Hope revisited
As many of you know, I have Lupus. Usually most people have no idea what that is or they only know of a friend of a friend that had it. So I'll take a few minutes to explain the basics. Normally our bodies make antibodies to fight off foreign invaders like infections. Antibodies are BEAUTIFUL things! Without them we would all die very quickly. Well, when you have Lupus your body makes antibodies against itself. Basically you develop an immune reaction against yourself, your own cells, organs, etc. And so any time that you get your immune system in an uproar, not only will your immune system be fighting off the other infection but you will be doing damage to your own body as well. Infections, stress, going in the sun (your immune system kicks in to protect your skin). This is why I am perpetually a beautiful shade of "porcelain". LOL Oh who am I kidding? My kids say I'm so white that I could glow in the dark. haha Darren calls me human bleach. :)
No one has ever been able to figure out where it comes from. They know it's not contagious. They think it might be hereditary...but still can't prove it. No one else in my family has it. I have my own theories, but of course I can't prove them. I am notorious for being way too hard on myself. I am my own worst enemy alot of the time. Well, I think my body just picked up the hint. That's a terribly oversimplified version of my theory, but you get my point.
As far as symptoms go.... most of the time it just makes me extremely tired. Fatigue is a big issue with me, so is achey joints. You have all of the pain of arthritis ("arthralgia") without the crippling effects of arthritis. I've also had some heart problems because of it. Pericarditis, congestive heart failure. I've been blessed and protected to not ever have any kidney involvement....if someone is going to die from lupus, it will usually be because of kidney problems.
I was diagnosed in 1992 right after my 19th birthday. Courtney was only a couple of months old. Originally they thought that I had a DVT (blood clot in my leg) brought on from my birthcontrol pills (I was having horrible pain in my leg/knee). By the time they figured out that it was really because I had lupus and let me go back on birthcontrol Courtney was five months old and I was pregnant with Darren. (OOPS! lol) My lupus was the worst it had ever been (and until now has ever been) right then. They ended up having to induce my labor a little early with Darren because I was "flaring" so bad that they needed to get the baby out so they could get me some medicine. After that they "suggested" I not have kids. Well, in my typical stubborn/pollyanna style I went and had two more and they are perfect. :)
Over the years I have for the most part been in remission. A few flares here and there but nothing too terrible. The last year has been tough though. And recently I've had a really hard time. As most of you know, last month I had mono. I had a really rough time of it...was really sick. My CHF (congestive heart failure) came back a little bit too. I knew that my lupus was flaring but I had no idea how bad. My dr. drew my blood and when my labs came back my ANA was really, really high. ANA stands for "antinuclear antibodies"....antibodies against your own nucleus and dna. The way that they figure out the level is that they take a drop of your blood and dilute it. Then they see if there are any of your antibodies in that diluted drop. They do that over and over again until they don't find anymore antibodies. The more antibodies, the more times they'll have to dilute it. In most people this level is zero or very low (most people don't have these and they won't have to dilute it at all). When I was diagnosed my level was three hundred and something. Last year when I was REALLY sick it was in the seven hundreds. Well, a few weeks ago when my blood was drawn my ANA was 1280. Very high. I knew this and my doctor knew this. I just don't think we realized how high it really was.
The one night at work I was talking to one of the night owl doctors who come through. I typically don't have a very high opinion of doctors...I think most of them are lazy & arrogant. But this doctor is BRILLIANT. He is very generous and never misses a teaching opportunity. Every time I see him I learn something. He challenges me and makes me think. And he knows his stuff. I trust him and respect him.... a pretty big deal for me to say about a doctor! lol He is a renal doctor (kidney) and so he deals with end-stage lupus patients all the time after they've gone into kidney failure. I asked him as a lupus patient what I should do to be safeguarding my kidneys, etc. And he was telling me. Then he mentioned monitoring my ana closely. I told him I had just gotten it checked the week before and it was high. He asked to see my labs and when I showed them to him he just stared at me for a moment. The mood of the moment suddenly turned from light conversation to heavy and somber. My friend Don was sitting with me (kind of like we were sitting at the feet of the master learning all we could) and when Dr. Miclat just stopped and stared gravely at me the seriousness of that moment wasn't lost on anyone. Don looked from the Dr. to me and I could see a tear in his eyes. Dr Miclat said "do you realize how high this is? What are they doing about this?" When I told him that I had gone back on my prednisone but that nothing big was being done about it he interrupted me and dropped the bombshell that "you have very active lupus and if you want to safeguard your life and your organs I would strongly recommend 'pulse therapy using cytoxan' right away. (chemotherapy) At least once a month for six months IV at the Ireland Cancer Center." I felt like I had gotten punched in the gut. What? Are you serious? I was trying so hard to appear strong like it was no big deal....but it was written all over my face. He wrote it on a piece of paper and put his hand on my back and said "go home and look it up on the internet, then find a good rheumatologist to handle this for you." I thanked him and excused myself and started crying on my way down the hall. I can't be that sick. It can't be that serious. Don caught up with me. Normally I welcome comforting and hugs but not when I feel the need to be strong. Comforting and hugs only make it worse....they make me break down and cry. So I'm doing the "I'm fine, I just have to use the ladies room" routine. He knows me better than that of course (that's why I call him 'big daddy' don....he's like a father to me). But he gave me my space and let me get my composure. As the night went on however I started noticing something amazingly touching. I kept catching Don standing or sitting quietly next to me with his hand on me (my back, my arm, etc.).... it occurred to me that my friend was praying for me. My dear, dear friend....a friend who's battling cancer, working overtime, facing his own problems had immediately become a prayer warrior for me. Even now the tears are flowing when I think of it. The selflessness. The caring heart. The lifting up of someone you love when they are lost in the moment and can't lift themselves up (By the way, he's the one that pulled me from the waves of my depression last year too). The embodiment of Christ's quiet, gentle, unselfish love. It leaves me speechless. As we walked out to our cars the next morning I no longer had to be "strong". I wasn't in nurse mode anymore taking care of others needs. I no longer had to be professional. Now I was just Veronica. Usually strong, but sometimes not. And right now I was sad and scared. I stood in a cold February parking lot and let my friend hug me. And I cried a thousand tears. I then kissed him on the cheek and thanked him for being such a good friend and I drove home. I never did mention to him that I knew he was praying for me.... he would never want that kind of attention so he'd deny he did it anyways.
