The Basement

I’ve been in so much pain lately.

Spasms, cramps, aches, shooting pains, ice, burns, etc.

Neuro told me to increase my SSRI and double the dose to help with pain. Which it did, but it also sent me into a massive destructive depressive episode. So I decided to go back to my original dose without telling him and am already feeling mentally better.

But the pain is worse.

Am I just supposed to accept being depressed and on the verge of hospitalization to avoid pain? Or am I supposed to be in pain all the time and feel depressed from that?

Right now, the latter is more manageable.

I’ll call the neuro tomorrow to let him know I’ve changed my dose and to see if there are any other options.

FUCKING neuropathy (I’m guessing)

I just get this really intended flashes of hot or cold, or even sometimes wet? And it either just comes and goes or it sticks around for a while and really feels blistering.

It’s usually in between my fingers, on my palms, on the soles of my feet, or up my legs. Sometimes on my forearms too.

Sometimes it’s accompanied with stabbing pains or pins and needles.

I got up for work two hours late, got ready, got my lunch together, got in my car, then drove around the block and came back home, walked inside and fell asleep.

I nearly no-called no-showed until a coworker texted me and said she would cover my class for me and told me to tell our bosses.

Then I ate a whole pint of Ben and Jerry’s, a GF pizza, and fries, essentially breaking my ketosis and fucking myself up for the rest of the week, knowing that it would make my symptoms worse.

It’s odd because I wasn’t even feeling that horrible. But my body was just like NO and I took four long naps yesterday. Two of which I just fell asleep sitting up. Maybe my fatigue was just getting to me or something, idk.

It’s just been getting harder and harder to go to work and actually focus on my work. I don’t know how sustainable this is. Yesterday was just very unlike me.

I made it to the dog park today and the fresh air felt nice but I’m crashing again.

Sound sensitivity, a buzzing feeling in my head/teeth (this one still freaks me out because I just don’t get it), dizziness, difficulty focusing, nausea, and just an insurmountable fatigue.

My muscles are so weak and start cramping/get tired at literally the most ridiculous of actions. Like carrying my purse, or keeping my head up, or even fucking typing this. It’s hard to keep any of my muscles tense or moving long enough to get anything of significance done. Then they’re sore from the activity, as if I just got back from the gym and lifted a bunch of weights.

I just don’t. Get. It.

I’ve come to a sort of peace with being undiagnosed but when I’m feeling like such garbage like this, it really starts to fuck with my head.

Without any actual answer to the question of “What’s going on?” My mind tries to fill in the blanks and usually with disturbing conclusions as to what is actually happening in my body when I feel like this.

But - honestly, I feel like the worst of my conclusions and the one that haunts me the most is that it is all just “in my head.” I just keep asking myself if I’m making it all up. Like if maybe I just pushed myself a bit more, then I would be okay. Like maybe everyone feels these things and they just push through them and I’ve just been playing into them too much and that’s why I’m here.

Am I just imagining it all?

Am I the only thing stopping myself?

It doesn’t feel like it but maybe without any answers, this is the most accessible conclusion.

But it doesn’t make sense to me. I would never want to do this to myself. I just want to be able to do every day activities like I used to. I want to be able to live the life I want and I can’t.

I made the mistake of taking a break from the Wahls Paleo Plus/Keto food during my vacation a couple of weeks ago and I am STILL paying for it. I’m back in ketosis, and consuming as many veggies as possible (WPP calls for nine cups a day, which is A LOT), and I’m finally starting to get my energy back, my dizziness is dissipating, and my aches/spasms are almost gone.

After eating this way for a while, I start to feel so O-K that I convince myself that maybe I’m not Sick and that I’ll be fine if I go back to my normal way of eating. Usually if I try one meal outside of my plan, nothing too bad happens, but with a whole week of eating my old foods, I definitely paid for it.

Luckily for me, when my spasms, dizziness, and fatigue are so bad that I can’t move and I’m crying in pain/frustration, my partner gives me a stopper of CBD and within 15 minutes I’m feeling good enough to walk and talk again. It’s wild how fast and efficiently it works. It really makes me wonder wtf is actually going on in my body that CBD helps it so much.

I’m starting to feel much better again, which is nice. Even though I still don’t know what the fuck is going on, it’s comforting to know that I do have at least some control over how I feel.

It does, however, make me wish that my doctors took my change in diet as a more serious factor. I feel like it should be a pretty big clue that eating a certain way for an extended period of time factors into triggering many of my symptoms, and changing the way I eat has been helping. Maybe I’ll make it more of a point when I see my doc next.

I have been feeling better and I am nervous that will work against me. I am nervous I won’t be heard at all. I am nervous that my printed out lists of symptoms and questions won’t be taken seriously.

