Just over a month ago I began a new MS modifying drug called Avonex. If it wasn’t 3am, I would discuss what this is and how it works. All I know right now is that I haven’t felt this miserable in quite some time. My entire body hurts from head to toe. Even my eye balls hurt. It’s an intense ache, sort of like body aches from the flu, only much worse. And the nausea…..oi. I’m fairly certain my ham fried rice from dinner will be making a reappearance any time now.
I have no idea what to do with myself. I’ve taken the maximum dose of Aleve and won’t be able to take anything else for hours. When I’m not tossing in bed, I’m pacing the house. I hurt too much to even sit still for very long.
Worst of all, it’s Easter weekend. Why does it always have to hit me the hardest on holidays? But this is just another reality of living with MS…the treatment side effects. This should pass by Sunday morning. At least, I pray it will. In the mean time, I am trying desperately to find distraction. So far, nothing is working.
It’s going to be a long weekend.
Saturday, April 23, 2011
Monday, April 11, 2011
Part 10 : This Is Spinal Tap
On the list of diagnostic procedures, the MRI was now checked off.Seeing the inside of your brain is an interesting experience; seeing that something is wrong with it is another experience entirely. To actually see pieces of your brain that are literally deteriorating….it’s disquieting. Those images made everything I had been experiencing….the pain, the vertigo, the numbness, the loss of hearing and the use of one of my hands….all concrete. Those symptoms were always real, always frightening. But they were symptoms and nothing more. These images were tangible. This was something; no longer a theory. My brain, the hub that kept the clockwork of my body working in continuous harmony, was damaged, having been attacked by the very body it inhabited. That knowledge held some real gravity.
Based on the evidence revealed by the MRI, Dr. M. felt fairly confident that I did, in fact, have Multiple Sclerosis. Everything fit; there were no holes in this theory…just in my brain. But Dr. M. didn’t mess around. She wanted to completely rule out every other possibility before settling on a final diagnosis, which meant more blood work and a spinal tap.
Ugh. A spinal tap. I’d heard the horror stories and the idea of my spinal column being tapped like
some maple tree made me queasy. At least with the maple tree you can enjoy some nice pancakes afterward; I doubt spinal fluid pairs as nicely. As such, I gave into my anxieties and decided to postpone the procedure until after the holidays. It was just too daunting to face and I wanted to delay it as much as possible.In hindsight, I should have just got it over and done with. If I thought putting the spinal tap off would make it easier to get through the holidays, I was sorely mistaken. I could think of nothing else over the next four weeks and therefore subjected myself to mistake number two: internet research on the procedure. Accounts of everything from horrible pain to spinal cord damage to paraplegia did nothing but amplify my fear. Though many credible medical sites cited these potential risks, they were rare and unlikely. Still, they happened. And that was enough for my anxiety to feed on.
The subsequent holidays were rough. I still hadn't fully regained the use of my left hand and I still had residual pain and numbness throughout the left side of my body. Still, I did my best to stumble through them as best I could. What else could I do? As the clock struck midnight on January 1, 2007, I closed my eyes and made a wish.
* * *
I would not be so foolish as to tempt fate by assuming that things could not possibly have gotten any worse at this point. But fate, it seems, could not simply let me be. The day before my spinal tap, left side of my body still numb and throbbing and left hand still not functioning, I awoke to discover the right side of my face was numb. Upon inspection in the mirror, the right side of my mouth was slightly drooping and when I tried rubbing my lips together, the right side did not move. I also noticed my right nostril didn’t move either, nor did my right eye. I couldn’t even blink it. The right side of my face was paralyzed.
I had just been Punk’d by the Universe. The Universe was off in a trailer somewhere, laughing with Justin Timberlake as they watched me on hidden camera. Fucking hilarious, guys. Seriously.
As my mind was searching for new expletives to do the situation justice, a thought occurred. Isn’t drooping on one side of the face a sign of a stroke? Ugh, was I really back to another stroke scare? I decided that, like before, this was another manifestation of my now-not-so-mysterious illness and since I was seeing Dr. M. first thing in the morning anyway, I would just let it go for today and hope for the best. That night, I had to Scotch-tape my right eye shut to get some sleep.
At 6:00am the next morning, I arrived at Dr. M’s office completely sleep deprived and with a sick feeling in my stomach. Forget butterflies, I had elephants parading through my tummy. I was escorted to the exam room and Nick and I were left alone while I changed into a gown. As I sat on the exam table waiting for Dr. M. to return, my fear finally got the better of me and I broke down sobbing. Uncontrollable, ugly, breath-stealing sobbing. I attempted to pull myself together before Dr. M. returned, but it was no use. I couldn’t stop the tears. I sat there crying as I once did, a frightened little girl who didn’t want to have to get a shot. As Nick hugged me, I felt juvenile. I was too old to behave this way. I told myself that I could handle this. I wasn’t entirely sure that I could, but I kept saying it to myself anyway. It didn’t help.
I was still crying when Dr. M. returned. When she asked what was wrong, all I could muster saying is “I’m scared”. When she asked what exactly I was afraid of, I realized I wasn't entirely certain. Pain? Something going wrong? Both? She then sat down with me and talked me through the entire procedure step by step….what to expect, what she would be doing and when, how long it would take and that she would be talking me through it every step of the way. Dr. M. explained that she’s done this procedure hundreds of times and was very comfortable with it. She also assured me that most people who come in for this procedure are pretty freaked out, but usually leave laughing. I wasn’t sure I bought that last bit, but her reassuring voice and her willingness to slowly and thoroughly talk me through this was comforting and I was able to catch my breath and cease the tears.
