mother and how it would color my own relationship with my daughter. And I've always wanted that so badly.
Now, with a life-changing disease on the fucking horizon, all that starts to blur.
I think about losing Nicholas and how hard that was. For a mother to lose her child. There is truly nothing worse. But this, this idea that Caitlyn could lose parts of me, it's a close second. I wonder if she will ever truly know who I was before this disease. I wonder if she will be old enough to remember a mother who could walk and run and play with her. I wonder if my mind will become a mess and I won't be able to convey to her just how special she is, that I won't be able to put things into perspective when she is still too young to understand that being a tween or a teen or a young adult isn't, in fact, the hardest thing in the world.
And I grieve for those things. The things I may miss. The things she won't ever know about me. This blog gets more important to me by the minute. My daughter needs to know who I am now, while I'm still me. Because I'm afraid I don't know how much longer I'll be the same person.
Alright. That is all. I promise I'm not going to go kill myself or anything. I just needed to spit that shit out because it's been driving me crazy.
Labels:
Doogie says I have MS
Paradox
I have one.
A paradox, I mean. I think it's a paradox, at least. My brain is still a little fuzzy what with all the lesions.
I'm finding myself straddling a fence that is... what's a good metaphor here? Topped with barbed wire? No, I don't think it's that. It isn't that it's a scary, dangerous fence. It's that it doesn't exist.
I think it would be the equivalent of betting on a horse race where all the horses are dead. Or maybe just... that there isn't a race or you aren't sure if there is a race but you are putting money on it anyway?
Fuck. This is going to be fucking jibberish. I'm counting on all you fuckers (totally a term of endearment, by the way) who promised to read my grocery list to not immediately unfollow me.
Alright. Let me untangle this mess. Here it is:
This thing, MS. I don't know what to do with it.
On the one hand (fuck, why do I keep starting new paragraphs that only contain ONE sentence?), I can react in the expected way. I can be sad. I can cry and shit. And I did, just a little, when they first said they think I have it. But mostly I've been ignoring it. Even in the hospital, when you can't really deny that you are there for a pretty serious reason, I sort of just went about my business like usual.
The nurses were surprised how I was always moving around, walking the halls and playing with Caitlyn (who was the sweetest thing ever and I'm pretty sure she made at least a half dozen patient's days when she would walk by their rooms and say "HI!" with an enthusiastic little wave).
Nadine visited me daily and that really helped. She gave me a mani/pedi one day, despite my utterly nasty feet ("I didn't know white people could get ashy, Jaclyn"). She brought me the GOOD cupcakes (as opposed to my weirdo dad who showed up one day with a container of precut mangoes and grapes from a convenience store... for me to put in my hospital refrigerator, I guess?). It felt almost normal. We hung out and joked around and she would hover over me and say "WE WILL GET THROUGH THIS!" in a tone that clearly implied she was snarking all over my disease.
In other words, I did not get a pity party. Just lots of fun visits and delicious snacks. And it was better that way.
Now though. Now I am no longer in the hospital. No longer actively recovering from the holes in my brain. I'm still on steroids, and those fuckers are taking the wind out of me for sure, so I know I'll need a little time to recover from them. But I feel like I should be doing something already. Something to fight this shit. And I'm not even looking into it.
This is not like me. When I want to know about something, I want to know ALL about it. I Dr. Google my ass off on that shit. I write things down and make lists and ask questions. And the most I have done thus far is to ask my neurologist to see the pictures of my brain. Which is awesome when I have absolutely no frame of reference as to what those pictures even mean.
I guess my fear is that once I start looking into this, all the true horrors of it will come to light. I will realize I'm fucking doomed. I will have to deal with the fact that this isn't something you simply "cure". It's something you manage. At least when I thought I had a brain tumor, I figured I'd be fine once they cut it out.
So I'm straddling the fence. I'm somewhere between pretending like everything is normal, like I just had that stomach virus I was thinking of and missed a few days of work, and wanting to full-throttle attack this shit. But attacking means admitting. And I don't know if I'm ready for that.
A paradox, I mean. I think it's a paradox, at least. My brain is still a little fuzzy what with all the lesions.
