My dear daughter had her 6 month post-radiosurgery MRI yesterday morning. The angiomas are unchanged from the last scan; I assume that is good news! We also remain thankful that she has not suffered any major symptoms or neurologic impairment as a result of the brain stem lesions.
The most difficult part of my daughter's journey has been the chronic fatigue and head aches. I know most of you angioma sufferers contend with both of these issues. The fatigue dogs you; you can't do what you used to do, and nobody understands why you constantly refuse invitations because of the fatigue. You realize you aren't capable of you past schedule--- and at 18, that's a tough pill to swallow. And the headaches? Nothing alleviates them. Thankfully, the pain is not physically debilitating. But the pain is enough to bring a halt to most major activity, and it certainly puts a big damper on your energetic plans for your day. This is not the kind of life any of us had hoped for our daughter.
Most of us angioma patients find a way to manage these discomforts, even if that means just to "suffer in silence." But I think it may be harder (or at least different) for young people--- people who are just trying to manage life after high school-- to accept the challenges chronic disease brings. But of course, this is more than just a chronic disease: It is a genetic disease.
I would go as far to say that the majority of people tend to downplay CCM/KRIT 1. I suppose it is easy to downplay the disease if you are one of the fortunate ones who never develops any symptoms to the disease. But my daughter and I (and countless other people on Angioma Alliance and a couple of private Facebook groups) can tell you, this disease is not just an annoyance. We have headaches, all types of seizures, odd neurological sensations (pins and needles, numbness, tingling, burning), depression, anxiety, and an array of physical/neurological symptoms ranging from awkwardness to paralysis. Additionally, many people were misdiagnosed at the start of their disease. Some were told that they had MS; others were told all the symptoms were psychological in nature. In other cases, a person has to change his or her entire way of life to accommodate an unpleasant, chronic disease. Many have children who suffer with unrelenting seizures. Some parents have had children die. Some sufferers opt not to have children so that they do not expose another generation to to the disease. I don't say all of this for empathy. Rather, I say this to gently remind you that if you know someone with a chronic "invisible" disease, please don't minimize their feelings or experiences.
Many of the responses and questions I see posted on angioma groups have to do with people just wondering if someone else shares their experiences. Do others endure the symptoms they have? More often than not, when a sufferer is simply heard, and their feelings are listened to and validated--- they receive a true blessing. If you know someone who is in pain or deals with chronic disease, do them a favor and just listen. Don't tell them you understand if you don't; don't interrupt them and tell them of how hard your day was. People just want to be heard. They want to know someone cares.
I know those of us who suffer may seem so selfish and and self-absorbed. In fact, many of us are self-absorbed because the pain of suffering is so acute or interferes with every aspect of life. You may be tempted to just give up on a friend with chronic disease. Perhaps he or she doesn't seem to be making much progress... but I encourage you not to give up. As with any major life change, chronic illness has cycles. We must all struggle with the inevitable ups and downs, depression, and anger. We have to learn how to live all over again--- what is your new normal? What are your major triggers? What alleviates your symptoms? When do you call the doctor and when do you say nothing? But the most critical stage of recover is finding peace with your Maker. Knowing that you were given a disease to contend with brings inevitable questions to your mind. Why do I have this disease? Why does the Lord allow this? What can I learn from this? How can find new strength and determination when I feel like giving up?
If you struggle with a chronic disease, what do you find helps you?
The most difficult part of my daughter's journey has been the chronic fatigue and head aches. I know most of you angioma sufferers contend with both of these issues. The fatigue dogs you; you can't do what you used to do, and nobody understands why you constantly refuse invitations because of the fatigue. You realize you aren't capable of you past schedule--- and at 18, that's a tough pill to swallow. And the headaches? Nothing alleviates them. Thankfully, the pain is not physically debilitating. But the pain is enough to bring a halt to most major activity, and it certainly puts a big damper on your energetic plans for your day. This is not the kind of life any of us had hoped for our daughter.
Most of us angioma patients find a way to manage these discomforts, even if that means just to "suffer in silence." But I think it may be harder (or at least different) for young people--- people who are just trying to manage life after high school-- to accept the challenges chronic disease brings. But of course, this is more than just a chronic disease: It is a genetic disease.
I would go as far to say that the majority of people tend to downplay CCM/KRIT 1. I suppose it is easy to downplay the disease if you are one of the fortunate ones who never develops any symptoms to the disease. But my daughter and I (and countless other people on Angioma Alliance and a couple of private Facebook groups) can tell you, this disease is not just an annoyance. We have headaches, all types of seizures, odd neurological sensations (pins and needles, numbness, tingling, burning), depression, anxiety, and an array of physical/neurological symptoms ranging from awkwardness to paralysis. Additionally, many people were misdiagnosed at the start of their disease. Some were told that they had MS; others were told all the symptoms were psychological in nature. In other cases, a person has to change his or her entire way of life to accommodate an unpleasant, chronic disease. Many have children who suffer with unrelenting seizures. Some parents have had children die. Some sufferers opt not to have children so that they do not expose another generation to to the disease. I don't say all of this for empathy. Rather, I say this to gently remind you that if you know someone with a chronic "invisible" disease, please don't minimize their feelings or experiences.
Many of the responses and questions I see posted on angioma groups have to do with people just wondering if someone else shares their experiences. Do others endure the symptoms they have? More often than not, when a sufferer is simply heard, and their feelings are listened to and validated--- they receive a true blessing. If you know someone who is in pain or deals with chronic disease, do them a favor and just listen. Don't tell them you understand if you don't; don't interrupt them and tell them of how hard your day was. People just want to be heard. They want to know someone cares.
I know those of us who suffer may seem so selfish and and self-absorbed. In fact, many of us are self-absorbed because the pain of suffering is so acute or interferes with every aspect of life. You may be tempted to just give up on a friend with chronic disease. Perhaps he or she doesn't seem to be making much progress... but I encourage you not to give up. As with any major life change, chronic illness has cycles. We must all struggle with the inevitable ups and downs, depression, and anger. We have to learn how to live all over again--- what is your new normal? What are your major triggers? What alleviates your symptoms? When do you call the doctor and when do you say nothing? But the most critical stage of recover is finding peace with your Maker. Knowing that you were given a disease to contend with brings inevitable questions to your mind. Why do I have this disease? Why does the Lord allow this? What can I learn from this? How can find new strength and determination when I feel like giving up?
If you struggle with a chronic disease, what do you find helps you?
