Sunday, February 12, 2017

Has anyone tried a holistic doctor for treating Lupus?

Hi everyone!  I'm wondering if anyone has tried a holistic or complementary medicine primary care doctor for treating Lupus and if so, what do you think?

I currently see a traditional primary care doctor, as well as a traditional rheumatologist.  I am planning to keep my traditional rheumatologist, but I'm interested in possibly switching to a holistic focused primary care doctor who can better manage things like supplements, acupuncture, etc.

Anyone who has done this & wants to share, please comment below or email me at


Thursday, January 12, 2017

Dealing with common illness while having Lupus...

Lupus is hard enough, right?  Add in your average germs and it can be really challenging.  I live in Massachusetts and the winters here tend to be filled with lots of common every day germs like colds and stomach bugs.  Our 2 year old son got a little stomach bug yesterday and sure enough I woke up today not feeling so good.  Instead of being able to just be "normal" and worry about the stomach bug, of course I started worrying about how this would affect me overall -- would I get more sick, would lupus flare up and be more painful, would it go away quickly, etc?  The thoughts are hard to manage when you get sick.  I think we all know that.  

I have been trying to live in the moment, in each day, without worry about the future.  I am so blessed to have a wonderful supportive family and a man who loves me and takes great care of me when I'm sick, but being sick itself is hard.  I generally try to keep the posts here very upbeat and positive, but I wanted to be honest about how I'm feeling today.  I'm sure I'm not alone.  

We just had an amazing trip up to Canada to see family.  Lots of hockey, sledding, a few too many glasses of wine (which I try my best to limit, but staying up late with family is always so fun) and maybe I pushed myself a little too hard and I'm paying for it now, but life is about making memories with people you love.   I'm wondering how you handle balancing things in life, the late fun nights with the common illnesses and also work and being a parent?  If you have lupus (or any other illness) and you're reading this right now, please comment below with your thoughts and any advice you may have.   I'm loading up on vitamins, being diligent about taking my medicine and trying to put mind over matter.  Sometimes just getting up, taking a shower and continuing with my day is all I need to feel better.  Sometimes it's not.  What works for you?  I'd love to have this be a place where we can share tips and help each other through this.  Hang in there friends! xoxo

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