We buy things. They have warranties. If they break in a given time, we return them and get new ones (or wait a little while for the one we purchased to be fixed). We expect so much from our appliances, our cars, our cameras, our kids toys, our computers. When they break, we're angry and immediately work to fix the problem. Heaven forbid we have to wait a few weeks for the repairs to be complete. How inconvenient.
How I wish I could check myself into the repair shop to fix my problem. I'm defective, broken, but unlike a car or computer, I can't be fixed or replaced. That doesn't mean I can't try.
There is so much in my head right now. So many questions, so many unknowns. That doesn't stop me from asking and asking and asking, hoping one day there'll be some light shed on something, some A-ha moment. I know the likelihood of that is pretty slim, but until I'm told otherwise, that's the thin light at the end of the tunnel that I'm reaching for. While I don't seem to be getting any closer, with each question and each unknown, the sliver of light doesn't get much brighter, but it stays constant.
I've questioned a lot before my diagnosis; I fumbled around the unknown, looking for a place where I could feel comfortable. Was it church, some kind of spiritual movement? I was always too afraid to try. Afraid of what, I'm not entirely sure. I fear failure. I fear ridicule. I fear offending.
Fear is a big hurdle, but I'm slowly making my way to the starting line. I'm warming up, getting ready to make the big run and - hopefully - the big jump over. I hope I fly gracefully over the bar. I hope my foot doesn't catch and trip me up. So far, my feet are doing what they're supposed to do; no disease-related trip-ups. I figure now the time to make sure I can fly gracefully on my own. Time to try new things.
I had my energy healed the other day. A good friend of mine has trained in Eastern philosophy and healing. She and her husband run and operate an alternative healing wellness center out of their home in Maryland. We had a phone consultation on Saturday night. I don't quite know or understand how it works, but I know I went to bed feeling lighter than I have in a long time. Libby found lots of "sticky stuff" in my energy levels. She helped clear some of that sticky stuff. I know there's more work to be done and I know now's the time. So I tried something else new.
A friend's mother-in-law is a trained iridologist. She stopped by yesterday and read my eyes. Why not? What I find so frustrating about MS is the lack of knowledge. Doctors don't know what causes it. They don't know how to cure it. All the can tell you is to eat a healthy diet, exercise and stay stress-free. Sounds like a prescription for everyone. Unfortunately, I'm not happy with that blanket "cure." There has to be something more I can do. Perhaps I'll never find that one special thing that I'll dive into with my whole being and be happy and content to truly believe, but for now, I'm finding little pieces of lots of things to give me something to hold onto while I swim around in the unknown. I think of them as little flotation devices. They may not keep me above water all the time, but while I have them, I can catch my breath and swim a little.
So, I had my eyes read and after the session, learned a couple of things I didn't already know and a few things I did. Do I put a lot of faith into what I learned? Perhaps not, but the suggestions made can't hurt me and may just help a little. So, I ask again, why not?
I'm having acupuncture next week. Need I ask the question again? If bunches of little needles will help me feel better than I do right now, I'm willing to give it a try. I know several people who have tried acupuncture with great results, so I'm eager to try it out for myself. I'm keeping an open mind but not expecting any miraculous MS healing to happen as a result of anything. Unless I'm the medical equivalent of the immaculate conception, I doubt I'll be magically cured of MS by tiny needles, a few more vitamins, and having my energy healed. I do, however, believe that the human body is amazing but so unknown.
So, while I float around in my known of the unknown, diving deeper into the unknown unknown might just be good for my unknown known. If that means believing a little that the eye can tell us things about our bodies that we don't know yet, so be it. If that means believing that tiny needles can help with blood flow throughout our body, so be it. If that means believing that my energy has sticky stuff that needs removing, let me get my scrubbing brush and get to work. If my body is cluttered with sticky stuff, how am I going to be able to get to the foundation and make sure its strong to hold me up over time? I'm checking myself in for a little repair. Lots of little repairs can add up over time to a pretty big overhaul.
Monday, January 26, 2009
Thursday, January 22, 2009
Concerned doctor
While in the middle of preparing dinner last night, I received a phone call from my neurologist (he'll remain "my" neurologist until such time as we find who better suits our needs). He had some concerns. Here's the abbreviated phone call:
Doctor: [He explained that there was some confusion on some paperwork that he received that made it sound as though I was still on solu-medrol. How many days was I on it for?]
Me: [I explained that I was only on it for 5 days, 1 at the hospital and 4 at home. I thought to myself if he looked at my file, he may have answered that question for himself. But ok.]
Doctor: [Talked a bit more about the confusion.]
Me: [Tried to clear up the confusion.]
Doctor: "How are you feeling? How are your symptoms?" ["indicates exact words]
Me: [I explained that I was feeling much better, that the right side was normal, left side was returning to normal.]
Doctor: "That's great news. Ok. Well, good luck."
Um... good luck? Seriously? There was no question as to whether we'd decided on a treatment plan, whether we'd looked into getting a second opinion. Just luck. Well, had I known that was all I needed...
Good luck.
Doctor: [He explained that there was some confusion on some paperwork that he received that made it sound as though I was still on solu-medrol. How many days was I on it for?]
Me: [I explained that I was only on it for 5 days, 1 at the hospital and 4 at home. I thought to myself if he looked at my file, he may have answered that question for himself. But ok.]
Doctor: [Talked a bit more about the confusion.]
Me: [Tried to clear up the confusion.]
Doctor: "How are you feeling? How are your symptoms?" ["indicates exact words]
Me: [I explained that I was feeling much better, that the right side was normal, left side was returning to normal.]
Doctor: "That's great news. Ok. Well, good luck."
Um... good luck? Seriously? There was no question as to whether we'd decided on a treatment plan, whether we'd looked into getting a second opinion. Just luck. Well, had I known that was all I needed...
Good luck.
Wednesday, January 21, 2009
Out after the big snow
We decided it was a good day to get out of the house (after being trapped yesterday due to the BIG SNOW STORM - not sure which made more news here: the inauguration or the severe winter weather - Ha!). Roads were driveable and mostly clear. Lunch was tasty and mostly finger foods (for Ava, anyway). She's done with purees (which actually makes life more complicated as packing food for her now involves many different things cut into little pieces, rather than 3 cubes of food thawed and stirred). She's doing really with it, mostly, and today was one of the first outings with food that we didn't have to take turns feeding her something. I think she was just as happy to get out of the house and see other people as we were!
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"I like seafood. Get it? See food!"
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"Where's more food?"
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"Where's Daddy's nose?"
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Tuesday, January 20, 2009
Monday, January 19, 2009
Silencing the mentals
Things have been pretty good here for the past few days, at least since the last time I posted. Despite the pretty good, I still feel a little bit lost. I feel like I'm stuck in a pinball machine, waiting to bounce off of something that'll shoot me in a different direction. We still don't know anything with any degree of certainty, except that uncertain is the way MS works.
I'm hoping after the specialist appointments next month, we'll know a little more about my case. I'm also hoping that the doctor will go over my lesions with me; show me where they are, how me how big they are. I have the images from the MRI and would post one here, but they were depressing. I made a trip to the hospital last week to get the films from radiology. I was a little scared walking through the crowded hallways of the same place that just two weeks before had taken up so much space in my life and brought me face-to-face with so much uncertainty and fear. I held it together while I waited on the elevator for the happy family to pile in - a mom, a dad, a little girl and a new baby. They all looked so happy and I couldn't help but wonder if Joe, Ava and I would be lucky enough to experience that feeling again.
People ask me if I'm doing ok, if I feel alright. I feel fine - physically. I'm back at the gym five mornings a week (well, I say back like I went with any regularity, when the truth is I hadn't set foot into the gym in over a year and a half - I walk outside, not on a treadmill, weather-permitting). My right leg/foot is 100% normal; my left side, while not 100%, still registers cold with a small degree of pain (no more feeling warm instead of cold) but does not make me feel worse. It's what I call the "mentals" that make me feel bad.
Wondering, when I see a young family with a new baby, whether or not I'll be allowed to have another baby. Right now, that falls into the "who knows" category. The doctors we're scheduled to meet with might tell us that my condition is such that I need to be on medications right now and not off of them for any reason (pregnancy and nursing would be two such reasons to be off medications for any length of time).
Wondering, when I get hot at the gym, if I'm over-exerting myself and sweating more than I should be and whether that will cause a flare-up. When I asked the doctor about exercise, he said "that should be fine" but not to get too hot. Well, what's too hot? I don't know how to judge that, especially now if I get too hot, bad things can happen.
Wondering, when I'm falling asleep on the couch at 8pm, if I'm over-tired and pushing myself too hard (or whether I'm still adjusting to waking up at 5:45 to go to the gym). I like to nap - I could nap every day if I had opportunity to do so. But now when I'm tired in the evening, I wonder if I should have napped earlier. What is too tired? Sure, I've been a little busier than usual, driving to and from doctor appointments, waiting in exam rooms, attending meetings. But I've also been doing normal life stuff: having lunch with friends, going to birthday parties, grocery shopping, running errands, going to playdates. How much is too much?