I'm finding myself straddling a fence that is... what's a good metaphor here? Topped with barbed wire? No, I don't think it's that. It isn't that it's a scary, dangerous fence. It's that it doesn't exist.
I think it would be the equivalent of betting on a horse race where all the horses are dead. Or maybe just... that there isn't a race or you aren't sure if there is a race but you are putting money on it anyway?
Fuck. This is going to be fucking jibberish. I'm counting on all you fuckers (totally a term of endearment, by the way) who promised to read my grocery list to not immediately unfollow me.
Alright. Let me untangle this mess. Here it is:
This thing, MS. I don't know what to do with it.
On the one hand (fuck, why do I keep starting new paragraphs that only contain ONE sentence?), I can react in the expected way. I can be sad. I can cry and shit. And I did, just a little, when they first said they think I have it. But mostly I've been ignoring it. Even in the hospital, when you can't really deny that you are there for a pretty serious reason, I sort of just went about my business like usual.
The nurses were surprised how I was always moving around, walking the halls and playing with Caitlyn (who was the sweetest thing ever and I'm pretty sure she made at least a half dozen patient's days when she would walk by their rooms and say "HI!" with an enthusiastic little wave).
Nadine visited me daily and that really helped. She gave me a mani/pedi one day, despite my utterly nasty feet ("I didn't know white people could get ashy, Jaclyn"). She brought me the GOOD cupcakes (as opposed to my weirdo dad who showed up one day with a container of precut mangoes and grapes from a convenience store... for me to put in my hospital refrigerator, I guess?). It felt almost normal. We hung out and joked around and she would hover over me and say "WE WILL GET THROUGH THIS!" in a tone that clearly implied she was snarking all over my disease.
In other words, I did not get a pity party. Just lots of fun visits and delicious snacks. And it was better that way.
Now though. Now I am no longer in the hospital. No longer actively recovering from the holes in my brain. I'm still on steroids, and those fuckers are taking the wind out of me for sure, so I know I'll need a little time to recover from them. But I feel like I should be doing something already. Something to fight this shit. And I'm not even looking into it.
This is not like me. When I want to know about something, I want to know ALL about it. I Dr. Google my ass off on that shit. I write things down and make lists and ask questions. And the most I have done thus far is to ask my neurologist to see the pictures of my brain. Which is awesome when I have absolutely no frame of reference as to what those pictures even mean.
I guess my fear is that once I start looking into this, all the true horrors of it will come to light. I will realize I'm fucking doomed. I will have to deal with the fact that this isn't something you simply "cure". It's something you manage. At least when I thought I had a brain tumor, I figured I'd be fine once they cut it out.
So I'm straddling the fence. I'm somewhere between pretending like everything is normal, like I just had that stomach virus I was thinking of and missed a few days of work, and wanting to full-throttle attack this shit. But attacking means admitting. And I don't know if I'm ready for that.
Labels:
Doogie says I have MS,
FAIL
Thursday, January 5, 2012
Lesions of Doom
So I haven't posted in a while. There was Christmas obviously. I was extremely busy baking/eating cookies. So there was that.
Christmas was awesome. Last year Caitlyn was very young and she didn't really get it, but this year she was all about the tree and the lights and ripping the wrapping paper off of her presents. As a bonus, I got the Friday before and the Monday after Christmas off of work and the next Friday and Monday as well, for New Year's Eve and Day.
You would think with a 4 day week, followed by a 3 day week, followed by another 4 day week, that I would be... well rested or something. But I wasn't. In fact, by the Monday after Christmas I had gone from feeling generally run down to flat out sick.
The symptoms started off innocent enough. I was exhausted for 2 straight weeks but I had been running around getting ready for Christmas, so I didn't think anything of it. But then that Monday after I woke up from a nap I shouldn't have needed to a call from Rodolfo where I was slurring like a raging drunk. He thought I was making fun of his accent, actually. I figured it was just a side effect of being excessively tired and brushed it off.
That Tuesday after Christmas, I went to work and noticed something unusual. I was still slurring. Still, I decided to give it one more day. On Wednesday it hadn't gotten any better and I left work early to go see my doctor.
