Living with Lupus
Someone I know has a relative who was recently diagnosed with lupus, and I have been asked to share my story to help this woman deal with the disease. It is something I've been dealing with for nearly a decade now, and I thought my story might help others out there. I've always dealt with this privately, but perhaps this is the right time and the right outlet to share my story.
Thirteen years ago, I was newly married and pregnant. It was an exciting time, and I was thoroughly enjoying my pregnancy. After a horrible first marriage, I felt as if I'd been given a new lease on life. I did everything right - saw a doctor right away, took prenatal vitamins, watched my diet, exercised regularly, didn't drink, didn't smoke. I even gave up caffeine (and I LOVE Coke, so that was a biggie for me!). Then at 28 weeks, I developed HELLP Syndrome and gave birth to a 2 pound 7 oz baby by emergency c-section, and both of us nearly died. She had heart surgery when she was only a day old, and had her first brain surgery at three months. She's had a few brain surgeries since. She dealt with ear infections and went to PT and OT, but other than that, she has been relatively healthy. We were very lucky, we know. But after she was born, I didn't feel so lucky. I was exhausted, my blood pressure was up, my thyroid wasn't working right, and I was having kidney problems again. I know pregnancy is a body-changing experience, but I kept thinking, wow, my child is nearly three - when do you get back to normal?? Then I started developing pain in my lower arms, and tingly sensations in my arms. It was as if my arm was asleep, and I couldn't feel anything with my fingers. I would literally have to look at my hand to see if I had actually picked up a pen. I thought it might be carpel tunnel syndrome. And I had horrible migraines. I thought, what if I'm having a stroke? I went to my doctor, had her review notes from the OB I had seen during my pregnancy, and she ran more tests.
My doctor called me at home one evening with the news. I had been diagnosed with lupus. I cried. But also felt relief. At least I knew what I was dealing with. I wasn't even sure what kind of doctor I needed - what kind of doctor do you see for lupus? My family doctor referred me to a rheumatologist. I went for a consultation, and felt better. He told me that, with early and consistent treatment, it was possible to lead a relatively normal life. I have to admit, though, I didn't feel a connection with him. I made an appointment with another rheumy, and went for a consultation. I liked her right away. I've been seeing her for several years now, and I like her. I feel like she's got a handle on my condition, and that she treats me as a person instead of as a disease. Before I started treatment, I was beyond exhausted. That was probably the worst - not looking sick, but feeling like shit. A common way of describing it is the spoon theory. It's like starting the day with X number of credits and you have to choose exactly how you want to spend those credits, because once you've used them up, your body will stop. I still have to be careful and listen to my body. If I overdo it, my body protests and I will deal with painful mouth ulcers, swollen joints, migraines, and fatigue. But if I take care of myself and take my meds, I live a pretty normal life.
If you have been diagnosed with lupus, here are my tips:
There are several symptoms of lupus. Get to know them, and watch for them.
Find a good rheumatologist. Go for a consultation, and be prepared to visit with at least two doctors before you find a good one. You need a doctor that will listen to you - no one knows your body better than you. I hate being on lots of medications, but I also understand that they are a necessary evil in order for me to be able to live a decent life. It's a tradeoff I'm willing to make. I looked for a doctor that would be willing to work with me, so that I could explore natural remedies that would work with the traditional route. My rheumy is good at working with me on that, too. For instance, there is some proof that Swedish massage helps lupus patients, so my doctor has incorporated massage into my treatment. I also do certain exercises (yoga is good, for example), and she helps me to decide what vitamins work in conjunction with my prescription medications. On a sidenote, it's also helpful to have a good relationship with your doctor's nurse. He or she will be your first contact when you have a problem.
Take your medications. As I said before, I hate taking pills. But I also know that if I don't take my Plaquenil every day, I will be in bed by 7:30 at night. I want more out of life than just working, I want time to enjoy my home and my family - so I take the meds. That said - communicate with your doctor, because he/she can help you find ways to keep your prescription meds at a minimum. And your doctor can educate you on what natural remedies and preventative medications to steer clear of. For example, a lupus patient should NEVER take echinacea (OK - I know I misspelled that!), and I can't take the flu shot because it will kick me into a flare.
Diet. Eat healthy. 'nuf said.
Exercise. Low impact is good. High impact is bad. Your joints will give you enough trouble. Don't aggravate them.
Find support. It can be an online support group, a face-to-face group, or a friend you can trust. This is a tough one. For me anyway. I don't want to be a whiner. But it does help to "unload" occasionally. Whine for a bit and get it out of your system. Then get on with things.
Take responsibility for your health. Learn about your disease. Communicate with your doctor. If you take any herbs or practice any sort of alternative medicine, discuss it with your doctor to make sure that your disease is being fought by a united force. Your treatments need to work together to fight the disease that has invaded your body.
Listen to your body. If you get tired, rest. If you notice a new or worsening symptom, call your rheumy. Ultimately, the person responsible for your health is you.