How many children will I have? How hot is too hot? How much is too much? (I sound a little like Carrie Bradshaw - forgive me; I just finished watching the Sex in the City movie.) And when the mentals start chattering at 11pm, not knowing the answers to these questions with any certainty is very frightening.
I had my first real case of not knowing whether or not I could handle all of this the other night when Ava woke up crying at 9pm and would not fall back asleep until 11:30. By 11, I was done. I was tired (over-tired?) and feeling helpless (as nothing either of us did to soothe her worked). Then I started feeling as though my left leg was getting worse. How do you gauge partial numbness? Did my leg feel more or less numb than the day before? Was the sheet warmer on the left side than the right? At 11 o clock, the mentals are like little gremlins, pushing doubt into your head, pushing out any sense of rational, logical, sanity. All I heard was chatter; all I felt was doubt.
I ended up sitting on the side of the bathtub, sobbing. I called on my "inner Joe" to help calm my nerves, but that didn't work. Luckily the real Joe came in and helped silence the chatter long enough for me to stop crying, take a Lorazepam and drift off to sleep. I hate that I need an anti-anxiety drug to help me sleep some nights. Surely I'm stronger than that - but some nights the mentals are stronger than me. Luckily after a good night of sleep, they're silenced to a whisper. Most days I can keep them at a whisper, but some days, they all whisper together and demand some attention.
One way to ignore the whispers is to think of all the things accomplished during the day, the week, the month (we'll get to the month mark soon, so for now I'm focusing on the day and the week). Some positive things accomplished include finding a counselor who I think I can work with (I see her again tonight, so I'll know more after tonight's session whether there will be a third); finding a great massage therapist; knowing that for now I can still nurse my baby and don't have to wean her if I don't want to; learning that I'm not allergic to anything (at least to nothing that was tested) so my immune system can remain happy (at least as far as what I'm eating is concerned!); and coming closer to perfecting the brownie recipe (next time, a little more rice flour will be added to the mixture).
Playdates and phone calls, visits with friends and working with fondant, care packages and time with a sketch book all keep me grounded. I never thought much about what kept me grounded until I started feeling like I was floating away. There are still times when I feel like I'll come crashing down, but for now, I know that if I keep myself planted a little on the ground, the crash won't hurt so badly.
I'm a dork. I pulled out the Sound of Music soundtrack the other day and sang my way through several trips to and from some place and home. How can you not feel better with Julie Andrews in the car with you? I simply remember my favorite things, and then I don't feeeeeeeeel so bad!
I'm hoping after the specialist appointments next month, we'll know a little more about my case. I'm also hoping that the doctor will go over my lesions with me; show me where they are, how me how big they are. I have the images from the MRI and would post one here, but they were depressing. I made a trip to the hospital last week to get the films from radiology. I was a little scared walking through the crowded hallways of the same place that just two weeks before had taken up so much space in my life and brought me face-to-face with so much uncertainty and fear. I held it together while I waited on the elevator for the happy family to pile in - a mom, a dad, a little girl and a new baby. They all looked so happy and I couldn't help but wonder if Joe, Ava and I would be lucky enough to experience that feeling again.
People ask me if I'm doing ok, if I feel alright. I feel fine - physically. I'm back at the gym five mornings a week (well, I say back like I went with any regularity, when the truth is I hadn't set foot into the gym in over a year and a half - I walk outside, not on a treadmill, weather-permitting). My right leg/foot is 100% normal; my left side, while not 100%, still registers cold with a small degree of pain (no more feeling warm instead of cold) but does not make me feel worse. It's what I call the "mentals" that make me feel bad.
Wondering, when I see a young family with a new baby, whether or not I'll be allowed to have another baby. Right now, that falls into the "who knows" category. The doctors we're scheduled to meet with might tell us that my condition is such that I need to be on medications right now and not off of them for any reason (pregnancy and nursing would be two such reasons to be off medications for any length of time).
Wondering, when I get hot at the gym, if I'm over-exerting myself and sweating more than I should be and whether that will cause a flare-up. When I asked the doctor about exercise, he said "that should be fine" but not to get too hot. Well, what's too hot? I don't know how to judge that, especially now if I get too hot, bad things can happen.
Wondering, when I'm falling asleep on the couch at 8pm, if I'm over-tired and pushing myself too hard (or whether I'm still adjusting to waking up at 5:45 to go to the gym). I like to nap - I could nap every day if I had opportunity to do so. But now when I'm tired in the evening, I wonder if I should have napped earlier. What is too tired? Sure, I've been a little busier than usual, driving to and from doctor appointments, waiting in exam rooms, attending meetings. But I've also been doing normal life stuff: having lunch with friends, going to birthday parties, grocery shopping, running errands, going to playdates. How much is too much?
How many children will I have? How hot is too hot? How much is too much? (I sound a little like Carrie Bradshaw - forgive me; I just finished watching the Sex in the City movie.) And when the mentals start chattering at 11pm, not knowing the answers to these questions with any certainty is very frightening.
I had my first real case of not knowing whether or not I could handle all of this the other night when Ava woke up crying at 9pm and would not fall back asleep until 11:30. By 11, I was done. I was tired (over-tired?) and feeling helpless (as nothing either of us did to soothe her worked). Then I started feeling as though my left leg was getting worse. How do you gauge partial numbness? Did my leg feel more or less numb than the day before? Was the sheet warmer on the left side than the right? At 11 o clock, the mentals are like little gremlins, pushing doubt into your head, pushing out any sense of rational, logical, sanity. All I heard was chatter; all I felt was doubt.
I ended up sitting on the side of the bathtub, sobbing. I called on my "inner Joe" to help calm my nerves, but that didn't work. Luckily the real Joe came in and helped silence the chatter long enough for me to stop crying, take a Lorazepam and drift off to sleep. I hate that I need an anti-anxiety drug to help me sleep some nights. Surely I'm stronger than that - but some nights the mentals are stronger than me. Luckily after a good night of sleep, they're silenced to a whisper. Most days I can keep them at a whisper, but some days, they all whisper together and demand some attention.
One way to ignore the whispers is to think of all the things accomplished during the day, the week, the month (we'll get to the month mark soon, so for now I'm focusing on the day and the week). Some positive things accomplished include finding a counselor who I think I can work with (I see her again tonight, so I'll know more after tonight's session whether there will be a third); finding a great massage therapist; knowing that for now I can still nurse my baby and don't have to wean her if I don't want to; learning that I'm not allergic to anything (at least to nothing that was tested) so my immune system can remain happy (at least as far as what I'm eating is concerned!); and coming closer to perfecting the brownie recipe (next time, a little more rice flour will be added to the mixture).
Playdates and phone calls, visits with friends and working with fondant, care packages and time with a sketch book all keep me grounded. I never thought much about what kept me grounded until I started feeling like I was floating away. There are still times when I feel like I'll come crashing down, but for now, I know that if I keep myself planted a little on the ground, the crash won't hurt so badly.
I'm a dork. I pulled out the Sound of Music soundtrack the other day and sang my way through several trips to and from some place and home. How can you not feel better with Julie Andrews in the car with you? I simply remember my favorite things, and then I don't feeeeeeeeel so bad!
Wednesday, January 14, 2009
A walking doctor's appointment
So far, the next two months are filling up quickly, so if you need me to step in for you at the doctor, I suggest you schedule something soon.
Here are the list of appointments:
Today: Meeting with my new counselor
Friday: Meeting with an allergist (I figure I may as well find out if there are any underlying allergies I have that I can control now to keep my immune system happy)
Next Wednesday: Acupuncturist in the AM; MS group meeting in the PM
The following Monday: Regular "female" doctor visit. Fun.
The following Monday: MS Specialist in Raleigh
Two days later: MS Specialist at UNC-Chapel Hill
A month later: MS Specialist at Duke
Whew. I definitely need an assistant. Good thing I'm not over the 40/50 mark or I'd had to squeeze in a mammogram and a colonoscopy!
Here are the list of appointments:
Today: Meeting with my new counselor
Friday: Meeting with an allergist (I figure I may as well find out if there are any underlying allergies I have that I can control now to keep my immune system happy)
Next Wednesday: Acupuncturist in the AM; MS group meeting in the PM
The following Monday: Regular "female" doctor visit. Fun.
The following Monday: MS Specialist in Raleigh
Two days later: MS Specialist at UNC-Chapel Hill
A month later: MS Specialist at Duke
Whew. I definitely need an assistant. Good thing I'm not over the 40/50 mark or I'd had to squeeze in a mammogram and a colonoscopy!
As heard in a recent conversation:
Me (calling the acupuncturist): Hi, I was recently diagnosed with MS and was given M.C's name as someone to talk with...
Receptionist: Perfect. Can I call you back?
Um... Not sure what part of that was perfect, but I suppose I'll find out when she calls me back in "literally less than five minutes."