After getting a prescription for bloodwork and an MRI, I went home and promptly puked my guts up. I spent all day Thursday in bed sleeping or in the bathroom tending to my various exploding orifices. Friday morning I felt a bit better, but by evening the slurring was back, along with some dizziness and head rushes that made it very hard to focus.
I did my best to ignore the building fatigue and scary neurological symptoms for the entire weekend until Monday, when I realized I would need that MRI. Because it was the Monday right after New Year's Day and my insurance company was not open to approve the MRI and with the slurring getting significantly worse, I was sent to the ER.
And that's where I've been since Monday. The fucking hospital.
First things first, they wanted to see my brain. I had a cat scan within a few hours of getting to the ER, but that showed nothing. I would need a more detailed scan, an MRI (which is what my doctor wanted to begin with, but apparently MRIs are fucking hard to come by). Unfortunately, there is only one MRI machine in the hospital so I would need to stay because they couldn't schedule my test until 6pm the following day. Awesome.
Since I had a full day to wait anyway, my doctors decided to explore some other possibilities. My family history of heart disease and my personal history of an unexplained stillbirth made stroke a real possibility to check off the list. With no numbness or uneveness on either side and with my ability to write and type in tact, they quickly dismissed the stroke theory. I mean, it didn't stop my doctors from doing an ultrasound of my carotid arteries, but that only confirmed what they already knew: I hadn't had a stroke.
Still stuck in a cardiac state of mind, the next test I received was an Echocardiogram, an ultrasound of my heart. All clear there too. Now I would just wait for the MRI that was sure to hold the answer. The answer obviously being a gigantic tumor or ready-to-burst anureusym. Actually, at this point I had decided that the tumor must be small or the cat scan would have caught it. So I spent the next 12 hours or so thinking about all the times I've heard the word "inoperable" on Grey's Anatomy. Obviously it would be inoperable. And Dr. Shepard would not be around to challenge convention and take me on just to prove how badass he is. And Dr. House would not be around to call him an idiot and decide it wasn't a tumor at all, but a pocket of easily disposed of brain-eating parasites that would need to be reported to the CDC ASAP.
Day 2 of hospitalpalooza took me to the MRI that would surely be my ticket to either home or untimely death. They squeezed me in early, around 3pm and took fancy pictures of my brain, which they promptly refused to show me.
Can I talk about MRIs for a minute? Specifically, how shitty an MRI is. I mean, it's a total bitch move to complain about a test that doesn't even hurt, I know, but this bitch is a bit claustrophobic so being trapped in a giant plastic coffin where your head is strapped in so you can't move and its so loud it feels like a building is about to collapse on you? Yeah. Uncool. I was lucky that the techs were cool as hell and gave me updates on how long I had left (the test took about 20 minutes. In a coffin), and the awesome LITE FM music streaming in the headphones that most certainly did not drown out Tower 2 collapsing around me, definitely helped. But still. Jaclyn did not enjoy MRI time. Still, I powered through and felt proud when I never squeezed the little panic attack ball they gave me in case I felt I could not continue. Aces.
And then I got some news I was not expecting. I would need ANOTHER MRI. Because it was unclear whether or not my brain lesions (or brain legions, as I texted at least half a dozen people when I got the news. Yeah. Mental acuity!) were actively inflamed and I'd need a contrast dye injected into my veins to see if they would light up to indicate that they were blatantly inflamed and the cause of my symptoms. This also meant another night in the hospital. Fantastic.
And really, what a night it was. The days weren't so terrible. My friends and family came to keep me company and I was still pretty fatigued, so laying in bed watching shitty TV wasn't so bad. And then I got a new roommate.
My first roommate wasn't so bad. She was an elderly Hispanic woman with lots of visitors and a quiet nature. She was released by the end of my second day and a new roommate appeared. A very, very bad roommate.
I felt bad for her. Really I did. She apparently has some kind of chronic pain condition. I'm sure that's awful. But I was not in what you would call a good state of mind. I was just told that I most likely have Multiple Sclerosis, a chronic condition that slowly eats away at your brain and nerve impulses until you have very little function left. It can take years, and lots of people live relatively normal lives in between flare ups until they have significant deterioration in old age, but still. This is not a diagnosis anyone wants to hear. MS is fucking terrifying.