I know better by now that I won’t have any answers tomorrow, but I am at least hoping for honesty and a direction.

I might be feeling better but I am still having weird experiences/symptoms that have stayed. At this point, it’s hard to tell the difference between what my body is doing to itself and what all of the different medications are doing to me.

Whenever I feel good for a bit, I begin to forget that I’m actually sick. I start forgetting able it the sinking feeling in my stomach, and a little sprig of hope blooms there. Maybe that was it, and that’s all there will be. Maybe it’s over now.

But I’ve felt that before and I’ve felt the crushing reality of that not being the case when it comes back. I don’t want this doctor to give me hope, not in that way. I don’t want him to tell me to shrug it off and just come back if it ever happens again.

I don’t even know what I want at this point.

I just don’t want it to be happening.

I don’t want to have a body.

I decided to have the imaging center send the radiologist’s report to my primary care doctor, as I would be seeing her that week as well to discuss next steps. She reviewed the letter the doctor wrote explaining that there were no changes and I told her I wanted a second opinion just in case. At first, she encouraged me to stick with one neuro, since it is better for someone to experience your symptoms over time, but then she went on to read the radiologist report.

As she was reading it off, she mentioned a possible lesion on the cervical spine and assumed we knew about it. We said we had no idea, and she continued reading quietly to herself before agreeing to put in another referral to her favorite neurologist in the area, stating that it would probably still take at least a month to get an appointment. She shook her head, muttered something about how bad that other office is getting, and continued on with the appointment.

The new neuro called me THE NEXT DAY and decided that they wanted to see me sooner rather than later, and scheduled an appointment within two weeks. Already, I feel such a relief at not only a doctor taking my case seriously, but being in touch with one who actually gives a shit. I’m terrified, and it’s not a good sign that he wants to see me sooner rather than later, but I cannot stop feeling hopeful and overjoyed at the prospect of having a doctor who listens and might be able to help me.

Because a cervical lesion sure as shit can’t be caused by a migraine, like my former neuro suggests.

In the meantime, there is intense, muggy heat wave hanging over my area. Every time I step outside, my legs wobble and it’s hard to keep balance. I’ve been getting very intense burning and tingling sensations on the palms of my hands and the soles of my feet.

I’m just trying not to think about if it is MS, and if I do have a confirmed lesion on my cervical spine, then I am more than likely facing quadriplegia.

I’m taking the neuropathy and calling it annoying. I’m taking the vertigo and calling it being drunk. I’m taking the muscle weakness and spasticity and calling it an excuse to binge watch Netflix when I get home from work.

Well, I figure if I’m going to keep recording my experiences on here, I should probably establish my Origin Story of my bullshit experience with this illness.

After moving back to my hometown to help take care of my mother in September of 2017, I started working a new job and moving into my new place. One morning I woke up and was extremely dizzy. I felt like I was wasted or had a horrible hangover. I shrugged it off for a bit, thinking that maybe it was the stress from all of the commotion, but as I was starting to get settled into my new job while managing the dizziness, I would have episodic periods of feeling extremely lightheaded, nauseous, and like I could not think or stand or see straight. During my first week, I left in the middle of the day and called my mother to come pick me up, since I did not trust myself driving. We called the doctor and I saw a PA in the office who told me I either have Lyme or a viral ear infection. They did a full blood work-up, including 6 tests for Lyme, and nothing came back positive. He told me it was probably a viral ear infection, and that it would just go away on its own. I struggled for almost a month before it fizzled out and I shrugged it off, thinking it must have been an ear infection.

Then around Valentine’s Day, I had to make a long drive to pick up my partner who was attending school at the time, and go visit where we used to live to see friends and go to a concert. The morning I had to leave, I woke up, and the dizziness was back. I was so mad, but I had to keep going. I worked all day, left work, drove all night to pick up my partner and go to the concert. I was weak and dizzy, but eager to see my loved ones. I had a beer at the concert, but could not stay out dancing or drinking like I usually would have done if I were feeling better. The next morning I woke up and the vertigo/dizziness was all consuming. I was so nauseous, and could not lift my head up. I fell multiple times as I was trying to get dressed or go to the bathroom. I eventually ended up in what I can only describe as a “gravity vortex” where I cannot do anything except lie flat on the ground and feel like I am getting sucked into the floor. I can’t move my head, arms, legs, and I can barely speak. After a while we decided that I should not drive back, and my partner had to cancel class the next day to drive me home.

Every day, the dizziness, light&sound sensitivity, confusion, fatigue, floaters, disorientation, EXHAUSTION, etc. etc. etc. continued until I decided to call my doc again. I was getting lost on my way to work. I was mixing up words. I was passing out on the floor whenever I exerted any amount of extra energy. I was fucked up. I saw the same PA as before, and he told me I must have been taking too many supplements (I told him I wasn’t taking any), and that all my blood work was clear, so it must be something in my environment that I am ingesting. He rolled his eyes and said, “If you really want to, you can go see an ENT, but I would just keep a journal of what you’ve been doing/ingesting.” The next day I called back and got a referral to an ENT. 

