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.
Sunday, July 25, 2010
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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