So here I am, contemplating the coming years, the fact that MS isn't just possible, but probable based on my symptoms and brain scan. Wondering what parts of my daughter's life I will miss because I'm too sick to participate in them. Wondering if I'll be around to see my grandchildren. All of these things are bouncing around my head when roommate number 2 shows up.
Roommate number two would like for Jesus to take her. Immediately. She spends a majority of the evening moaning in agony and telling Jesus she's ready to go. She won't use the nurse call button when she needs a shot of painkillers or a bed pan. Nope. She simply moans "HELP! PLEASE HELP ME! SOMEONE HELP ME! I CAN'T TAKE IT ANYMORE". This happens approximately every 5 minutes or so for the duration of the night. This is briefly interspersed with her begging my forgiveness for being so loud. Yeah. Jesus can hear your thoughts I bet. You don't need to pray so loudly. But I totally forgive you.
The following morning, after sporadically sleeping for a grand total of maybe 4 hours, I'm awakened at 5:30am so the nurse can take my vitals. Apparently it's very important to get a patient's blood pressure at the fucking buttcrack of not-even-dawn. My roommate, who had finally been sleeping for a couple of hours, is also woken for vitals. About this time I start to wonder if Jesus is still taking requests. My roommate certainly seems to think so, because she's asking for his mercy again.
After spending half the day waiting for my MRI, my visitors made thoroughly uncomfortable by the desperate moans coming from the other bed, it's finally time for my test. Another half hour inside the coffin of noise and death is accompanied by the exciting sensation that my cheeks are flapping back and forth. Because an MRI is a giant magnet and the dye they use is made of iron. It's kind of funny because they had a 20 question long checklist of metal things they have to ask if you have in your body before the test, and yet then they deliberately filled me with metal and stuck me in a giant magnet. Still, I can't complain too much. The sensation was certainly weird, but definitely not painful. I was disappointed to hear that I shouldn't expect to have silver pee, but I suppose that is a disappointment we all must face at one time or another.
Before my test, I was told that active inflammation would cause the dye to light up the lesions (of DOOOOOOOM) in my brain and virtually confirm MS. After waiting several hours for results, a doctor told me that they had seen confirmation in the MRI and that I should expect to hear more from the neurologist assigned to my case.
If I'm being honest, I was kinda crushed. MS is terrifying. But with the help of my family and friends, who researched the crap out of it, I came to realize that it wasn't quite the death sentence I was making it out to be. It is highly treatable and with my early diagnosis and proper treatment, I could delay any significant loss of function for 20 or more years. I was ready to fight this shit. I was forming a plan of attack.
And then the neurologist came to talk to me and explained that sometimes you have to treat people like children because the other primary doctor assigned to my case had only skimmed the comments on my results and hadn't bothered to thoroughly review them. She couldn't say that it wasn't MS. What she could say though, was that the lesions I have are very small and not actively inflamed in any way. This was not a confirmation of MS, as I had been led to believe.
I could still have it. We are waiting on some bloodwork to rule out a few other things. Lyme disease is a possibility, though one I don't really expect to hear, because I've only ever been bit by a tick once, and I was maybe 5 years old at the time. The neurologist was adamant that Lyme can be asymptomatic for years, but I just don't think that is the case with me. Based on my brain scans, which she was kind enough to show me, I don't have enough lesions to say with any certainty that I have MS. There were about 4 or 5 and they were very small. This is my first incident, and I'd need to have at least 2 since MS is considered recurrent. But there is a plan in place.
First, despite not seeing active inflammation, I was admitted to the hospital for 3 days of high dose steroids (I know you were probably thinking I was already admitted, but I was in an annex of the ER, so technically I was still their patient. With the official admission though, I scored a room change and a much quieter roommate). I'm getting the steroids every 6 hours and felt an immediate difference with the very first dose. My energy is returning. My dizziness is gone. My speech is slowly returning to normal. I still almost typed "legions" every single time I referenced it here, but I guess maybe I lost a few IQ point along the way or something. I can live with that. So maybe there wasn't active inflammation, but the improvement certainly seems to imply there was some inflammation in those lesions that is being reversed by the current treatment.