Update: Apparently the acupuncturist recently attended an MS event in Raleigh so is aware of the disease and has several patients who have MS. That's good for me, anyway!
Receptionist: Perfect. Can I call you back?
Um... Not sure what part of that was perfect, but I suppose I'll find out when she calls me back in "literally less than five minutes."
Update: Apparently the acupuncturist recently attended an MS event in Raleigh so is aware of the disease and has several patients who have MS. That's good for me, anyway!
Tuesday, January 13, 2009
Quick update: Progress
The search for a new neurologist continues, but we're making progress and actually have appointments scheduled. Joe has taken a part-time job as my appointment coordinator (I never imagined I'd have an assistant! Go me!) and has been in touch with three of the recommended MS specialists in the area.
Apart from having to procure MRI records from the hospital to take with us to the appointments, we're well on our way to meeting with new doctors to discuss my future health plans.
We meet with the MS specialist in my current practice on February 2nd; we meet with the MS specialist at Duke University on March 16th. We're still waiting to hear from and schedule and appointment with the MS specialist at UNC-Chapel Hill. We figure April. A specialist a month. Sounds like one of those mail-order offers, only not as intoxicating as beer, yummy as dessert or beautiful as flowers.
I'm also making some strides on my own, starting with an appointment with a counselor tomorrow. On her list of specialties were Trauma, Loss or Grief, Life Coaching, Illness and Anxiety and Fears. Sounds like she'll be a good fit for all that's mulling around in my head at the moment. If I find I'm making gluten-free brownies a little more than is considered healthy, she also specializes in Eating Disorders. I've got it all covered! Her short bio reads that she will help me on my "journey of self-awareness and exploration" and improve my life and inner-self. I especially like the part that states: Life will become less stressful, more manageable, healthier. You will have a better understanding of your thought processes, feelings, and behaviors. She called me right back after I left her a message explaining my situation: I'm 33, a mother to a one-year old and was just diagnosed with MS. One of the first things she offered was that she, too, was a mother. I'm looking forward to meeting with her, knowing at least she understands the stresses involved in parenting (unless she has the only stress-free child/ren in the world, in which case, perhaps she'll offer some pointers).
In addition to taking care of my mental well-being, I'm hoping to find an allergist to make sure that there are no underlying allergies that need attention. Remember, it's all about keeping the immune system happy, so if I'm allergic to gluten-free brownies... well, then I'll have some tough choices ahead of me. Hopefully my immune system will come back with a clean bill of health and I can continue to eat healthy and focus on keeping myself stress-free, not worrying about pollen levels or whether the dish I order at dinner has butter in it.
I do need to schedule an appointment with the acupuncturist referred to me by my massage therapist. No one can accuse me of not taking ownership of my health and body. My massage therapist, my counselor, my neurologist, [my] acupuncturist, [my] allergist. What's next? Any suggestions? Email them to joe[at]daleshealthcare.com. I'm sure he can find just a few more minutes in his day for a few more phone calls!
And what are you doing when you're not making appointments? Oh, just a little light reading. The following can be found scattered around my house, on the bookshelf in the living room, next to my bed or on the table in the living room. Some for inspiration, and knowledge, others for contemplation and fun.
A little poetry to get me thinking; I've seen some of his verse in other books and it seems like the kind of visual poetry that would do me good, especially on a rainy day.
I haven't read much Poe, but I'm a sucker for the B&N collections.
I don't think this needs an explanation, although I question a book that reminds people recently diagnosed with a disease to "continue to take good care of yourself by paying attention to what you wear, maintaining good hygiene, and sticking to your grooming rituals." I haven't picked this one up in a few days.
I was mesmerized by this young author when I first saw her on Oprah a while back. (Yes, I love Oprah.) She's battling an incurable form of cancer, yet you wouldn't know it to look and listen to her. She is so full of life and has such an amazing spirit, one can only be inspired to be happier, healthier and more alive.
Another Oprah book. I happened to tune into her Spirituality episode the other day and this book spoke to me. I want to break open and grow; I figure since this is all so new to me, a manual wouldn't be a bad thing.
I loved the cover of this book (yes, I am a judger) and while I was buying the plethora of MS and gluten-free books the other day, Joe reminded me to buy something fun. I always scan telephone poles and tall trees for hawks, love watching the gold finches swoop around the yard, and always smile when I see the bluebirds, woodpeckers and the grumpy kingfisher at the lake. Perhaps this book will give me new insights as I eagerly await the return of all my feathered friends in the spring.
Apart from having to procure MRI records from the hospital to take with us to the appointments, we're well on our way to meeting with new doctors to discuss my future health plans.
We meet with the MS specialist in my current practice on February 2nd; we meet with the MS specialist at Duke University on March 16th. We're still waiting to hear from and schedule and appointment with the MS specialist at UNC-Chapel Hill. We figure April. A specialist a month. Sounds like one of those mail-order offers, only not as intoxicating as beer, yummy as dessert or beautiful as flowers.
I'm also making some strides on my own, starting with an appointment with a counselor tomorrow. On her list of specialties were Trauma, Loss or Grief, Life Coaching, Illness and Anxiety and Fears. Sounds like she'll be a good fit for all that's mulling around in my head at the moment. If I find I'm making gluten-free brownies a little more than is considered healthy, she also specializes in Eating Disorders. I've got it all covered! Her short bio reads that she will help me on my "journey of self-awareness and exploration" and improve my life and inner-self. I especially like the part that states: Life will become less stressful, more manageable, healthier. You will have a better understanding of your thought processes, feelings, and behaviors. She called me right back after I left her a message explaining my situation: I'm 33, a mother to a one-year old and was just diagnosed with MS. One of the first things she offered was that she, too, was a mother. I'm looking forward to meeting with her, knowing at least she understands the stresses involved in parenting (unless she has the only stress-free child/ren in the world, in which case, perhaps she'll offer some pointers).
In addition to taking care of my mental well-being, I'm hoping to find an allergist to make sure that there are no underlying allergies that need attention. Remember, it's all about keeping the immune system happy, so if I'm allergic to gluten-free brownies... well, then I'll have some tough choices ahead of me. Hopefully my immune system will come back with a clean bill of health and I can continue to eat healthy and focus on keeping myself stress-free, not worrying about pollen levels or whether the dish I order at dinner has butter in it.
I do need to schedule an appointment with the acupuncturist referred to me by my massage therapist. No one can accuse me of not taking ownership of my health and body. My massage therapist, my counselor, my neurologist, [my] acupuncturist, [my] allergist. What's next? Any suggestions? Email them to joe[at]daleshealthcare.com. I'm sure he can find just a few more minutes in his day for a few more phone calls!
And what are you doing when you're not making appointments? Oh, just a little light reading. The following can be found scattered around my house, on the bookshelf in the living room, next to my bed or on the table in the living room. Some for inspiration, and knowledge, others for contemplation and fun.
A little poetry to get me thinking; I've seen some of his verse in other books and it seems like the kind of visual poetry that would do me good, especially on a rainy day.
I haven't read much Poe, but I'm a sucker for the B&N collections. 
I don't think this needs an explanation, although I question a book that reminds people recently diagnosed with a disease to "continue to take good care of yourself by paying attention to what you wear, maintaining good hygiene, and sticking to your grooming rituals." I haven't picked this one up in a few days. 
I was mesmerized by this young author when I first saw her on Oprah a while back. (Yes, I love Oprah.) She's battling an incurable form of cancer, yet you wouldn't know it to look and listen to her. She is so full of life and has such an amazing spirit, one can only be inspired to be happier, healthier and more alive.
Another Oprah book. I happened to tune into her Spirituality episode the other day and this book spoke to me. I want to break open and grow; I figure since this is all so new to me, a manual wouldn't be a bad thing.
I loved the cover of this book (yes, I am a judger) and while I was buying the plethora of MS and gluten-free books the other day, Joe reminded me to buy something fun. I always scan telephone poles and tall trees for hawks, love watching the gold finches swoop around the yard, and always smile when I see the bluebirds, woodpeckers and the grumpy kingfisher at the lake. Perhaps this book will give me new insights as I eagerly await the return of all my feathered friends in the spring.
Monday, January 12, 2009
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Sunday, January 11, 2009
Connections
Since being diagnosed with MS, what I'm most shocked at (aside from the fact that I actually have it!) is how many people I know either have MS or know someone who does. Until recently, only my brother-in-law had MS in my immediate circle of people, but thanks to Facebook, that circle now includes many more people.
Connections. It has been so helpful to me to know that so many people out in the world - whether in my neighborhood or as far away as Australia - care about me and my well-being. I'm not sure I'd have such a wide-spread support group were it not for Facebook. Perhaps I should title this entry "Ode to Facebook," but in all seriousness, I've reconnected with so many people who just fell away as we moved to the US, after I graduated from high school, left that one job, left that other job, or moved to North Carolina. I'm so grateful for all of these connections - yet, I'm struck by the irony of it all. At the same time that the connections between my brain and my body are breaking down, the connections I'm making outside my body are making me stronger.
