GoFundMe.com

After almost seven years of fighting illness, and being in and out of a wheelchair and even out of state for a second opinion, I still had never set up a financial fund. Asking people who were just as sick as myself, or going through an equal hard time financially for money was just never an option. I still can not be comfortable with the idea of a website where people can go to give money to my cause. I would do anything to be just well enough to work for all my own money, to make ends meet with pure determination and strength. I tried multiple times in a row to work a season at Gunstock Ski Resort, and fell in love with the environment there. I wanted nothing more than to make myself independent and gain experience in the work force that would benefit me later as I hit adulthood and searched for a full time position. I found the days I worked extremely taxing, and needed extra help in the work place as well as accommodations to special hours and shorter shifts. I tried to fight through as best as I could, smiling through the overwhelming pain and paying for it later as I lay in bed in tears. Each season ended a month or more early for me, as I reached a point where tendonitis, neurological symptoms, IV treatments, and surgeries pushed me over the edge. I just wanted to be normal, and I fought so hard to work better and faster than any other employee there. I could not however fool my body into believing I was well. This year, as my season at Gunstock wrapped up early and I went in for open heart surgery, I had no choice but to ask for help. I explored all my options with applying for state aid, even calling a local organization to get ideas for what they could do for me. Partners in Health, described in my last post, suggested I create a GoFundMe.com page. GoFundMe is a public website where a cause can be supported monetarily through anonymous (if you choose) donations that go into an account and can be withdrawn and mailed to the recipient in check form. If it wasn't for my medical insurance ending this week, and my needing more than $3,000 worth of work, with no other options left to me, I would never follow through with creating a page to beg for help. However, in certain cases someone has to be humbled to a point to ask for help, and this is what I've done. I have created the account with the same private name as my Lyme-related Facebook account, Elaina LymeTeen. If you find it on your heart to support my Cardiac Rehabilitation, much needed Lyme treatment, and car repair funding, please visit www.GoFundMe.com/ElainaLymeteen

Partners In Health

I wanted to talk a little about the different programs I have found to help out with my situation. One of the most frustrating moments was when my family and I discovered that we had not been told about local organizations that could have been helping us, after almost four years of being sick. There is a state funded program called Partners in Health that is divided up into regions. Their main goal is to help families of chronically ill and disabled youth in any way possible. When we first heard about the program, we were connected to a program director who came to sit down and meet with us and discuss the program. They were able to sign me up for the program based on my chronic diagnosis of Lyme Disease. During the meeting they talked about what I could use for help from the program, and set me up with specific goals for the year. I set goals of getting my situation settled with school, planning a better management plan for my symptoms, and finding ways to keep me active. When I got my concussion skiing and had all my ski clothes cut off of me in the ambulance, the program helped fund me to get a winter jacket. When I needed help paying the school registration for my night classes at Laconia Academy to get my diploma, and the scholarship I had did not come in yet, they fronted the cost until the program could reimburse them. When I fought with the school about a 504 plan, they came to the meeting with us to fight the battle!

Another piece of the program I got involved with was their family council. Designed for parents of the chronically ill, the family council worked to connect the families in the program and put support systems in place for them. They planned and sponsored fun activities, and addressed local problems to help the community out as much as possible. The meetings were once a month and in the middle of the day, so I went in place of my mother. My hope was to become a voice for the children and work my way towards more advocacy, as well as getting volunteer service hours. They almost helped me get a teen support group up and running called 'The Lyme Lounge'. I started it as a Google group where we connected mainly through email, but did not get a high enough response and it ended up faltering.

After a year of not doing too much with the program, I decided I needed some help and called to schedule a visit with the new program leader. She agreed that resetting my goals was a good idea now that all this heart stuff came into play, and came to my house to figure out what they could do for me. This sweet woman sat down with me for more than an hour discussing my situation and throwing ideas out for each need that I had. She mentioned being able to help me apply for state programs through the Department of Health and Human Services (DHHS), and disability. She even mentioned that they might be able to help my car get on the road again. I sent them a quote about the car, which ended up being $3,000 worth of repairs needed including regular maintenance, and she said they could only help with a small portion (possibly $300). She said if I get a second quote on just the necessities, they could try and get another local program to help fund some of the bill for the car repairs. I'm still waiting to hear about this, as I do not have any money to fix the car so I can get to appointments when I start driving again. Another option she gave me was to fund a summer recreational activity for me this summer. On a first come first serve basis they are trying to get children out and moving this summer by paying for a summer camp type activity. She expressed how they would be willing to work with my specific case, but maybe they could do four weeks of horseback riding or something along those lines. This is a cool idea, but I think I might ask them to instead help with a gym membership for the summer as it would be used more. 

There were a few programs I heard about through Partners In Health that I can talk about separately, one being called the YEAH Council. It's similar to the family council but it's for the kids to get a chance to learn to advocate for themselves and educate adults on their medical setbacks. I will be looking into this but have not tried it yet. I was recommended to create a 'GoFundMe' page, where donations can be made towards a medical fund for me, and I have that up and running now as well (see 'Elaina's Lyme Fund'). I plan to do reviews and educate as many people as possible on the different programs I have learned about to save them the distress of feeling hopeless like I have. Maybe I can help someone to a better place in their journey one day. After all, that is what advocacy is all about.