While discussing the possibility of the steroid treatment with my doctor, I was given a few things to think about. Possible side effects. Rarely, she told me, people have psychotic episodes while on them. Roid Rage I suppose. I would call it Hulking out. I'm happy to report that my mental faculties are still in the right order and my pee is neither silver nor green (yes, in my head the Hulk pees green. And when I expected silver pee, I kept picturing the Silver Surfer and mercury-like urine. I'm like a fucking Robo-nerd up in here).
So that's where I'm at. I have a referral to an MS specialist when I get out of here in a day or two, my speech and energy levels have mostly returned to normal and I do, in fact have a plan for when I go home. I may not have an official diagnosis, but I know that MS is still on the table. And I know how important it is to stay physically active and mentally sharp. So I'm hoping to hire a personal trainer at my gym. Nadine downloaded Words with Friends on my phone and I've been playing that. I won't shut the fuck up because, I know the more I talk, the more I blog, the more I use my brain in the ways I know it is capable of, the more I am building THOSE muscles, just as I'll build muscles in my arms and legs when I work out.
I have a life, a husband, a kid to think of. I have a phenomenal family and amazing friends who won't let me slide into self-pity. I have the will to fight this, whatever it is. I'm still disappointed that my pee didn't come out like mercury though.
So what about you guys? Any information I should know about? I'd love to hear what you have to say!
Christmas was awesome. Last year Caitlyn was very young and she didn't really get it, but this year she was all about the tree and the lights and ripping the wrapping paper off of her presents. As a bonus, I got the Friday before and the Monday after Christmas off of work and the next Friday and Monday as well, for New Year's Eve and Day.
You would think with a 4 day week, followed by a 3 day week, followed by another 4 day week, that I would be... well rested or something. But I wasn't. In fact, by the Monday after Christmas I had gone from feeling generally run down to flat out sick.
The symptoms started off innocent enough. I was exhausted for 2 straight weeks but I had been running around getting ready for Christmas, so I didn't think anything of it. But then that Monday after I woke up from a nap I shouldn't have needed to a call from Rodolfo where I was slurring like a raging drunk. He thought I was making fun of his accent, actually. I figured it was just a side effect of being excessively tired and brushed it off.
That Tuesday after Christmas, I went to work and noticed something unusual. I was still slurring. Still, I decided to give it one more day. On Wednesday it hadn't gotten any better and I left work early to go see my doctor.
After getting a prescription for bloodwork and an MRI, I went home and promptly puked my guts up. I spent all day Thursday in bed sleeping or in the bathroom tending to my various exploding orifices. Friday morning I felt a bit better, but by evening the slurring was back, along with some dizziness and head rushes that made it very hard to focus.
I did my best to ignore the building fatigue and scary neurological symptoms for the entire weekend until Monday, when I realized I would need that MRI. Because it was the Monday right after New Year's Day and my insurance company was not open to approve the MRI and with the slurring getting significantly worse, I was sent to the ER.
And that's where I've been since Monday. The fucking hospital.
First things first, they wanted to see my brain. I had a cat scan within a few hours of getting to the ER, but that showed nothing. I would need a more detailed scan, an MRI (which is what my doctor wanted to begin with, but apparently MRIs are fucking hard to come by). Unfortunately, there is only one MRI machine in the hospital so I would need to stay because they couldn't schedule my test until 6pm the following day. Awesome.
Since I had a full day to wait anyway, my doctors decided to explore some other possibilities. My family history of heart disease and my personal history of an unexplained stillbirth made stroke a real possibility to check off the list. With no numbness or uneveness on either side and with my ability to write and type in tact, they quickly dismissed the stroke theory. I mean, it didn't stop my doctors from doing an ultrasound of my carotid arteries, but that only confirmed what they already knew: I hadn't had a stroke.
