Weekends are by far the hardest time. I think my whole family agrees. It’s the time when theres no security of a doctor around or filled with the extra waiting time to hear back on test results. Everything always feels like its on an extra long stand still. Despite how much work has been put in, this whole time has felt like a long, standstill. I hate the uncertainty of everything. I’ve already expressed my lyme fears with you guys— and with each passing day, I’m more certain, it is lyme. I have two main doctors here in Massachusetts that I’ve been seeing (outside of many other specialists). One thinks it’s unlikely, the other states, “I would be surprised if it wasn’t lyme” and “you’d be on antibiotic treatment by now if it weren’t for the c. diff.” Every single symptom matches. There’s no way I can deny it now. I’ve overlooked, shrugged off, and denied it for months– but it’s real.
I’ve been frustrated time and time again with remarks from doctors, “you just need to take better care of yourself” or “are you drinking enough water? you need to drink more water” (as if 90 ounces of water a day wasn’t enough) or “it’s just anxiety, or depression, or chronic fatigue”— “do you want ibuprofen for your pain? Maybe some aspirin?” as if I’m just sad, and not taking care of myself– or like I want a bandaid to be a temporary cover for the pains I feel throughout my body— or worse yet, like I actually want to be in this miserable stand still place. Every single day is day that I take care of myself, more than I ever have before. I’ve dealt with anxiety and even depression— I know what those things feel like. Yes, at times I feel hopeless and helpless, but I think anyone would under these circumstances. I miss the go go go, the days filled with happy, busy moments. I miss my productivity– the good feeling I get at the end of the day when I know life and myself have been filled with hard work and joy.
I don’t know, this post isn’t coming out like I thought it would. I didn’t mean to come here and rant. I feel like I could write a ten page article filled with rants of this current time and the treatment (or lack of) I’ve received. To be quite honest, I don’t even remember what I came here to say. I know I wanted to come and write— to spill my current thoughts, but my positive thoughts got unintentionally swept away.
The goal for this week is to build a plan. I’ll continue on herbals, I’m still putting much of my faith and hope in that. I also have an appointment to meet with my dietician once again. And I will also meet with a c. diff/fecal transplant researcher/doctor— not to necessarily have a fecal transplant procedure— I’m past that point, but instead to learn more about the c diff and what it means for my future, especially with antibiotics. And then I will meet with my third (and possibly fourth) infectious disease doctor this year. (Two infectious diseases in one year, do I win a prize? Can my prize be a cure for everyone? I’d like that.)
Internally, my goal is to continue to build my immune system— I’m at a point where I know lyme will live inside me—there’s no way around that— and that has to be okay. But more than that, to have any sort of life, I have to find my strength through health back. I’ve gone through many emotions and fears, as you guys know— and saying them out loud (or written out) last week helped. (thank you). So now I’m still just trying to feel comfort each day in this in-between– as completely uncertain as it is. I’ve lost things in this process, I’ve lost part of myself, my normal, my routine, some friendships, some jobs, my future plans— but I’m still here and right now, in this in-between and this unknown future— it has to be good enough. And whatever will be, will be. I’ve been in uncertain and scary places before, and I’ve come out on better than ever, I just have to believe and know, that can happen here too.
These photos? They were taken a few weeks ago— on a three day up swing I had. It seems that I have about seven “up days” a month now. I’ve always wanted to be able to take Marlowe and Alex here. It’s been years since I visited– I had spent many of my teenage days at this place. We didn’t get too far on the path, but we made an effort and I’m grateful for that.
And if you’re interested, this rock trail is in Sutton, MA. And appropriately enough, its called Purgatory Chasm.
-serving to cleanse, purify, or expiate.
-a marked interruption of continuity; gap
I hope you guys all had a great weekend. We originally had a trip the caribbean and mexico planned for this weekend/week, but life happens and plans have to adjust. On the upside, Alex was able to use his time off to come back up here. It’s been a few weeks since we’ve seen him. It’s been a welcome change to have him here and Marlowe has been super ecstatic to have him cooking for her. Not sure enow long he’s here for (I don’t really want to ask), but I’m hoping we can make a good few days out of it. Have a great week friends. Sorry for the unintentional rant and thanks for being here, despite all the not super bright, real life stuff.
UPDATE: I just want to come back here and say that after more tests, we’ve comfortably ruled out lyme– but have no answers to what is going on. It seems as if everything is still stemming from the gut but no doctors have been able to tell me why I can have such intense body and head symptoms from my gut struggles. I’m learning that the medical world has a long, long way to go before they really understand how our gut system works.