Monday, February 22, 2016


As many of you know, I have suffered on and off with a debilitating autoimmune disease since late 2006. This year, I received a diagnosis - Autoimmune Encephalopathy. Some other recognized names include: Steroid Responsive Encephalopathy associated with Autoimmune Thyroiditis and Hashimoto's Encephalopathy. I won't go into detail today about the symptoms or the suffering or the treatment, but I did want to post my support to The Encephalitis Society, based out of the UK - because today, February 22, 2016 has been deemed World Encephalitis Day. They asked us to help get our stories out there and wear red today to raise awareness for this disease that patients, loved ones and even physicians still know little about. 

Keep reading below for a press release that was sent out about my story. 
Some other links with info include: 

After being misdiagnosed for almost 10 years, to have support and treatments to try and hope - mean the world to me. I am so thankful to my loved ones, my doctors, God, and my resilience - that I didn't give up and that I won't. 

Press Release:

A Southern California woman is helping in a global awareness campaign about a brain condition that left her with a host of “terrifying” symptoms.

Gretchen Cannon, 35, lost her job and many friends when she was affected by encephalitis, a swelling of the brain.

It would take almost 10 years for her to be correctly diagnosed with the condition as doctor after doctor was baffled by the case.

Now she wants to raise awareness about the condition ahead of World Encephalitis Day on February 22.

Around 500,000 people are affected by encephalitis globally each year, regardless of their age, gender, ethnicity or culture.

For Gretchen, the nightmare began in 2006 when the then fitness competitor became sick after having breast implants – either because of the surgery or the implant materials.

“I had two surgeries to remove them, but still suffered from terrifying symptoms ranging from extreme confusion, memory loss, depersonalization, fatigue, weakness, ataxia, distorted vision, hearing and speech difficulties, anxiety, depression, psychosis, dementia and more.

“I had a seizure, was in a coma, endured countless medical tests and lost my job, many friends and my quality of life.

“I couldn’t function as my old self, needed 24-hour care, and sought help from dozens of doctors that tried to help me but were perplexed by my condition.”

Without the proper treatment, up to a third will lose their life, while survivors can be left with a legacy of challenges brought upon by the subsequent acquired brain injury.

Over the years, doctors found a treatment that helped suppress Gretchen’s symptoms and she eventually was able to work and live a normal life again on medication and with minimal limitations.

However, in 2013, she suffered a debilitating two-year relapse that could not be controlled with her prior treatments.

Gretchen was finally diagnosed, 10 years after her first onset of symptoms, with Hashimoto’s Autoimmune Encephalitis, thanks to her USC Rheumatologist and by travelling to The Mayo Clinic in Rochester, MN, in 2015.

“My symptoms have significantly improved. I now able to drive, read, watch television, and enjoy life a bit more.

“I live at home again but do not know when I will be able to return to work because I still suffer from lingering symptoms.

“But, above all, I am grateful for the diagnosis and relief I have received and want to bring awareness to this terrible condition.”

Gretchen, who was a marketing manager and fashion blogger, is now determined to raise awareness about encephalitis and is adding her support to World Encephalitis Day.

Led by The Encephalitis Society, this year’s event is asking people to “wear something red” on February 22 as part of the #RED4WED campaign to raise awareness and funds.

The public can also vote for the winner in a Short Film, Digital Art and Photography Competition that has attracted entries from across the world by visiting

Dr Ava Easton, Chief Executive of The Encephalitis Society, said: “We launched World Encephalitis Day so people affected by this devastating condition can come together to raise awareness about encephalitis.

“We still have a long way to go to make the public and some health professionals aware of a condition which affects more people than ALS and bacterial Meningitis and yet remains less well known.

“But by having survivors and their families come forward to show the human side of this ‘hidden disability’ can only be a good thing for informing the public about this condition.

“The sad fact is that not many people have heard of encephalitis unless it has happened to them, a family member or friend. We want to change that.”



The Encephalitis Society was founded in 1994, is a registered charity and the only resource of its kind in the world providing direct support and information to people affected by Encephalitis, and to their family and friends. In 2015/16 we provided support and information to around 250,000 people and 169,400 health professionals.  Our website received 190,000 visitors and nearly 700,000 page views from all over the world
The Encephalitis Society receives no Government funding and relies on income raised from individuals, businesses and grant-making organisations.


