Adjusting...Readjusting
We are in a really weird place these days. I can't exactly put my finger on it so I guess I've chalked it up to the path of chronic illness. I have attended classes on handling chronic illness, read books, scoured articles but I'm not sure that living a life like this can be taught. You gotta feel your way through it, often tripping up, getting lost and caught up on snags you weren't expecting.
Chronic illness is all about stages, kind of like grief; in fact, I think it could be considered a cousin to grief, a very close cousin. It's such an emotional process and that's what makes dealing with a life of chronic illness so hard, it's not textbook. You can prepare all you want but until you are living in the midst of chronic problems and health issues you will have no idea what to expect or how you will handle each new setback.
It's a bit like performing CPR. Hopefully, you haven't had to do that yet in your life but I have, twice on Shelbie. I have taken many CPR classes. Like the back of my hand, I knew how many chest compressions to each breath and the rescusitation dolls were easy and familiar for me. The first time I had to actually use my knowledge, I froze. I was terrified and all of sudden, I was in a foreign land. Everything felt different on a human being than a plastic dummy and no one prepared me for the rush of adrenaline that would make me dizzy and disoriented.
That's how I feel these days, dizzy and disoriented. It's been such a tumultuous year, the wind has been knocked from my sail. Sometimes in one week, I can go from crisis to isolation to anger to reconstructing my life to depression and then renewal but only for minutes sometimes, until the next crisis hits. Time becomes distorted and survival is the main concern. There is no expectable future and that makes it hard to plan anything, even a few hours from now. It's hard to work with all these emotional distractions.
In some ways, we've established new routines over the past couple of weeks as both the boys are doing better now that their medications are both working better for their inflammatory bowel disease. Like Humpty Dumpty, the King's men and all his horses too have been working round the clock to put us all back together. Despite this period we are in, I can feel the next crisis arriving and I hate that feeling.
This week, we give the IVIG one more try. The whole process is going to be different on Wednesday. They had to change up the pre meds since they are complicating side effects and putting her in a precarious position. I'm not sure what we will use or what to expect. We were unable to get a different brand of plasma or a different concentration so we will try to infuse over 8-10 hours rather than 4-6 hours. The doctor's hope, and mine, is that the slower infusion rate will eliminate the horrible side effects like Vasculitis. This may be our last attempt, especially if things deteriorate like they have the last two months. We have to get a handle on this adenovirus. Immune compromised people have died from this virus and if we can't eliminate it all together then we have to at least keep it knocked down but so far, the IVIG isn't working as well as it use to.
I don't know what to expect, or what to plan on this week. The only thing I do know how to do anymore is rely on God and have hope that this time will be better. I have faith that we will find solutions but I know that doesn't mean it won't be without some trial and error, tears and frustration because that's just the way it is in the world of chronic illness.
Chronic illness is all about stages, kind of like grief; in fact, I think it could be considered a cousin to grief, a very close cousin. It's such an emotional process and that's what makes dealing with a life of chronic illness so hard, it's not textbook. You can prepare all you want but until you are living in the midst of chronic problems and health issues you will have no idea what to expect or how you will handle each new setback.
It's a bit like performing CPR. Hopefully, you haven't had to do that yet in your life but I have, twice on Shelbie. I have taken many CPR classes. Like the back of my hand, I knew how many chest compressions to each breath and the rescusitation dolls were easy and familiar for me. The first time I had to actually use my knowledge, I froze. I was terrified and all of sudden, I was in a foreign land. Everything felt different on a human being than a plastic dummy and no one prepared me for the rush of adrenaline that would make me dizzy and disoriented.
That's how I feel these days, dizzy and disoriented. It's been such a tumultuous year, the wind has been knocked from my sail. Sometimes in one week, I can go from crisis to isolation to anger to reconstructing my life to depression and then renewal but only for minutes sometimes, until the next crisis hits. Time becomes distorted and survival is the main concern. There is no expectable future and that makes it hard to plan anything, even a few hours from now. It's hard to work with all these emotional distractions.
In some ways, we've established new routines over the past couple of weeks as both the boys are doing better now that their medications are both working better for their inflammatory bowel disease. Like Humpty Dumpty, the King's men and all his horses too have been working round the clock to put us all back together. Despite this period we are in, I can feel the next crisis arriving and I hate that feeling.
This week, we give the IVIG one more try. The whole process is going to be different on Wednesday. They had to change up the pre meds since they are complicating side effects and putting her in a precarious position. I'm not sure what we will use or what to expect. We were unable to get a different brand of plasma or a different concentration so we will try to infuse over 8-10 hours rather than 4-6 hours. The doctor's hope, and mine, is that the slower infusion rate will eliminate the horrible side effects like Vasculitis. This may be our last attempt, especially if things deteriorate like they have the last two months. We have to get a handle on this adenovirus. Immune compromised people have died from this virus and if we can't eliminate it all together then we have to at least keep it knocked down but so far, the IVIG isn't working as well as it use to.
I don't know what to expect, or what to plan on this week. The only thing I do know how to do anymore is rely on God and have hope that this time will be better. I have faith that we will find solutions but I know that doesn't mean it won't be without some trial and error, tears and frustration because that's just the way it is in the world of chronic illness.
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