Thursday, October 13, 2016

11 Years Today...

Today has been 11 years since my mom passed away.  She had breast cancer.  I also believe that she may have had Lupus too, although that's only based on my memories of her...I have no way of knowing for sure.  My mom passed on October 13th 2005.  She was 53 years old.  I was 24 years old.  My mom was a single parent, and I am an only on that day, I lost the person who had been my whole world.  It was one of the hardest days of my life.  

Today, 11 years later, I still miss her as much as the day she died.  As a Christian, I believe she is in Heaven.  My mom loved God and Jesus... and she truly believed.  She had confidence that she was going to be with her savior.  At that time in my life, I didn't believe like I do now.  I was skeptical.  I was raised a Christian, but I was angry that my mom was dying.  My mom talked to me a lot about life, death and faith.  In her passing, she showed me that Heaven is very real.  

Since then, not a day goes by that I don't think about her.  I see her in the beauty of nature, in the warm summer sun, when I see a robin perched on a branch, when I'm at the barn in the sweet smell of hay and horses, and most of all, when I see my son smile.  He looks so much like his Daddy, but when he smiles he is 100% my mom.  He has the same twinkle in his bright, gorgeous blue eyes. 

When I think of my mom passing so young, I worry about my own health and want to be healthy & strong for my son and my family.  In some ways, I am thankful that I was diagnosed with Lupus when I was because my organs are healthy and I'm on a treatment plan that I hope will work for many years to come.  I hope that the monitoring that I have by wonderful doctors means that I will live a long life.  I truly believe that one of the scariest parts of Lupus is how many women remain undiagnosed.  Women who go to the doctor with symptoms that don't make any sense, and who have their doctors brush them off.  Women who wake up exhausted, in pain, and wonder why they feel the way they do when they are young and should have more energy.  If you're reading this, and this sounds like you then please ask your doctor to run a comprehensive metabolic panel of blood tests including an ANA test.  If that's positive, ask for an anti-double stranded DNA test along with a referral to a rheumatologist who will test you for things like an anti-Smith antibody and other tests for autoimmune diseases.  Don't be afraid to ask your doctor for these tests.  Trust your my good friend says, "that is the Holy Spirit talking to you", and I believe she is correct.  Sometimes, I think though, that the voice/gut feeling talking to me is actually my mom...but either way, I listen.

None of us know what God has in store for us.  For my mom, God called her home far too young, but the impact she made on this Earth in 53 years was pretty amazing.  She is my biggest inspiration. I hope I can be as good of a mom as she was to me.  

This was a long and rambling post, but if you've lost a parent then you know how I'm feeling. 

Moral of the story, if you feel like something is wrong with your body, whether you suspect cancer, or lupus or something else, push hard to get the tests needed.  Trust your body, trust your instinct.  Trust God to guide you.  Early detection, with anything, is key.


Thursday, September 15, 2016

CBD Oil for Lupus symptoms & helping with negative drug side effects

Before I start this post, I just want to say that I was never one to experiment with drugs and I am not generally a big believer of "natural cures" for serious things like Lupus.  It makes me so mad when people tell me I can "cure my Lupus by trying X, Y, or Z treatment".  I want to scream "if it was that easy, I would have been cured already!!!".   So, trying CBD oil for Lupus wasn't something I ever thought I would do.  

This is NOT a sponsored post.  I am not receiving any compensation for writing it, and I was not provided any free product.

Here's how this all came about.  My doctor actually suggested I give this a try.  It's legal in all 50 states, it does NOT make you high or cause any mental changes at all.  The part of the marijuana plant that makes you high is not in this oil.  This is Cannabidiol CBD oil that has many health benefits.  My doctor suggested I take it to help ease the side effects of the Lupus drug I take, Plaquenil.  I get horrible headaches daily, and up until now I was taking 2 Tylenol every single day because I cannot take NSAIDs or Aspirin.  I know how terrible Tylenol is for your liver, so I was looking for some solutions.   I've been taking 2 drops of CBD oil, twice a day now for 3 weeks and I can say that I've only had to take Tylenol once during that time!  A pretty amazing improvement!

For me, taking it to help with the side effects of the Plaquenil alone is worth it, but I also like that it can reduce the risk of seizures, which can be elevated in people with Lupus.  My mom (who I am positive also had Lupus) also got seizures, so I'm hoping not to follow in her footsteps in that respect.
In addition, it seems there are many other health benefits and I haven't been able to find too many negative side effects to worry about.

Once I knew it was something I wanted to try, I did some research on what brand to buy.  Friends recommended other brands, but I decided to go with the brand my doctor recommends,  I got the #42 bottle of oil and take 2 drops under my tongue twice a day.  It's on sale right now for about $69 per bottle but usually runs around $85.  It lasts a really long time though, because you're using literally only drops of it a day.  

I am always skeptical of these things, but I have been really happy with my results using CBD Oil to help with my Lupus symptoms.  I do feel I have increased energy, less anxiety, and the headaches are SO much better.  

Of course, ask your doctor before you try anything, but if you do give it a try, leave a comment below and let me know about your own experience!

xo Nikki

Tuesday, June 21, 2016

Being a Mom with Lupus

Being a mom is wonderful, fulfilling, and if you're a mom then you also know that it's tiring for the average mom nevermind a mom with Lupus.  Each day, I have to take breaks to make sure I rest enough to be able to keep up with everything that needs to be done.  My joints hurt, and I have the typical Lupus pains. However the hardest thing for me is worrying about the future. I want to be here for my son forever if I can!  I do my best not to dwell on it, but being a mom with Lupus is a challenge and I just wanted to let you know that if you're a mom with Lupus out there reading this right now, I can relate to you.  I get it.  Please reach out to me if you need someone to talk to. Together we can live with lupus and thrive! :) 
Here's a blog post on the topic that I think is excellent...
and this one is great too!

xoxo Nikki

Friday, June 17, 2016

Follow our Facebook Page!

I'm late to the game on this, but we have a Facebook page!  Click on the link below to follow on Facebook.  The facebook address is @followlivinglifewithlupus 

I hope you'll like the page, share it with others who have lupus, and use it as a way to connect and communicate.  I hope to connect with all of you! xoxo Nikki

Thursday, June 16, 2016

Lupus News! Anti-interferon antibody - anifrolumab

I love sharing positive news about lupus drugs, trials, or advancements in the treatment of the disease!  Today's news is about the anti-interferon antibody, anifrolumab that has been shown to dramatically reduce disease activity in extrarenal systemic lupus.  Here's some info from the article....

LONDON, United Kingdom — After years of clinical trial failures, an anti-interferon antibody, anifrolumab, has been shown to dramatically reduce disease activity in extrarenal systemic lupus erythematosus.
In a large phase 2 trial, "we saw consistent, good results with anifrolumab across multiple measures of disease activity," said Richard Furie, MD, chief of rheumatology at Northwell Health in Long Island, New York. "I think these results give us more than hope."
"There has been failure after failure after failure in terms of new clinical trials, not just in extrarenal lupus, but also in lupus nephritis," Dr Furie told Medscape Medical News. "There is a great need for safer therapies, for better therapies, and for targeted therapies. And now we have these phase 2 study results that are very robust."
Click here to read the rest of the article.