I haven't been good about updating our blog. Mostly because I just haven't been up to it.
Last Spring, a medication that had been working to treat my pseudotumor was discontinued by the manufacturer. It just wasn't profitable enough for them to continue making it despite the fact that many people had found success in it's use. Yes, big business and health care are terrible partners.
Since then, I have had almost a continuous spinal headache. This is not a migraine. I've appreciated hearing from people who have had a spinal headache because they are so empathetic. Thankfully, Darren has had one, so he knows the level of pain that I live with. Yep, it's pretty bad and it does not end.
Things have changed with my headaches as well. Panic attacks, which I am told are normal when in anticipation of great pain and cabin fever have been the worst. It feels very familiar to when I was first diagnosed and had no answers. This has significantly changed my life and to be quite honest, I'm pretty sick of it.
As well, I have been experiencing abdominal pain, which I also had when I was first diagnosed, so perhaps it's related. Anyhoo, I've had every test under the sun and all have been negative, which is positive. It's better than it was in the Spring, but still annoying.
Everything I've accomplished in the last few months has been in spite of pain, which is pretty remarkable when I look at it in hindsight, but pretty unbearable when I'm actually doing it. Please know that if I haven't been able to attend something or visit you that it's not because I haven't wanted to, but because I physically haven't been able to. I'll be updating our blog with recent events, but not many of them have been very easy for me. Living with an invisible chronic illness can be pretty rough on it's own, but by far the worst part is feeling like life is marching on by without you. As well, people seem to think your just fine or cured if you're "caught" experiencing life. Please remember as you read our updates that I've done all of these things in spite of great pain and that I'm always wishing I could do more.
Prayers are appreciated if that's your thing. If it's not, do it anyway. I need them.
Thanks!
Betsi
Last Spring, a medication that had been working to treat my pseudotumor was discontinued by the manufacturer. It just wasn't profitable enough for them to continue making it despite the fact that many people had found success in it's use. Yes, big business and health care are terrible partners.
Since then, I have had almost a continuous spinal headache. This is not a migraine. I've appreciated hearing from people who have had a spinal headache because they are so empathetic. Thankfully, Darren has had one, so he knows the level of pain that I live with. Yep, it's pretty bad and it does not end.
Things have changed with my headaches as well. Panic attacks, which I am told are normal when in anticipation of great pain and cabin fever have been the worst. It feels very familiar to when I was first diagnosed and had no answers. This has significantly changed my life and to be quite honest, I'm pretty sick of it.
As well, I have been experiencing abdominal pain, which I also had when I was first diagnosed, so perhaps it's related. Anyhoo, I've had every test under the sun and all have been negative, which is positive. It's better than it was in the Spring, but still annoying.
Everything I've accomplished in the last few months has been in spite of pain, which is pretty remarkable when I look at it in hindsight, but pretty unbearable when I'm actually doing it. Please know that if I haven't been able to attend something or visit you that it's not because I haven't wanted to, but because I physically haven't been able to. I'll be updating our blog with recent events, but not many of them have been very easy for me. Living with an invisible chronic illness can be pretty rough on it's own, but by far the worst part is feeling like life is marching on by without you. As well, people seem to think your just fine or cured if you're "caught" experiencing life. Please remember as you read our updates that I've done all of these things in spite of great pain and that I'm always wishing I could do more.
Prayers are appreciated if that's your thing. If it's not, do it anyway. I need them.
Thanks!
Betsi
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