Whether you or someone you know has been diagnosed with lupus, I hope this information is helpful to you. If you would like to share your own story, feel free to post a comment. Thanks for listening.
Wishing you lots of spoons,
Elle
Thirteen years ago, I was newly married and pregnant. It was an exciting time, and I was thoroughly enjoying my pregnancy. After a horrible first marriage, I felt as if I'd been given a new lease on life. I did everything right - saw a doctor right away, took prenatal vitamins, watched my diet, exercised regularly, didn't drink, didn't smoke. I even gave up caffeine (and I LOVE Coke, so that was a biggie for me!). Then at 28 weeks, I developed HELLP Syndrome and gave birth to a 2 pound 7 oz baby by emergency c-section, and both of us nearly died. She had heart surgery when she was only a day old, and had her first brain surgery at three months. She's had a few brain surgeries since. She dealt with ear infections and went to PT and OT, but other than that, she has been relatively healthy. We were very lucky, we know. But after she was born, I didn't feel so lucky. I was exhausted, my blood pressure was up, my thyroid wasn't working right, and I was having kidney problems again. I know pregnancy is a body-changing experience, but I kept thinking, wow, my child is nearly three - when do you get back to normal?? Then I started developing pain in my lower arms, and tingly sensations in my arms. It was as if my arm was asleep, and I couldn't feel anything with my fingers. I would literally have to look at my hand to see if I had actually picked up a pen. I thought it might be carpel tunnel syndrome. And I had horrible migraines. I thought, what if I'm having a stroke? I went to my doctor, had her review notes from the OB I had seen during my pregnancy, and she ran more tests.
My doctor called me at home one evening with the news. I had been diagnosed with lupus. I cried. But also felt relief. At least I knew what I was dealing with. I wasn't even sure what kind of doctor I needed - what kind of doctor do you see for lupus? My family doctor referred me to a rheumatologist. I went for a consultation, and felt better. He told me that, with early and consistent treatment, it was possible to lead a relatively normal life. I have to admit, though, I didn't feel a connection with him. I made an appointment with another rheumy, and went for a consultation. I liked her right away. I've been seeing her for several years now, and I like her. I feel like she's got a handle on my condition, and that she treats me as a person instead of as a disease. Before I started treatment, I was beyond exhausted. That was probably the worst - not looking sick, but feeling like shit. A common way of describing it is the spoon theory. It's like starting the day with X number of credits and you have to choose exactly how you want to spend those credits, because once you've used them up, your body will stop. I still have to be careful and listen to my body. If I overdo it, my body protests and I will deal with painful mouth ulcers, swollen joints, migraines, and fatigue. But if I take care of myself and take my meds, I live a pretty normal life.
If you have been diagnosed with lupus, here are my tips:
There are several symptoms of lupus. Get to know them, and watch for them.
Find a good rheumatologist. Go for a consultation, and be prepared to visit with at least two doctors before you find a good one. You need a doctor that will listen to you - no one knows your body better than you. I hate being on lots of medications, but I also understand that they are a necessary evil in order for me to be able to live a decent life. It's a tradeoff I'm willing to make. I looked for a doctor that would be willing to work with me, so that I could explore natural remedies that would work with the traditional route. My rheumy is good at working with me on that, too. For instance, there is some proof that Swedish massage helps lupus patients, so my doctor has incorporated massage into my treatment. I also do certain exercises (yoga is good, for example), and she helps me to decide what vitamins work in conjunction with my prescription medications. On a sidenote, it's also helpful to have a good relationship with your doctor's nurse. He or she will be your first contact when you have a problem.
Take your medications. As I said before, I hate taking pills. But I also know that if I don't take my Plaquenil every day, I will be in bed by 7:30 at night. I want more out of life than just working, I want time to enjoy my home and my family - so I take the meds. That said - communicate with your doctor, because he/she can help you find ways to keep your prescription meds at a minimum. And your doctor can educate you on what natural remedies and preventative medications to steer clear of. For example, a lupus patient should NEVER take echinacea (OK - I know I misspelled that!), and I can't take the flu shot because it will kick me into a flare.
Diet. Eat healthy. 'nuf said.
Exercise. Low impact is good. High impact is bad. Your joints will give you enough trouble. Don't aggravate them.
Find support. It can be an online support group, a face-to-face group, or a friend you can trust. This is a tough one. For me anyway. I don't want to be a whiner. But it does help to "unload" occasionally. Whine for a bit and get it out of your system. Then get on with things.
Take responsibility for your health. Learn about your disease. Communicate with your doctor. If you take any herbs or practice any sort of alternative medicine, discuss it with your doctor to make sure that your disease is being fought by a united force. Your treatments need to work together to fight the disease that has invaded your body.
Listen to your body. If you get tired, rest. If you notice a new or worsening symptom, call your rheumy. Ultimately, the person responsible for your health is you.
Whether you or someone you know has been diagnosed with lupus, I hope this information is helpful to you. If you would like to share your own story, feel free to post a comment. Thanks for listening.
Wishing you lots of spoons,
Elle
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