I spoke on the phone this afternoon to a girl I knew for a little while in high school. We weren't close friends (although we tried out for cheerleading together - neither of us made it) and lost touch after high school (as I did with many friends despite all the "Keep in touch" sentiments written in our high school yearbooks). We reconnected recently on Facebook and comment on each others status every now and then. (Besides commenting on photos, what else is there to do on Facebook?) She reached out to me after I posted my diagnosis, informing me that her fiance has had MS for a year. How strange and oddly comforting to pick up the phone, call a person you haven't spoken to in almost 20 years and just talk about something that connects you once again.
Thank you, Heather, for offering to share your experience with me. It was so helpful to hear how this disease has affected you and learn what a positive impact it has had on your life.
I know I am changed, but haven't quite figure out who I am now. I look at pictures of myself and don't recognize the girl looking back. Until this afternoon, I looked at her and felt sad, knowing that she had no idea what was in store for her. I will look at her now and be happy that she was able to experience so much in her life. I will look at her now and know that she will experience as much and more in her new life. I know it's possible and with each new connection, I feel rejuvenated.
Thank you to all confirmed connections. I didn't realize just how important they were until they were needed most.
Connections. It has been so helpful to me to know that so many people out in the world - whether in my neighborhood or as far away as Australia - care about me and my well-being. I'm not sure I'd have such a wide-spread support group were it not for Facebook. Perhaps I should title this entry "Ode to Facebook," but in all seriousness, I've reconnected with so many people who just fell away as we moved to the US, after I graduated from high school, left that one job, left that other job, or moved to North Carolina. I'm so grateful for all of these connections - yet, I'm struck by the irony of it all. At the same time that the connections between my brain and my body are breaking down, the connections I'm making outside my body are making me stronger.
I spoke on the phone this afternoon to a girl I knew for a little while in high school. We weren't close friends (although we tried out for cheerleading together - neither of us made it) and lost touch after high school (as I did with many friends despite all the "Keep in touch" sentiments written in our high school yearbooks). We reconnected recently on Facebook and comment on each others status every now and then. (Besides commenting on photos, what else is there to do on Facebook?) She reached out to me after I posted my diagnosis, informing me that her fiance has had MS for a year. How strange and oddly comforting to pick up the phone, call a person you haven't spoken to in almost 20 years and just talk about something that connects you once again.
Thank you, Heather, for offering to share your experience with me. It was so helpful to hear how this disease has affected you and learn what a positive impact it has had on your life.
I know I am changed, but haven't quite figure out who I am now. I look at pictures of myself and don't recognize the girl looking back. Until this afternoon, I looked at her and felt sad, knowing that she had no idea what was in store for her. I will look at her now and be happy that she was able to experience so much in her life. I will look at her now and know that she will experience as much and more in her new life. I know it's possible and with each new connection, I feel rejuvenated.
Thank you to all confirmed connections. I didn't realize just how important they were until they were needed most.
Rock bottom and being open
So, I hit rock bottom this weekend. I'm not sure if I hit *the* rock bottom or one of the many levels of rock bottom, but I hit hard regardless of what I hit. There have been many tears since we first drove to the Emergency Room two weeks ago, but these tears were very different.
These tears were unstoppable. They left me breathless, drained - and very puffy-faced in the morning. They started on the drive to dinner on Friday after the Neurology appointment that me feeling as though I'd been punched in the stomach, again. And I cried, and cried, and sobbed. Lucky for me, it's been an emotional two weeks so I was able to salvage some used tissues in my bag for a repeat performance. I calmed down a bit while Joe ran into Panera to grab us some dinner. I'm not sure why, but paging through the drug information books we were given had a way of soothing me. Perhaps because the drugs will be what ultimately helps me fight MS; perhaps because I could look at them as just paper and words and ignore the emotion bouncing around my head. For a few minutes, I was calmer.
Rock bottom crept up again on the drive home and subsided a bit while we told my Mom of the doctor's visit, where the prevailing emotion was anger and frustration and not fear or hurt. And after we sat still for a while, I hit a low once more and the flood gates opened. During these moments I questioned what I'm sure everyone questions at some point in their life: Why me? I didn't make a wrong choice. I take care of myself (most days; I won't lie and say I'm a fitness or health fanatic, but I know how to eat and exercise to stay fit and healthy). I'm young. I have a baby to raise. Why me? I know the doctors can't answer that, but that doesn't stop me from asking every now and then.
I know a lot of things that don't make these questions suddenly clearly answered or go away. I know I am not dying. I know I don't have cancer. I know the likelihood is high that I'll live a normal, healthy life. I know there were worse things the doctor could have diagnosed. I know there are people worse off than me in their current health conditions. I know all of these things. I know them ten times over. Unfortunately, as many who have walked in shoes similar to these, knowing all of these things and more does not make your feelings magically silent. I wish they would. I am grateful for the fact that I am walking normally now with little to show for the fact that I couldn't walk properly last week. I'm grateful that I don't have to have surgery to remove a tumor on my neck (one of the diagnoses we faced for a while) and I'm grateful that I don't have to undergo chemotherapy or radiation. I'm grateful for all of these things. I truly am. But being grateful for something doesn't mean I have to like a lesser sentence.
I became more hateful towards MS this weekend. I hate that I have MS. I hate that my husband now has to think about MS everyday. I hate that my daughter will grow up and have to say, "My mom has MS." I hate that MS took away hot tubs. I hate MS took away soaking in a hot bath. I hate that MS could strike me at any moment without warning. I hate that I have to think about every.single.action I take so that I don't get stressed. I hate that a part of my living has been taken away. I hate that I can't just wake up, make breakfast, get dressed and head out for the day. I have to remember to give myself an injection before I leave and while I'm out and about, I need to not get pissed off at a bad driver or a slow line at a store run by an incompetent clerk. I know that doesn't sound so bad, but it's something that so many people can just DO and not think twice about. Sure, we should all live a more calmer, less angry life, but I've been put on the fast track to that life and if I don't obey the rules (I didn't sign up for, mind you), my health could be in jeopardy. I could end up with more lesions on my brain.
I have five lesions on my brain. Five fucking lesions. I'm scared. Ok. I said it with foul language - I don't have much of a sailor's tongue, but it's coming out now. Did I mention that the brilliant doctor we saw the other day (and I'm not being sarcastic: I'm sure he is a wonderful doctor, who is very knowledgeable and understands the human nervous system more than many) still has not shown me my scans. I had 3 MRIs from which they determined that I have MS. I haven't seen a single one. I don't know what the five lesions look like. I don't know where they are. I don't know if they're big or small. That scares the shit out of me and makes me so mad. I have things on my brain that don't belong there and I don't even know what they look like. I asked the doctor if we could see the images and he said we would have to call the hospital to request a CD. That made me mad too. The least I should have gotten for sitting in the MRI chamber for an hour and a half was a complimentary CD.
I hit the hard place again when my Mom left on Saturday morning. Joe and I sat and cried (I sobbed, actually) while Ava was napping. I know I've been in a state of shock the past few weeks, not quite denial, but disbelief that it's all happening. Visiting the doctor's office brought it all to the front - this is real, this is my life with a disease.
I did alright until later that evening when I was nursing Ava at 10pm. I realized that in trying to wean her a little, I'd gone a little too far and would be quite sore in the morning. So, I slowly pulled the sleeping baby from bed and offered her more milk, which she gobbled up quickly. MS brings having children to a whole new level. And that pisses me off more than anything at the moment.
Joe and I had decided we might start trying for #2 later in 2009. Then 2008 ended and all those plans went up in flames. Now, instead of having another baby being dependent on whether we wanted one, could afford one and whether the sperm met the egg, we have so much more to think about.
* will the drugs I ultimately choose cause harm to a fetus?
* what will happen to me if I go off the drugs for the 10 months while carrying a baby?
* will I be able to nurse while on the drugs or will my baby have to be formula-fed?
* one of the drugs says it's ok to be on while pregnant; how do they know damage won't rear its ugly head until the baby is an adult? How do they know??
* will having a baby cause me to have a relapse 6 months later (as our doctor mentioned at the first appointment: MS often shows up 3-6 months post-childbirth and after busy holiday seasons)
* I've likely had MS for years and didn't know, so have already had a baby while I had MS. Can I make the choice to bring a baby into our lives knowing that I have this disease?
Joe and I moved to North Carolina so that the decision to stay home and raise a family wasn't dictated by our mortgage. I hate, hate, hate that this disease now dictates - to a large part - how big or how small our family becomes; it dictates whether or not Ava has a little sibling; it dictates whether or not I am ever able to be pregnant again or nurse a baby again; it dictates whether or not Joe could ever have a son (we all know that's a 50/50 chance and we already decided we wouldn't try for #3 boy if #2 were a girl, but still...). I know Joe and I are ultimately in charge of the decision we make, but for right now, the decision is infinitely more difficult than the first time around. Are we ready? Yes. Sperm, meet Egg. Hello baby. Three weeks ago I didn't even know what Rebif or Copaxone were; now they're joining us at the table and they come with their own opinions and attitudes. And I'm so mad about that. What was such a natural thing with Ava has become so artificial, so chemical, so out of our control. I feel a little like a sperm - floating around and around, hoping like hell that I bump into something soon. Something that I can cling to or crawl onto and walk again.
