We’ve moved our GoFundMe site, to this one, as it’s only for medical bills, doesn’t affect my mediaid and medicare health insurance eligibility and goes directly to the vendor. It’s also tax deductible. (www.gofundme.com
It’s St. Patrick’s Day 2019 and we’re IRISH! Bringing in the good luck and healing vibes this year with many thanks to our family, friends and all our donors. I’m continuing to heal – physically and emotionally!
I just posted some videos I’d kept to myself througout the ordeal. Now that we know there’s been a happy ending, I’m ready to share. This has been so, so hard on all of us. I wasn’t really able to share how hard it was because I just had to get through it. Now, I’m going through a psychological adjustment where it’s hard to look at everything’s that happened and process it. In order to fundraise, I’m looking for folks to refer me to speaking engagements or host me in your area. For more info on my ordeal, read on. Otherwise, enjoy the updated videos and pics.
Lots of love and thanks!!!!
I am having a miraculous recovery from a brain and spinal cord illness/injury that caused paralysis and damage to my brain that has all my doctors speechless. They can’t believe I’m walking again, let alone ski instructing and going to law school, with a little medical school on the side. All of this has been incredibly hard emotionally and I never thought I could bear that much physical pain, but thankfully, it has subsided. Brad, Devon, my Mom and Dad truly saved me and cared for me daily until I could take care of myself.
I’m now 2.5+ years out and have come so, so far. I still have some damage to my organs, but I’m managing just fine. I do need ongoing medical treatment and get drug infusions to keep my immune system from randomly attacking me, but the side effects are very minimal so far. Many of the prescriptions I need are life saving, but are not covered by insurance. I go to the only specialty center in the country for my condition 4 times a year, in Baltimore at Johns Hopkins. I also go to 3 other hospitals in our area, depending on which specialty doctor I need and I’m hoping to see a premier specialist out west that is highly recommended for auto-immune disorders.
I still can’t believe that I have survived 4 potentially fatal disorders that struck all at the same time, but I’m determined to make my recovery worthwhile. I’m going to law school to help others with rare diseases and who are legally disabled, while still working toward better pregnancy and breastfeeding rights, like I was before this all happened. See my site. www.RustikEvents.com
Please sign my guestbook to say hi and if you can afford to, please make a donation and share my page on FB and via email to your friends. We are hoping to raise enough funds just to pay my current medical bills. I’m hoping I can eventually go back to work and make a living as a legal advocate so we can live as a family again without financial help from others. My condition is very unpredicable and serious, but we are taking it one day at a time, sometimes just by the hour. Thank you so much for reading, for your donations and for keeping us in your prayers.
To learn more about what happened with my strange and rare illness and equally rare recovery, read on.
In June of 2016, I was bit by a black fly after a day of hiking and swimming with my 4 year old son and our friends. I felt incredibly ill after the bite and went to the Emergency Room, but got no help. I started to feel better and went home. Then a week or so later, I felt really sick again. I went to a walk in clinic and was told to take more Tylenol for my headache. I kept working my two part time jobs, but within 3 weeks I was back at the emergency room with a high fever and terrible headache. I thought I just needed fluids and was dehydrated. I waited about an hour to be seen, and then once lying down, never got up again before I was transported by ambulance to a higher level hospital. I was (temporarily and partially) paralyzed, affecting all 4 limbs and some of my organs. I could move my arms I think, but I couldn’t use them, they were so weak.
I was initially diagnosed with:
Transverse Myelitis (TM) and
Acute Disseminating Encyphalomyelitis (ADEM)
The cause was thought to possibly be from an every day virus that just savagely attacked my brain and spinal cord.
After three weeks, while in an Acute Care Physical Therapy Rehab, I was able to start taking steps again with the help of a walker and two people holding onto a waist belt to assist me. I lost so much weight and was down to 106 pounds. I was in various hospitals for 7 weeks and was away from my husband and son for 10 weeks, with weekly visits if I was well enough.
I was told that I would have a full recovery and just needed aggressive physical therapy. After 5 and half months, I was able to start snowshoeing and even cross country ski in my back yard! I still had a lot of healing to go, but was hopeful.
Then in January of 2017, I had a set back and ended up back in the hospital for most of the month. Actually it was New Year’s Eve of 2016, my mother’s birthday. She spent it with me in the ER for 13 hours. My diagnosis was corrected. The cause of the damage and rare neuro diagnoses was from a really rare form of Lupus, not a virus.
I’ve chosen to fundraise with Help Hope Live in part because it’s tax deductible. The money doesn’t go to me directly, it goes to my medical bill vendors, so it doesn’t affect my Medicaid status – which is based on income. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.
For more information, please contact me at (603) 630-6382 or Help Hope Live at 800.642.8399.
Thank you for your encouragement and support!
