GRATEFUL
Today my heart is filled with gratitude. I am so very grateful to have such an amazing and loving partner by my side. I am so very grateful to have such an amazing group of family and friends to love and support me in the days ahead. I am so grateful for the opportunity to grow through new challenges.
Last night was a little difficult. I was pretty sick. It almost reminded me how "other people" described the end of parties in college with the room spinning and your head in a bucket. (but i wouldn't know anything about that LOL)
The doctor decided to do an oral taper of the steroids to help relieve my acute symptoms. The preliminary results of my spinal fluid test came back today and it was positive for a type of protein that indicates something called demyelination. The neurologist says that this along with the abnormalities on my brain scans and resulting physical symptoms is enough to support a diagnosis of clinically isolated syndrome.
So phase one, investigation and identification, is complete. I will be transferred to a rehabilitation hospital tomorrow to begin physical therapy. I will soon be meeting with my outpatient neurologist to begin discussing long-term treatment and symptom management.
I have been reading a great deal recently and have found that a significant portion of people with clinically isolated syndrome never experience another "flare up". With early aggressive treatment the chances of a second attack are significanly reduced. The disease is essentially dormant. Of course these medications are not without their own risks and side effects, but they will hopefully allow me to continue to live a normal life.
Now on to phase two, healing and recovery. I know that therapy will be difficult, but I am ready. I plan to continue to update this blog to keep you up to date on my progress. Again, thank you for all of your love, concerns and prayers. And thank you for allowing me to express myself and share my feelings with you.
If you know me at all you know I hate to lose. So watch me work!
Today my heart is filled with gratitude. I am so very grateful to have such an amazing and loving partner by my side. I am so very grateful to have such an amazing group of family and friends to love and support me in the days ahead. I am so grateful for the opportunity to grow through new challenges.
Last night was a little difficult. I was pretty sick. It almost reminded me how "other people" described the end of parties in college with the room spinning and your head in a bucket. (but i wouldn't know anything about that LOL)
The doctor decided to do an oral taper of the steroids to help relieve my acute symptoms. The preliminary results of my spinal fluid test came back today and it was positive for a type of protein that indicates something called demyelination. The neurologist says that this along with the abnormalities on my brain scans and resulting physical symptoms is enough to support a diagnosis of clinically isolated syndrome.
So phase one, investigation and identification, is complete. I will be transferred to a rehabilitation hospital tomorrow to begin physical therapy. I will soon be meeting with my outpatient neurologist to begin discussing long-term treatment and symptom management.
I have been reading a great deal recently and have found that a significant portion of people with clinically isolated syndrome never experience another "flare up". With early aggressive treatment the chances of a second attack are significanly reduced. The disease is essentially dormant. Of course these medications are not without their own risks and side effects, but they will hopefully allow me to continue to live a normal life.
Now on to phase two, healing and recovery. I know that therapy will be difficult, but I am ready. I plan to continue to update this blog to keep you up to date on my progress. Again, thank you for all of your love, concerns and prayers. And thank you for allowing me to express myself and share my feelings with you.
If you know me at all you know I hate to lose. So watch me work!
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