Forgive me for any gripes that may come out of this, but I fully believe in transparency. And I even more so believe in the fact that I need more of it. This past month has not been easy for us as a family. God never promised us an easy life. Almost 4 weeks ago now, I called my doctor in the middle of the workday to ask if he had my test results. He did. He said I pretty definitively have systemic lupus. I didn't cry then. I told him I already knew. It was over ten years in the making. He said it was very serious and I needed to be under the care of a doctor. I could start taking steroids that night and go through a few more rounds of tests to see how various parts of me were functioning. I actually felt pretty numb about the whole idea of it. I knew I needed to go home for the day and I did. And that's when I cried. A strange mixture of tears of joy at finally knowing and tears for the fear of what my life was about to become.
My biggest surprise since learning of my disease has been other people's reactions to it. I must do a really good job of appearing to be ok. But please know that my body is not ok. I'm not sure why it has decided to attack itself (I have antibodies to my own DNA) and I likely will never figure that out. I know I have some subtle signs of the disease that most people probably think are just odd little things about me. Like I have to wear gloves at work when I review data because otherwise my hands go numb and painful. And that "cute flushing" in my face (or so I have been told) is actually a burning face rash called a malar rash. I am learning more about the little things that actually are strong signs of lupus and it's pretty amazing. So far I know that I have inflammation in two layers of my eye, nerve damage, and the signs mentioned above. On a positive note, I do know that my kidneys are functioning well (I woke Stephen to tell him that).
A lot has come out of this diagnosis. Mostly in the form of money out of my pocket. Well, at least it is coming out of the flexible spending account. I like to think I have pretty good health insurance, but with a $40 copay to see a specialist-I can't even imagine what people without insurance have to deal with. More importantly though, I am being taken seriously. I cannot begin to explain how this has affected my state of mind. I think back a lot to a long list of strange symptoms that I wrote for my general doctor when I was in college. The doctor thought I either needed to stop being so paranoid or start taking an antidepressant. And this is why lupus patients go undiagnosed for so long.
I feel a little like a drug addict at this point. I mix liquids in my kitchen at night with Crystal Light in order to combat their awful taste. My day has become a lot more centered around food. Steroids make you really hungry. I am on a taper now, still at the high dose. So I have to eat a lot for breakfast otherwise I think the steroids start eating my stomach. At least that's what it feels like. Then I need to eat dinner before 7:30 so that I can take my nighttime medication on an empty stomach. This has not been easy to fit in with a small window of time from when we get home from work to when Benjamin needs to go to bed. I have to know that the side effects of the steroids are worth the benefits. I suppose my organs are more important than my appearance. I am not looking forward to the physical signs of long-term steroid use. But at least if I gain any weight or develop a slightly rounded face, I can blame it on the drugs. Even if I become slightly more rounded, at least my hair has stopped falling out at the drain-clogging rate it was going pre-steroids.
I have felt great relief in knowing that I'm not crazy, but I am greatly sorrowed by what I know this disease has taken from me and from our family. It is my hope that I would know sooner rather than later how God intends to use this positively. There are certain people I have been able to relate to in the ways of disease that I would never have been able to without this. I've learned how to react to other people's struggles and how to not react. And above all else, I have learned how God feels when we choose to ignore Him. This experience has left me feeling perhaps more isolated than I have ever felt in my entire life. That's probably part of the point. My life stopped, but everyone else's went on. And now I have one place to turn for the support that I need. Is this the way prayer should look?
Mostly through this, I have had to learn how to keep my mouth shut. I have had a lot of strong reactions in my head to this news and it's been hard to keep it in check (and remember that the steroids are likely not helping my moods any). All of a sudden I am incredibly angry with things that are really not worth being angry with. I know people don't mean anything with their comments and complaints. I do request that people stop telling me that I will be ok. I may not be ok. And that is something I need to come to terms with in order to accept this. I think overall, we need to be more supportive of allowing people to deal with their pain. It has become too easy to say something positive to a grieving person than to hold them while they are grieving. And I know I am more guilty of that than anyone else. If I ever tell you to let me know what you need, you probably should or you might end up getting something you don't need from now on.
There have been a few moments of humor with this diagnosis, but mostly there have been a lot of tears and a lot of moments for personal reflection. Several nights now I have gone into Benjamin's room to hold him for hours when I should be sleeping. I wonder what this disease will mean for him in his life. I hope that during flares he doesn't have to tell people that mommy can't come participate because she doesn't feel well. The doctor said I will likely need to learn my limits and learn to sit on the sidelines when I'm not well. My life will likely depend on learning that. Right now I have some degree of pain in lifting him because of the swelling in my wrists. I can deal with that. I don't know if I could deal with not being able to lift him at all. These have been the hardest thoughts to have and the hardest thoughts to stay away from. I know it's probably not helpful right now, but I wonder if I will be able to have any more kids. I am extremely lucky to have Benjamin but I don't know if I could mentally prepare myself to push that luck. I don't know if I'm prepared to deal with a high risk pregnancy either, though I know plenty of others have. Will I be able to adopt? I hope so. But I know being considered "disabled" can make that harder too.