I sat on the table, legs folded with my back to Dr. M. Nick stood in front of me and I held his hands with a bone-cracking grip. Dr. M. was first going to numb the area and said I would feel a few tiny pokes and a bit of stinging as the numbing medicine went in. And she was right….the pokes I felt were very small, nothing I would even quantify as pain. As for the stinging, I didn’t really notice that either. But okay, that was just the numbing part. The long, hollow needle that would penetrate my spine would surely be felt.
After barely a minute, she checked to see if the area was numb by gently poking it with a small pin. I didn’t feel anything. We were ready to go. She told me to hold as still as possible and I held my breath, not daring to breath for fear I would move. I grasped Nick’s hands even tighter. Not a moment later, she told me the needle was in and that she was withdrawing the spinal fluid. And a moment after that, she said we were done.
She was kidding, that was it?? I didn’t feel anything! Not a poke or even any pressure. Nothing. I was starting to feel extremely sheepish. Also, I wanted to punch the people who told me their spinal tap was the most painful experience of their lives. Maybe it was. And maybe I just had the best damn doctor ever. Out of both embarrassment and extreme relief, I actually started to laugh. Dr. M. just smiled and with a wave of her hand said happily “See, I told ya!”
Dr. M and I briefly discussed the paralysis that had cropped up on the right side of my face, which she didn’t seem terribly surprised to see. She sympathized and gave me a look that clearly said “oh great, like you needed one more thing!” She told me not to stress, and that the only thing she was really concerned with was my right eye drying out. She gave me some eye ointment to use throughout the day and, with an affectionate pat on the shoulder, said that we’d follow up in a week to see how I was doing and review the results of the spinal tap.
Another hurdle now behind me, another fear conquered. I knew there was still more to come and that there were plenty of obstacles still ahead of me. But for now, I just breathed a sigh of relief and committed myself to movies in bed with Nick for the rest of the day.
Also, I was pretty confident I had earned an ice cream cone.
Friday, January 28, 2011
The Business End
Okay, people…let’s talk business.
And when I say business I mean, you know, “business”.
“Making a pit stop”.
“Answering nature’s call”.
“Filing some paperwork”.
Whatever you call it, the basic procedures for going to the bathroom is not something into which we typically pour much thought and effort. At least, not since we were old enough to take a certain pride in the activity. For those of us with MS, however, using the potty isn’t always cut-and-dry.
Because multiple sclerosis interrupts or slows the transmission of signals to and from the brain, the electrical impulses to the muscles that are involved in emptying your bowel and bladder can become disrupted, resulting in anything from mild constipation or urine leakage to losing control of the bladder and/or bowel altogether. This spells inconvenience, frustration, the swallowing of a fair bit of pride and a whole heap of embarrassment. In the four years since my diagnosis I’ve felt very fortunate to have avoided these awkward symptoms. That is, until now.
Over the past several months, I’ve noticed an increasing frequency in my need to visit the ladies room. I thought little of it at first, but as time has progressed I’ve found myself running to the potty what seems like every 5 seconds. I just have to ‘go’ all the time. This has caused some daily frustrations and inconveniences both at work and in my leisure activities (thanks for ruining the middle of Inception, bladder…you jerk.), not to mention a considerable loss of sleep due to all the nightly bathroom trips.
Now here’s the kicker…when I actually take my seat upon the throne, not much is happening. Kind of like a Joss Whedon series. He builds us up to this big crescendo…..and then the series gets canceled. My bladder is doing the same damn thing. This could mean two things. Either I really need to empty my bladder but am unable to do so, or I just feel like I need to when I really don’t.
Fun, huh?
Finally, I decided that I was done with the constant pee parade and so I had a frank little chat
with my neurologist. She ordered a bladder scan, which is a test that measures urine output (in addition to the speed and consistency of the flow) and then determines how much urine, if any, remains in the bladder. Basically, I got to pee into a computer. Is it weird that I enjoyed that a little? It’s not often us ladies get the chance to aim at something. Just sayin’.
Anyway, the test did show a bit of hesitancy in getting started as well as some “stop and go” which my neurologist felt was most likely due to random bladder spasms and she referred me to a urologist for further consultation.
I just can’t describe the pleasure of discussing my bathroom visits in detail with so many strangers….my neuro, her nurse, her PA, the urologist and his PA….the fun never stops! I realize these folks are all professionals, but I was growing a bit weary of the constant 20 questions game about my wee. Not to mention having to divulge all the details about this to my husband. Yet more pride swallowed.
Bladder dysfunction is one of the most common symptoms of MS (it is estimated that 80% of people with MS will experience bladder issues at some point) and yet it is one of the symptoms that people with MS are least likely to talk about. I mean, let’s face it…..it’s one thing to say, “Boy, my feet are really tingling today” but most of us are less likely to dive into dialogue about our urinary issues. This can be very embarrassing for some folks and can often add to feelings of isolation. MS is a bitch, ya’ll. It finds ever more ways to shove our pride right down our gullets.
But I digress.
The urologist agreed that I was most likely experiencing MS related bladder spasms and prescribed a medication called Ditropan. Ditropan acts to relax the bladder, allowing it to hold more urine and relieve the constant sensation to “go”.
“Relax the bladder”. I like that phrase. My bladder is plum tired and it could sure use some “me” time. Yeah, that’s Ditropan….a cozy hammock and warm sunbeam in which your bladder can put its feet up and relax. Ahhhhhhh!
What I really appreciate about Ditropan is that I can take it as needed. Perfect. I don’t care to take any more medication than is absolutely necessary and I appreciate the freedom to decide how much is appropriate for me. For now, I am just taking this medication at night since that seems to be the time my bladder issues are most bothersome. And I am happy to report that it is helping.