God grant me the serenity... Yes, I know the prayer. I have it on my bedside table. And I know in time I'll accept all of this as just how life will be from now on. For right now, though, I'm mad and angry and want to smash things. Yesterday I wanted to smash my hand through the window. I wanted to scratch my face until it bled. I wasn't going to do any of those things, but I was experiencing emotions unlike any I'd experienced before. They make you think crazy things, and I'm sure make people do crazy things. I know my limits - at least for the time being. All windows are in tact and the skin on my face is as dry as it was the day before (side-effect of steroids, I believe). But feeling these thoughts is part of whatever journey I've been thrown on. This trip didn't come with an itinerary or even a list of scheduled bathroom breaks. I'm on a ride I didn't sign up for and there's no jumping off. All I know is that it's throwing some pretty harsh things my way - and while others may be experiencing more serious health issues or life issues at the same time, they're not on my train. This is my journey, with my feeling and emotions, my anger, my hate. And that's ok. I know I'll see a light at the end of the tunnel sometime in the future, but I don't believe it walks towards me. I have to move towards it, and while I'm on this train, that means walking through some pretty horrible stuff along the way. I can't just change cars; I have to sit awhile in each until space in the next car opens up. Then I can move forward.
These tears were unstoppable. They left me breathless, drained - and very puffy-faced in the morning. They started on the drive to dinner on Friday after the Neurology appointment that me feeling as though I'd been punched in the stomach, again. And I cried, and cried, and sobbed. Lucky for me, it's been an emotional two weeks so I was able to salvage some used tissues in my bag for a repeat performance. I calmed down a bit while Joe ran into Panera to grab us some dinner. I'm not sure why, but paging through the drug information books we were given had a way of soothing me. Perhaps because the drugs will be what ultimately helps me fight MS; perhaps because I could look at them as just paper and words and ignore the emotion bouncing around my head. For a few minutes, I was calmer.
Rock bottom crept up again on the drive home and subsided a bit while we told my Mom of the doctor's visit, where the prevailing emotion was anger and frustration and not fear or hurt. And after we sat still for a while, I hit a low once more and the flood gates opened. During these moments I questioned what I'm sure everyone questions at some point in their life: Why me? I didn't make a wrong choice. I take care of myself (most days; I won't lie and say I'm a fitness or health fanatic, but I know how to eat and exercise to stay fit and healthy). I'm young. I have a baby to raise. Why me? I know the doctors can't answer that, but that doesn't stop me from asking every now and then.
I know a lot of things that don't make these questions suddenly clearly answered or go away. I know I am not dying. I know I don't have cancer. I know the likelihood is high that I'll live a normal, healthy life. I know there were worse things the doctor could have diagnosed. I know there are people worse off than me in their current health conditions. I know all of these things. I know them ten times over. Unfortunately, as many who have walked in shoes similar to these, knowing all of these things and more does not make your feelings magically silent. I wish they would. I am grateful for the fact that I am walking normally now with little to show for the fact that I couldn't walk properly last week. I'm grateful that I don't have to have surgery to remove a tumor on my neck (one of the diagnoses we faced for a while) and I'm grateful that I don't have to undergo chemotherapy or radiation. I'm grateful for all of these things. I truly am. But being grateful for something doesn't mean I have to like a lesser sentence.
I became more hateful towards MS this weekend. I hate that I have MS. I hate that my husband now has to think about MS everyday. I hate that my daughter will grow up and have to say, "My mom has MS." I hate that MS took away hot tubs. I hate MS took away soaking in a hot bath. I hate that MS could strike me at any moment without warning. I hate that I have to think about every.single.action I take so that I don't get stressed. I hate that a part of my living has been taken away. I hate that I can't just wake up, make breakfast, get dressed and head out for the day. I have to remember to give myself an injection before I leave and while I'm out and about, I need to not get pissed off at a bad driver or a slow line at a store run by an incompetent clerk. I know that doesn't sound so bad, but it's something that so many people can just DO and not think twice about. Sure, we should all live a more calmer, less angry life, but I've been put on the fast track to that life and if I don't obey the rules (I didn't sign up for, mind you), my health could be in jeopardy. I could end up with more lesions on my brain.
I have five lesions on my brain. Five fucking lesions. I'm scared. Ok. I said it with foul language - I don't have much of a sailor's tongue, but it's coming out now. Did I mention that the brilliant doctor we saw the other day (and I'm not being sarcastic: I'm sure he is a wonderful doctor, who is very knowledgeable and understands the human nervous system more than many) still has not shown me my scans. I had 3 MRIs from which they determined that I have MS. I haven't seen a single one. I don't know what the five lesions look like. I don't know where they are. I don't know if they're big or small. That scares the shit out of me and makes me so mad. I have things on my brain that don't belong there and I don't even know what they look like. I asked the doctor if we could see the images and he said we would have to call the hospital to request a CD. That made me mad too. The least I should have gotten for sitting in the MRI chamber for an hour and a half was a complimentary CD.
I hit the hard place again when my Mom left on Saturday morning. Joe and I sat and cried (I sobbed, actually) while Ava was napping. I know I've been in a state of shock the past few weeks, not quite denial, but disbelief that it's all happening. Visiting the doctor's office brought it all to the front - this is real, this is my life with a disease.
I did alright until later that evening when I was nursing Ava at 10pm. I realized that in trying to wean her a little, I'd gone a little too far and would be quite sore in the morning. So, I slowly pulled the sleeping baby from bed and offered her more milk, which she gobbled up quickly. MS brings having children to a whole new level. And that pisses me off more than anything at the moment.
Joe and I had decided we might start trying for #2 later in 2009. Then 2008 ended and all those plans went up in flames. Now, instead of having another baby being dependent on whether we wanted one, could afford one and whether the sperm met the egg, we have so much more to think about.
* will the drugs I ultimately choose cause harm to a fetus?
* what will happen to me if I go off the drugs for the 10 months while carrying a baby?
* will I be able to nurse while on the drugs or will my baby have to be formula-fed?
* one of the drugs says it's ok to be on while pregnant; how do they know damage won't rear its ugly head until the baby is an adult? How do they know??
* will having a baby cause me to have a relapse 6 months later (as our doctor mentioned at the first appointment: MS often shows up 3-6 months post-childbirth and after busy holiday seasons)
* I've likely had MS for years and didn't know, so have already had a baby while I had MS. Can I make the choice to bring a baby into our lives knowing that I have this disease?
Joe and I moved to North Carolina so that the decision to stay home and raise a family wasn't dictated by our mortgage. I hate, hate, hate that this disease now dictates - to a large part - how big or how small our family becomes; it dictates whether or not Ava has a little sibling; it dictates whether or not I am ever able to be pregnant again or nurse a baby again; it dictates whether or not Joe could ever have a son (we all know that's a 50/50 chance and we already decided we wouldn't try for #3 boy if #2 were a girl, but still...). I know Joe and I are ultimately in charge of the decision we make, but for right now, the decision is infinitely more difficult than the first time around. Are we ready? Yes. Sperm, meet Egg. Hello baby. Three weeks ago I didn't even know what Rebif or Copaxone were; now they're joining us at the table and they come with their own opinions and attitudes. And I'm so mad about that. What was such a natural thing with Ava has become so artificial, so chemical, so out of our control. I feel a little like a sperm - floating around and around, hoping like hell that I bump into something soon. Something that I can cling to or crawl onto and walk again.
God grant me the serenity... Yes, I know the prayer. I have it on my bedside table. And I know in time I'll accept all of this as just how life will be from now on. For right now, though, I'm mad and angry and want to smash things. Yesterday I wanted to smash my hand through the window. I wanted to scratch my face until it bled. I wasn't going to do any of those things, but I was experiencing emotions unlike any I'd experienced before. They make you think crazy things, and I'm sure make people do crazy things. I know my limits - at least for the time being. All windows are in tact and the skin on my face is as dry as it was the day before (side-effect of steroids, I believe). But feeling these thoughts is part of whatever journey I've been thrown on. This trip didn't come with an itinerary or even a list of scheduled bathroom breaks. I'm on a ride I didn't sign up for and there's no jumping off. All I know is that it's throwing some pretty harsh things my way - and while others may be experiencing more serious health issues or life issues at the same time, they're not on my train. This is my journey, with my feeling and emotions, my anger, my hate. And that's ok. I know I'll see a light at the end of the tunnel sometime in the future, but I don't believe it walks towards me. I have to move towards it, and while I'm on this train, that means walking through some pretty horrible stuff along the way. I can't just change cars; I have to sit awhile in each until space in the next car opens up. Then I can move forward.
