As many of you know, our friend Julie has had a very rough year since September 2024 battling multiple health struggles including worsening MASH cirrhosis not caused by alcohol (diagnosed in 2012) which is now decompensated, active secondary progressive multiple sclerosis (diagnosed in 2005 as relapsing remitting multiple sclerosis), Sjogren's disease (diagnosed in 2014), and severe ulnar neuropathy in her left arm that was operated on this past Friday, September 5th.

She has been to countless appointments with doctors who have struggled in both making changes to her diagnoses and creating treatment plans that would alleviate the pain and discomfort Julie has been in over the past year. The multitude of doctors have struggled in communicating with each other to help come to the bottom of the troubles that she has been having.

Julie traveled for the second time to a week-long visit with the Mayo Clinic in Minnesota at the end of July. She had consults with internal medicine, neurology, rheumatology, and had a hepatology transplant consult as well. Some of her liver issues now that she has due to the decompensated are multiple varices, portal hypertension, and hepatic encephalopathy which created the necessity of a recent ER visit two weeks before school started.

She has also begun working closely with the University of Rochester in New York, moving all of her specialty physicians, including her hepatology, neurology, and rheumatology care to them. The University of Rochester is the closest liver transplant center to her home.

The recent surgery on her left arm, which had been canceled in early August and rescheduled at the last moment, was to correct severe ulnar neuropathy which has caused numbness, pain, and loss of fine motor movement with some of her fingers since Thanksgiving 2024. The local orthopedic surgeon who performed the surgery on Friday is uncertain if it will fix the problem 100%, but there is hope to give her some pain relief. He has told her that it will take up to 18 months to heal completely and see the maximum results from the surgery.

Upon beginning the surgery, the surgeon discovered after making the incision at her elbow that her ulnar nerve was in an hourglass shape that needed to be carefully straightened out before they shaved down the bone on her elbow and relocated the nerve to the other side of her arm. She is currently in a splint that keeps her arm at a 70 degree angle and she is wrapped from her shoulder to her fingers in a supportive bandage. She must keep her arm elevated above her heart at all times to promote healing and help keep the constant discomfort and pain from the surgery at bay.

Julie wakes up exhausted every day. She has missed a lot of work during the last school year due to appointments, tests, and excruciating pain. In mid-March she began using intermittent FMLA leave which kept her job secure but did not pay her for any days that she wasn't able to work. She earned $10,000 less last year due to using the FMLA leave but, as you know, the bills keep coming and need to be paid and the flights to Mayo Clinic and hotel reservations were an additional expense she had to cover.

A week before school started this September, Julie had brain MRI’s done that showed 9 new lesions and the discovery of some smoldering lesions. Despite taking a monthly injection of Kesimpta for her MS to prevent new relapses there are no treatments at this time for smoldering lesions and little can be done for most of her daily symptoms.

She is now unable to drive, has swallowing problems, uses a rollator or cane to get around due to her leg weakness and numbness in both feet, she has cognitive and vision loss issues, constant dizziness, coordination problems, and she deals with crushing fatigue.

After the results of this new brain MRI and after getting almost no relief from any of her many ongoing symptoms since last year, Julie made the incredibly difficult decision to retire at the end of September. This was not her intended plan of action but she has decided she needs to prioritize her health and wellness and work on giving her body the time it desperately needs to rest and recuperate. She is physically, cognitively, and emotionally unable to do the job that she loves.

Despite this incredibly difficult last year, Julie is always trying to look on the sunny side of life. She tackles each day with a smile and continues her pursuit of answers, symptom relief, and updated treatment plans. She gets around the school building with her purple rollator getting to know the newest students in her UPK and Kindergarten classes.

It has taken a lot of convincing to allow Julie to let me start this fundraiser on her behalf. As you know, she is a private and resourceful woman who does not like to ask others for help. I know that without this fundraiser, she would find a way to make her situation work. I am hoping to raise enough money to ease the financial burden that Julie is currently facing and show her the support that she has given to many of us.

Julie is in the process of having her washer and dryer moved up from the basement to her spare bedroom for safety reasons as stairs are too difficult for her to navigate. This requires both a plumber and electricians to make the necessary changes to that room so this can happen. She is eventually hoping to have her old tub and shower unit removed and replaced with a walk-in shower with a seat and grab bars. She is also exploring options to have a ramp added to her home so she can enter and exit safely.

Julie is lucky enough to be able to start receiving a monthly pension at the end of October from her work with the NY state retirement system for teachers. For the last 28 years she has been employed at both of her original student teaching placements. First, she spent 3 years teaching in Oswego’s Catholic schools until she made the transition to work for the Hannibal Central School District for the past 25 years.

She is thankful that she will have this source of income to help pay her bills but it won’t cover all of them no matter how she has crunched the numbers and discontinued services. She has many years left to pay on her mortgage (which is cheaper than most local rents), she will be paying a monthly premium to continue with her health insurance along with the co-pays for her many medications, doctor visits, and physical therapy appointments, along with the other bills that have to be paid, and groceries and pet food that needs to be purchased.

Julie is happiest when she’s at home with her cats, her Kindle books, and her comfy bed. She doesn’t take vacations, wear fancy clothes, or cook fancy meals. She enjoys spending time with her friends, both local and international, and communicates with them via text, Facebook, video chat, and actual phone calls!

If you’d like to make a donation to help Julie or share this information online she would be so grateful. All funds raised go directly to Julie and her needs.