That was last Thursday night/Friday morning and since then I have talked to a few of my friends about it. And since then I have started moving out of the initial shock and into my typical "Veronica mode". lol I'm not sure if that mode is more strength or stupidity but whichever....that's where I am now. I just cannot believe that I am that sick! I refuse to believe that things will not work out just fine! I believe in happy endings and I have been through WAY TOO MUCH to let something like THIS kick my butt! I'm praying for miracles. My God is way bigger and stronger than THIS. And he has brought me through way bigger and badder giants than THIS. He has plans for me. I feel it. I know it. There's not a cell in my being that isn't aware of a bigger plan for me. It is not my destiny to be taken down by this....at least not now. So there HAS TO BE another explanation. I keep saying that I feel my labs had to be that elevated because of the mono. They HAD TO BE. I AM NOT GOING TO ACCEPT THAT I AM THAT SICK. If it turns out that I AM that sick.... then you know what? BRING IT ON! Chemo is no match for me! I'll take the chemo, I'll get well and then I'll move on to doing what I'm supposed to be doing.
I've said it a million times and I'll say it another million before I'm gone...... I believe in happy endings..... and if I'm not meeting the devil head-on then I must be going the same direction! So this is just the newest round of missiles and arrows that Satan can find to sling at me. Game on! BECAUSE I'M NOT TELLING MY GOD HOW BIG MY STORM IS............I'M TELLING THE STORM HOW BIG MY GOD IS!!!!!!!!!!
No one has ever been able to figure out where it comes from. They know it's not contagious. They think it might be hereditary...but still can't prove it. No one else in my family has it. I have my own theories, but of course I can't prove them. I am notorious for being way too hard on myself. I am my own worst enemy alot of the time. Well, I think my body just picked up the hint. That's a terribly oversimplified version of my theory, but you get my point.
As far as symptoms go.... most of the time it just makes me extremely tired. Fatigue is a big issue with me, so is achey joints. You have all of the pain of arthritis ("arthralgia") without the crippling effects of arthritis. I've also had some heart problems because of it. Pericarditis, congestive heart failure. I've been blessed and protected to not ever have any kidney involvement....if someone is going to die from lupus, it will usually be because of kidney problems.
I was diagnosed in 1992 right after my 19th birthday. Courtney was only a couple of months old. Originally they thought that I had a DVT (blood clot in my leg) brought on from my birthcontrol pills (I was having horrible pain in my leg/knee). By the time they figured out that it was really because I had lupus and let me go back on birthcontrol Courtney was five months old and I was pregnant with Darren. (OOPS! lol) My lupus was the worst it had ever been (and until now has ever been) right then. They ended up having to induce my labor a little early with Darren because I was "flaring" so bad that they needed to get the baby out so they could get me some medicine. After that they "suggested" I not have kids. Well, in my typical stubborn/pollyanna style I went and had two more and they are perfect. :)
Over the years I have for the most part been in remission. A few flares here and there but nothing too terrible. The last year has been tough though. And recently I've had a really hard time. As most of you know, last month I had mono. I had a really rough time of it...was really sick. My CHF (congestive heart failure) came back a little bit too. I knew that my lupus was flaring but I had no idea how bad. My dr. drew my blood and when my labs came back my ANA was really, really high. ANA stands for "antinuclear antibodies"....antibodies against your own nucleus and dna. The way that they figure out the level is that they take a drop of your blood and dilute it. Then they see if there are any of your antibodies in that diluted drop. They do that over and over again until they don't find anymore antibodies. The more antibodies, the more times they'll have to dilute it. In most people this level is zero or very low (most people don't have these and they won't have to dilute it at all). When I was diagnosed my level was three hundred and something. Last year when I was REALLY sick it was in the seven hundreds. Well, a few weeks ago when my blood was drawn my ANA was 1280. Very high. I knew this and my doctor knew this. I just don't think we realized how high it really was.
