My Journey With LDN – Patients Have Power

This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research.

My Journey With LDN – Patients Have Power

I’ve been in pain for so long due to my chronic illnesses.  A year and a half ago, I was finally accepted into a pain clinic.  I knew that the goal would be to get me to have less pain and thus better living.  My doctor is amazing and I’m so lucky that he’s the doctor who after such a long wait I got to see.  I started with trigger point injections and I still have those every week.  My Dr. thought that Low Dose Naltrexone or LDN would be a good fit for my fibromyalgia.  Due to LDN and the effects on the body I had to talk to all my other doctors to make sure it would not have adverse reactions to my medications and conditions.  With the okay from my medical team, I started LDN with a dose of 3mg.  I ran into luck that the LDN is covered by my husband’s prescription plan so it only costs me $18 for a month with my co-pay.

 

Low Dose Naltrexone is not a common drug but in its original state, it’s used for drug overdoses. I’m not in a true clinical trial but I did my research on LDN and thought that I would try it. I had some crazy nightmares when I was taking it at bedtime so I now take my LDN in the morning and I’m past the point of side effects.  I did have a hard time adjusting to it and I now only have Tylenol 3’s for breakthrough pain and traveling.  I also have started taking medical cannabis for about three months in to help with nausea, pain, and sleep.

I believe that LDN has put me in a stable position with my fibromyalgia, Hashimoto’s and arthritis. LDN is still in the clinical trials phase with the Food and Drug Administration in the United States. So while I’m not in an official drug trial with LDN, I’m wasn’t afraid to try a new medication that is still in the clinical trial phase.  It’s working for me and that’s all that matters to me.

If you think that you’d like to be in a medical trial, Clara Health can point you in the right direction. Clara also has some awesome articles that are searchable at the Clara Guides and they also have free podcasts to listen to.

 

I consider myself to be a part of research because I’m taking LDN and it’s working for me even if it’s not specifically approved for my conditions.  LDN has not cured me but I’m stable and I’ll take that until there is a cure.  If your doctor suggests an alternative medication, don’t be afraid, research it and it could be the thing that stabilizes you.  I research my illnesses, treatments, and medications because I need to know what might work for me.  Research your conditions, medications and don’t be afraid of clinical trials.  If I qualify for any clinical trials near me I wouldn’t hesitate to sign up.

 

While I am writing this blog as a contest entry, I’m still very passionate about my treatment plan because if I share my journey then I might help someone else on their journey.

 

Remember Patients Have Power!

Journey with me … mini2z

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I attended #HealtheVoices18 and I’m Still Amazed

I Attended HealtheVoices18 and I’m Still Amazed

Disclaimer: “Janssen covered my travel expenses to attend #HealtheVoices18. All thoughts and opinions expressed here are my own.”

I applied to HealtheVoices18 by making a video answering a few questions on why I would be a good fit;  I have the video saved and I still can’t believe they picked ME! This was their fourth year of holding the HealtheVoices Conference, where they bring all kinds of patient advocates together by “Growing Stronger Together”.

 

I had to talk to all my doctors to make sure I was okay to travel, per my family.  My doctors all agreed it would be fine for me to travel.  Janssen had everything thought of in advance for the attendees, blankets, ice packs, couches, comfy chairs and we had been informed where there were pharmacies, urgent care and nearby hospitals.  I explained to my husband that I would have a wheelchair set up upon my arrival in both directions to help me in the airport since I’d be travelling alone.  I explained that he could go as my companion caregiver.  He thought he’d be bored but now I know he would have loved it, meeting other caregivers and seeing the amazing speakers.

 

There were several things I needed to take care of before I went away for four days.  I wanted to travel carry-on luggage only, I needed some clothes because I’ve lost so much weight that even my newer clothes were too big.  I wasn’t sure I’d be able to accomplish a carry-on only but I did it!  I bought three t-shirts, two pairs of jeans, a pair of jean shorts and an anorak jacket.  I lost my jacket in our flood so I wanted to make sure I found one that I loved.  The dress for the conference was to be comfortable.

 

 

HealtheVoices took care of everything!  I was able to pick when I wanted to fly to Chicago and then what time I wanted to fly back home.  I arranged with the airline a wheelchair through the airport and when I arrived in Chicago and there was a porter waiting as I got off the plane.  Because I was carry-on only, we went to the meetup location, I spotted the HealtheVoices sign.  I was then ushered into a car.  I felt like a celebrity sitting in the back of the car being driven to the hotel all alone.  The hotel was a 40-minute drive from O’Hare airport, check in was a breeze and my room request of a high floor was awesome.  The view of the Chicago River was beautiful as was the hotel room.

 

 

I went to registration and received my welcome package.  I went down to the restaurant and got myself some lunch and a glass of wine.  I had received an email that there would be a Canadian meet up at 7 pm down in the bar.  The Canadian meetup was a great way for the Canadian’s to get to know each other.  This, the fourth HealtheVoices Conference, had the most Canadians ever.  Most years there were only two Canadian attendees.  This year we were eight strong.  I never even thought to get a group photo because I was in awe of all the amazing advocates and the wide-ranging health issues we advocate for.

