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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Update on my But I Am Sick page …

I currently have three autoimmune diseases and they are also invisible illnesses.

I currently have three autoimmune diseases ... Click To Tweet

Hashimoto’s Thyroiditis

In 1994 when I was pregnant with my son I received my first autoimmune diagnosis for Hashimoto’s Thyroiditis.  I saw an endocrinologist when I was pregnant and then he dismissed me after.  I’ve only been under my family doctor’s care for most of the time.

Type 1.5 Diabetes or Latent Autoimmune Diabetes in Adults or LADA

In April of 2012, I received a diagnosis of Latent Autoimmune Diabetes in Adults or LADA as a short form.  I was first diagnosed as a type 2 but when I saw my new endo I was then told I was a LADA or a type 1.5 or a progressing type one. I had never heard of it but it’s the adult version of diabetes it just takes everyone a different amount of time for the body to kill the pancreas. I am currently on three different pills to control diabetes and have been begging for insulin for about a year now.

Lupus

In November of 2014, I was finally diagnosed with Lupus SLE.  It had been three years of feeling like I have the flu. No one test or person is the same with Lupus and mine seems to not like my liver. I get only a faint butterfly rash on my face and it comes and goes.  I’ve had times where I’ve slept for two days straight and taking a shower means I have to nap afterwards sometimes. I’ve been delayed being put on Plaquenil because of the liver issue that isn’t an issue.

Fibromyalgia

This is my Rheumatologist’s catch-all for my other symptoms.

Chronic Pain

I have chronic pain in my whole body.  I have it really bad in my joints from lupus and fibromyalgia.  I’m currently undergoing some nerve therapy shots to my back, hips and SI joints.

Chronic Migraines

My migraines have plagued me since I was in my early 20’s.  I got my first one about a month after a bump to the back of my head.  To this day my migraines still occur in that spot.  I’ve written a blog about the story of my migraines.  My current treatment is receiving Botox.  You can view that here.

But I am sick, a diary of my invisible illnesses …

 

Journey with me … mini2z

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Botox for Migraines  – Yes, 24 needles 


Botox for Migraines!  Yes, 24 Needles!

 

Let’s go back in time a bit and I will give you a bit of history on my Migraines.

When I was 24 or so, my then fiancée and I were horsing around and we slipped on the hardwood floor.  I went backwards and hit my head on the dining room table.  OUCH!  It hurt and I had an immediate headache, swelling and bruising.  Almost a month later I got my first migraine and it started where I hit my head.  I was in bed for almost three days and it was brutal because I had no clue what was going on.  I suffered through the next which was only a couple of weeks after that.  The next one landed me in the ER because the pain, nausea, vomiting, dizziness and desperate need to be in the dark was too much.  The ride to the hospital and waiting in the ER was torture but that’s when I was told it was a migraine.  They gave me a shot for pain and nausea along with two IV bags of fluids as I’d gotten dehydrated.  I was referred to a neurosurgeon who I saw in the hospital about three weeks later.  He confirmed that I had migraines but no it could not have happened to me by hitting my head.  I disagree with that but okay.  I had a diagnosis.  I found out that this is what my poppa had suffered from all his life.  I just always knew to be quiet if he was in his room with the blinds and doors closed.

The diagnosis and journey with medication and trying to get the migraines under control before they start was long.  I didn’t get migraines while pregnant with either of my kidlets which was a godsend.  Migraines would come on without much warning that I could tell at the time.  Now, I get an aura (didn’t understand it back then) that I’ve always had prior to migraines.  We had tried Imitrex but it landed me in the ER with chest pains.  Fiorinal C1/4 would become the migraine medication that worked for me along with Gravol, which is an antiemetic.  Migraines have me in my room with room blackout blinds closed tight. ear plugs in with an ice pack on the back of my neck, antinausea medication, a flat ginger ale and pain medication.  Sleep and time are really the only things that work for me.  Over the years, I’ve done all the eliminations to try to find the triggers and the only one that I can find is chocolate.  I can have a couple of pieces, a chocolate bar or a piece of cake but if I have more I’ll pay for it later.  My other trigger is the weather.  It’s any change in the barometric pressure; rain – yes, snow – yes you name it, I get a migraine.

That neurologist all those years ago was the only one I ever saw.  Fast forward to 2014 when my health took an even further nosedive when I started collecting specialists.  I was referred to a pain specialist and neurologist in 2015.  On December 19th I received a phone call reminding me of my Thursday appointment in just a couple of days.  I was pretty shocked because I’ve been meticulous about organising my appointments.  I confirmed it and put it on my schedule.  I was really impressed with the doctor from the get go.  Nice low lighting so as to not trigger migraines, comfy chairs (really important to a person with chronic pain) and short wait.  I was in the appointment for almost an hour and left with a prescription I had to try before my insurance would cover the Botox, a referral for an MRI and prescription for the Botox and a plan to work on getting my migraines under control.

My follow-up appointment went well.  Just a few days later, I received a letter from my prescription insurer that they would cover the Botox and the guidelines.  I called the doctor’s office and yes for a cancellation got an appointment early the next week.  I had to bring $150 cash as OHIP doesn’t pay for the administering of the serum but it’s better than $1000.

The big day came, my mom drove me.  I went to the pharmacy in the medical plaza because the doctor likes the serum to have just thawed.  I guess that’s the best way to use it and the doctor’s preference.  Again, waiting is only minutes.  Then he tells me about the 24 shots and the initial map that he uses on all patients the first time.  The second and subsequent visits would allow for the customization of the injection points.

Then he tells me about the 24 shots Click To Tweet

Side effects were very minimal for me.  I had some pain in my left ear area and will inform the doctor on my next visit.  As for the not being able to move my eyebrows properly, I haven’t seen this issue or for me, it’s a non-issue.

My next appointment is in June and so far my migraines are still present and have not reduced in numbers.  Spring with the weather changes is always a horrible time for my migraines.

Do you get migraines?  Are they affected by weather?  Have you tried Botox?  I hope you enjoyed reading my migraine journey and will share your migraine journey with me!

Journey with me … mini2z

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