The one night at work I was talking to one of the night owl doctors who come through. I typically don't have a very high opinion of doctors...I think most of them are lazy & arrogant. But this doctor is BRILLIANT. He is very generous and never misses a teaching opportunity. Every time I see him I learn something. He challenges me and makes me think. And he knows his stuff. I trust him and respect him.... a pretty big deal for me to say about a doctor! lol He is a renal doctor (kidney) and so he deals with end-stage lupus patients all the time after they've gone into kidney failure. I asked him as a lupus patient what I should do to be safeguarding my kidneys, etc. And he was telling me. Then he mentioned monitoring my ana closely. I told him I had just gotten it checked the week before and it was high. He asked to see my labs and when I showed them to him he just stared at me for a moment. The mood of the moment suddenly turned from light conversation to heavy and somber. My friend Don was sitting with me (kind of like we were sitting at the feet of the master learning all we could) and when Dr. Miclat just stopped and stared gravely at me the seriousness of that moment wasn't lost on anyone. Don looked from the Dr. to me and I could see a tear in his eyes. Dr Miclat said "do you realize how high this is? What are they doing about this?" When I told him that I had gone back on my prednisone but that nothing big was being done about it he interrupted me and dropped the bombshell that "you have very active lupus and if you want to safeguard your life and your organs I would strongly recommend 'pulse therapy using cytoxan' right away. (chemotherapy) At least once a month for six months IV at the Ireland Cancer Center." I felt like I had gotten punched in the gut. What? Are you serious? I was trying so hard to appear strong like it was no big deal....but it was written all over my face. He wrote it on a piece of paper and put his hand on my back and said "go home and look it up on the internet, then find a good rheumatologist to handle this for you." I thanked him and excused myself and started crying on my way down the hall. I can't be that sick. It can't be that serious. Don caught up with me. Normally I welcome comforting and hugs but not when I feel the need to be strong. Comforting and hugs only make it worse....they make me break down and cry. So I'm doing the "I'm fine, I just have to use the ladies room" routine. He knows me better than that of course (that's why I call him 'big daddy' don....he's like a father to me). But he gave me my space and let me get my composure. As the night went on however I started noticing something amazingly touching. I kept catching Don standing or sitting quietly next to me with his hand on me (my back, my arm, etc.).... it occurred to me that my friend was praying for me. My dear, dear friend....a friend who's battling cancer, working overtime, facing his own problems had immediately become a prayer warrior for me. Even now the tears are flowing when I think of it. The selflessness. The caring heart. The lifting up of someone you love when they are lost in the moment and can't lift themselves up (By the way, he's the one that pulled me from the waves of my depression last year too). The embodiment of Christ's quiet, gentle, unselfish love. It leaves me speechless. As we walked out to our cars the next morning I no longer had to be "strong". I wasn't in nurse mode anymore taking care of others needs. I no longer had to be professional. Now I was just Veronica. Usually strong, but sometimes not. And right now I was sad and scared. I stood in a cold February parking lot and let my friend hug me. And I cried a thousand tears. I then kissed him on the cheek and thanked him for being such a good friend and I drove home. I never did mention to him that I knew he was praying for me.... he would never want that kind of attention so he'd deny he did it anyways.
That was last Thursday night/Friday morning and since then I have talked to a few of my friends about it. And since then I have started moving out of the initial shock and into my typical "Veronica mode". lol I'm not sure if that mode is more strength or stupidity but whichever....that's where I am now. I just cannot believe that I am that sick! I refuse to believe that things will not work out just fine! I believe in happy endings and I have been through WAY TOO MUCH to let something like THIS kick my butt! I'm praying for miracles. My God is way bigger and stronger than THIS. And he has brought me through way bigger and badder giants than THIS. He has plans for me. I feel it. I know it. There's not a cell in my being that isn't aware of a bigger plan for me. It is not my destiny to be taken down by this....at least not now. So there HAS TO BE another explanation. I keep saying that I feel my labs had to be that elevated because of the mono. They HAD TO BE. I AM NOT GOING TO ACCEPT THAT I AM THAT SICK. If it turns out that I AM that sick.... then you know what? BRING IT ON! Chemo is no match for me! I'll take the chemo, I'll get well and then I'll move on to doing what I'm supposed to be doing.
I've said it a million times and I'll say it another million before I'm gone...... I believe in happy endings..... and if I'm not meeting the devil head-on then I must be going the same direction! So this is just the newest round of missiles and arrows that Satan can find to sling at me. Game on! BECAUSE I'M NOT TELLING MY GOD HOW BIG MY STORM IS............I'M TELLING THE STORM HOW BIG MY GOD IS!!!!!!!!!!
Comments