Saturday, January 10, 2009
Neurology appointments do not make good date nights
After two weeks of riding the almost non-reality that MS has taken up residence in our home (and my brain), Joe and I were excited to meet with the neurologist. Perhaps anxious is a better descriptor. On the way to the appointment, we picked up the drug information and how it relates to breastfeeding mothers from the lactation consultant. We had a long list of questions ready to ask and have answered. And my mom stayed at home with Ava to babysit and put her to bed so that Joe and I could enjoy a nice dinner together after the appointment.
What we learned after all of this: neurology appointments do not make good date nights.
The doctor we were meeting with was the first neurologist I had met with 2 weeks ago. He was thorough, calm, soft-spoken, attentive and well-informed. We both liked him a lot when we first met with him. The doctor who took over my care at the hospital was, I'm sure smart and very good at being a neurologist, but lacked any comforting bedside manner and wore *really* bad golf pants the second day we met with him. He would come into the room, tell us briefly what was going on, what he found on the scan, and why he was ordering more tests. Then he'd stand up and linger at the door - half in, half out, almost hoping that we wouldn't ask anymore questions so he could bolt down the hall and not see us again. We were glad to know that he would not be *my* neurologist when all this was over.
Unfortunately, I walked out of the appointment wanting to find a new neurologist.
Although the doctor is still awaiting one more test result to rule out some optic nerve disease, he is fairly certain I have MS. As of today, I don't have an actual diagnosis. I have probablies, most likelies and fairly certains. I'm not expecting to go back on the 22nd and come out with an entirely new or different disease, but it would be nice to actually have a diagnosis and a discussion about what that means. Yesterday's appointment was the drug appointment where we'd meet with the doctor and talk about the drugs on the table and then his nurse would go into more detail for us as we made our decision. Luckily I brought the information from the lactation consultant as he did not know how these drugs would interact with human milk. He did remember that I was nursing, but how it felt to me was that it was more a hinderance than something positive that maybe just needed a little more consideration. The fact is I need to wean - I just wanted to do so on my terms. I've learned that life holds no regard for my terms.
Joe and I went into the appointment knowing a little more about MS than perhaps the average patient who is just diagnosed. We've witnessed it in our family for the past few years since my brother-in-law was diagnosed. We're also internet savvy and can read, so we went in understanding a little of how the disease works. Good thing, because we came out of the appointment not knowing a whole lot more than we did at the start. I know we have a lot of reading and learning to do on our own, but I do expect some amount of knowledge to come from the doctor. Afterall, they're the ones who studied and have practiced for many years and (should) know enough to answer all a patient's questions within reason. I didn't expect him to answer everything with a solid answer; I know that MS is a largely unknown illness, but I expected some anectodal information from all his years as a doctor.
When asked would I likely have vision problems since I showed delay on the vision test, he replied, "Well, you already have vision problems because you have a delay." I'm not sure it's asking too much to expect a little more in an answer. There was no, "In my experience, people who show a visual delay often [fill in the blank]" or "There have been some studies that show . . . " or even something as vague as, "I know the idea of losing your sight can be a very scary one and I wish I had more to offer, but we just don't know." I need a little warm and fuzzy. Just a little bit.
There is no warm. No fuzzy. And no positive. I wanted him to walk in and say, "Hello Dale. I'm so sorry all the tests point to MS. I know this was something you were scared of last week when I met with you. I know it's a scary disease but I want you to know that the medications we're going to discuss today have shown tremendous results on many people just like you. Oh, and how's your cute little baby?"
"I'd rather have MS than diabetes."
This positive gem was handed to us at the first appointment and to date, remains the only positive thing I've heard from either of the doctors we've met with. Thanks, but I'd rather give myself insulin each day, exercise and and follow a low-fat, low-sugar diet and not worry about the five lesions on my brain and the potential for more. Is there a form I fill out to return the MS and exchange it for something less scary? I'd even be willing to stand in a very long line if need be.
We left the appointment feeling less positive than we did going in and about 3 pounds heavier, armed with two giant packages of drug information to mull over. Enter drug marketing. Each package contained photos of healthy, young people (some holding babies), smiling, fishing, hiking. It made me sick to look at. I've always despised the drug commercials on TV. I'm not a doctor, nor am I anywhere near qualified to know which drug I should be taking - but that's where I am now. I need a coin. The two choices are Copaxone (with the tag line, "ThinkThin" - referring to the really thin needles I'll be injecting everyday) and Rebif. I think I'll go with Rebif. Their packaging materials included a free notepad, a fridge magnet and a pen! Who can pass up free stuff!? I think the next time I go to the doctor with a cold, I'll ask him to give me three antibiotics to choose from (of course, I'd need to see their marketing materials and see which uses an image of a woman who most closely resembles me before I can make an informed decision).
But free stuff *is* cool!
Something else that's nice is a parting salutation. "Goodbye and have a great weekend" would have been nice to hear, but by the time we turned around to say goodbye to the doctor, after he led us from his room to the checkout area, he was already gone.
The long drive home to follow.
What we learned after all of this: neurology appointments do not make good date nights.
The doctor we were meeting with was the first neurologist I had met with 2 weeks ago. He was thorough, calm, soft-spoken, attentive and well-informed. We both liked him a lot when we first met with him. The doctor who took over my care at the hospital was, I'm sure smart and very good at being a neurologist, but lacked any comforting bedside manner and wore *really* bad golf pants the second day we met with him. He would come into the room, tell us briefly what was going on, what he found on the scan, and why he was ordering more tests. Then he'd stand up and linger at the door - half in, half out, almost hoping that we wouldn't ask anymore questions so he could bolt down the hall and not see us again. We were glad to know that he would not be *my* neurologist when all this was over.
Unfortunately, I walked out of the appointment wanting to find a new neurologist.
Although the doctor is still awaiting one more test result to rule out some optic nerve disease, he is fairly certain I have MS. As of today, I don't have an actual diagnosis. I have probablies, most likelies and fairly certains. I'm not expecting to go back on the 22nd and come out with an entirely new or different disease, but it would be nice to actually have a diagnosis and a discussion about what that means. Yesterday's appointment was the drug appointment where we'd meet with the doctor and talk about the drugs on the table and then his nurse would go into more detail for us as we made our decision. Luckily I brought the information from the lactation consultant as he did not know how these drugs would interact with human milk. He did remember that I was nursing, but how it felt to me was that it was more a hinderance than something positive that maybe just needed a little more consideration. The fact is I need to wean - I just wanted to do so on my terms. I've learned that life holds no regard for my terms.
Joe and I went into the appointment knowing a little more about MS than perhaps the average patient who is just diagnosed. We've witnessed it in our family for the past few years since my brother-in-law was diagnosed. We're also internet savvy and can read, so we went in understanding a little of how the disease works. Good thing, because we came out of the appointment not knowing a whole lot more than we did at the start. I know we have a lot of reading and learning to do on our own, but I do expect some amount of knowledge to come from the doctor. Afterall, they're the ones who studied and have practiced for many years and (should) know enough to answer all a patient's questions within reason. I didn't expect him to answer everything with a solid answer; I know that MS is a largely unknown illness, but I expected some anectodal information from all his years as a doctor.
When asked would I likely have vision problems since I showed delay on the vision test, he replied, "Well, you already have vision problems because you have a delay." I'm not sure it's asking too much to expect a little more in an answer. There was no, "In my experience, people who show a visual delay often [fill in the blank]" or "There have been some studies that show . . . " or even something as vague as, "I know the idea of losing your sight can be a very scary one and I wish I had more to offer, but we just don't know." I need a little warm and fuzzy. Just a little bit.
There is no warm. No fuzzy. And no positive. I wanted him to walk in and say, "Hello Dale. I'm so sorry all the tests point to MS. I know this was something you were scared of last week when I met with you. I know it's a scary disease but I want you to know that the medications we're going to discuss today have shown tremendous results on many people just like you. Oh, and how's your cute little baby?"
"I'd rather have MS than diabetes."
This positive gem was handed to us at the first appointment and to date, remains the only positive thing I've heard from either of the doctors we've met with. Thanks, but I'd rather give myself insulin each day, exercise and and follow a low-fat, low-sugar diet and not worry about the five lesions on my brain and the potential for more. Is there a form I fill out to return the MS and exchange it for something less scary? I'd even be willing to stand in a very long line if need be.
We left the appointment feeling less positive than we did going in and about 3 pounds heavier, armed with two giant packages of drug information to mull over. Enter drug marketing. Each package contained photos of healthy, young people (some holding babies), smiling, fishing, hiking. It made me sick to look at. I've always despised the drug commercials on TV. I'm not a doctor, nor am I anywhere near qualified to know which drug I should be taking - but that's where I am now. I need a coin. The two choices are Copaxone (with the tag line, "ThinkThin" - referring to the really thin needles I'll be injecting everyday) and Rebif. I think I'll go with Rebif. Their packaging materials included a free notepad, a fridge magnet and a pen! Who can pass up free stuff!? I think the next time I go to the doctor with a cold, I'll ask him to give me three antibiotics to choose from (of course, I'd need to see their marketing materials and see which uses an image of a woman who most closely resembles me before I can make an informed decision).