Still stuck in a cardiac state of mind, the next test I received was an Echocardiogram, an ultrasound of my heart. All clear there too. Now I would just wait for the MRI that was sure to hold the answer. The answer obviously being a gigantic tumor or ready-to-burst anureusym. Actually, at this point I had decided that the tumor must be small or the cat scan would have caught it. So I spent the next 12 hours or so thinking about all the times I've heard the word "inoperable" on Grey's Anatomy. Obviously it would be inoperable. And Dr. Shepard would not be around to challenge convention and take me on just to prove how badass he is. And Dr. House would not be around to call him an idiot and decide it wasn't a tumor at all, but a pocket of easily disposed of brain-eating parasites that would need to be reported to the CDC ASAP.
Day 2 of hospitalpalooza took me to the MRI that would surely be my ticket to either home or untimely death. They squeezed me in early, around 3pm and took fancy pictures of my brain, which they promptly refused to show me.
Can I talk about MRIs for a minute? Specifically, how shitty an MRI is. I mean, it's a total bitch move to complain about a test that doesn't even hurt, I know, but this bitch is a bit claustrophobic so being trapped in a giant plastic coffin where your head is strapped in so you can't move and its so loud it feels like a building is about to collapse on you? Yeah. Uncool. I was lucky that the techs were cool as hell and gave me updates on how long I had left (the test took about 20 minutes. In a coffin), and the awesome LITE FM music streaming in the headphones that most certainly did not drown out Tower 2 collapsing around me, definitely helped. But still. Jaclyn did not enjoy MRI time. Still, I powered through and felt proud when I never squeezed the little panic attack ball they gave me in case I felt I could not continue. Aces.
And then I got some news I was not expecting. I would need ANOTHER MRI. Because it was unclear whether or not my brain lesions (or brain legions, as I texted at least half a dozen people when I got the news. Yeah. Mental acuity!) were actively inflamed and I'd need a contrast dye injected into my veins to see if they would light up to indicate that they were blatantly inflamed and the cause of my symptoms. This also meant another night in the hospital. Fantastic.
And really, what a night it was. The days weren't so terrible. My friends and family came to keep me company and I was still pretty fatigued, so laying in bed watching shitty TV wasn't so bad. And then I got a new roommate.
My first roommate wasn't so bad. She was an elderly Hispanic woman with lots of visitors and a quiet nature. She was released by the end of my second day and a new roommate appeared. A very, very bad roommate.
I felt bad for her. Really I did. She apparently has some kind of chronic pain condition. I'm sure that's awful. But I was not in what you would call a good state of mind. I was just told that I most likely have Multiple Sclerosis, a chronic condition that slowly eats away at your brain and nerve impulses until you have very little function left. It can take years, and lots of people live relatively normal lives in between flare ups until they have significant deterioration in old age, but still. This is not a diagnosis anyone wants to hear. MS is fucking terrifying.
So here I am, contemplating the coming years, the fact that MS isn't just possible, but probable based on my symptoms and brain scan. Wondering what parts of my daughter's life I will miss because I'm too sick to participate in them. Wondering if I'll be around to see my grandchildren. All of these things are bouncing around my head when roommate number 2 shows up.
Roommate number two would like for Jesus to take her. Immediately. She spends a majority of the evening moaning in agony and telling Jesus she's ready to go. She won't use the nurse call button when she needs a shot of painkillers or a bed pan. Nope. She simply moans "HELP! PLEASE HELP ME! SOMEONE HELP ME! I CAN'T TAKE IT ANYMORE". This happens approximately every 5 minutes or so for the duration of the night. This is briefly interspersed with her begging my forgiveness for being so loud. Yeah. Jesus can hear your thoughts I bet. You don't need to pray so loudly. But I totally forgive you.
The following morning, after sporadically sleeping for a grand total of maybe 4 hours, I'm awakened at 5:30am so the nurse can take my vitals. Apparently it's very important to get a patient's blood pressure at the fucking buttcrack of not-even-dawn. My roommate, who had finally been sleeping for a couple of hours, is also woken for vitals. About this time I start to wonder if Jesus is still taking requests. My roommate certainly seems to think so, because she's asking for his mercy again.
