Could use some positive thoughts (LO is fine!)
Apr 8, 2015 11:04:01 GMT -5
Post by userdeleted on Apr 8, 2015 11:04:01 GMT -5
So, a couple of years ago I was diagnosed with late stage Lyme disease. It was a long ride on a diagnostic merry go round before I finally got an answer. I saw multiple neurologists, internists, infectious diseases doctors, cardiologists, a pulmonologist, an immunologist...you get the point. I'm one of the "lucky" ones whose immune system finally got with the program and returned a western blot test that even the CDC acknowledges as positive. So, I at least know what's happening now.
I've been receiving treatment since then, including having 2 PICCs for IV antibiotics - one of which I had until third tri, when I had to have it pulled due to complications. I've been off treatment since. I've been doing mostly okay - holding my baseline and able to do the things I need to do to take care of LO. That's the most important thing.
But symptoms are creeping back in pretty rapidly again. I'm so stiff and sore by the end of the day, I can barely walk sometimes. Muscle fasciculations are returning in force, tingling in my legs, weakness, dizziness. I have to be careful about when I choose to go up the stairs to the nursery because I only have so many trips in me. I don't know how many on a given day - I don't know until I try and can't do it. Even so, I'm much, much better than I was two years ago, so I'm very grateful for the ground I've regained.
The point to this is that I'm going back to restart treatment tomorrow. They told me that after I delivered, treatment would need to get more aggressive. They wanted to re-try some meds I'd reacted to in the past, in addition to adding things that wouldn't have been safe for a developing fetus. I'm scared of some of the meds. I usually feel worse for a while when I re-start as the bacteria die off. I'm also afraid it won't help as much as I want it to. I know, rationally, that some of what I live with is my new normal, but I have strong opinions about how much. Ha.
This has been particularly hard to swallow, as I was very active and fit before this happened. I mentioned in another thread that I rode a century ride (100 miles on a bike in a day) in 2011. I was already experiencing symptoms and seeing a doctor to try to figure out why at the time, but within 6 months of completing the ride, I couldn't even get on my bike. So it's been a precipitous drop in physical ability and it all frankly really sucks. It affects how I interact with LO and what we do day in and day out. But I try to live mindfully and stay positive. I do as much as I can on any given day, because I refuse to give in. So back to treatment I go.
Any positive thoughts you could send my way for healing would be very much appreciated. I also type all this so you know what's up, as it's likely to be a bumpy ride.
Thanks for listening.
tl;dr
Sick
Starting new treatment that's going to make me feel worse and potentially be dangerous
Keep on keeping on
Happy thoughts please!
I've been receiving treatment since then, including having 2 PICCs for IV antibiotics - one of which I had until third tri, when I had to have it pulled due to complications. I've been off treatment since. I've been doing mostly okay - holding my baseline and able to do the things I need to do to take care of LO. That's the most important thing.
But symptoms are creeping back in pretty rapidly again. I'm so stiff and sore by the end of the day, I can barely walk sometimes. Muscle fasciculations are returning in force, tingling in my legs, weakness, dizziness. I have to be careful about when I choose to go up the stairs to the nursery because I only have so many trips in me. I don't know how many on a given day - I don't know until I try and can't do it. Even so, I'm much, much better than I was two years ago, so I'm very grateful for the ground I've regained.
The point to this is that I'm going back to restart treatment tomorrow. They told me that after I delivered, treatment would need to get more aggressive. They wanted to re-try some meds I'd reacted to in the past, in addition to adding things that wouldn't have been safe for a developing fetus. I'm scared of some of the meds. I usually feel worse for a while when I re-start as the bacteria die off. I'm also afraid it won't help as much as I want it to. I know, rationally, that some of what I live with is my new normal, but I have strong opinions about how much. Ha.
This has been particularly hard to swallow, as I was very active and fit before this happened. I mentioned in another thread that I rode a century ride (100 miles on a bike in a day) in 2011. I was already experiencing symptoms and seeing a doctor to try to figure out why at the time, but within 6 months of completing the ride, I couldn't even get on my bike. So it's been a precipitous drop in physical ability and it all frankly really sucks. It affects how I interact with LO and what we do day in and day out. But I try to live mindfully and stay positive. I do as much as I can on any given day, because I refuse to give in. So back to treatment I go.
Any positive thoughts you could send my way for healing would be very much appreciated. I also type all this so you know what's up, as it's likely to be a bumpy ride.
Thanks for listening.
tl;dr
Sick
Starting new treatment that's going to make me feel worse and potentially be dangerous
Keep on keeping on
Happy thoughts please!