Encephalitis is inflammation of the brain and is caused either by an infection invading the brain (infectious); or through the immune system attacking the brain in error (post-infectious / autoimmune encephalitis).

The condition is indiscriminate, striking adults and children alike, showing no respect for age, gender, ethnic origin or culture.  Mortality rates are high and in those who survive many are left with an acquired brain injury, the degree and severity of which will vary.  Their difficulties may include cognitive, physical, emotional, behavioural, or psychosocial consequences.


The types of symptoms seen in Encephalitis reflect the specific areas of the brain affected by the inflammation. The range of symptoms and their rate of development vary widely and can make the diagnosis of Encephalitis difficult.

Infectious Encephalitis frequently begins with a ‘flu-like illness or headache. Typically more serious symptoms follow hours to days later. The most serious finding is an alteration in level of consciousness. This can range from mild confusion or drowsiness, to loss of consciousness, seizures and coma.  Other symptoms include a high temperature, seizures (fits), aversion to bright lights, inability to speak or control movement, sensory changes, neck stiffness, or uncharacteristic behaviour.

In autoimmune types of Encephalitis people can present with psychosis and hallucinations among other neurological presentations.  Sometimes these patients can be mistakenly thought to be developing psychiatric or mental health illnesses.

For a more detailed fact file on Encephalitis please see:

#RED4WED #WED222 #ShowYouKnow and #WorldEncephalitisDay

Wednesday, July 22, 2015


Hey world - I just wanted to post an update here since I haven't blogged in quite some time. I have met so many people online that also suffer chronic conditions, so it has given me some support and makes me feel not so alone and misunderstood. Here's me at my home yesterday. I know I don't look sick but my brain & body are suffering minute to minute all day long. I don't need sympathy I just need love and support. I need to know something one day will help me and I will be strong enough to fight till I get it. 

You can read my initial health journey on this site -  it is not all that updated, but it gives the basis of my health problems that started in 2007. 

I was in remission for a long time after a short flare in 2009 and since Dec 2013 to now July 2015 I have suffered greatly - no end in sight yet. I could never imagine fighting this hard, this long. Yet I have no choice. I want some hope back and I am blessed to have a good support system of family, boyfriend and friends. The doctors still don't know what the heck to do because all of my old treatments don't work anymore -

So if you don't mind - please pray and help me with positive thoughts that one day my life will be brighter again and I won't be struggling to survive against this autoimmune disease that debilitates my brain function and sanity. 

Love you all. 

Wednesday, January 28, 2015

January 2015 Update

So the steroid wore off again.. from only Nov-Dec this time. I had a great Christmas and New Years and that was about it. The steroid IV only lasted 6 weeks this time. Dr. started me on Xeljanz last time and does not want to do any more steroid IVs or put me on any stronger medications. I am losing hope. He said if this steroid wears off again, he will admit to the hospital and do extensive testing and have neurologists see me. I am so regretful and worried and depressed. Please keep praying that something somehow will help me achieve remission and quality of life again. 

Monday, December 15, 2014

December 2014 Update

So the steroid wore off again.. from Aug-Nov. I had a bad Thanksgiving and another steroid IV 1000mg Solumedrol. I have been slowly getting better now since Thanksgiving week. If I can get past 3 months again.. that puts me around February. Please pray the steroid and new medications will work. I guess the Quinacrine did not work, but I can't give up. I am seeing a Naturopath now for my hormones, and my Dr. is trying DHEA, 1 week of RAYOS and trying me on XELJANZ.. a new RA treatment. Hopefully it will suppress my immune system enough to stay well. I know steroids are bad for me, and he isnt going to want to keep giving them to me. I also have a 2nd and 3rd Dr opinion scheduled for this week. Prayers please!

Sunday, September 14, 2014

September 2014 Update

I am halfway through another month, and every day is a roller coaster of ups and downs, highs and lows. I feel I am getting better slowly, but I also think the worst and worry and wonder if it will wear off again like last time, if it is only from the steroid IVs.