My ENT was great! Super informative and wonderful. Gave me a bunch of options of what it could be and was my first beacon of hope. Maybe it was just a bunch of lose crystals in my inner ear! Maybe all I would need is an MRI to confirm that and some physical therapy and I’m golden! Maybe it’s a vestibular tumor, but who knows! Alright, let’s get this MRI done, STAT then!

Well, my inner ear was crystal clear, but the nurse called me back and said,

“You don’t have anything in your inner ear, but you do have 6 non-distinct white matter lesions. With someone of your age, this is usually indicative of Multiple Sclerosis. We are referring you to a neurologist, STAT.”

I have family members with MS. They are both quadriplegics, one was bedridden, and the other operates her motor chair with her mouth. I knew what MS looked like. I was on lunch at work, went into the next room, closed the door, and asked the nurse to repeat everything back to me on the report again. I hung up the phone, went outside, drove to Hannaford for some reason, and had a massive breakdown in the parking lot.

Fast forward, the neurologist dicks me around and decides my MRI is not urgent enough to be seen right away, because my lesions are benign. I see my neurologist two months later, and he says the same thing to me he had his nurse tell me over the phone. “Could be migraines. Could be MS. Does it look like MS? Not necessarily. Could it be? Yes.” And proceeded to order another MRI of my brain and cervical spine WITH contrast this time to see if there is any new inflammation. However, their office is so backed up, that I can’t get an MRI for another month. So, I just got my second MRI (first with contrast) this past Monday, June 18th... after experiencing a relapse of all of this bullshit since February. It has been nothing short of maddening.

IF this MRI shows any changes from the last one, it is possible that I can be diagnosed with MS without a spinal tap, which would simultaneously be horrible and a relief.

I fucking hate being in this state of limbo.

I fucking hate not knowing if it’s migraines, Lyme, some fucked up autoimmune, etc. etc. or Multiple Sclerosis.

For now, they’re just throwing meds at me and seeing which ones work. I’m on Meclizine and Diazepam for the dizziness, and they started me on Topamax (some sort of GABA inhibitor/anticonvulsant, I believe), but had to immediately take me off of it since it was quite literally making me lose my mind. Now I’m on Nortriptyline as a maintenance med (an SSRI), which has been giving me some relief. I have also started reading The Wahls Protocol, and have been adhering to a nutrient-dense paleo&keto diet, which has also been pretty helpful. Moreso than the meds at this point, actually.

Right now, my dizziness level has subsided to about a 2 or 3 daily, my confusion/focus issues are waining, my fatigue is improving, but NOW my muscles are fucking with me. It’s hard to carry my laptop bag from the car to my office - my shoulder starts to give out. My back is in a constant muscle spasm. My arms and legs get extremely tired and crampy by the end of the day. And, at times, my feet and fingers go numb or burn, like I have just touched a hot stove.

‪And to face this whole group of folks, who know this disease so well, along with my cousin, who also has it and now operates her motor chair with just her mouth, the weekend before having these two big MRIs that could possibly offer a definitive diagnosis.‬

‪It was the first time we were all together in over a decade and it was the first time being around them when I wasn’t a horribly broken traumatized teenager. It was more nourishing than I could’ve possibly imagined. Some apologized for letting me go after his death, ‪some spoke to their experience of trauma, some shared in my fear, and some in my vision for the future. There were a lot of full hugs, and there was a lot of “I love you. I’ve missed you.” I didn’t know my soul needed that in such a distinctive way, at such an important moment.‬

Well, I’ve been told I need to start journaling to keep track of my symptoms, so here we go at another attempt. I don’t seem to fair too well with an actual pen and paper, and I’ve been referring back to my Twitter to keep as a timeline for my boughts of complaints, so perhaps digitally recording my thoughts and experiences will act as a better helper.

Plus, putting my experiences with this nonsense out into the world is something I have been meaning to do in some way or another. Rather, I am desperate for a community of any sorts that at least somewhat understands the trials and tribulations of this grueling fight for treatment, wellness, and validation.

I have not yet made this experience public, aside from some close friends and coworkers, and I am anxious to reach out for support in my immediate community.

Here, I will try to be truest to my most authentic self - outside of daily responsibilities, social engagements, and any other place where an established self exists. I am at a point where I don’t know who I am anymore, and I am just operating as a ghost within a husk of a body, trying to maintain my life as best as possible, without letting anyone notice.

It is hard. It is really fucking hard. And I need to talk about it.