And here they are, my magic blue pills. Aren’t they majestic? Inscribed with…..is that a ‘V’? Hmm. Kind of reminds me of some other special little blue pills.
Of course, their magic comes at a price, as do all medications; they make me feel fairly dizzy and nauseated from time to time. For now, however, I am willing to make the trade. And that’s what treatment is all about, compromising for the greater good.
And when I say business I mean, you know, “business”.
“Making a pit stop”.
“Answering nature’s call”.
“Filing some paperwork”.
Whatever you call it, the basic procedures for going to the bathroom is not something into which we typically pour much thought and effort. At least, not since we were old enough to take a certain pride in the activity. For those of us with MS, however, using the potty isn’t always cut-and-dry.
Because multiple sclerosis interrupts or slows the transmission of signals to and from the brain, the electrical impulses to the muscles that are involved in emptying your bowel and bladder can become disrupted, resulting in anything from mild constipation or urine leakage to losing control of the bladder and/or bowel altogether. This spells inconvenience, frustration, the swallowing of a fair bit of pride and a whole heap of embarrassment. In the four years since my diagnosis I’ve felt very fortunate to have avoided these awkward symptoms. That is, until now.
Over the past several months, I’ve noticed an increasing frequency in my need to visit the ladies room. I thought little of it at first, but as time has progressed I’ve found myself running to the potty what seems like every 5 seconds. I just have to ‘go’ all the time. This has caused some daily frustrations and inconveniences both at work and in my leisure activities (thanks for ruining the middle of Inception, bladder…you jerk.), not to mention a considerable loss of sleep due to all the nightly bathroom trips.
Now here’s the kicker…when I actually take my seat upon the throne, not much is happening. Kind of like a Joss Whedon series. He builds us up to this big crescendo…..and then the series gets canceled. My bladder is doing the same damn thing. This could mean two things. Either I really need to empty my bladder but am unable to do so, or I just feel like I need to when I really don’t.
Fun, huh?
Finally, I decided that I was done with the constant pee parade and so I had a frank little chat
with my neurologist. She ordered a bladder scan, which is a test that measures urine output (in addition to the speed and consistency of the flow) and then determines how much urine, if any, remains in the bladder. Basically, I got to pee into a computer. Is it weird that I enjoyed that a little? It’s not often us ladies get the chance to aim at something. Just sayin’.Anyway, the test did show a bit of hesitancy in getting started as well as some “stop and go” which my neurologist felt was most likely due to random bladder spasms and she referred me to a urologist for further consultation.
I just can’t describe the pleasure of discussing my bathroom visits in detail with so many strangers….my neuro, her nurse, her PA, the urologist and his PA….the fun never stops! I realize these folks are all professionals, but I was growing a bit weary of the constant 20 questions game about my wee. Not to mention having to divulge all the details about this to my husband. Yet more pride swallowed.
Bladder dysfunction is one of the most common symptoms of MS (it is estimated that 80% of people with MS will experience bladder issues at some point) and yet it is one of the symptoms that people with MS are least likely to talk about. I mean, let’s face it…..it’s one thing to say, “Boy, my feet are really tingling today” but most of us are less likely to dive into dialogue about our urinary issues. This can be very embarrassing for some folks and can often add to feelings of isolation. MS is a bitch, ya’ll. It finds ever more ways to shove our pride right down our gullets.
But I digress.
The urologist agreed that I was most likely experiencing MS related bladder spasms and prescribed a medication called Ditropan. Ditropan acts to relax the bladder, allowing it to hold more urine and relieve the constant sensation to “go”.
“Relax the bladder”. I like that phrase. My bladder is plum tired and it could sure use some “me” time. Yeah, that’s Ditropan….a cozy hammock and warm sunbeam in which your bladder can put its feet up and relax. Ahhhhhhh!
What I really appreciate about Ditropan is that I can take it as needed. Perfect. I don’t care to take any more medication than is absolutely necessary and I appreciate the freedom to decide how much is appropriate for me. For now, I am just taking this medication at night since that seems to be the time my bladder issues are most bothersome. And I am happy to report that it is helping.
And here they are, my magic blue pills. Aren’t they majestic? Inscribed with…..is that a ‘V’? Hmm. Kind of reminds me of some other special little blue pills.
Of course, their magic comes at a price, as do all medications; they make me feel fairly dizzy and nauseated from time to time. For now, however, I am willing to make the trade. And that’s what treatment is all about, compromising for the greater good.
Thursday, January 20, 2011
I'm A Nice-Ass Person With MS
I don't know who this girl is, but I love her.
No really, I L.O.V.E. her.
Thank you, sister. Thank you for unapologeticly being yourself and for putting yourself out there to raise awareness. And thank you for the most awesome explanation of MS I have ever heard!
And yeah, the National MS Society IS a nice-ass society.
No really, I L.O.V.E. her.
Thank you, sister. Thank you for unapologeticly being yourself and for putting yourself out there to raise awareness. And thank you for the most awesome explanation of MS I have ever heard!
And yeah, the National MS Society IS a nice-ass society.
Sunday, December 12, 2010
Catching Up
I kept meaning to get to the next installment of my diagnosis story and to write some updates regarding my condition, new treatments and upcoming procedures. And the next thing I knew, five months had passed. How time flies.
Working full time again has been more of a struggle than anticipated. Pushing my body to work harder, and to keep working after it has reached its limit, has meant the return of several symptoms. Most notably, the extreme fatigue.