I pray to God that the Quinacrine will do it's job and send me into remission like the Plaquenil always did before. My doctor said he will not give up on me, but his Neurologist colleague seems like she has. She wanted me to get a brain biopsy, a crazy angiogram procedure, and also see another Neurologist that I saw in the past, that did not help me at all. It is so frustrating because I don't look sick, and when I am clear, I don't think you can even tell that I am sick. And, now my blood work is clean again, so they don't want to give me any stronger medication. Even though they gave me Imuran before - but that hurt my chest so bad. I don't want to get sicker or die from some crazy medication.. but I am willing to take some risks to get my health and mind and life back.

I feel I took so many things for granted.. and all to work out really hard and be some toned tan fitness girl. I would rather be anything now. I don't consider myself vain at all, I am probably more insecure - like I think a lot of women are. So, I got implants in 2006 - thinking that other women did it, why shouldn't I? Then, in 2009, I worked out really hard because I wanted to challenge myself. Learned my lesson. But I also took an antibiotic. So, I think I blamed it on that. Then in 2013.. Almost a year ago.. I risked it all again. My relationship was under stress, and I wanted to do something for me. Although, looking back, I also wanted him to desire me more - hence the working out hard. He even paid for my fitness plan and said he would give me the money for it, if I didn't quit. So, I completed the 12 weeks and it was downhill from there.

I try to be positive and I am lucky I have my therapists and parents and friends that love me and won't let me give up. Or I think I would have, a long time ago. I just want to be well and enjoy life again - start over, with a new perspective and plan.

Feels good to be able to type today and I drove around some - nights are a little easier, but day time I am anxious and the fog and confusion is up and down, so it causes a lot of depression and stress and is tiring. When it hits me, my brain works against me and I compare my state of mind to a previous time and try to analyze things, or predict the future. I know I can't do any of these things, but I think it is a symptom and I am trying to escape it? I am not like that when I am healthy.

From what I have learned along the way, the best I can do is try to know in my heart that I will be ok, look for the positives when I am having a hard time, try to stay calm, and try to stay in the moment. Even if I don't like that moment or it is hard, I have to try to find a positive to get me out of the negative thinking rut.

I am working on it.

Sunday, August 24, 2014

Update - August 2014

I wanted to try to start updating this to record how I am doing since so much has happened and it gives me something to try and do on the computer. Here is a bulleted list of happenings:

  • I have had tons of blood tests, MRIs, CT Scans, SPECT Scans, and Spinal Taps since November of 2013. 
  • I started going to a Hyperbaric Oxygen Therapy center (HBOT) in February. I would sit in the tank for an hour and it would give me 3-4 hours of clear headed relief afterwards. 
  • In March, my Dr. at USC finally recommended me to another Dr. for a 2nd opinion at Cedar Sanai. I was ordered more tests, and they were reviewed by his peer Neurologist there. 
  • They diagnosed me with Cerebral Vasculitis and recommended treatment with Chemo Cytoxan IV therapy. 
  • I started the chemo in April and ended late May. I had 6 rounds (12 weeks) since it was every other week. 
  • By the 2nd chemo, I was feeling better a little bit. By the end, and in June and July, I was driving, moved back home from my parents, was organizing the house, and even went on a celebration trip. 
  • Late July and early August, my symptoms started coming back. I got 3 IV steroid Solumedrol since then. Nothing is helping, and I am getting worse. 
  • I got a new spinal tap and Spect scan and my vasculitis is not showing up now. So, my Dr doesn't want to do anything aggressive like more chemo treatment. I see the Neuro this coming week to review the results, and my Dr. also gave me a new maintenance med to try - Quinacrine. It is supposed to work good with my current drug Plaquenil - which my body seems to have built a tolerance to. 
  • My symptoms are getting worse, the fog, confusion, short term memory loss, depersonalization, anxiety, heart palpitations, no sense of time, etc... I am so scared. 
  • I need this new medication to work. If they won't give me anything stronger and this doesn't work - I will have to search for a new doctor and I really don't want to start over. 
I am praying praying praying - God, please help this medication work so I can get my life back. 
I am so lucky for my support system or I would not be making it through this. 

Friday, July 5, 2013

Jan 2014 Update

Please keep me in your prayers - I relapsed again this November. I need strength and courage to get well from this again and help more sick women again. I had lost hope thinking I wasn't helping - but maybe this is God's way of showing me that I need this in my life and I need Him. Thank you so much.