2016 has brought many lessons and challenges throughout the last 12 months. Having lupus brings daily challenges that you must face head on, If you procrastinate the cruel lupus challenges it's likely you'll end up in a precarious flare. Heading the signs of a flare on is your best bet and listening to your body is a lesson you must learn early on in your disease.
I've learned that lupus is now in my lungs and my function is now 54% with a capacity of 77% and my heart is affected with a mitral valve prolapse. This is on top of my central nervous system being affected, lesions on my brain and lesions on my corneas (caused from Sjorgens). I take everything in stride because there's nothing I can do about this but continue with my cocktail of medications my doctors have me on. I actually have never felt better that I do now. I have 1 bad week a month compared to where I was a year ago. I do have break through periods, but what can I say? I have lupus. It's cruel. It's mysterious. It's a life long disease. This all has taught me that I need to control my breathing, bring my inhaler with me, watch my headache signs and the pain in my eyes. I have to look out more for myself and listen to my own advice that I'd give to someone I advocate for.
Having lupus is only part of the challenges I've had to face this past year. I have a son that has ADHD (Attention Deficient Hyperactivity Disorder), ODD (Oppositional Disobedient Disorder) and High Functioning ASD. He's been in therapy for the past 4+ years but it wasn't until this past May 2016 that he was correctly diagnosed. We've had many trials and tribulations through the years and not only has it put stress on our son but as the family as a whole; including our youngest child. Now that we have him in the correct type of therapy (psychologist and OT) and having the school on board, things are much better. This does still bring daily challenges when he has outbursts but we know how to handle what we're dealing with now.
Having lupus along with a special needs son has been extremely stressful and has been super hard. But, I've done my best for my sons sake and tried to deal with my disease so he doesn't feel like the stress is related to him. I try to keep it together as much as possible but that has it's down fall(s) as well.
These are the things that 2016 has taught me:
1. Once you show others you've got it "together" you need to keep your sh!@ together in order to keep up the appearance that you in fact do have your sh!@ together!
2. Once you reveal a "secret" to someone you think you can trust, it's a 50/50 crap shoot that you'll ever hear from that person again. Watch what you share and with who.
3. Listen to your body. If you're in pain or feeling fatigued, it's time to stop and rest!
4. Don't always trust the 1st or 2nd medical opinion you get. If your intuition tells you otherwise, then get a 2nd or 3rd opinion. We did that with our son and like I always say, "a mother knows!"
5. Learn to pick a fight. What I mean by this is that you don't need to argue about everything with everyone. Learn whats important to stand your ground on and let the rest go. You can't stand on the podium all the time. Pick your battle and agree to disagree. I'd rather have peace in my house, heart and soul than be right 110%.
6. I learned that being creative doesn't always mean making things. There's many ways to being creative.
7. I LOVE Volunteering!!!! There's always organizations looking for volunteers!
8. Being a parent never stops. Whether your child is an adult or a toddler, you're always going to want to parent that child. Whether they listen to you or not is up to them but you never stop being a parent.
9. I've learned to be content. I used to want just to want. Now I am totally content with everything; my house, my car, my everything. It's nice not to want....just be.
10. Be grateful. To wake up every day and breath is a wonderful way to begin the day and find at least one thing to be grateful for!
Welcome 2017! Let's begin this year with happiness, peace, love and better health. I wish all my friends, family and lupus family spectacular 2017!
I've learned that lupus is now in my lungs and my function is now 54% with a capacity of 77% and my heart is affected with a mitral valve prolapse. This is on top of my central nervous system being affected, lesions on my brain and lesions on my corneas (caused from Sjorgens). I take everything in stride because there's nothing I can do about this but continue with my cocktail of medications my doctors have me on. I actually have never felt better that I do now. I have 1 bad week a month compared to where I was a year ago. I do have break through periods, but what can I say? I have lupus. It's cruel. It's mysterious. It's a life long disease. This all has taught me that I need to control my breathing, bring my inhaler with me, watch my headache signs and the pain in my eyes. I have to look out more for myself and listen to my own advice that I'd give to someone I advocate for.
Having lupus is only part of the challenges I've had to face this past year. I have a son that has ADHD (Attention Deficient Hyperactivity Disorder), ODD (Oppositional Disobedient Disorder) and High Functioning ASD. He's been in therapy for the past 4+ years but it wasn't until this past May 2016 that he was correctly diagnosed. We've had many trials and tribulations through the years and not only has it put stress on our son but as the family as a whole; including our youngest child. Now that we have him in the correct type of therapy (psychologist and OT) and having the school on board, things are much better. This does still bring daily challenges when he has outbursts but we know how to handle what we're dealing with now.
Having lupus along with a special needs son has been extremely stressful and has been super hard. But, I've done my best for my sons sake and tried to deal with my disease so he doesn't feel like the stress is related to him. I try to keep it together as much as possible but that has it's down fall(s) as well.
These are the things that 2016 has taught me:
1. Once you show others you've got it "together" you need to keep your sh!@ together in order to keep up the appearance that you in fact do have your sh!@ together!
2. Once you reveal a "secret" to someone you think you can trust, it's a 50/50 crap shoot that you'll ever hear from that person again. Watch what you share and with who.
3. Listen to your body. If you're in pain or feeling fatigued, it's time to stop and rest!
4. Don't always trust the 1st or 2nd medical opinion you get. If your intuition tells you otherwise, then get a 2nd or 3rd opinion. We did that with our son and like I always say, "a mother knows!"
5. Learn to pick a fight. What I mean by this is that you don't need to argue about everything with everyone. Learn whats important to stand your ground on and let the rest go. You can't stand on the podium all the time. Pick your battle and agree to disagree. I'd rather have peace in my house, heart and soul than be right 110%.
6. I learned that being creative doesn't always mean making things. There's many ways to being creative.
7. I LOVE Volunteering!!!! There's always organizations looking for volunteers!
8. Being a parent never stops. Whether your child is an adult or a toddler, you're always going to want to parent that child. Whether they listen to you or not is up to them but you never stop being a parent.
9. I've learned to be content. I used to want just to want. Now I am totally content with everything; my house, my car, my everything. It's nice not to want....just be.
10. Be grateful. To wake up every day and breath is a wonderful way to begin the day and find at least one thing to be grateful for!
Welcome 2017! Let's begin this year with happiness, peace, love and better health. I wish all my friends, family and lupus family spectacular 2017!
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