But free stuff *is* cool!
Something else that's nice is a parting salutation. "Goodbye and have a great weekend" would have been nice to hear, but by the time we turned around to say goodbye to the doctor, after he led us from his room to the checkout area, he was already gone.
The long drive home to follow.
Friday, January 09, 2009
Loaded questions
UPDATED with answers (well, if you can call them "answers"):
As we prepare to meet with my neurologist this afternoon, we've drafted a list of questions so that we don't go through the appointment, get in the car to drive home and halfway home say, "Doh! I meant to ask about..."
Questions for the neurologist:
1. Brain lesions vs. spinal lesions - Is there a different potential prognosis? What does this mean for me in the long term? Will lesions continue to appear in the brain? Will they spread down the spinal cord? Will they shrink with medications? Will new lesions grow if i have flair ups?
A: It's better to have them on the brain because the brain is bigger. (? exactly!) Unclear on the rest of the questions.
2. How much do you know about gluten / casein free diets in helping with MS?
A: Didn't mention this after the look on his face when we mentioned acupuncture and other complimentary care.
3. Would it be wise to speak with an immunologist to learn how to help strengthen my immune system?
A: Didn't ask this one.
4. How old are the lesions? if the one is typical of MS, what are the other 4? Is having 5 on the brain bad?
A: See #1
5. What about complimentary care: gluten-free diet? acupuncture? massage? physical therapy?
A: Got a look and then "well, you seem fine now so I don't think you need physical therapy."
6. Will the transverse myelitis on the neck go away or will it always be there?
A. Don't know.
7. Was there something alarming about my case or did it present as "typical MS"? What prompted all the tests so early?
A. I believe I said MS was at the top of the list when I saw you, if I'm not mistaken.
8. Does having the visual (and auditory?) delay mean that I'll likely have vision (hearing?) problems as I get older?
A. You already have vision problems.
9. Do we need to do a dye MRI to further confirm anything or get more information that would be helpful?
A. Yes, we'll do a dye MRI in a month or two to get a baseline image of my brain.
10. Does your practice work with trained counselors who help patients with MS?
A. Didn't ask.
11. What about having more children? We know there is little, if any, likelihood that our children will inherit the disease, but are there any concerns with MS and pregnancy or nursing?
A. Didn't ask.
12. Do I need to have a repeat MRI in a few months to determine if drugs are working?
A. Will likely have one every 6-12 months from here on out.
13. Is there a database for patients to enter their medical information? Since researchers don't quite know what causes MS but have seen trends in the disease, is there an ongoing collection of such personal information?
A. Didn't ask.
Whew . . . and big sigh.
As we prepare to meet with my neurologist this afternoon, we've drafted a list of questions so that we don't go through the appointment, get in the car to drive home and halfway home say, "Doh! I meant to ask about..."
Questions for the neurologist:
1. Brain lesions vs. spinal lesions - Is there a different potential prognosis? What does this mean for me in the long term? Will lesions continue to appear in the brain? Will they spread down the spinal cord? Will they shrink with medications? Will new lesions grow if i have flair ups?
A: It's better to have them on the brain because the brain is bigger. (? exactly!) Unclear on the rest of the questions.
2. How much do you know about gluten / casein free diets in helping with MS?
A: Didn't mention this after the look on his face when we mentioned acupuncture and other complimentary care.
3. Would it be wise to speak with an immunologist to learn how to help strengthen my immune system?
A: Didn't ask this one.
4. How old are the lesions? if the one is typical of MS, what are the other 4? Is having 5 on the brain bad?
A: See #1
5. What about complimentary care: gluten-free diet? acupuncture? massage? physical therapy?
A: Got a look and then "well, you seem fine now so I don't think you need physical therapy."
6. Will the transverse myelitis on the neck go away or will it always be there?
A. Don't know.
7. Was there something alarming about my case or did it present as "typical MS"? What prompted all the tests so early?
A. I believe I said MS was at the top of the list when I saw you, if I'm not mistaken.
8. Does having the visual (and auditory?) delay mean that I'll likely have vision (hearing?) problems as I get older?
A. You already have vision problems.
9. Do we need to do a dye MRI to further confirm anything or get more information that would be helpful?
A. Yes, we'll do a dye MRI in a month or two to get a baseline image of my brain.
10. Does your practice work with trained counselors who help patients with MS?
A. Didn't ask.
11. What about having more children? We know there is little, if any, likelihood that our children will inherit the disease, but are there any concerns with MS and pregnancy or nursing?
A. Didn't ask.
12. Do I need to have a repeat MRI in a few months to determine if drugs are working?
A. Will likely have one every 6-12 months from here on out.
13. Is there a database for patients to enter their medical information? Since researchers don't quite know what causes MS but have seen trends in the disease, is there an ongoing collection of such personal information?
A. Didn't ask.
Whew . . . and big sigh.
Thursday, January 08, 2009
Peeling back
No one ever expects anything bad to happen to them. I'm sure we've all had a friend or family member go through something that makes us wonder how we might handle their situation. Unfortunately, no amount of wondering actually prepares you for how you'll actually cope. It makes me think of sleep. When a woman is pregnant, everyone says, "Enjoy your sleep while you can. Take lots of naps." Perhaps they've found a way to harness the power of sleep to be used at appropriate sleep-deprived moments. I know I wasn't given that special gift at any baby shower I went to. Ava was born and I stopped sleeping. I went from a nice 8-hour night to sporadic shut-eye in no time flat. I didn't know much about being a new mom but what I did know was this: No amount of napping that occurred during the pregnancy (and there was a great deal of napping) helped me adjust to the immediate lack of zzzs.
The same holds true for my current situation. No amount of wondering how I would react if a parent died or how I would handle breast cancer (both experiences friends have gone through; I don't tend to sit around wondering the worse-case on a daily basis) has prepared me for the (sur)reality in which I find myself. Two weeks ago I was healthy; today I live with a disease that will be with me every single day. This was certainly not something I could have studied for, prepared for, practiced or even really imagined.
What has surprised me a little is how I have handled it all so far. I'll admit I'm not the world's most optimistic or positive person. I try to be a "glass half full" kind of gal, but more often than not, my glass is just slightly less than half full (but see, I use the word full as I try to be optimistic rather than just saying the glass is half empty!). I try, but not always with success. When I've wondered how I would handle bad news, I figured I'd *try* to be positive but would likely find myself sinking quickly into the depths of woe-is-me. Everyone likes a little melodrama, right, and woe-is-me definitely fits the bill.
The past two weeks have shown me that you can't count on anything you ever thought. We're made up of so much more than any preconceived notion. Maybe I'm still in shock, but I haven't found myself scrambling up the hill as I try to avoid the depths of woe-is-me. Don't get me wrong - I've had some bad moments and there have been lots of tears, but I've also managed to talk about what I'm going through (sometimes with tears, other times without). Maybe I'm in denial? Nope. I don't have any crazy thoughts that perhaps the doctor will tell me tomorrow that they made a huge mistake and that I actually have Lyme disease (although wouldn't that be awesome!?). This diagnosis, this disease, this reality is what is is. What *is* a little surprising is how demanding it is, calling on all parts of me, parts I didn't even know I had.
Of course, some of the new parts I have - the five lesions on my brain (I hope to learn more about them tomorrow - do they have names? what do they like, dislike? how can I keep them *silent*?) - I'd rather not have. But no amount of wishing them away will do anything but fuel them. Remember: we want to silence them.
The other new parts are a little less definable. All I can say is "they're there." I won't say that I'm stronger or more positive or suddenly peaceful. I can say that I feel a gentle strength holding me up; a smile and a giggle where I didn't expect one; and a newfound appreciation for calm.
I'm sure as the reality sets in more concretely (let's face it, it's only been a week), I'll have to expose more of myself that I didn't know was there. I'm not sure what I'll find underneath all the layers. I'm sure some of it won't be pretty, but so far I've been very pleasantly surprised by what I'm seeing under it all.
Some green from the yard
While some of our gold mops did not survive the brutal summer sun, several in more shady areas are thriving.
Tuesday, January 06, 2009
Numb
Nights are the hardest. Although I'm awake longer during the day, I'm busier. I have nothing to do at night but think, starting when I nurse Ava before bedtime. It doesn't help that one of my favorite songs on her bedtime CD was playing in the earphones during the brain MRI, the one that revealed the five lesions. The loud jackhammer noise of the MRI machine is slowly lessening, but it's still there. I feel as though this disease has already taken so much from me (at least mentally) so I'm not willing to give it Clair de Lune. One day I'll hear that song and think fondly of the year that I nursed my baby and not of the MRI. But for now, the jackhammer creeps in. Nights are the hardest. I am hateful, but even that is difficult for me right now. I feel emotionally numb. My right leg has improved greatly since starting the steroids and my left leg is starting to recognize cold as cold and not hot or pain. That's positive. But at night I hate it all. I hate not knowing why. I hate that I have a disease. I hate that I have a neurologist. I hate that come Friday we'll be discussing lifelong drug options. I hate that I don't have the feeling right now to yell out loud. I know steroids can do weird things to your body and perhaps this is part of that. I hate that while just sitting isn't what I want to do, it's all I can do at night. Part of me is afraid to just sit as this will allow the thoughts to creep in, but tonight I just feel empty. Drained.
