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-grandchildjpg
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 12th surgeon I saw and had a C1-3 fusion/decompression done December 6th, 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.

 

 

 

 

 

 

 

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The First Rheumatoid Awareness Day – Febuary 2, 2013

Finally the Rheumatoid Disease is planned for February 2, 2012. Yes, the same day  as Groundhog Day. Why another,”awareness” day for a disease that most of us know about? Wait, do most or even a few people truly know even one fact about RA? Here’s a couple quick ones for you:

What is RA?

An unpredictable, destructive, autoimmune disease. A person’s immune system attacks his or her own body tissues.

Who can get the disease? 

Anyone can get RA. This includes children. Women have a higher chance than any other people group. Seventy percent of those with RA are women. One percent First Rheumatoid Awareness Day Groundhogof the worlds’ population has RA.

What’s the cause of RA?

It’s may be due to genes, environment and hormones.

What are a few of the symptoms of RA?

Joint inflammation / stiffness – Any joint can be effected, however hands and feet are traditionally the first to show symptoms.

fatigue, swelling and extreme pain in ones joints. This commonly begins in the hands, feet, back, elbow and or knees.) Joint pain is usually seen in a symmetric pattern, effecting both sides of the body, although this is not always the case.

fevers

What’s the cure for rheumatoid arthritis?

There is none. Medications to treat RA include painkillers, steroids, disease-modifying / anti-rheumatic drugs, non-steroidal anti-inflammatory drugs and biologics, such as Enbrel and Humira.

As the disease progresses it can lead to complicated and sometimes fatal conditions:

Dry Eye (sclertis) / uventis – The pain could be severe. And if it’s not taken care of, scleritis could create a hole in the eyeball. One form of uveitis, called, “posterior uveitis”, could cause permanent vision loss. Other complications from uveitis include glaucoma and cataracts.

Heart disease / inflamed lining of the heart. Both linked to sudden heart attacks.

Lung pluralism – Inflammation of the lung lining. Painful breathing

Erosion of the spine, which can lead to the deterioration of the cervical collar.  This condition can lead to spinal cord syndrome, which is fatal. (This is how my dear Mother died from this serious disease.)

The sooner one gets diagnosed with this disease, the better. Often, joint damage occurs within the one to two years of the onset of rheumatoid arthritis. Early diagnosis and treatment is essential, in efforts to prevent extensive joint damage.

For more extensive information on The First Rheumatoid Awareness Day, on the disease and on how you can help those with RA,  please contact Kelly Young at the Rheumatoid Patient Foundation. The only charity just for Rheumatoid Arthritis! http://rheum4us.org/press-release-rheumatoid-arthritis-awareness-day/

Thank you for a few minutes of your time. Oh, and thank you Phil for the free promo for a extremely important cause!

 

My interview with Kirsten Walters

Who is Kirsten Walters? A dynamic advocate and patient of Still’s Disease and Rheumatoid Arthritis. She kindly invited me to hang out at her blog for a day. If you’re interested…

http://www.notstandingstillsdisease.com/2012/04/interview-with-carla-jones-author-of.html

Carla Jones

As a child, I just liked waving the palms high over my head while singing with the rest of the kids that once a year song, “There’s a Palm”.   Some of you may recognize the lyrics: “There’s a palm, there’s a palm, there’s a palm for you and me hallelujah…”   These  plants were just great to play with.  Tapping your pew neighbor on the head with a palm, was a requirement to get the full holiday experience.

On Palm Sunday (some refer to it as “Passion Sunday”), starts the beginning of Holy Week, which ends on Easter Sunday.  Christians celebrate the entry of Jesus into Jerusalem, the week before his death and resurrection.

Joyful crowds welcomed him by waving palm branches.  The onlookers also covered the path before him with palm branches.  Some were mistakenly viewing him as a leader who would overthrow the Roman government.  In many denominations globally…

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Teen Charlotte Stacey Hosting Fundraiser for The Royal National Hospital for Rheumatic Diseases

Thanks for coming by Charlotte! Tell us about yourself.

I’m 17 years old and currently studying forensic science.  I have Juvenile Idiopathic arthritis – Polyaricular Rheumatoid factor positive. I was diagnosed 26th July 2011 at the age of 16.  I live in Wiltshire with my Mum and Dad – I also have an older brother serving in the army, who lives in Reading.

Are their special challenges being a teen with RA?  What’s the biggest misconception about the disease?