Let's talk about MS fatigue for a moment. To quote Judi Bachrach, fellow MS patient and author who perfectly illustrates this topic: "Fatigue is by far the most common and misunderstood of all MS symptoms. "Fatigue" is a common word denoting a common experience shared by everyone; however the word doesn't truly describe this totally overwhelming and paralyzing symptom of MS. "Multi-system failure" more accurately captures what happens when all physical, emotional and cognitive functioning shuts down with the total depletion of any energy available. You could drop things, fall down, stumble or be dizzy, be unable to think or remember or even be able to talk clearly, or shed tears of unexplained frustration or anger. With all this, you would have an urgent need to lie down because there is nothing else you can do. That is multi-system failure, usually referred to as MS fatigue."
MS fatigue is a symptom I experience on an almost daily basis. Spending entire days on my feet dealing with the often grumpy and demanding consumer public, makes this a particularly difficult symptom to cope with.
In addition to the fatigue, I've seen a return of the muscle weakness in my hands, arms and legs making tasks like washing my hair, brushing my teeth and driving my car arduous and sometimes daunting chores. A busy day at the office doesn't always afford the opportunity to sit down, and I often find my legs burning, aching and becoming shaky as a run back and forth through the office assisting patients. Certain repairs on eyewear have also become painful to perform, though I do them anyway either because I'm alone or because I can't stand the embarrassment of having to ask for help to perform one of the most basic functions of my job.
Five months of this has taken quite a toll, but with no end in sight I am constantly brainstorming on ways to simplify and adjust. So far, I haven't figured out much. Between work and running a household (meal prep, laundry, keeping the house tidy and stocked, etc.) I seldom have the energy for anything else.
As a result, I've had to make some choices and give up some things I rather wouldn't have. I haven't done yoga or been to the gym since July and I've had to give up belly dancing, which breaks my heart beyond words. I don't pick up my camera nearly as much as I used to and I haven't touched an embroidery needle in months. And writing....I really miss writing and my blogs. As for my social life....if found, please return.
It's been difficult to set these things aside. They are all things that I love and are part of who I am. I miss the luxury and the freedom to be myself...to go to the gym when I want or go to belly dance class or practice at home. I miss having the mental energy and cognitive functioning to write and blog. I miss taking photos. I miss stitching. I miss my friends. I miss going out with my husband. I miss me.
On top of everything, we are smack dab in the middle of the holidays. I love this time of year, but I am feeling deprived of enjoying it. The holidays come with more to do which, while they are all things I typically enjoy doing (gift shopping, Christmas cards, decorating, baking, going to parties), I'm far too exhausted to even think about any of it. Christmas is in two weeks and I haven't had it in me to even put up our tree. And Christmas cards....I love doing my Christmas cards! But I'm afraid it just may not happen this year, which makes me feel like the worst friend/daughter/great-niece/cousin/sister on the planet. Writing out a Christmas card may not sound like the most daunting task, but it is with MS fatigue. I worry that others might not realize that and take my lack of reaching out this holiday personally. But I suppose there's nothing I can do about those folks. I can only do what I can do.
In an attempt for some reprieve, I applied for an intermittent FMLA leave at work. This would grant me the opportunity to reduce my working hours as needed while still protecting my full-time employee status and thus allowing me to maintain our health insurance coverage.
Yesterday, this little gem arrived in the mail:
(click image to enlarge)
Balls.
Well, there goes that. Needless to say, I was pretty upset by the notice that I do not qualify for FMLA at this time. Though surprisingly, my distress was short-lived. I'm extremely disappointed as I sincerely need some time to rest, recoup and take a little better care of myself, both physically and mentally. But I think I am at a point where I am just too exhausted to be upset; I don't have the energy to spare. And there isn't a damn thing I can do about it anyway. So while I wish circumstances could be different, all I can do at this point is continue to plug along, hope for the best and remember to acknowledge and count my blessings.
The fact is, despite my struggles and challenges, I have much to be grateful for. So much. I also believe that these challenges have been put before me for a reason and I hope to learn what I am meant to learn from them. And while it has been much less than ideal, I have so far been able to do what I have to do. I am grateful for the fact that this disease has not yet taken my ability to work away from me and is still granting me the ability to be a participant in life.
In the meantime, I will continue to do what I can and do my best, and pray for patience and understanding from those around me. I am confident I will devise a way to make participating in the things I love, in life, a little easier.
Working full time again has been more of a struggle than anticipated. Pushing my body to work harder, and to keep working after it has reached its limit, has meant the return of several symptoms. Most notably, the extreme fatigue.
Let's talk about MS fatigue for a moment. To quote Judi Bachrach, fellow MS patient and author who perfectly illustrates this topic: "Fatigue is by far the most common and misunderstood of all MS symptoms. "Fatigue" is a common word denoting a common experience shared by everyone; however the word doesn't truly describe this totally overwhelming and paralyzing symptom of MS. "Multi-system failure" more accurately captures what happens when all physical, emotional and cognitive functioning shuts down with the total depletion of any energy available. You could drop things, fall down, stumble or be dizzy, be unable to think or remember or even be able to talk clearly, or shed tears of unexplained frustration or anger. With all this, you would have an urgent need to lie down because there is nothing else you can do. That is multi-system failure, usually referred to as MS fatigue."
MS fatigue is a symptom I experience on an almost daily basis. Spending entire days on my feet dealing with the often grumpy and demanding consumer public, makes this a particularly difficult symptom to cope with.
In addition to the fatigue, I've seen a return of the muscle weakness in my hands, arms and legs making tasks like washing my hair, brushing my teeth and driving my car arduous and sometimes daunting chores. A busy day at the office doesn't always afford the opportunity to sit down, and I often find my legs burning, aching and becoming shaky as a run back and forth through the office assisting patients. Certain repairs on eyewear have also become painful to perform, though I do them anyway either because I'm alone or because I can't stand the embarrassment of having to ask for help to perform one of the most basic functions of my job.