It's such a weird feeling. I had a difficult morning as my mom isn't feeling well so I was back to being mom full-time while Joe was working. I had a good afternoon with a visit from a dear friend who traveled hours in the rain with her little girl. Ava had a short playdate before a good nap. I had some wonderful heartfelt conversation. We had delicious dinner brought to our house, complete with some yummy gluten-free mocha mousse and appple crisp. Along with that came some homemade bath salts that smell wonderful. I hate that I wasn't able to embrace all of this as enough to carry me through to tomorrow. It's not that I need more. I am learning to walk through this with baby steps. I might be fine right now and a little down in an hour - and that's ok.
I enjoyed some quiet time with Joe this evening. We left the house and went to the little cafe up the street. He had a beer. I had a decaf coffee that he said didn't deserve to be in a cup. I laughed at that. We talked a little about his work, a little about MS, but we mostly sat quietly holding hands.
I hate that Joe has to think about MS every day, but I couldn't ask for a more supportive, more nurturing, more loving person to think about this with - even if he does buy a lousy cup of coffee.
Because we need a little cuteness
Saturday, January 03, 2009
Saturday in a quiet house
For the first the first time in a week I can say I haven't been home much today - and not because I was in a hospital bed. This morning we started the steroid treatment early as I had to make a 10am massage appointment. The drip takes 2 hours, so I was hooked up by 7:40 and managed to finish watching The Dark Knight. After that, Joe drove me up the street to my new massage therapist. I was referred to her by both my chiropractor and the teacher at the Little Gym. She lives in our neighborhood - couldn't be more perfect or convenient. Of course, we hoped she was good and I am so happy to report that she was amazing. She doesn't usually see clients on Saturdays but when Joe called her on Thursday and explained my situation, she gladly opened her home to me. She also gave me the name of a new doctor to try in Clayton (an actual practitioner, not a doctor in a mega-practice) and an acupuncturist, both of whom we're going to check out. All in all a great experience.
I just got home from a trip with my mom and Joe to the coffee shop for a little "normal" and then a stroll through a furniture store to look for a new sitting chair and ottoman for my new space. We're converting the "nursery room" area off our bedroom into Dale-space. A place where I can be quiet and think; a place away from baby and toys (hopefully to be used during nap time); a place to read; a place to write; a place to heal.
When I returned home and checked my email, I found a beautiful note from a new friend - my massage therapist. What a great day.
***
It was a pleasure meeting you. I hope that this process... journey... you find yourself embarking on, goes as smoothly as possible. You seem to have plenty of loving support around you - which is infinitely important. I would like you to add me to your support system. I meant it when I said to call me if/when you have the need to. Late evenings/emergency.... it's really okay. My children are in bed 8 - 8:30, and I can work after that without any trouble. Please don't hesitate.
***
Nice to know that people care - even when you don't know them. Thank you to all of you who I know care and who have showed me just how much you care. Your support and kind words and good thoughts have helped me move away from "woe is me" so much more quicker than I thought possible. I know there are still many more tears laying in wait, but more than not, I'm filled with a feeling of ease, knowing that I have so many people to lean on and call on and cry on if I need to. From the bottom of my heart, thank you.
Friday, January 02, 2009
Let the baking begin
Life as I know is *not* over - I can bake, and thanks to a trip to the bookstore, I have myself several new books to add to my collection, or perhaps start a new collection.Before you say, "Ewwww," some of these gluten-free recipes sound (and look!) sooo tasty!
IV Tree
Figured we could all use some cheer as we celebrate MS-mas. Ok, so not nearly as funny as Festivus, but a little silliness can go a long way!
Thursday, January 01, 2009
Solu-Medrol and shaved legs
I shaved my legs for the first time in days. It was a little tricky to do considering my left leg and bum don't like cold things touching them (so leaning with my bum to the wall was out of the question) and my right foot is not very strong at the moment. But I did it. And I was in my well-lit bathroom. In my own bedroom. That made every moment of that shower feel like a little piece of heaven.
We got home last night around nine and decided on the way home to stop by at our friend's house to celebrate the New Year with them and all our other friends. We got home, spent a few minutes with my parents and then walked two houses down to the party. They weren't expecting us so it was a nice surprise. We stayed for about half an hour before I decided it was time to go home. I was standing in the kitchen and felt very hot. All that activity (read: standing) worn me out considering I'd only walked a little bit in the past few days.
I'm sitting here now with my home care nurse who hooked up the steroid IV. I've about half an hour until this does is all done. It takes about 2 hours for the fluid to work its way in. We have three more days of this until this course is finished and then no more drugs until we meet with my neurologist. I'm 33 years old and I have a neurologist. Definitely not something I *ever* thought I'd have to say. My neurologist.
It's scary. There have been tears. Breakdowns. Hugs. But on the whole we're doing ok. It's a day by day thing at the moment until we figure out how best to deal with the long term care. There will be dietary changes, lifestyle changes, attitude changes. I need to learn, first and foremost, how to deal with stress. Not better; just deal with it. I don't deal with stress very well at all and I believe that is a key trigger and reason as to why this happened to me. I don't know what it is about my body that made me susceptible to MS but I believe stress was the trigger. Perhaps if I lived a yoga-filled, deep-breathing, harmonious life in a peaceful ocean-side village this wouldn't have happened. Who knows. What I do know is that starting three days ago, we made a decision, regardless of the diagnosis, to be less stressed. We don't know how to relax very well. This week we had planned to stay home, relax, go out and do fun stuff. We ended up at the ER and in the hospital. Joe says, "We just don't know how to relax and take it easy."
No kidding.
Today has been pretty good. We had the home care nurse come by to show us how to administer the solu-medrol. That took about two hours. Then Rachel and Katie stopped by with muffins and sweet goodies from the New Year's Eve party. Then we had lunch. After lunch I decided that I was going to soak up some sun - the first sun I've seen all week. In fact, it was the first time I'd been outside during the day since Monday afternoon. Pulled up the pant legs, pulled up the sleeves and let the sun warm me up. If I had a hammock, I'd bundle up in a blanket and swing the day around. Amazing how some fresh, cold air clears the cobwebs and crazy thoughts. Clear mind. Calm thoughts. That's what I need.
Last pre-MS photo taken on Saturday
Sunshine after 3 days in a cave
Soaking up some much needed sunshine
IV line
Flowers from our friends Cate, Chris and Devin
We got home last night around nine and decided on the way home to stop by at our friend's house to celebrate the New Year with them and all our other friends. We got home, spent a few minutes with my parents and then walked two houses down to the party. They weren't expecting us so it was a nice surprise. We stayed for about half an hour before I decided it was time to go home. I was standing in the kitchen and felt very hot. All that activity (read: standing) worn me out considering I'd only walked a little bit in the past few days.
I'm sitting here now with my home care nurse who hooked up the steroid IV. I've about half an hour until this does is all done. It takes about 2 hours for the fluid to work its way in. We have three more days of this until this course is finished and then no more drugs until we meet with my neurologist. I'm 33 years old and I have a neurologist. Definitely not something I *ever* thought I'd have to say. My neurologist.
It's scary. There have been tears. Breakdowns. Hugs. But on the whole we're doing ok. It's a day by day thing at the moment until we figure out how best to deal with the long term care. There will be dietary changes, lifestyle changes, attitude changes. I need to learn, first and foremost, how to deal with stress. Not better; just deal with it. I don't deal with stress very well at all and I believe that is a key trigger and reason as to why this happened to me. I don't know what it is about my body that made me susceptible to MS but I believe stress was the trigger. Perhaps if I lived a yoga-filled, deep-breathing, harmonious life in a peaceful ocean-side village this wouldn't have happened. Who knows. What I do know is that starting three days ago, we made a decision, regardless of the diagnosis, to be less stressed. We don't know how to relax very well. This week we had planned to stay home, relax, go out and do fun stuff. We ended up at the ER and in the hospital. Joe says, "We just don't know how to relax and take it easy."
No kidding.
Today has been pretty good. We had the home care nurse come by to show us how to administer the solu-medrol. That took about two hours. Then Rachel and Katie stopped by with muffins and sweet goodies from the New Year's Eve party. Then we had lunch. After lunch I decided that I was going to soak up some sun - the first sun I've seen all week. In fact, it was the first time I'd been outside during the day since Monday afternoon. Pulled up the pant legs, pulled up the sleeves and let the sun warm me up. If I had a hammock, I'd bundle up in a blanket and swing the day around. Amazing how some fresh, cold air clears the cobwebs and crazy thoughts. Clear mind. Calm thoughts. That's what I need.
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