Here's a Door, Lyme
Donation protected
When I’m sick, I think I make it hard for anybody to notice. I smile anyway and say it’s all ok. Or I put my head down and/or disappear. And I don’t do a lot to dispel any assumptions. It’s at least in part an introvert thing.
My struggle has gotten so real that I’m going to take a huge leap here and ask directly for help.
I’ve been sick for years. Not one, not two, not three.
I was too sick to work full time starting around four years ago. But the sick started before that. It seemed to be a thyroid disorder and then maybe the beginnings of an autoimmune disorder. Then, when crippling hip pain and more intense brain fog set in, I dug deeper with specialists and WHAM, there it finally was. Lyme Disease.
A little over two years ago, I started long-term treatment. Because the initial Lyme infection from many years ago did not come with the obvious bite of an engorged tick or a bullseye rash, it had time to fester and make itself at home in my joints and muscles and tissues. I sucked it up all that time, unknowing, because what else can you do?
This long-term treatment was a (temporary) success. I had terrible bouts of vertigo, and other stuff, but I was getting my life back, and super grateful. So grateful that the enormous financial strain of the years didn’t get to me too much. At least not all the time. What is money without health anyway? We just budgeted like our lives depended on it.
Our health insurance is expensive. Yet the services covered have slipped away and into a very high deductible. The CTs, MRIs, and emergency room visits (even for collapsing, and yes, I’ve collapsed) are no longer a copay. It’s a break the bank deductible. We’ve been paying the deductibles year in, year out. We’ve been paying out of pocket expenses for bloodwork, medications, supplements, chiropractic care— everything needed to keep me from curling into a ball.
The long-term treatment was rough but it worked and I had around six months. The best six months feeling like I had survived something huge. I started thinking about all the stuff I’d been missing. I was ready for all of it again.
Then, after those six months, I got sick again. I’ve been sicker than before, sick so sick, and at first in denial. Then anxious, then paranoid. What a process. I’ve kept showing face for my kid because she’s incredible and I’m going to win spirit over body any day to witness her theater performances, soccer games, and sweet moments that are meaningful to our introverted little fam. We’ve been taking care of each other and holding on. (I’m so lucky in this love.)
I recently found a functional medicine practitioner (thanks to the encouragement of my lovely cousin) that has helped tremendously. She did many (expensive) tests that led me to more diagnoses. Lots of results. Lots to take in. Now I’m on an (expensive) protocol to try to get my system back on the rails. Thank all that is holy for her because before this, my immune system was shot, my kidney function low, and I won’t drone on and on about the symptoms that rattle me. Let’s just say she turned the tides. My systems are not up to par yet, but maybe in time. I’m hopeful.
I also found a new treatment for this Lyme I can’t beat, and it’s $4,000. That’s out of pocket. There are a lot of blood and saliva tests throughout the treatment, and there are specialist fees ($50 a visit and lots of visits). This on top of everything else I mentioned above.
I have known about this treatment and I haven’t done it because I’m in too much over my head with medical debt already. And again, I have not been able to work full time in years. We have been scraping by, not asking for the help we need, because it’s tough to ask. It’s not how we do, you know? Keep your head down and pull up your bootstraps and all that. I don’t have a dad to turn to, and my mother and her husband have their own medical issues to deal with thousands of miles away. There’s no easy answer.
The ask makes me cringe, and it is even embarrassing. I don’t want to share all the mess. I don’t really want anyone to know what feels like intimate things about my health.
I didn’t ask the first year or second or third. But it’s piled up. It’s too piled up. I need help. And I think it would be almost too good to be true to ask for and then receive support. I’m hoping it’ll even feel good to just say out loud that I’m sick. I don’t want to be and I fight it with everything I’ve got. But it’s reality.
With no exaggeration, any note, any hug, any donation, any gesture of support would mean the world. Really, the world. That’s what it means to have family and friendship in the hard times. It’s everything.
Love you, and thanks.
My struggle has gotten so real that I’m going to take a huge leap here and ask directly for help.
I’ve been sick for years. Not one, not two, not three.
I was too sick to work full time starting around four years ago. But the sick started before that. It seemed to be a thyroid disorder and then maybe the beginnings of an autoimmune disorder. Then, when crippling hip pain and more intense brain fog set in, I dug deeper with specialists and WHAM, there it finally was. Lyme Disease.
A little over two years ago, I started long-term treatment. Because the initial Lyme infection from many years ago did not come with the obvious bite of an engorged tick or a bullseye rash, it had time to fester and make itself at home in my joints and muscles and tissues. I sucked it up all that time, unknowing, because what else can you do?
This long-term treatment was a (temporary) success. I had terrible bouts of vertigo, and other stuff, but I was getting my life back, and super grateful. So grateful that the enormous financial strain of the years didn’t get to me too much. At least not all the time. What is money without health anyway? We just budgeted like our lives depended on it.
Our health insurance is expensive. Yet the services covered have slipped away and into a very high deductible. The CTs, MRIs, and emergency room visits (even for collapsing, and yes, I’ve collapsed) are no longer a copay. It’s a break the bank deductible. We’ve been paying the deductibles year in, year out. We’ve been paying out of pocket expenses for bloodwork, medications, supplements, chiropractic care— everything needed to keep me from curling into a ball.
The long-term treatment was rough but it worked and I had around six months. The best six months feeling like I had survived something huge. I started thinking about all the stuff I’d been missing. I was ready for all of it again.
Then, after those six months, I got sick again. I’ve been sicker than before, sick so sick, and at first in denial. Then anxious, then paranoid. What a process. I’ve kept showing face for my kid because she’s incredible and I’m going to win spirit over body any day to witness her theater performances, soccer games, and sweet moments that are meaningful to our introverted little fam. We’ve been taking care of each other and holding on. (I’m so lucky in this love.)
I recently found a functional medicine practitioner (thanks to the encouragement of my lovely cousin) that has helped tremendously. She did many (expensive) tests that led me to more diagnoses. Lots of results. Lots to take in. Now I’m on an (expensive) protocol to try to get my system back on the rails. Thank all that is holy for her because before this, my immune system was shot, my kidney function low, and I won’t drone on and on about the symptoms that rattle me. Let’s just say she turned the tides. My systems are not up to par yet, but maybe in time. I’m hopeful.
I also found a new treatment for this Lyme I can’t beat, and it’s $4,000. That’s out of pocket. There are a lot of blood and saliva tests throughout the treatment, and there are specialist fees ($50 a visit and lots of visits). This on top of everything else I mentioned above.
I have known about this treatment and I haven’t done it because I’m in too much over my head with medical debt already. And again, I have not been able to work full time in years. We have been scraping by, not asking for the help we need, because it’s tough to ask. It’s not how we do, you know? Keep your head down and pull up your bootstraps and all that. I don’t have a dad to turn to, and my mother and her husband have their own medical issues to deal with thousands of miles away. There’s no easy answer.
The ask makes me cringe, and it is even embarrassing. I don’t want to share all the mess. I don’t really want anyone to know what feels like intimate things about my health.
I didn’t ask the first year or second or third. But it’s piled up. It’s too piled up. I need help. And I think it would be almost too good to be true to ask for and then receive support. I’m hoping it’ll even feel good to just say out loud that I’m sick. I don’t want to be and I fight it with everything I’ve got. But it’s reality.
With no exaggeration, any note, any hug, any donation, any gesture of support would mean the world. Really, the world. That’s what it means to have family and friendship in the hard times. It’s everything.
Love you, and thanks.
Organiser
Kimberly Morgan
Organiser
Newbury, NH