Five months of this has taken quite a toll, but with no end in sight I am constantly brainstorming on ways to simplify and adjust. So far, I haven't figured out much. Between work and running a household (meal prep, laundry, keeping the house tidy and stocked, etc.) I seldom have the energy for anything else.
As a result, I've had to make some choices and give up some things I rather wouldn't have. I haven't done yoga or been to the gym since July and I've had to give up belly dancing, which breaks my heart beyond words. I don't pick up my camera nearly as much as I used to and I haven't touched an embroidery needle in months. And writing....I really miss writing and my blogs. As for my social life....if found, please return.
It's been difficult to set these things aside. They are all things that I love and are part of who I am. I miss the luxury and the freedom to be myself...to go to the gym when I want or go to belly dance class or practice at home. I miss having the mental energy and cognitive functioning to write and blog. I miss taking photos. I miss stitching. I miss my friends. I miss going out with my husband. I miss me.
On top of everything, we are smack dab in the middle of the holidays. I love this time of year, but I am feeling deprived of enjoying it. The holidays come with more to do which, while they are all things I typically enjoy doing (gift shopping, Christmas cards, decorating, baking, going to parties), I'm far too exhausted to even think about any of it. Christmas is in two weeks and I haven't had it in me to even put up our tree. And Christmas cards....I love doing my Christmas cards! But I'm afraid it just may not happen this year, which makes me feel like the worst friend/daughter/great-niece/cousin/sister on the planet. Writing out a Christmas card may not sound like the most daunting task, but it is with MS fatigue. I worry that others might not realize that and take my lack of reaching out this holiday personally. But I suppose there's nothing I can do about those folks. I can only do what I can do.
In an attempt for some reprieve, I applied for an intermittent FMLA leave at work. This would grant me the opportunity to reduce my working hours as needed while still protecting my full-time employee status and thus allowing me to maintain our health insurance coverage.
Yesterday, this little gem arrived in the mail:
(click image to enlarge)Balls.
Well, there goes that. Needless to say, I was pretty upset by the notice that I do not qualify for FMLA at this time. Though surprisingly, my distress was short-lived. I'm extremely disappointed as I sincerely need some time to rest, recoup and take a little better care of myself, both physically and mentally. But I think I am at a point where I am just too exhausted to be upset; I don't have the energy to spare. And there isn't a damn thing I can do about it anyway. So while I wish circumstances could be different, all I can do at this point is continue to plug along, hope for the best and remember to acknowledge and count my blessings.
The fact is, despite my struggles and challenges, I have much to be grateful for. So much. I also believe that these challenges have been put before me for a reason and I hope to learn what I am meant to learn from them. And while it has been much less than ideal, I have so far been able to do what I have to do. I am grateful for the fact that this disease has not yet taken my ability to work away from me and is still granting me the ability to be a participant in life.
In the meantime, I will continue to do what I can and do my best, and pray for patience and understanding from those around me. I am confident I will devise a way to make participating in the things I love, in life, a little easier.
Sunday, July 25, 2010
Because Inquiring Minds Want To Know....
A brief update on the insurance saga…
First, I want to take the opportunity to express my deepest appreciation to all my friends and family who have given us their concern and support through this little health insurance crisis. It’s been a hellish month, but the phone calls and late night texting and emails of everyone checking in with us for situation updates and to simply inquire how we were doing have overwhelmed me with gratitude and provided much comfort. Thanks for caring. Thanks for listening. You’ve made more of a difference than you could possibly know.
That being said, I am pleased (and relieved as hell) to report that a solution has been found. I was able to plead my case to the higher ups at my company and they agreed to reinstate my full-time status (thus making me eligible for benefits), provided I began working full time hours immediately. This proved a bit of a challenge, but my manager and the manager at another location have helped me to obtain the necessary amount of hours required to maintain full-time status. For this, I am extremely grateful to both of them.
There was a small waiting period (while the company data base was updated), but I was able to enroll for benefits last week and I received confirmation on Friday that my enrollment was successful. Now we’re just waiting for our information to be updated with the insurance company and for our cards to arrive.
Whew.
I feel like I can breathe once more. Those three weeks of being un-insured were extraordinarily daunting; I had no idea if we would find any kind of resolution or be able to get coverage before our medications ran out. And what if we didn’t? So many unanswered questions, so many what if’s, so many people telling me not to get my hopes up; I was prepared for the worst.
Fortunately, things worked out. I feel very fortunate that my company was willing to take into account my many years of service and the contributions I have made and bend the rules to ensure both my continued employment and my well-being. These days, I think that's probably pretty rare.
Of course, this comes at the price of working full-time again. Going from 2 or 3 days a week to a full 5 has been a bit grueling; my body is just not able to take as much as it once did. But, we must do what we must do. I am just grateful that there is something I can do to ensure that Nick and I can continue to treat our conditions and receive the health care that we both need and deserve. We'll make this work.
In the meantime, we’re readjusting. Nick has once again risen gloriously to the challenge and has been extraordinarily helpful around the house and with meal preparations and running errands (grocery shopping, impromptu ice cream cravings, etc.). I am so grateful for both his willingness to step up and for his notable talents in the domestic arts. Thank you, my love. I love you so much!
As for me, I'm hanging in there. I’ve had to make some compromises with my exercise routine and social activities; I simply don’t have the energy to do it all. But I am adjusting and I try to reserve a little time and as much energy as I can for the things I enjoy and a little fun and socializing too; I refuse to let life become nothing but work and sleep. At the same time, I need to remember to be kind to myself and to say 'no' and rest my body when I need to. This is a difficult concept for me, one that I am continually working on.
