It's unlikely that most people need help seeing the positive aspects of their lives at the beginning of a difficult situation. Just because a situation is difficult doesn't mean I have forgotten all that I have been blessed with and that I have become completely ungrateful for everything in my life. There will always be something better or worse than my struggles. I am perhaps even more aware of the blessed life that I lead now-I have my diagnosis and I have access to medical care. I have not yet determined the absolute point in suffering, but I do know that suffering causes me to better see God's sovereignty. I can get really overcome with the "nobody understands" bit, but realizing that statement is only true on the human level makes all the difference. I know that if someone wasn't in control of this stuff, it would be nearly impossible to see any point to it. That knowledge is certainly something I have been blessed with. And something I have watched numerous other people be blessed with. There is a small part of me seeing that maybe this is where I will be able to use this illness for a better purpose. I am pressing towards figuring out the "rejoicing in suffering" business, but for now I can dwell on knowing that it has a purpose.
Friday, April 30, 2010
Tuesday, April 27, 2010
Stud Muffin showcases his moves Monday, April 19, 2010
Lupus and Me
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.
Thursday, April 15, 2010
First Haircut
Saturday of Easter weekend demanded a milestone event for Benjamin. It was long overdue, but I finally decided to cave in to the first haircut. We arrived at the barber in the morning, only to be told that he no longer does first haircuts. I explained that I was Ed's daughter and Bobby's sister and he immediately took on the task for us. As a side note, this barber has been cutting my dad's and brother's hair for over 15 years. He even came to our house after my dad's accident to cut his hair for him when he was still wheelchair-bound. He proceeded to let Stephen (and the rest of the customers) know what a great family I come from. I agree.
In any case, back to the point-the haircut. Benjamin did fairly well with the experience, though there were definitely a few shaky moments with a lot of tears. In the end I was forced to see Benjamin as a little boy now-no longer an infant or a baby. He will always be my little baby, but he really is a lot bigger and more grown up now.
Easter
Easter this year coincided with perhaps one of the toughest personal struggles we have endured. Several of our planned events didn't work out as intended, but we had a wonderful holiday. I am even more reminded now that our God does know what we are going through and has experienced every last bit (and more) of any of the sufferings we could experience. This knowledge is far more important than any Easter bunny (or even making it out of the house on Easter Sunday).
We did manage to have a great deal of fun with Benjamin this year dyeing Easter eggs. I'm not sure he understood the delicate nature of the egg, but most of them turned out unscathed. He also had an adorable Easter outfit, but only ended up wearing it for about an hour.
Bathtime
Benjamin is absolutely in love with bathtime and I can't help but smile every time he is playing in there. When he hears the water start running upstairs his face lights up. He even gets upset when we don't put him straight in and instead walk past the bathroom in order to undress him in his room. He has, on numerous occasions, attempted to climb into the bathtub with his clothes and/or diaper still on. He has recently taken to soaking the entire bathroom with his splashing. The joys of childhood.
Wednesday, April 7, 2010
Snow and Swings
Benjamin's love of the outdoors is becoming more apparent as the days pass. As a fully mobile toddler now, he often goes and gets his shoes, brings them to us, and motions towards his feet. He also likes to walk to the front door, try to open it, and say "bye-bye." As often as I can now, I like to take him to the park or at least take him over to the baby swings in our neighborhood. Too bad he likely inherited our ghostly complexions and the sun may prove to be an enemy to us throughout his childhood. We may, quite possibly, keep the baby sunscreen industry afloat.
The photos above are fairly recent, but Benjamin also had a lot of fun in our huge snowstorm earlier this year. We had a large mountain of snow on our front porch and Benjamin made good use of his snowsuit. It's hard to believe we were housebound by the snow just two months ago and now it's 85 degrees.
The photos above are fairly recent, but Benjamin also had a lot of fun in our huge snowstorm earlier this year. We had a large mountain of snow on our front porch and Benjamin made good use of his snowsuit. It's hard to believe we were housebound by the snow just two months ago and now it's 85 degrees.
Monday, April 5, 2010
Please Touch Museum
In order to give Benjamin some fun after his horrendous surgery and illness, my friend Karen and I decided to take him to the Please Touch Museum in Philadelphia. The ulterior motive was allowing Stephen to paint the living room. A few people questioned whether he would be old enough, but it turned out perfect. Benjamin thoroughly enjoyed the experience and I am amazed at how much he can do at such a young age. He is a man who knows which areas he wants to explore.
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