My latest MRI of the brain shows that the radiation treatment is doing what it is supposed to be doing... the lesion is shrinking! I am not quite one year post treatment.
I do have new areas of "hyper intensity," which I am told is simply irritation from radiation. Why new irritation would show up almost a year later is something I do not understand. What remains very clear is that the brain is remarkable in its ability to heal itself, although it sure takes its time doing it! While I continue to have odd symptoms, I am much more stable than I've been in a long time.
Thank you, Lord, for a favorable report.
So with all of this good news, why am I so downcast? I imagine the sheer emotional roller coaster ride of the last 14 months is enough to induce depression. How 4 little bleeds can change a person's whole life is amazing--- in an amazingly horrible sense. Unfortunately, my current emotional status brings back lots of negative memories from my college days.
I started having serious headaches when I was in high school. By the time I was in college, there would be times I could not get out of bed. I would pop multiple Excedrin and attempt to shut all the light out of the room. The bouts of pain lasted several hours, usually. I never sought a doctor's advice for the headaches; I was a pretty stressed out college kid, so everyone wrote my symptoms off as stress. I just figured I was an emotional, anxious person.
I managed to get through college and started working. I was not the model employee, due to multiple illnesses and a tendency to melt down with conflict. I had a history of making emotional and impulsive decisions.
In my twenties, I recall many episodes of feeling the "ground move under me." My depth perception was off, but I couldn't figure out how. Again, I wrote all these symptoms off as being stress. I was in my twenties, trying to survive on a small income--- life was hard. I poured myself into my work (aerobics fitness instructor) and my social life.
Often times, I would not sleep. I could not sleep. I heard things... I didn't realize I was having auditory hallucinations. I just figured my mind was starting to slip, again due to stress. Sometimes when I could sleep, I would wake up with bruises on my arms and legs. Now, I understand I was probably having seizures. All I knew was that I was tired all of the time.
Last thing I remembered, I was at Tucson Medical Center with tubes down my nose. The medical team first thought to pump my stomach in case I had overdosed. Soon, they found out that I had in fact had a grand mal seizure due to a hemorrhaging cavernous angioma in my temporal/parietal lobe. The doctors also spotted another lesion in occipital lobe. The doctors put me on seizure medications, trying to find the one I reacted to the least.
Well, if you have never heard this before, listen now: having a massive seizure messes with your brain in a pretty dramatic way. And chances are, I had been having small bleeds (and nocturnal seizures?) for years without knowing it. At this point, I lost my footing. I was told to take seizure meds and to get back to life. But how? I wasn't a believer at that time in my life, so I didn't have any sort of a spiritual foundation. I was falling head long into major depression. I finally sought help.
In addition to behavioral therapy, I took Prozac, Lithium, and some other seizure medication. Whatever the drug combo I was placed on, it was not magic. The depression stayed with me and got worse. So as not to upset my family reading this, I won't elaborate. Let's just say it was as bad as bad gets.
Through some divine intervention and helpful medical advice, I was able to enter the Telemetry Unit at UCLA Veteran's Hospital in California. I don't even recall where it was. All I remember was being in this unit for several days, having my head hooked up to wires. While I did not have a seizure while hooked up, the staff recommended that I stop all medications. They felt I was toxic on something, and I had developed hypothyroidism. I left the hospital with no plan. No one ever told me to follow up with a neurologist or anyone.
After a few months, the headaches mysteriously stopped. I was able to get back to work and get back to life. I certainly had a lot to sort out, and by this time my family thought I was pretty nutty.
It is interested that at that time, only CT scans were available. If MRIs had been available, I'm sure that the doctors would have spotted the multiple lesions littering my brain. At last count, I have between a minimum of 16 lesions.
From about the age of 27 to age 51, I had very few symptoms with the exception of intermittent vertigo. The brain stem bleeds and then the supratentorial bleeds came as a total shock.
It is also amazing that only until recently have physicians begun learning about cavernous angiomas. I realize that my story is unfortunately common. Most patients with angiomas go for a long time with improper diagnosis and inappropriate (or nonexistent) treatment. Most, if not all patients, endure cycles of depression, anxiety, or post traumatic stress disorder. While majority of angioma carriers live without any symptoms, many experience debilitating and painful lives.
I am so thankful to groups like Angioma Alliance that are drawing attention to the disease. We now know angiomas can be sporadic or familial. There are now a handful of physicians who better understand this disease. I am extremely pleased to say I have finally found a neurologist who understands cavernous angioma--- thank you to Jeremy Payne, M.D.
So what have I done with all of this? My biggest challenge has been to forgive myself and to forgive others who may have judged me. Having a physical disease that manifests itself as a psychological issue creates all kinds of baggage and hardship. For me, turning to my Maker and asking for wisdom has been an ongoing and critical need.
My second biggest challenge has been physical. The bleeds did leave me with some neurological impairment; the steroids left me with about 20 extra pounds. Let's just say trying to recover from stroke is a full-time job in and of itself. Additionally, my husband and I have had to make some major household changes so that healing becomes more of a priority. All of those details are for another post.
I firmly believe everything happens for a reason. I cling to that belief every day--- trying to stay patient, and learning to train myself to endure what God has allowed. I thought I was a fairly mature believer when I got sick, but time has shown me that I had a long way to go. Suffering has a way of showing you who you really are; it shines a light on all your flaws and weaknesses. While it is difficult to surrender your body to the Lord, but it is even harder to surrender your emotions to Him. I have had to learn how to allow the Lord to comfort me, and how to totally trust Him in everything. It is not a lesson that can be learned quickly. I believe the struggles will make me stronger--- if I just don't give up.