I’m determined to keep swimming and keep smiling. I put as much effort as I can into remaining positive and counting my blessings each day. I know that even though this situation is kinda crap, we still have much to be grateful for.
First, I want to take the opportunity to express my deepest appreciation to all my friends and family who have given us their concern and support through this little health insurance crisis. It’s been a hellish month, but the phone calls and late night texting and emails of everyone checking in with us for situation updates and to simply inquire how we were doing have overwhelmed me with gratitude and provided much comfort. Thanks for caring. Thanks for listening. You’ve made more of a difference than you could possibly know.
That being said, I am pleased (and relieved as hell) to report that a solution has been found. I was able to plead my case to the higher ups at my company and they agreed to reinstate my full-time status (thus making me eligible for benefits), provided I began working full time hours immediately. This proved a bit of a challenge, but my manager and the manager at another location have helped me to obtain the necessary amount of hours required to maintain full-time status. For this, I am extremely grateful to both of them.
There was a small waiting period (while the company data base was updated), but I was able to enroll for benefits last week and I received confirmation on Friday that my enrollment was successful. Now we’re just waiting for our information to be updated with the insurance company and for our cards to arrive.
Whew.
I feel like I can breathe once more. Those three weeks of being un-insured were extraordinarily daunting; I had no idea if we would find any kind of resolution or be able to get coverage before our medications ran out. And what if we didn’t? So many unanswered questions, so many what if’s, so many people telling me not to get my hopes up; I was prepared for the worst.
Fortunately, things worked out. I feel very fortunate that my company was willing to take into account my many years of service and the contributions I have made and bend the rules to ensure both my continued employment and my well-being. These days, I think that's probably pretty rare.
Of course, this comes at the price of working full-time again. Going from 2 or 3 days a week to a full 5 has been a bit grueling; my body is just not able to take as much as it once did. But, we must do what we must do. I am just grateful that there is something I can do to ensure that Nick and I can continue to treat our conditions and receive the health care that we both need and deserve. We'll make this work.
In the meantime, we’re readjusting. Nick has once again risen gloriously to the challenge and has been extraordinarily helpful around the house and with meal preparations and running errands (grocery shopping, impromptu ice cream cravings, etc.). I am so grateful for both his willingness to step up and for his notable talents in the domestic arts. Thank you, my love. I love you so much!
As for me, I'm hanging in there. I’ve had to make some compromises with my exercise routine and social activities; I simply don’t have the energy to do it all. But I am adjusting and I try to reserve a little time and as much energy as I can for the things I enjoy and a little fun and socializing too; I refuse to let life become nothing but work and sleep. At the same time, I need to remember to be kind to myself and to say 'no' and rest my body when I need to. This is a difficult concept for me, one that I am continually working on.
I’m determined to keep swimming and keep smiling. I put as much effort as I can into remaining positive and counting my blessings each day. I know that even though this situation is kinda crap, we still have much to be grateful for.
Sunday, July 11, 2010
Part 9: Testing 1..2..3
For the first time in over a year and a half, I was feeling a sense of relief. Granted, it was small and buried under a ginormous pile of anxiety and trepidation, but I felt it all the same. I was reassured that I was finally in the hands of a capable and caring doctor and I believed that we were on the path to some answers. And so began the in-depth diagnostic testing.
First up, an MRI. An MRI (Magnetic Resonance Imaging) is sort of like an x-ray , but radio frequencies and electromagnetic fields are used rather than radiation. And unlike an x-ray, an MRI is able to produce detailed images of soft tissues (like the brain, spinal tissues, joint tissues, various organs, etc.). There’s some other science-y stuff about photons, neutrons and hydrogen atoms, and how the magnetic field and radio frequencies align them in such a way so as to create a detailed image. But who really cares about that? I just wanted to know how the heck this procedure was going affect me.
I had never undergone any sort of medical testing before, short of a throat swab or a blood draw, so this was entirely new ground for me. My only references for things like MRI’s were medical dramas like ER and House MD. Not the best reference for medical procedures, as nothing ever goes smoothly on these kinds of shows (because it wouldn’t be a drama unless someone exploded in an MRI machine, now would it?). Needless to say, I was having a fair bit of anxiety about the unknown of this procedure.
Dr. M. assured me the procedure was completely painless and without side effects. The contrast dye to be used was not associated with any adverse reactions, I wouldn’t have to fast and I would even be able to wear my own clothes as long as they had no metal components (no wire bra, zippers, snaps, etc.). She did warn that due to the narrow size of the scanning chamber, patients with claustrophobia are usually advised to take some kind of sedative prior to the procedure. Was I claustrophobic? I had no idea, but Dr. M. and I both agreed that a mild sedative certainly couldn’t hurt.
The MRI was scheduled for 6:00am on a Friday morning, December 15th. I took my big-ass Valium first thing upon waking and then proceeded to get dressed; Hello Kitty pajama pants seemed appropriate for the occasion. The left side of my body was still fairly numb and achy, but I had regained some use of my left hand and I was able to dress myself without help or a single expletive for the first time since Thanksgiving.
By the time we arrived at the imaging center, I could feel the Valium beginning to work its magic. I was still a little nervous, but I was feeling kinda light headed and tired….like I just wanted to lay down. Conveniently, there was a nice scanning table waiting for me.
After filling out the typical paper work, I was escorted back to the scanning room by a really sweet technician. I was surprised to find the scanning room to be much less clinical than I had expected; wood floors, wood cupboards and pretty striped wallpaper. The MRI machine didn’t look as nearly as scary as I had imagined either. The technician placed me down on the scanning table and covered me with a toasty warm blanket, tucking me in snug all around. She then told me she was going to cover my eyes. I expected a dark piece of cloth or maybe those things they give you in tanning beds. Instead she placed a lavender-scented herbal eye pack gently over my eyes. Wow, serious? This was quickly becoming less like Dr. House and more like preparation for a spa treatment.
