I tried the home infusion thing again today. It was a mess. I reacted and the nurse was threatening me with an epi pen. It sucked eggs and I feel really bad and painful.
I have to go to the infusion room and continue to do the infusions (IVIG) on a monthly basis.
Sum total: I have to do a lot of things to keep myself healthy.
Getting healthier is going to take work. I need to go to the acupuncturist. I need to walk each day.
I need to be available for my family and not strung out and sick and calling for help every five minutes.
All of this probably means that work is not gonna work for me at this point.
I'll be damned if I'm gonna bail on this semester. It is going and I am doing ok. It just sucks a lot from me and I don't have a lot to spare.
What will we do without my income?
Who will I be without my job?
Why am I thinking of all this when tomorrow is another day and I have work and doctors on the menu?
Can I sort myself out?
Yes. I have to believe that yes... is the answer. If the answer is no then there is no God and I can hang it up.
That is unacceptable.
God has shown me over and over that there is a power greater than us or me. God will provide.
I do not say that blindly or in the hopes something "magic" will occur. I have to grasp the hand that is coming over the cliff to break my fall. I have to climb back up under my own power.
As for how that all works, I have no idea. It does not matter that I have a graduate degree in theology or have thought deeply about it all. It is... Mystery.
I need some smoke and mirrors just now. I need some awe and wonder. I need to put my arm around that hand, grasp firmly and start climbing.
That's all.
Clinging
You won't drown.
Wednesday, September 21, 2011
Friday, September 9, 2011
Wow. A new post so soon!
Today is a red letter day. By that I mean that God smacked me again and beamed me over the head. That is how my relationship with the Divine is: I get thunked on the head a lot. Here's the story: I have a cold. I overslept my doctor's appointment and generally felt cruddy this morning. So, I decided to go with it for once. I have had a slow day. Samuel brought a friend home from school and Hannah Beth went home with another girl. I've just been hanging out.
So, the phone rang and it was the United healthcare nurse calling again. They call me once a month to check on me and once I got over my general suspicion that the insurance industry could have anything positive to say, I started talking with them. It is never the same lady but is always a registered nurse. I asked her some questions today and she said something that had not sunk in before. What I have, the overlap connective tissue disease: It's lupus. I have not given it that name. Naming it helps somehow. It means owning it, I guess. It isn't classic lupus so I had not given it that name. I was still telling myself that it was something less serious and that I did not have anything "like that." But, you know, I do. It feels like coming out of the closet with something. I have lupus. There. I said it.
It makes me feel somehow empowered. I can name it and own it and ultimately it will not speak for me. I am more than a disease. I am a person with a disease that is sometimes bad and can kill you earlier than you want to be killed. But, it does not define me. It does not have to. Somehow there is a difference. Somehow God created me and I am diseased and imperfect and I'm here anyway. And I will suffer. I will make decisions other people don't have to make. But it's okay.
Hi, I'm Katie and I have lupus. And I'm a mom. And a teacher. And a writer. And a damned good lover and wife. I am so much more than the disease can name.
I won't ever get back to "normal" whatever that was. I will always have this disease. But I'll be damned if it will have me.
With God on my side and the knowledge that I am my own best friend and cheerleader, I think I can do this thing. At least, I can do it today. And that's enough. That is, after all, all I have. Or you have. Or any of us have. I am Katie with lupus but still Katie. And nothing can change that.
So, the phone rang and it was the United healthcare nurse calling again. They call me once a month to check on me and once I got over my general suspicion that the insurance industry could have anything positive to say, I started talking with them. It is never the same lady but is always a registered nurse. I asked her some questions today and she said something that had not sunk in before. What I have, the overlap connective tissue disease: It's lupus. I have not given it that name. Naming it helps somehow. It means owning it, I guess. It isn't classic lupus so I had not given it that name. I was still telling myself that it was something less serious and that I did not have anything "like that." But, you know, I do. It feels like coming out of the closet with something. I have lupus. There. I said it.
It makes me feel somehow empowered. I can name it and own it and ultimately it will not speak for me. I am more than a disease. I am a person with a disease that is sometimes bad and can kill you earlier than you want to be killed. But, it does not define me. It does not have to. Somehow there is a difference. Somehow God created me and I am diseased and imperfect and I'm here anyway. And I will suffer. I will make decisions other people don't have to make. But it's okay.
Hi, I'm Katie and I have lupus. And I'm a mom. And a teacher. And a writer. And a damned good lover and wife. I am so much more than the disease can name.
I won't ever get back to "normal" whatever that was. I will always have this disease. But I'll be damned if it will have me.
