Reclaiming My Body
Since my last post, things have improved. I may even get to go home soon. I've been here just over 6 weeks but hopefully, not much longer. I saw the doctor today and it looks like my blood counts are improving on their own. A couple more stable days and she said they would feel comfortable letting me leave. Aside from needing to rebuild my strength, I feel ready.
I've been here so long, the seasons have actually changed. I showed up in summer, wearing a maxi dress and flip flops and I'll be leaving in the fall, with a taste of Calgary winter in between, and need to have warm clothes brought to me. Thankfully I've had a nice view to see it all happen.
For almost my entire stay, I've had something called a Central Venous Catheter in my neck. I'm what they call a "hard poke" so trying to get an IV line started in my arm or hand is extremely difficult. This is the why I get so bruised. This CVC goes in through the big vein in the neck and ends up in the vein that returns blood to the heart. It has 3 ports which made giving me numerous IV fluids at a time much easier. They can also draw blood from it so I didn't need to get poked daily for blood work. I've actually had to have two. They're only good for 30 days so it went from one side to the other after the first one became expired. It wasn't a great experience getting them but it made things less stressful and less painful for me.
The fluid I retained is almost all gone. Once my body had mostly recovered from all of the trauma of some of the procedures I went through, they started giving me IV diuretics. At first, I was averaging a loss of about 3kgs a day. I'm currently 2kgs below my starting weight. For whatever reason though, the fluid wouldn't leave my belly and still hasn't. The doctors think it might be Lupus related. Because the pressure of having so much fluid in my abdomen was still making it hard to breathe and move, they finally decided to do a procedure called a paracentesis or abdominal tap. This is where they make an incision in your abdominal wall, insert a catheter and drain the excess fluid. After an ultrasound showing 10cm of fluid between my abdominal wall and my organs, the resident doctor was confident they could get at least two litres out. Procedure was started, two litres removed and he felt comfortable removing another. After 3 litres, the flow was still strong so he went for a fourth. All said and done, he removed 4.8 litres of fluid (which looks like urine but isn't) and likely could have gotten more but there can be complications with taking too much so he stopped. I instantly felt different. I could breathe better. Walking was easier. I wished they would have done it sooner.
I have been through the ringer during this admission. I've had many invasive procedures, I've had many procedures that weren't invasive but felt torturous given the state that my body was in, I've had holes cut into me, fluids drained into me, fluids drained out of me and been at the absolute mercy of medically trained strangers. This has been hard on me emotionally and physically, but the mental aspect has been the most difficult. Going through two years of fighting to get stronger and healthier only to end up back at your weakest so many times takes a huge toll. A person can only be so positive for so long. I almost lost my sparkle.
Having an invisible illness, whether mental or physical, isn't easy. People look at you and can't understand how you could possibly feel so terrible when you look like everyone else. I may look fine, I can put on makeup, nice clothes and make myself presentable but my body might be feeling like it's been run over by a freight train. You can't see that but I can feel it. For people suffering, faking it becomes the norm so other people don't feel uncomfortable.
Sharing my story is a way to bring awareness to my disease as well as reiterating to be kind to everyone because you don't know what kind of struggles they may be going through. To those of you who have been following my story and have reached out and sent well wishes, you have no idea how much that means to me. Your sparkle reignited my sparkle and I'm feeling ready to shine brighter than ever before.
For almost my entire stay, I've had something called a Central Venous Catheter in my neck. I'm what they call a "hard poke" so trying to get an IV line started in my arm or hand is extremely difficult. This is the why I get so bruised. This CVC goes in through the big vein in the neck and ends up in the vein that returns blood to the heart. It has 3 ports which made giving me numerous IV fluids at a time much easier. They can also draw blood from it so I didn't need to get poked daily for blood work. I've actually had to have two. They're only good for 30 days so it went from one side to the other after the first one became expired. It wasn't a great experience getting them but it made things less stressful and less painful for me.
The fluid I retained is almost all gone. Once my body had mostly recovered from all of the trauma of some of the procedures I went through, they started giving me IV diuretics. At first, I was averaging a loss of about 3kgs a day. I'm currently 2kgs below my starting weight. For whatever reason though, the fluid wouldn't leave my belly and still hasn't. The doctors think it might be Lupus related. Because the pressure of having so much fluid in my abdomen was still making it hard to breathe and move, they finally decided to do a procedure called a paracentesis or abdominal tap. This is where they make an incision in your abdominal wall, insert a catheter and drain the excess fluid. After an ultrasound showing 10cm of fluid between my abdominal wall and my organs, the resident doctor was confident they could get at least two litres out. Procedure was started, two litres removed and he felt comfortable removing another. After 3 litres, the flow was still strong so he went for a fourth. All said and done, he removed 4.8 litres of fluid (which looks like urine but isn't) and likely could have gotten more but there can be complications with taking too much so he stopped. I instantly felt different. I could breathe better. Walking was easier. I wished they would have done it sooner.
I have been through the ringer during this admission. I've had many invasive procedures, I've had many procedures that weren't invasive but felt torturous given the state that my body was in, I've had holes cut into me, fluids drained into me, fluids drained out of me and been at the absolute mercy of medically trained strangers. This has been hard on me emotionally and physically, but the mental aspect has been the most difficult. Going through two years of fighting to get stronger and healthier only to end up back at your weakest so many times takes a huge toll. A person can only be so positive for so long. I almost lost my sparkle.
Having an invisible illness, whether mental or physical, isn't easy. People look at you and can't understand how you could possibly feel so terrible when you look like everyone else. I may look fine, I can put on makeup, nice clothes and make myself presentable but my body might be feeling like it's been run over by a freight train. You can't see that but I can feel it. For people suffering, faking it becomes the norm so other people don't feel uncomfortable.
Sharing my story is a way to bring awareness to my disease as well as reiterating to be kind to everyone because you don't know what kind of struggles they may be going through. To those of you who have been following my story and have reached out and sent well wishes, you have no idea how much that means to me. Your sparkle reignited my sparkle and I'm feeling ready to shine brighter than ever before.
Love ya! Can't wait for you to be out and on the mend!! XO
ReplyDeleteThat's creepy, I'm not sure you can see it's me! ~ Jana
DeleteSure can't tell, just says unknown! Haha. Love you too!
Delete