The technician also placed noise-canceling headphones over my ears, which would help drown out the noise of the machine and also allow her to communicate with me. She also told me she could feed the radio through my headphones and asked which station I would like. X96, please!
The scanning table was slid into the scanning chamber and I was ready to go. A series of scans were done, the dye was injected and then the scans were performed again. It was pretty loud, despite the headphones, and the rhythmic pulsing noise from the machine made the table underneath me vibrate. There was nothing to do but lay there and chill, so that’s what I did. Every so often the technician would come through my headphones, checking that I was okay and letting me know the length of the next scan. I think I even nodded off at one point.
The entire procedure took just over an hour. It was a lot less frightening than I had imagined and more like a really boring portrait sitting at Olan Mills. And that’s pretty much what an MRI is, minus the annoying family members and cheesy backdrops. And before I knew it, I was done. Nick was waiting for me on the other side of the glass with the technician; he had watched me through the entire process. And even though I was feeling relatively calm throughout the procedure and surprised by the ease of it, it was still comforting to know that Nick was right there, watching every moment.
Four days later, we met with Dr. M to discuss the results of the MRI. She showed us the scans of
my brain and spinal cord, which at first glance were pretty cool looking, in my opinion. It’s not often one gets to see the inside of their skull. But then she pointed out the numerous white spots that appeared throughout the brain and spine and explained that these white spots were actually lesions, which is consistent with myelin damage (myelin being the protective sheath surrounding the nerves in the brain and spinal cord). When the myelin is damaged, this causes inflammation and injury to the nerve and those surrounding it. This, in turn, slows or blocks nerve signals that control muscle coordination, strength, sensation, hearing, pain receptors, etc. With a sad and apologetic expression on her face, she told me that this is very indicative of Multiple Sclerosis.
This didn’t come as a surprise to me; Dr. M. had told me she highly suspected MS from the very beginning. I was honestly feeling a bit relieved that she didn’t find a brain tumor or something, though at the same time I think I had slipped into a mild state of astonishment. As I sat there and looked at those images of my brain…my broken, damaged brain, all I can remember saying in response was “okay”.
Dr. M. went on to explain that approximately 30 lesions were found on my brain and an additional 6 on the spinal cord. The numerous areas of damage, and the areas of the brain and spine in which they were located, was a definitive explanation for the loss of function I had been experiencing and why they were occurring in certain areas of the body.
Dr. M. reiterated again that this was most consistent with Multiple Sclerosis, but she wanted to run some blood work and a lumbar puncture (spinal tap) to be completely thorough and rule out any question as to my condition.
Oh man, a spinal tap? *sigh* I appreciated her desire to be thorough and absolutely sure about my diagnosis, I really did. But a spinal tap? Ugh. I’d heard plenty of horror stories about spinal taps, and it didn’t seem likely this procedure would include any warm blankets or aroma-therapeutic components.
Once again, Dr. M. took the time to reassure me. She acknowledged that she’s heard the horror stories herself, but that she’s literally performed hundreds of these and has never once had a patient experience a problem. However, she also acknowledged that I’ve already been through a lot and I’ve been given an enormous amount to process. Christmas was less than a week away, and she suggested that I step away from this for a bit and wait until after the holidays to have the spinal tap done. I was inclined to agree. I sincerely appreciated her understanding of how difficult this was for me and her concern for my well-being.
I honestly didn’t know what to think at this point. It sounded fairly certain that I did, in fact, have Multiple Sclerosis. What that meant for me and my future, I didn’t know. And right then, I didn’t really want to know. I did not yet have a final diagnosis, and I was content to rest in a little bubble of denial and hope that perhaps the blood work and spinal tap would reveal some new evidence that would blow Dr. M.’s theory right out of the water.
Deep down, I knew this wasn’t true. Everything fit and now we had visual confirmation of my MS-addled brain. But I just wasn’t ready to face it. Not at Christmas. The best I could hope for was try and put this out of my mind and attempt to enjoy the holidays with my friends and family as best I could. Though with the knowledge I now possessed, a festive holiday spirit seemed less than likely.
The spinal tap was scheduled for the 17th of January, 2007.
*Note: No stunt brains were used in the making of this post. The images above are really me. Those are the actual images of my brain from the MRI discussed in this post. It really brings out my eyes, don't ya think?
First up, an MRI. An MRI (Magnetic Resonance Imaging) is sort of like an x-ray , but radio frequencies and electromagnetic fields are used rather than radiation. And unlike an x-ray, an MRI is able to produce detailed images of soft tissues (like the brain, spinal tissues, joint tissues, various organs, etc.). There’s some other science-y stuff about photons, neutrons and hydrogen atoms, and how the magnetic field and radio frequencies align them in such a way so as to create a detailed image. But who really cares about that? I just wanted to know how the heck this procedure was going affect me.
I had never undergone any sort of medical testing before, short of a throat swab or a blood draw, so this was entirely new ground for me. My only references for things like MRI’s were medical dramas like ER and House MD. Not the best reference for medical procedures, as nothing ever goes smoothly on these kinds of shows (because it wouldn’t be a drama unless someone exploded in an MRI machine, now would it?). Needless to say, I was having a fair bit of anxiety about the unknown of this procedure.
Dr. M. assured me the procedure was completely painless and without side effects. The contrast dye to be used was not associated with any adverse reactions, I wouldn’t have to fast and I would even be able to wear my own clothes as long as they had no metal components (no wire bra, zippers, snaps, etc.). She did warn that due to the narrow size of the scanning chamber, patients with claustrophobia are usually advised to take some kind of sedative prior to the procedure. Was I claustrophobic? I had no idea, but Dr. M. and I both agreed that a mild sedative certainly couldn’t hurt.