I do have new areas of "hyper intensity," which I am told is simply irritation from radiation. Why new irritation would show up almost a year later is something I do not understand. What remains very clear is that the brain is remarkable in its ability to heal itself, although it sure takes its time doing it! While I continue to have odd symptoms, I am much more stable than I've been in a long time.
Thank you, Lord, for a favorable report.
So with all of this good news, why am I so downcast? I imagine the sheer emotional roller coaster ride of the last 14 months is enough to induce depression. How 4 little bleeds can change a person's whole life is amazing--- in an amazingly horrible sense. Unfortunately, my current emotional status brings back lots of negative memories from my college days.
I started having serious headaches when I was in high school. By the time I was in college, there would be times I could not get out of bed. I would pop multiple Excedrin and attempt to shut all the light out of the room. The bouts of pain lasted several hours, usually. I never sought a doctor's advice for the headaches; I was a pretty stressed out college kid, so everyone wrote my symptoms off as stress. I just figured I was an emotional, anxious person.
I managed to get through college and started working. I was not the model employee, due to multiple illnesses and a tendency to melt down with conflict. I had a history of making emotional and impulsive decisions.
In my twenties, I recall many episodes of feeling the "ground move under me." My depth perception was off, but I couldn't figure out how. Again, I wrote all these symptoms off as being stress. I was in my twenties, trying to survive on a small income--- life was hard. I poured myself into my work (aerobics fitness instructor) and my social life.
Often times, I would not sleep. I could not sleep. I heard things... I didn't realize I was having auditory hallucinations. I just figured my mind was starting to slip, again due to stress. Sometimes when I could sleep, I would wake up with bruises on my arms and legs. Now, I understand I was probably having seizures. All I knew was that I was tired all of the time.
Last thing I remembered, I was at Tucson Medical Center with tubes down my nose. The medical team first thought to pump my stomach in case I had overdosed. Soon, they found out that I had in fact had a grand mal seizure due to a hemorrhaging cavernous angioma in my temporal/parietal lobe. The doctors also spotted another lesion in occipital lobe. The doctors put me on seizure medications, trying to find the one I reacted to the least.
Well, if you have never heard this before, listen now: having a massive seizure messes with your brain in a pretty dramatic way. And chances are, I had been having small bleeds (and nocturnal seizures?) for years without knowing it. At this point, I lost my footing. I was told to take seizure meds and to get back to life. But how? I wasn't a believer at that time in my life, so I didn't have any sort of a spiritual foundation. I was falling head long into major depression. I finally sought help.
In addition to behavioral therapy, I took Prozac, Lithium, and some other seizure medication. Whatever the drug combo I was placed on, it was not magic. The depression stayed with me and got worse. So as not to upset my family reading this, I won't elaborate. Let's just say it was as bad as bad gets.
Through some divine intervention and helpful medical advice, I was able to enter the Telemetry Unit at UCLA Veteran's Hospital in California. I don't even recall where it was. All I remember was being in this unit for several days, having my head hooked up to wires. While I did not have a seizure while hooked up, the staff recommended that I stop all medications. They felt I was toxic on something, and I had developed hypothyroidism. I left the hospital with no plan. No one ever told me to follow up with a neurologist or anyone.
After a few months, the headaches mysteriously stopped. I was able to get back to work and get back to life. I certainly had a lot to sort out, and by this time my family thought I was pretty nutty.
It is interested that at that time, only CT scans were available. If MRIs had been available, I'm sure that the doctors would have spotted the multiple lesions littering my brain. At last count, I have between a minimum of 16 lesions.
From about the age of 27 to age 51, I had very few symptoms with the exception of intermittent vertigo. The brain stem bleeds and then the supratentorial bleeds came as a total shock.
It is also amazing that only until recently have physicians begun learning about cavernous angiomas. I realize that my story is unfortunately common. Most patients with angiomas go for a long time with improper diagnosis and inappropriate (or nonexistent) treatment. Most, if not all patients, endure cycles of depression, anxiety, or post traumatic stress disorder. While majority of angioma carriers live without any symptoms, many experience debilitating and painful lives.
I am so thankful to groups like Angioma Alliance that are drawing attention to the disease. We now know angiomas can be sporadic or familial. There are now a handful of physicians who better understand this disease. I am extremely pleased to say I have finally found a neurologist who understands cavernous angioma--- thank you to Jeremy Payne, M.D.
So what have I done with all of this? My biggest challenge has been to forgive myself and to forgive others who may have judged me. Having a physical disease that manifests itself as a psychological issue creates all kinds of baggage and hardship. For me, turning to my Maker and asking for wisdom has been an ongoing and critical need.
My second biggest challenge has been physical. The bleeds did leave me with some neurological impairment; the steroids left me with about 20 extra pounds. Let's just say trying to recover from stroke is a full-time job in and of itself. Additionally, my husband and I have had to make some major household changes so that healing becomes more of a priority. All of those details are for another post.
I firmly believe everything happens for a reason. I cling to that belief every day--- trying to stay patient, and learning to train myself to endure what God has allowed. I thought I was a fairly mature believer when I got sick, but time has shown me that I had a long way to go. Suffering has a way of showing you who you really are; it shines a light on all your flaws and weaknesses. While it is difficult to surrender your body to the Lord, but it is even harder to surrender your emotions to Him. I have had to learn how to allow the Lord to comfort me, and how to totally trust Him in everything. It is not a lesson that can be learned quickly. I believe the struggles will make me stronger--- if I just don't give up.
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