After spending half the day waiting for my MRI, my visitors made thoroughly uncomfortable by the desperate moans coming from the other bed, it's finally time for my test. Another half hour inside the coffin of noise and death is accompanied by the exciting sensation that my cheeks are flapping back and forth. Because an MRI is a giant magnet and the dye they use is made of iron. It's kind of funny because they had a 20 question long checklist of metal things they have to ask if you have in your body before the test, and yet then they deliberately filled me with metal and stuck me in a giant magnet. Still, I can't complain too much. The sensation was certainly weird, but definitely not painful. I was disappointed to hear that I shouldn't expect to have silver pee, but I suppose that is a disappointment we all must face at one time or another.
Before my test, I was told that active inflammation would cause the dye to light up the lesions (of DOOOOOOOM) in my brain and virtually confirm MS. After waiting several hours for results, a doctor told me that they had seen confirmation in the MRI and that I should expect to hear more from the neurologist assigned to my case.
If I'm being honest, I was kinda crushed. MS is terrifying. But with the help of my family and friends, who researched the crap out of it, I came to realize that it wasn't quite the death sentence I was making it out to be. It is highly treatable and with my early diagnosis and proper treatment, I could delay any significant loss of function for 20 or more years. I was ready to fight this shit. I was forming a plan of attack.
And then the neurologist came to talk to me and explained that sometimes you have to treat people like children because the other primary doctor assigned to my case had only skimmed the comments on my results and hadn't bothered to thoroughly review them. She couldn't say that it wasn't MS. What she could say though, was that the lesions I have are very small and not actively inflamed in any way. This was not a confirmation of MS, as I had been led to believe.
I could still have it. We are waiting on some bloodwork to rule out a few other things. Lyme disease is a possibility, though one I don't really expect to hear, because I've only ever been bit by a tick once, and I was maybe 5 years old at the time. The neurologist was adamant that Lyme can be asymptomatic for years, but I just don't think that is the case with me. Based on my brain scans, which she was kind enough to show me, I don't have enough lesions to say with any certainty that I have MS. There were about 4 or 5 and they were very small. This is my first incident, and I'd need to have at least 2 since MS is considered recurrent. But there is a plan in place.
First, despite not seeing active inflammation, I was admitted to the hospital for 3 days of high dose steroids (I know you were probably thinking I was already admitted, but I was in an annex of the ER, so technically I was still their patient. With the official admission though, I scored a room change and a much quieter roommate). I'm getting the steroids every 6 hours and felt an immediate difference with the very first dose. My energy is returning. My dizziness is gone. My speech is slowly returning to normal. I still almost typed "legions" every single time I referenced it here, but I guess maybe I lost a few IQ point along the way or something. I can live with that. So maybe there wasn't active inflammation, but the improvement certainly seems to imply there was some inflammation in those lesions that is being reversed by the current treatment.
While discussing the possibility of the steroid treatment with my doctor, I was given a few things to think about. Possible side effects. Rarely, she told me, people have psychotic episodes while on them. Roid Rage I suppose. I would call it Hulking out. I'm happy to report that my mental faculties are still in the right order and my pee is neither silver nor green (yes, in my head the Hulk pees green. And when I expected silver pee, I kept picturing the Silver Surfer and mercury-like urine. I'm like a fucking Robo-nerd up in here).
So that's where I'm at. I have a referral to an MS specialist when I get out of here in a day or two, my speech and energy levels have mostly returned to normal and I do, in fact have a plan for when I go home. I may not have an official diagnosis, but I know that MS is still on the table. And I know how important it is to stay physically active and mentally sharp. So I'm hoping to hire a personal trainer at my gym. Nadine downloaded Words with Friends on my phone and I've been playing that. I won't shut the fuck up because, I know the more I talk, the more I blog, the more I use my brain in the ways I know it is capable of, the more I am building THOSE muscles, just as I'll build muscles in my arms and legs when I work out.
I have a life, a husband, a kid to think of. I have a phenomenal family and amazing friends who won't let me slide into self-pity. I have the will to fight this, whatever it is. I'm still disappointed that my pee didn't come out like mercury though.
So what about you guys? Any information I should know about? I'd love to hear what you have to say!
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