Rheumatoid Awareness Day – Celebrating a lifesaving, neck surgery! My interview with Bridget Seritt.

Bridget Seritt’s doctor told her that she had three to four months to live without corrective neck surgery. It was extremely damaged due to rheumatoid arthritis. Bridget had the operation (the same type my Mother needed), and is back to doing the things she loved! Here’s her story:

How long have you had RA?                                                                                

Bridget with her grandson Silas.

 

After spending my first year in a NYC, ICU, I had undifferentiated autoimmune issues. At 14, I was finally diagnosed with rheumatoid arthritis because my deformity was too much to ignore. Despite positive blood tests, most doctors would not diagnose me because I was too young. I also have lupus, Sjogren’s, and Ehlers-Danlos Syndrome (which is the likely culprit for my neck since my bones were not dissolved). My RA is severe and dissolves bone and tissue like Coke syrup on car paint. The AAI surgery was #8 for me. In addition to the bone and tissue issues, I have autoimmune lung, heart, and kidney problems.

Tell us about the recent cervical collar operation you had and about how you were diagnosed. Was your doctor surprised the damage was from RA? Did he say that your condition was fatal? How was the recovery process?

In October of 2017, I was diagnosed with atlantoaxial instability and myelomalacia. Prior to that date, I’d had mild neck pain – the kind you get after sleeping on your neck wrong, but nothing serious. Thankfully, my friend shared a review of Death by Rheumatoid Arthritis. The first several times I saw the review, I never clicked the article. My incorrect assumption was that the article had to do with heart issues. Eventually, I read the article and later the book. That simple act was the only reason I thought about my neck this past October. (Below – Actual x-rays after Bridget’s surgery.)

Over 6 years ago, I started having arm and hand neuropathy that was diagnosed as either lupus or RA. I believed that diagnosis until I started having Multiple Sclerosis like symptoms summer of 2016. All of a sudden, I had:

• Extreme weakness in hands and arms
• Extreme light sensitivity
• Balance issues
• Trouble forming thoughts and sentences
• Shortness of breath
• Incontinence
• Neck bones consistently “slipping” or subluxing

I asked my rheumatologist for x-rays in October. That poor man. I feel so bad for him. He prescribed PT thinking my neck was just going to have some inflammation and made a quip about “knowing what he was going to find”. At that point, I already knew what he was going to find! Needless to say, the X-rays were done late Thursday night and by 10 am Friday my rheumatologist called me panicked. There was a stat MRI ordered, and by the next Monday, I had my first appointment with a surgeon. My rheumatologist mentioned that I was the first person he had ever seen with AAI. My C1-2 was subluxing a full 10mm, and the spinal cord ended up being compressed/damaged at a .49 ratio, a .4 is paralysis and death. The longest any surgeon said I had before paralysis/death was 3-4 months, so we just caught this in time. Had I been rear ended or fell, I could have instantly passed away, and I was told it could randomly happen in my sleep at any time before surgery. I finally decided on the 12^th surgeon I saw and had a C1-3 fusion/decompression done December 6^th, 2016.

So far, my recovery has been phenomenal. These surgeries aren’t meant to make someone brand new, but to stop the person from further damage and death. I was expecting much worse, and am pleasantly surprised at how easy of a surgery this was. My knee replacement was much harder to deal with. So far, my fusion looks good and the incision has healed quite uneventfully. It will take the fusion roughly 6 more months to take, so the recovery is a slow one. The hardest long-term parts to this surgery are:

• Learning to talk, breathe, and swallow
• Spasms
• Gaining strength after atrophy
• Figuring out how to use your neck and head in situations like driving

I was back at work part-time 2 weeks after surgery and full-time within 4 weeks. None of my jobs are terribly physical.

Post-op: symptoms are significantly improving. My MS-like days are getting fewer and farther between and life is returning to normal! Some of the cord damage is likely permanent, but I used 10mg/kg of cannabis for 30 days prior to the surgery. I still have arm neuropathy, but not as bad. My forminial openings are also damaged, and I will have neuropathy for life. To control pain and stimulate healing, I used phytocannabinoids. After 1.5 weeks, I was off all pharmaceuticals for pain and spasms and healing ahead of schedule. My surgeon is actually very surprised at how well I am healing.

What helps you the most with managing your RA symptoms?

• Family. I have an amazing support system with my husband and children. Without them, I’m not sure how I would get by!
• Community. We have a strong patient community here, and everyone works to help each other out. At any given point, someone from our community is asking “what do you need” and that always provides inspiration to keep going.
• Cannabis. I’m on my second to last biologic, and this one didn’t work until I added in cannabis. Once I added 5mg/kg base, my RA went into remission until I lost access to my dose due to state over-regulation. I’m off 9 prescriptions and lost 60 pounds because I can actually walk again!

What’s your advice for those newly diagnosed with RA?

Connect with patients and stay positive. These diseases don’t pick who they afflict and are not personal. It is possible to be in pain 24/7 and still enjoy life. The more you connect with other patients, you realize that no one is alone in autoimmune disease. Don’t get so wrapped up in what you’ve lost that you don’t LIVE your life. Enjoy the small things and often. Smile at flowers, laugh at life and maintain that humor.

You also realize very quickly that the doctors don’t have all the answers, and you have to be your own advocate. I know of rheumatologists that refuse to acknowledge that RA can damage a neck or that it can be a fatal disease. It is OKAY to fire doctors that don’t listen.

I know you’re a tremendous advocate for those with RD and those with pain management challenges. What are you upcoming advocacy goals?

I’m all about raising awareness for autoimmune arthritis diseases and medical cannabis! In addition to sharing my story, I have been encouraging everyone I know to get their necks checked. So far, 10 of my friends have gone for the cervical x-ray series just since getting diagnosed myself. This year, my patient based non-profit, Canna-Patient Resource Connection, is putting together a mobile resource center to bring holistic therapies and education to patients throughout Colorado. I specialize in phytocannabinoid therapy education specific to autoimmuners, and have a group of roughly 2500 that seek advice from all over the world. My blog, Ganga for Autoimmune Arthritis chronicles my journey since 2014 with autoimmune arthritis and cannabis. http://gangaautoimmuner.blogwritr.com/

Bridget Seritt is a mother of 3, and grandmother of 2. She started cannabinoid therapy in 2014 for 3 major autoimmune diseases after difficulty finding pharmacies that could fill her prescriptions. By 2015, Mrs. Seritt was off 9 prescriptions and had lost 60 pounds. As a result, Mrs. Seritt founded Ganga for Autoimmune Arthritis and wrote The Ganja Guide to Autoimmune Diseases: Getting Started with Medical Marijuana http://amzn.to/2k5pPQH. Over the years, she has mentored hundreds of autoimmune patients through the first stages of learning about cannabinoid therapy. Mrs. Seritt went into a controlled remission for a short period of time on high dose cannabis. Understanding the costs involved with cannabinoid dosing schedules, it became clear that preserving grow rights for patients was the only way to promote affordable and compassionate access.

After Colorado started talking about legislation against patients, Bridget connected with the cannabis community to unite its citizens. During that journey, she met Aisha Sawyer and helped to form Canna Patient Resource Connection.  Together, they have worked hard to make sure that patients are aware of how their local municipalities can affect their affordable access to cannabinoid therapy.