 

 

The actual conference was Friday, Saturday and Sunday, check out the agenda here.  There were even various seating options during the sessions with sofas and side chairs and they came in handy.  They had a wide variety of food for all of the meals and it was all yummy.  I’m amazed at how everything had been thought of for the Patient Advocate attendees from snacks, drinks, blankets, a quiet room, a social room, heating pads, and ice packs.  Sending a great big thanks to the Janssen team at the conference.  On Friday, I started to get dizzy and was super nauseous.  The Janssen team members recognized that I wasn’t right, they brought me into the quiet room and took care of me.   I was able to get some food and ginger ale into my body and join in on the afternoon sessions. Thank you Janssen Team!  You are amazing.

 

 

Sadly, the only thing I missed was the open mic night.  I went to my room and went to bed early.  Having the Patient Advocates involved in the whole weekend, talking, advocating, meeting fellow chronic illness warriors and others with completely different diseases was the right amount of balance.  I met so many amazing people who I bonded with, some had my illnesses and others did not.  One thing we all have in common is our mental health.  It’s common across all illnesses and it’s something that we all need to keep vigilant of.  The theme was, “Growing Stronger Together”.  I know I came away feeling stronger, a sense of togetherness with my new friends and I feel I’ve grown as a Patient Advocate.  I learned so much over the weekend and I’m so inspired by everyone and everything I learned. I spoke out loud about my depression, anxiety and suicide attempt.  I also posted videos on my social media for the first time that weekend.  This is the first real blog I’ve felt like writing because I’d been so wrapped up in everything that my illnesses brought to my life.  I wasn’t living and feel like I found my way back to who I really am. and I am more than my illnesses!.

 

I’m so thankful that Janssen picked me to attend HealtheVoices18.  Thank you for all the swag from the conference sponsors.  The most important part of the weekend was meeting friends, making new friends and knowing I’m not alone on my journey that we’d already Grown Stronger Together!

If you want to see what HealtheVoices was about, they go check it out, https://www.healthevoices.com/virtual-experience.html 

 

 

 

Thank you, HealtheVoices, Janssen and thanks for reading, journey with me…mini2z

 

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The Total Protection Package by ImmunizeLABS Review

The Total Protection Package by ImmunizeLABS Review

“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “

Before I was selected ImmunizeLABS had several questions for me about my health, what were my illnesses, what were my symptoms before I was selected to try the product.  I think that this in itself is a reason to trust in this company.  They didn’t want me trying a product that was not right for me.  ImmuizeLABS started out of trying to figure out what was wrong with Christine.  Like a lot of us, Christine had been diagnosed with  CFS/ME (Chronic Fatigue Syndrome / Myalgic Encephalomyelitis).  Her Husband Pascal set out to find a way to cure Christine and how their products were developed and you can read their story here: https://immunizelabs.com/pages/about-us

 

Our health is the most precious gift we have and is our responsibility. The best way to avoid doctors, hospitals, drugs and all the side effects is to keep from getting sick in the first place. @immunizeLABS Click To Tweet

 

Once I was accepted, I was sent my sample package very quickly.  The bottles were packaged very well and all arrived safe and intact to me.  I received Kit 2 The Total Protection package, which included two bottles of Pain Relief, one bottle of Boost and Shield.  This is a 30-day supply.  The bottles did not need refrigeration.

 

Total protection that includes:

  • pain and inflammation prevention
  • immune system boosting to fight infections and recover faster
  • cellular boosting for disease resistance and added energy
  • 1 Month supply of Pain and Inflammation protection (2 Bottles)
  • 1 Month supply of Shield immune boosting protection
  • 1 Month supply of Boost cellular health boosting protection
  • $30 discount
  • Free shipping
  • $250

These statements have not been evaluated by the FDA. This product is not intended to diagnose, treat, prevent or cure disease or illness.

*Always consult with your healthcare professional before starting any supplementation program, before taking or stopping any medication, or if you have or suspect you might have any health problem.

Source:  ImmunizeLABS

 

I had been ill in that I was very nauseous as with most days of my illness so I waited to start taking the regimen.  The instructions were simple, take two tablespoons of Pain Relief and a tablespoon of Boost and Shield first thing in the morning with 4 ozs of water.  (Somehow I missed that I could take it with apple juice)  To start you only need to take a teaspoon and build up to the recommended dose over the first week.  The smell of Pain Relief turned my stomach more than it usually is in the morning.  I had to take just the Boost and Shield together.  None of the products I tried needed to be refrigerated and that is pretty awesome in a product that has no added sugar, no artificial ingredients, no GMO’s, no soy, no dairy, no nuts and the only added natural flavours are organic cocoa, stevia, cinnamon oil, and ginger oil.

Did it work?  I really can’t say.  I’ve been taking Boost and Shield and I haven’t gotten whatever the nasty bug is that my family has been plagued with.  I have lupus and I catch everything and anything I catch can cause complications.  Did I not catch it because I’ve been supplementing with Boost and Shield?  I hope so.  Two of the three people in my home other than me have had to go get antibiotics for whatever the bug is they have.

If ImmunizeLABS could come up with a caplet form of the formulas then I would be able to take all the formulas.  I think that once there are other flavours, as mine was chocolate, their products will appeal to wider range of people. As someone who has taken way too many prescription medications in my lifetime, a chance to try something that is natural and good for my body instead of synthetic and chemicals is an honor to try.

If you are interested in trying any of ImmunizeLABS products yourself, please check them out and KRISTIN10 will get you a 10% discount on any purchase until June 1st, 2017.  Also, shipping is free on orders over $200. 

Journey with me … mini2z

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