My biggest surprise since learning of my disease has been other people's reactions to it. I must do a really good job of appearing to be ok. But please know that my body is not ok. I'm not sure why it has decided to attack itself (I have antibodies to my own DNA) and I likely will never figure that out. I know I have some subtle signs of the disease that most people probably think are just odd little things about me. Like I have to wear gloves at work when I review data because otherwise my hands go numb and painful. And that "cute flushing" in my face (or so I have been told) is actually a burning face rash called a malar rash. I am learning more about the little things that actually are strong signs of lupus and it's pretty amazing. So far I know that I have inflammation in two layers of my eye, nerve damage, and the signs mentioned above. On a positive note, I do know that my kidneys are functioning well (I woke Stephen to tell him that).
A lot has come out of this diagnosis. Mostly in the form of money out of my pocket. Well, at least it is coming out of the flexible spending account. I like to think I have pretty good health insurance, but with a $40 copay to see a specialist-I can't even imagine what people without insurance have to deal with. More importantly though, I am being taken seriously. I cannot begin to explain how this has affected my state of mind. I think back a lot to a long list of strange symptoms that I wrote for my general doctor when I was in college. The doctor thought I either needed to stop being so paranoid or start taking an antidepressant. And this is why lupus patients go undiagnosed for so long.
I feel a little like a drug addict at this point. I mix liquids in my kitchen at night with Crystal Light in order to combat their awful taste. My day has become a lot more centered around food. Steroids make you really hungry. I am on a taper now, still at the high dose. So I have to eat a lot for breakfast otherwise I think the steroids start eating my stomach. At least that's what it feels like. Then I need to eat dinner before 7:30 so that I can take my nighttime medication on an empty stomach. This has not been easy to fit in with a small window of time from when we get home from work to when Benjamin needs to go to bed. I have to know that the side effects of the steroids are worth the benefits. I suppose my organs are more important than my appearance. I am not looking forward to the physical signs of long-term steroid use. But at least if I gain any weight or develop a slightly rounded face, I can blame it on the drugs. Even if I become slightly more rounded, at least my hair has stopped falling out at the drain-clogging rate it was going pre-steroids.
I have felt great relief in knowing that I'm not crazy, but I am greatly sorrowed by what I know this disease has taken from me and from our family. It is my hope that I would know sooner rather than later how God intends to use this positively. There are certain people I have been able to relate to in the ways of disease that I would never have been able to without this. I've learned how to react to other people's struggles and how to not react. And above all else, I have learned how God feels when we choose to ignore Him. This experience has left me feeling perhaps more isolated than I have ever felt in my entire life. That's probably part of the point. My life stopped, but everyone else's went on. And now I have one place to turn for the support that I need. Is this the way prayer should look?
Mostly through this, I have had to learn how to keep my mouth shut. I have had a lot of strong reactions in my head to this news and it's been hard to keep it in check (and remember that the steroids are likely not helping my moods any). All of a sudden I am incredibly angry with things that are really not worth being angry with. I know people don't mean anything with their comments and complaints. I do request that people stop telling me that I will be ok. I may not be ok. And that is something I need to come to terms with in order to accept this. I think overall, we need to be more supportive of allowing people to deal with their pain. It has become too easy to say something positive to a grieving person than to hold them while they are grieving. And I know I am more guilty of that than anyone else. If I ever tell you to let me know what you need, you probably should or you might end up getting something you don't need from now on.
There have been a few moments of humor with this diagnosis, but mostly there have been a lot of tears and a lot of moments for personal reflection. Several nights now I have gone into Benjamin's room to hold him for hours when I should be sleeping. I wonder what this disease will mean for him in his life. I hope that during flares he doesn't have to tell people that mommy can't come participate because she doesn't feel well. The doctor said I will likely need to learn my limits and learn to sit on the sidelines when I'm not well. My life will likely depend on learning that. Right now I have some degree of pain in lifting him because of the swelling in my wrists. I can deal with that. I don't know if I could deal with not being able to lift him at all. These have been the hardest thoughts to have and the hardest thoughts to stay away from. I know it's probably not helpful right now, but I wonder if I will be able to have any more kids. I am extremely lucky to have Benjamin but I don't know if I could mentally prepare myself to push that luck. I don't know if I'm prepared to deal with a high risk pregnancy either, though I know plenty of others have. Will I be able to adopt? I hope so. But I know being considered "disabled" can make that harder too.
At the end of all of this, I ask for a little bit of grace. And a little bit of humor. And a lot of support. I will likely not become a lupus fundraising allstar but I may, at some point, have to start wearing a purple bracelet and soliciting funds for my upcoming Lupus Walks.
1 comment:
Julie I can't thank you enough for your candor. I appreciate your honesty and the insight into how the diagnosis is affecting you - and your family. We're praying for you every day!
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