March 17, 2019
July 5, 2017 – Missing my friends in North Conway, NH from Frontside Grind cafe, International Mountain Equipment and my crew. Kelly was her name!!! It was so great catching up with her on a visit last summer.
March 16, 2019
JUNE 1, 2017 – Doing yoga at home with a unicorn! I had started doing 3 min of yoga at home, before I was really ready to do much outside the house. I worked up to 5 min then 10 min then 20 then 30. I wasn’t ready, but I signed up for a 6 week yoga series for people who have had brain injuries and it was amazing!! LoveYourBrain.org! This is what led me to take classes at medical school and law school. My teacher was a PhD student at Dartmouth in Public Health. Just finished my first class there!
March 16, 2019
At the Kennedy Krieger International Center for Spinal Cord Injury, Baltimore, MD – May 17, 2017. This was a pay out of pocket expense for 2 weeks of therapies, 5 days a week for about 4 hours a day. I was exhausted!!! But it was worth it! Such great people there – so grateful. This was a turning point for me. They showed me how much more I could do and spotted me so I wouldn’t fall. Couldn’t have done that at home with my regular physical therapists in a 45 min session, 2x a week.
March 16, 2019
Wow, here are some tough videos for me to look at taken during my recovery in different stages. I’m doing so well now, physically, emotionally, cognitively, etc. This is one when I was quite heavy and bloated from medications in March 2017 – 2 years ago. I wasn’t in to posting too much on FB, just because I didn’t want to live my life through FB and because the people who really cared about me were all there for me.
After surgery – youtu.be
October 15, 2018
Back in December of 2016 or so, I got a super awesome message from some amazing supporters! One I’ve never even met! They are none other than…Scott Barber, who filmed, directed and edited some Public Service Announcements for my breastfeeding advocacy work and his bud, Kevin Pearce, former professional snowboarding champion who surpassed his rival Shaun White until a horrific crash left him with a Traumatic Brain Injury. Kevin is the subject of the documentary, The Crash Reel – www.youtube.com and co-founder of where I’ve done some great yoga with other brain injury folks – LoveYourBrain.org. Scott told Kevin about me and they sent this! I used it to get me through the worst of the physical therapy, knowing how much Kevin has gone through.
October 15, 2018
TREADMILL PLANKS – Wow, check this exercise out. I learned it from Alyssa, my Spinal Cord Recovery Specialist at Project Walk, in Stratham, NH. I have come a long way from not being able to move in bed or cut my own food! Almost 2.5 years out now! This is me at the Vermont Law School fitness center.
May 6, 2018
Had a scare recently. Was back in the hospital for 3 days. At first it was thought to be a Lupus flare. I was really bummed because I haven’t had one in about a year and a half and have been trying sooo hard with diet, meds, supplements and hardcore physical therapy. Happily, it was later determined not to be a lupus flare this time, but a reaction to one of my infusion meds from several months ago. It wiped out my white blood cells temporarily. I was put in a room in the cancer ward that has sanitized air for those who are at risk of infection. It was nice to see some of the same nurses I’ve had from the beginning and it was my third time in the cancer ward, even though I don’t have cancer. But it was super nice to get out and go home and be with Brad and Devon again. I’m doing really well now as my white blood cell count goes back up. I’m due for more of this drug by infusion in July, so me and my docs have to figure out if we should do it again or not. No way to know if it will happen again. Thank you all for your support and any donation of any amount is much appreciated. THANK YOU!
April 17, 2018
Click on our photo album cover to see more pics!
April 17, 2018
As of April 2018, I’m finally back to my pre-catastrophe weight and I’m getting stronger. Really working on my endurance. I’ve been able to go indoor rock climbing and can make it to the top! Devon is my climbing partner. I can run a bit, ride a bike, swim and hoping to train on the mountains soon!
November 15, 2017
Thank you for your donation! I won’t be able to see it posted until a week or so later, so please accept my apology for any delay in acknowledgement of your generosity.
November 9, 2017
ZOMBIE WALK IN THE PARK – This was me in Septemeber 2016! The illness/injuries occurred in June of 2016. This was really how my legs worked. I couldn’t walk any faster or better and each step was an effort in balance and fortitude. The arms, which I would often joke about, were still tough. I often didn’t move them when I walked. Remember Elaine from Seinfeld? Her co-worker, Molly Shannon, was annoying her because she wouldn’t move her arms when she walked. That was me! I had to walk with ski poles just to force me to move my arms. The ski poles I used were David Fried’s from the 80’s!!! For some reason, my mom still had them in her garage. I had so much nerve damage then, and pain. I was on a ton of heavy drugs every day, all day.
Photo Galleries (1)
February 16, 2018
Hi Katie, Love you! Hope to see you soon! Jessie
December 9, 2017
My heart goes out to you all, Katie. I'm sorry you've had to endure such hardship, but I am amazed at your strength and steadfast determination to stay positive. I love you.
November 8, 2017
Lots of love and wishes for a full recovery Kate!
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