With God on my side and the knowledge that I am my own best friend and cheerleader, I think I can do this thing. At least, I can do it today. And that's enough. That is, after all, all I have. Or you have. Or any of us have. I am Katie with lupus but still Katie. And nothing can change that.
Friday, September 2, 2011
I'm still here
It has been a long time since I posted. I am having difficulty seeing due to an eye medication so this may come out with strange errors. This is a strange time. A lot of things are changing both within me and without. I am back at work part time and the kids are in school. Our week days are full of just getting to school and work and
back and doing the homework, cooking the healthy meal etc. The challenges of daily life are mine again. I am no longer too sick to handle them. I am, it seems, fragile. This was my first week back at work and I tried to be Super at everything and just wore myself out. I have to keep comparing back to where I was a few months ago. I was non functional. My existence was so small and I did not take care of anything. It is scary going back to a semblance of what I was before. I have to be smart about it. I think I'm learning.
I don't want anyone to think I am all "fixed' and demand more of me. I feel like that is the case sometimes. In reality that is probably me projecting what I expect of myself.
Yesterday and today I felt my body flare in pain and swelling. A few months ago, it would have ended in the emergency room. I'm not going there. I think I have the tools, the medication and the understanding how to avoid going to a place where they really can't help me anyway.
I am very nervous about starting home infusions again. I have to do it and hope it will succeed but it was such a disaster last time.
All I can say is that this disease and really taken a large bit out of me. I have been going once a week to the urologist for "installations." Basically I get catheterized and they pour meds in my bladder to calm it down.
Yesterday I started having spasms there again and today's treatment was very painful. I also make weekly trips to the acupuncturist. I continue to work on my diet. I am joining the local fitness center and will go there because it is open 24 hours a day. I think I can carve some time in that kind o f availability.
I have learned that things don'e really get easier; they just become more familiar.That is certainly true of death. I do not cry as much for my mom anymore. The pain is still horrible and aching but I am used to it. And I don't miss what all she had to go through those last two years. I miss the active mom; the one who mothered me as her baby, always.
My daughter is getting all grown up and clearly becoming her own woman. I am proud but scared!
Samuel is a continual challenge. He may have a will of iron and want to everything his way. But, he will not win. I will teach him. He is, though, a soft and gentle boy and I am proud of that.
Stan is my partner but I seldom really see him. He just works and trudges around caring for everyone and his mother too. I worry about him.
But, I can't. I cannot change anything or anyone. All I can do is effect change in myself. I can learn to live with grace in the body I am in. It may not be ideal or function like I wish it would but it is the only one I have.
I've go to take care of me first so I can meet the needs of my loved ones and my students.
It will be done.
back and doing the homework, cooking the healthy meal etc. The challenges of daily life are mine again. I am no longer too sick to handle them. I am, it seems, fragile. This was my first week back at work and I tried to be Super at everything and just wore myself out. I have to keep comparing back to where I was a few months ago. I was non functional. My existence was so small and I did not take care of anything. It is scary going back to a semblance of what I was before. I have to be smart about it. I think I'm learning.
I don't want anyone to think I am all "fixed' and demand more of me. I feel like that is the case sometimes. In reality that is probably me projecting what I expect of myself.
Yesterday and today I felt my body flare in pain and swelling. A few months ago, it would have ended in the emergency room. I'm not going there. I think I have the tools, the medication and the understanding how to avoid going to a place where they really can't help me anyway.
I am very nervous about starting home infusions again. I have to do it and hope it will succeed but it was such a disaster last time.
All I can say is that this disease and really taken a large bit out of me. I have been going once a week to the urologist for "installations." Basically I get catheterized and they pour meds in my bladder to calm it down.
Yesterday I started having spasms there again and today's treatment was very painful. I also make weekly trips to the acupuncturist. I continue to work on my diet. I am joining the local fitness center and will go there because it is open 24 hours a day. I think I can carve some time in that kind o f availability.
I have learned that things don'e really get easier; they just become more familiar.That is certainly true of death. I do not cry as much for my mom anymore. The pain is still horrible and aching but I am used to it. And I don't miss what all she had to go through those last two years. I miss the active mom; the one who mothered me as her baby, always.
My daughter is getting all grown up and clearly becoming her own woman. I am proud but scared!
Samuel is a continual challenge. He may have a will of iron and want to everything his way. But, he will not win. I will teach him. He is, though, a soft and gentle boy and I am proud of that.
Stan is my partner but I seldom really see him. He just works and trudges around caring for everyone and his mother too. I worry about him.
But, I can't. I cannot change anything or anyone. All I can do is effect change in myself. I can learn to live with grace in the body I am in. It may not be ideal or function like I wish it would but it is the only one I have.
I've go to take care of me first so I can meet the needs of my loved ones and my students.
It will be done.
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