Sometimes I feel like I’m missing out as a teen, when everyone seems to be having such a huge social life.  Frequently, I’m not well enough to join in or my hospital appointments take over much of my time, so I have less time to spend with my friends.  I feel left out and quite often isolated. It was also challenging when I was first diagnosed because I had my whole life planned out, all my dreams set and I was getting on with life doing everything I enjoyed then suddenly, these thoughts were stopped by my RA. Everything had to change.  I think the biggest misconception is that many in society don’t realize that young people can get arthritis.  They think that it’s the same as osteoporosis, the same type that that most old people get.  Much of society is unaware of the multiple forms of arthritis and believe those with it just have aching joints. In reality, many kinds are much more serious, like RA.  It bothers me that people think that if you don’t look disabled, you must not be ill.  Rheumatoid arthritis is, for the most part an invisible disease!

What do you do for fun when you’re not embroiled in working on homework?

Before I got arthritis, I enjoyed doing sport-Boxing and horse riding as they were my favorites! However these high impact sport prove very difficult with this disease now so I can no longer be involved with them.  I do enjoy some sports and I try to do some form of exercise, that is manageable with my disease. I also enjoy spending time with my friends, reading and just relaxing!

What’s your advice for other teens with RA?

Just keep going! Research the illness and surround yourself with supportive people. Keep talking to the doctors and tell them the specifics about your pain.  Take your medication and do your exercises, stay positive and move up and on!

I understand that you are spearheading a very exciting fundraiser for those with rheumatic diseases. Would you give us the details on this event? How can those who are interested in this  auction, contribute to it?

Yes, this will be the first of many I hope!  I am holding a raffle April 28th, 2012 , for the Royal National Hospital for Rheumatic Diseases in Bath, England. It is the hospital where I am treated. They do an amazing job and specialize in arthritis and similar illness. Many people being treated have to visit lots of different places but everything there is under one roof!  They provide physiotherapy and occupational therapy. The hospital even has their own hydro pool which are hard to come across around here. They also have a gym. Patients can go there on treatment courses where they are taught how to cope and manage with their illness, mentally and physically. Everyone there is really friendly and always go the extra mile to help. The rheumatologists there do a fantastic job and I feel that they really are not credited enough, so I want to draw attention to their work. I am doing this event to thank them for all they have done to help me.  They are truly wonderful people!  I feel it’s important to give something back to those at the hospital.  I am asking the public to donate prizes and so far I have been overwhelmed with kindness! Here are some of the donations that I have received for the raffle:

Pizza Oven – The Templestone
Free course of swimming lessons
Free Gym membership
Family Pass to Bowood
Adult and Child ticket to Cotswold Wildlife Park
Worn and signed Bath Rugby shirt
Signed Player photo from Liverpool Football Club
Signed player photo from Manchester United Football Club
Gift voucher for a hot air balloon ride
Nandos Restaurant voucher
A signed Jacqueline Wilson book.
A signed book by Carla Jones.
Jamie Oliver goodies Jamie Oliver book, Jamie’s Italian apron + bag

Also I have been contacted by the cosmetic company, Lush and they are hopefully going to donate some of their products . The Bath Theatre kindly agreed to donate some tickets nearer the date. A member of Ed Sheeran’s team who emailed me to say they would donate a signed photo. One of my followers on Twitter, has also kindly sent me a donation as well.  I still have a long way to go but the response has been amazing.

Where can my readers contact you to get the details on how to make a donation?

It is with regret that raffle tickets are not for sale for people in the USA because most of the prizes are for local places (gardens, parks, restaurants etc.) However if they wish to donate money, they can visit my “justgiving”, page.  http://www.justgiving.com/Charlotte-Stacey0 Or there is a link on my blog. From this site they can donate online or via text. If you do wish to find out more, it is regularly updated on my blog or you can see my twitter feed. For further information the public can email me at charlottestaceyy@yahoo.co.uk .

What direction will you be headed after high school to follow your dreams?

I want to study criminal psychology, so I shall hopefully continue to  a university to do this. I’m not too sure which university I wish to attend, however I want to stay close to home.  I have a few in mind such as Bristol University, Cardiff University and Derby (which is close to my Grandparents). I am also looking at staying on at college and doing a university level course. But I hope to study Forensic Psychology for this is the career I want to pursue. I had to adjust my dreams a bit due to my RA but it won’t stop me from following them.

Thank you Charlotte, for the inspiring interview.  I think it absolutely fabulous that you are making a difference in the lives of so many. Your gracious attitude is a example for us all.  I have no doubt you will raise awareness to rheumatic diseases, as well as raise a great deal of money to benefit your hospital!


For more information:

My twitter: @charlotte_stace
My blog: charlottesrajourney.blogspot.com
The Royal National Hospital for Rheumatic Diseases: http://www.rnhrd.nhs.uk/

Batman and boating…

http://www.flickr.com/photos/leesscapes/6382480973/