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.

Powerhouse!

Just wanted to share a post on how an unhealthy person can be a powerhouse when allowed even an inch of freedom from an illness. I completed nearly 6 weeks of schoolwork with an A at the end of the day in just 2 days! How AMAZING is that? Biology has been a course hanging over my head for an entire year of foggy brain days. I finally am beating it! I am winning this one, and I start a Physical Education course on Friday which should get me through another mandatory credit! My tutor is finally coming to keep me on track and we did a lab today and extracted DNA from peas and spinach. Such fun! Then I got to make a brochure on Babesia as a parasite which made me happy. I may have discovered the cause of my increasingly worsening symptoms over the past few weeks. My doctor's nurse called today (the LLMD) and took me off of all my antibiotics that I take orally because my liver test I do weekly to keep him up to date on it's function was extremely abnormal and concerning. We are going to retest in a week and possibly do another ultrasound on the liver if this medicine break doesn't fix the problem. It is a little concerning that I am having liver problems yet proceeding with life full force. My last horse show of this season is in two days, so I have to push through at least for that. Tomorrow I see another dermatologist to discuss the Hyperhidrosis on the back of my left hand and see what he might could do about it. Then I have a long day clipping my horse (shaving and cleaning) for the upcoming show and there will be no time to rest until the evening.

How to Get Back to School

This has been a question I've asked myself for so long, the infamous school challenge. For teenagers with chronic illnesses, school is a daunting chore we must all face at some point. However, it doesn't have to be the end of the world. It has taken me a long time to come to grips with this. My entire childhood encompassed the school career. I struggled to receive straight A's, be number one, form lasting bonds with teachers and student aids, keep involved in sports and after school activities like student council, still find time to read and have friendships, and so much more. The ideal picture was the possibility of graduating early, or with more than enough credits, and progressing to a large career field where I could be top of my class and shine like the star I am down inside. When I got sick in seventh grade it killed me to miss school, to miss my first year being secretary of Student Council, miss the application process of National Junior Honor Society, miss the soccer games, and band practices, and lose so many 'friendships'. My heart broke everyday, and it still breaks as I face the challenge of jumping back into school. I have been unable to process, react, concentrate, and remember like the student I once was for an entire 15 months. My brain just doesn't cooperate with me anymore, however I have to keep one foot in the door and attempt my dream to a high school diploma. I never expected that one day my biggest dreams of 8 years of college would be obliterated and all I would pray for was to graduate. Just to make it through. Call me preppy, but taking an extra year to finish school, being left behind by the class I have grown with since kindergarten, and struggling to just keep a B is very painful. There are options out there however. I am receiving help from Partners in Health to refine a legal 504 encompassing my entire health condition, request IEP special education testing, meet with the school and demand a tutor to help me review and finish one class at a time, and re enlisting to my classes through an online charter school called Virtual Learning Academy (VLACS). If I don't have to be in those halls, judged by those teenagers and confused teachers, than I would prefer not to be. I have done well with a few VLACS courses in the past, and I am pushing to receive a tutor and get through my junior year. There is also the option of completing credits at a local high school that offers a night school program and runs it very much like a college class for adults pursuing high school diplomas or students wishing to graduate early. This is an option, but not a great one as they will not accommodate my medical needs fully. At this point I am thinking I need to finish my biology from Sophomore year by this fall, with a tutor's help. Then I will proceed with receiving help to pick up another 2 or 3 classes online, working out of the house still and trying my best to complete them thoroughly and quickly. If I can manage this, holding myself to a daily schedule, then I will consider either returning to school in the spring part time or picking up a few of those night classes along with the VLACS. Its a step by step process to feel out my success in the near future with this new neurological setback from the combined Chronic Lyme, and post concussion symptoms.