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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Feeling Some Hope

Feeling Some Hope

 

I wonder when my life became a revolving door of doctor’s appointments, nausea, fatigue, chronic pain, migraines, and the list goes on.  I spend my time managing my life around my illnesses.  I have a no more than one doctor appointment in one day due to the crappy chairs in the waiting rooms that cause more pain, doctors falling behind because it always happens.  I have a few doctors that I get in right around my appointment time.

I’ve had to have a few doubled up appointments because my Pain Care doctor wants to have me try Low-dose naltrexone or LDN.  I’m a good candidate but it entails having all my doctors aware and on board so that we can work quickly if any complications arise.  What is LDN?  Well, the short answer is it’s a smaller dose from .05 to 4.5 mg compared to the 50 mg dosages that are given to persons going through opioid withdrawal.  The LDN is what’s called off-label because they’re still doing studies on it.  Yes, I feel like I’m part of a study, I’m not but the process has been hard fought.

What is low-dose naltrexone and why is it important?

Low-dose naltrexone holds great promise for the millions of people worldwide with autoimmune diseases or central nervous system disorders or who face a deadly cancer.

Source:  http://www.lowdosenaltrexone.org

My conditions of Lupus, Depression, Hashimoto’s, Fibromyalgia, are just a few of the conditions that LDN can help.  I’ve also read that it can help with migraines.  I’ve lost three years of my life so far to the storm that my body has gone through.  I’m currently seeing a General Practioner monthly, my Pain Care Doctor (anesthesiologist) weekly for therapeutic nerve injections, Psychologist and Psychiatrist both vary between every 4-6 weeks (it was at every two weeks), my Rheumatologist, I see quarterly now but I can call if I need to see her sooner and then last but not least is my Endocrinologist who I see twice a year but I went in to see him three months early so that we could get this LDN started.  I also supplement my doctors with massage, chiropractic and essential oils.

My Endocrinologist has applied for a FreeStyle Libre Glucose Monitoring system.  The fears are that I’ll end up in more hypoglycemic episodes in addition to the high sugars.  I think it’s a product that I’ll love.  So please cross your fingers that I get approved for this device.

In between all these doctors appointments, I try to keep up with something in the house be it dishes, folding laundry, sweeping up dog hair on top of my chronic pain, nausea and almost always present migraine.  My daughter has gotten me to the actual cinema a couple times and the new lazyboy recliners are any spoonies friend for a three-hour movie.

I’ve been more “lupusy” of late, I basically fell asleep on Thanksgiving at the table and then slept for two more days.  For me, the lupusy feeling is more achy joints, constant headache, more nausea (is that possible?), itchy and low-grade fevers, basically the feeling like having the flu but it doesn’t ever go away.

This week on deck, my shots aren’t until Thursday and I have a 2nd Dr appointment that day.  I have only one other this week so I’m feeling like it’s a slow week.  I have a pile of lab work to get done but the majority of the vampires are on strike and the couple times I’ve gone to the other labs, they closed really early because well everyone needs bloodwork.

I had a good day with my daughter

I feel like this blog post was so technical but for me, it’s exciting that all my doctors are on the same page, I may be on the LDN soon.  Now back to the regularly scheduled chaos of getting our house back to pre-flood, my daughter and her friend painted the first coat in the family room and it looks good.

Journey with me … mini2z

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