The name, Seven Slices of Lyme represents the importance of us Lymies sticking together! By ourselves we are sick, broke and alone, together we are able to accomplish what seems impossible to accomplish.
The emotional support is a Lyme survival necessity. Suicide in the Lyme community is frequent, I would wager more frequent then with any other disease. I never really understood why someone would contemplate this permanent, unchangeable act until I became totally disabled. I never considered it myself, but I have children, a wonderful husband along with family and friends who support me. Still, even with all I have to live for, I completely understand why someone who didn't have these things would make the decision to end their suffering. To be so sick you can't leave your house, can't watch tv, can't read a book, can't have a conversation is more then anyone should have to bare. This isn't just for days, but it can be for months and years. To add debilitating pain to all of the other symptoms and then the fact that treatment is more expensive then most people can afford makes suicide, for many, look like the only option that contains HOPE. We all need hope to move forward in life, and if suicide appears the only way to end the misery then suicide become the only source of hope.
The support of Lyme sufferers and each others attempts at advocacy is heart warming. I am amazed at what so many house bound and bed ridden patients are able to do just from their computer. I am even more amazed at how some of these people actually leave their home to attend Lyme Awareness functions, fundraising events, protests, and vigils. We are a group in desperate need of help, but as of yet, we are on our own in raising awareness and asking for change. We are determined and unrelenting in educating our friends and family. We continue on despite loss of relationships, criticisms, and a decline in our health from the stress and energy that goes along advocacy.
Supporting each other financially is where we struggle the most. It's financial support that we wish we could receive from those outside our community, those of you living in the world of good health. You see, if we are to get well, we need to pay for appointments, pay for medicine, and pay for supplements. Many of us have two or more immediate members of our family being treated. Most of us have food allergies or sensitivities that make even paying for groceries an overwhelming burden. This is where the lyme community really struggles because so many want to get well so they can do more to support others but are stuck in the shadow of dealing with the immediate needs that come with just trying to stay alive.
Personally, I am currently finding it difficult to talk to people who are sick and telling them about Lyme because I am sending them on a journey that seems impossible. I mean really, you know someone who is sick, barely keeping their head above the water financially, and I plan on telling them, "Hey, I have the possible answer you've been looking for...but sorry, it will cost x amount of dollars to simply get the right testing, and x more amount of dollars for years into the unseeable future to be treated..oh, and by the way, FINDING a doctor to diagnosis and treat you will take alot of time and energy, you will have to wait months for your first appointment and maybe travel hours to even get to the doctor. " Makes me often say nothing to others who I think may be seriously ill with Lyme Disease and/or co-infections.
So, for now, I am going to focus my financial support on those of us who have taken the actions steps to get help. We have done what we needed to do to come up with the funds to be tested and diagnosed. Many of us, are tapped dry. We have used up all our financial resources, even been given community support, but here many of us sit, unsure of how much longer we can pay for the medicine, appointments and supplements that our keeping us alive. How can we support each other financially if we can't even support ourselves? How can we think about others when we are scared about what will happen if we stop treatment.
I have been thinking about this a lot. One thing that came to mind is the 1 or 100 rule. Now usually, I use the 1 or 100 rule to teach students the concept of why there are some rules out there that may not make sense but are important to keep order. For instance, in a classroom, if it's not ok for 100 kids to get up and walk around without permission, then it's not ok for 1 kid to do that. So, what if we turn this rule upside down and apply it to the lyme community. What about saying: What 1 Can't Do, 100 Can!
Think about it. What if once a week, ALL of us Lymies donated $1 to an online cause. One week $1 could go to help with the financial costs of protests, the next week $1 could go towards someone's gofund me page. There are thousands of us online, so if we all did this then $1000's a week would go towards financial support of the lyme community!
Seven Slices of Lyme is the attempt of two families who have been blessed with help from our community, to give in return. Not going to lie, the seven of us are still in dire need of financial blessings, but we also know there are many of you in more need then we could ever imagine. So, it's our commitment to share a percentage of all we raise with other families who need support. The month of October we want to help Dawn. Here is her gofund me page: http://www.youcaring.com/medical-fundraiser/help-fund-my-late-stage-chronic-lyme-disease/114247 . Now, we aren't raising a lot of money, not yet anyways, but what if everyone who read this blog gave $1 and then shared what you did and why on their social network pages. One dollar then could turn into many dollars!
I strongly encourage you to take up my challenge, one dollar a week, and lets see how far that money goes!
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