The MRI was scheduled for 6:00am on a Friday morning, December 15th. I took my big-ass Valium first thing upon waking and then proceeded to get dressed; Hello Kitty pajama pants seemed appropriate for the occasion. The left side of my body was still fairly numb and achy, but I had regained some use of my left hand and I was able to dress myself without help or a single expletive for the first time since Thanksgiving.
By the time we arrived at the imaging center, I could feel the Valium beginning to work its magic. I was still a little nervous, but I was feeling kinda light headed and tired….like I just wanted to lay down. Conveniently, there was a nice scanning table waiting for me.
After filling out the typical paper work, I was escorted back to the scanning room by a really sweet technician. I was surprised to find the scanning room to be much less clinical than I had expected; wood floors, wood cupboards and pretty striped wallpaper. The MRI machine didn’t look as nearly as scary as I had imagined either. The technician placed me down on the scanning table and covered me with a toasty warm blanket, tucking me in snug all around. She then told me she was going to cover my eyes. I expected a dark piece of cloth or maybe those things they give you in tanning beds. Instead she placed a lavender-scented herbal eye pack gently over my eyes. Wow, serious? This was quickly becoming less like Dr. House and more like preparation for a spa treatment.The technician also placed noise-canceling headphones over my ears, which would help drown out the noise of the machine and also allow her to communicate with me. She also told me she could feed the radio through my headphones and asked which station I would like. X96, please!
The scanning table was slid into the scanning chamber and I was ready to go. A series of scans were done, the dye was injected and then the scans were performed again. It was pretty loud, despite the headphones, and the rhythmic pulsing noise from the machine made the table underneath me vibrate. There was nothing to do but lay there and chill, so that’s what I did. Every so often the technician would come through my headphones, checking that I was okay and letting me know the length of the next scan. I think I even nodded off at one point.
The entire procedure took just over an hour. It was a lot less frightening than I had imagined and more like a really boring portrait sitting at Olan Mills. And that’s pretty much what an MRI is, minus the annoying family members and cheesy backdrops. And before I knew it, I was done. Nick was waiting for me on the other side of the glass with the technician; he had watched me through the entire process. And even though I was feeling relatively calm throughout the procedure and surprised by the ease of it, it was still comforting to know that Nick was right there, watching every moment.
Four days later, we met with Dr. M to discuss the results of the MRI. She showed us the scans of
my brain and spinal cord, which at first glance were pretty cool looking, in my opinion. It’s not often one gets to see the inside of their skull. But then she pointed out the numerous white spots that appeared throughout the brain and spine and explained that these white spots were actually lesions, which is consistent with myelin damage (myelin being the protective sheath surrounding the nerves in the brain and spinal cord). When the myelin is damaged, this causes inflammation and injury to the nerve and those surrounding it. This, in turn, slows or blocks nerve signals that control muscle coordination, strength, sensation, hearing, pain receptors, etc. With a sad and apologetic expression on her face, she told me that this is very indicative of Multiple Sclerosis.This didn’t come as a surprise to me; Dr. M. had told me she highly suspected MS from the very beginning. I was honestly feeling a bit relieved that she didn’t find a brain tumor or something, though at the same time I think I had slipped into a mild state of astonishment. As I sat there and looked at those images of my brain…my broken, damaged brain, all I can remember saying in response was “okay”.
Dr. M. went on to explain that approximately 30 lesions were found on my brain and an additional 6 on the spinal cord. The numerous areas of damage, and the areas of the brain and spine in which they were located, was a definitive explanation for the loss of function I had been experiencing and why they were occurring in certain areas of the body.Dr. M. reiterated again that this was most consistent with Multiple Sclerosis, but she wanted to run some blood work and a lumbar puncture (spinal tap) to be completely thorough and rule out any question as to my condition.
Oh man, a spinal tap? *sigh* I appreciated her desire to be thorough and absolutely sure about my diagnosis, I really did. But a spinal tap? Ugh. I’d heard plenty of horror stories about spinal taps, and it didn’t seem likely this procedure would include any warm blankets or aroma-therapeutic components.
Once again, Dr. M. took the time to reassure me. She acknowledged that she’s heard the horror stories herself, but that she’s literally performed hundreds of these and has never once had a patient experience a problem. However, she also acknowledged that I’ve already been through a lot and I’ve been given an enormous amount to process. Christmas was less than a week away, and she suggested that I step away from this for a bit and wait until after the holidays to have the spinal tap done. I was inclined to agree. I sincerely appreciated her understanding of how difficult this was for me and her concern for my well-being.
I honestly didn’t know what to think at this point. It sounded fairly certain that I did, in fact, have Multiple Sclerosis. What that meant for me and my future, I didn’t know. And right then, I didn’t really want to know. I did not yet have a final diagnosis, and I was content to rest in a little bubble of denial and hope that perhaps the blood work and spinal tap would reveal some new evidence that would blow Dr. M.’s theory right out of the water.
Deep down, I knew this wasn’t true. Everything fit and now we had visual confirmation of my MS-addled brain. But I just wasn’t ready to face it. Not at Christmas. The best I could hope for was try and put this out of my mind and attempt to enjoy the holidays with my friends and family as best I could. Though with the knowledge I now possessed, a festive holiday spirit seemed less than likely.
The spinal tap was scheduled for the 17th of January, 2007.
*Note: No stunt brains were used in the making of this post. The images above are really me. Those are the actual images of my brain from the MRI discussed in this post. It really brings out my eyes, don't ya think?
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