The Lab Rat is On Her Own

It has been quite a while since I last wrote a blog. I just haven’t had the time nor the energy.

There’s been so much going on and so much that I’ve wanted to give updates about. But, it’s almost like I have been choking on the words. Like I couldn’t even begin to try to talk about it all because there’s just too much. And then, at times when I do have the words, I don’t have the time and energy to get them out.

So, I honestly have a lot that I want to talk about. But, things have been so crazy with my fatigue and with my doctor situation lately that I felt like I needed to put it down in writing, at the very least, all that has happened concerning my neurologist. Just for anyone to even begin to try to understand what’s happening with me right now.

So, to begin with, a reminder of a previous blog post that I wrote entitled “where have all my effin doctors gone:” Last year, I lost pretty much all of my doctors- my neurologist, my hemotologist, my gynecologist, and the list goes on.

The situation with my neurologist has had many twists and turns since then.

Back in 2021, I had been attempting to reach her for months and months with no response.

Then, when I had to switch pharmacies because of changes to my insurance, my new pharmacy informed me that they couldn’t even find my neurologist in the state. So, I started on the process of trying to find a new neurologist.

And to this day, I haven’t found a new one. Why? Because in this country and especially in this state, our health care system stinks.

My insurance dropped Wellstar. When they dropped Wellstar, they severely limited the amount of neurologists that I could see that would be in my network.

While trying to find a neurologist in my network, I discovered that a lot of neurologists will not even see you for chronic fatigue or Long Covid.

My quest for a doctor eventually led me back to Emory, which is where I got my 1st neurologist from.

So, I explained to them that I had been informed that my neurologist left the state and that I wanted to schedule with a new neurologist. That’s when they informed me that my neurologist was showing in their system as still active and still within the state.

At the time, they asked me if I wanted to schedule a new appointment with my neurologist and at the time I said no. After all, if she had been in the state this whole time then that means that she just didn’t answer any of the messages that I sent her.

Well, lately, I’ve been having increased difficulty with with my fatigue. It feels like it may be getting worse and I was worried that my pills may be losing their efficacy.

I also had been trying to get paperwork confirming my diagnosis for my job.

So, feeling that I really didn’t have any other options, I recently decided to go back to my old neurologist. And, then I couldn’t even get an appointment with her. I ended up meeting with her nurse practitioner.

So, I met with the nurse practitioner last Tuesday. That meeting was definitely a mixed bag.

She asked me about how my brain functioning was working and I told her that I still had a lot of issues with memory, recall, and processing. She ran me through a memory test.

When I was first referred to my neurologist, she did a very short memory test before deciding to focus almost completely on my fatigue issues.

Basically, she asked me 3 questions and then after that, she suggested that I do brain puzzles to help my brain try to heal itself and then moved on to my fatigue.

This time, the nurse practitioner went through a full test and also checked my coordination. This time, I failed the memory test.

That honestly didn’t feel great, but the good news is that the nurse practitioner referred me to get more assistance- which is something that I have been asking for since 2020.

So, I am relieved to get that referral. Unfortunately, I won’t be able to see anyone about my memory and brain functioning until February 2023. That was the first opening that they had.

The nurse practitioner also asked me about my fatigue and I explained that it felt like my pills weren’t working as well anymore. Her answer to that issue is that she wanted to cut down on one of the pills that I was prescribed for my fatigue because weirdly enough, she said drowsiness is a side effect of that pill.

That plan left me baffled. I have a lot of doubt about this plan working when she hasn’t added anything. She’s only taken away. I’m still not sure what to make of it.

I tried to go somewhere to get a second opinion. But, once again I was told that they don’t treat chronic fatigue. Their advice was to go to my family doctor.

Too bad my family doctor is out of network and I have been having to pay out of pocket to see her.

I feel trapped. I feel helpless. I feel alone.

Not alone in the sense that I feel as if I have absolutely no support. I feel very supported by my family and my friends. As as a matter of fact, I’m so grateful for them. They are the rock that I am clinging to.

But, I do feel alone in that it feels like I have to try to make these hefty medical decisions all by myself. I can’t find a doctor to help me and it’s made even worse because of insurance.

All that I know is that I would kill to be able to see a competent neurologist.

#treatment #neurology #doctor #mecfs #longcovid #chronicfatigue