I am going to do my best here. My physical health right this minute feels a bit like a metaphor to what is also my current emotional condition.
First, a little information on my physical health. For several months, but more noticeably since the end of March, I have been sick.
I saw my primary care doctor who gave me steroids – a simple Medrol dose pack – and a referral to a neurologist for strange numbness in my arm and leg and sent me on my way.
I saw my rheumatologist who said my bloodwork was great but gave me a higher dose of steroids, for a couple weeks and sent me on my way.
I saw the neurologist who scheduled nerve conduction tests and an MRI, all of which were normal, handed me a higher dose prescription for migraines, told me my condition was because I have depression, and sent me on my way.
I went back to my primary care doctor after one month and was once again given steroids and sent on my way. Next month? Same thing. My doctor doesn’t know, but he hands me steroids and tells me to see my OBGYN for problems with my menstrual cycle that suddenly started.
I saw my OBGYN who gave me a prescription for birth control to stop my periods and sent me on my way.
I went back to my primary care doctor feeling ill again and was handed yet another prescription for steroids with a head scratch and an “I don’t know.”
My therapist recommended I try to see an endocrinologist, so I made an appointment. Two days before my scheduled appointment, the office called me to cancel and said he had left the practice.
Back to my rheumatologist for a routine check-up. My bloodwork still looks great, so I get refills, another prescription for steroids, and a prescription for a medication to help with pain and inflammation (not pain killers – I refuse those).
I call my doctor for an appointment and request cortisol tests. My cortisol is elevated, so he sends a request for another cortisol test and several other theroid and hormone tests. Guess what? Everything is normal again, including my cortisol. He gives me another dose of steroids with antibiotics to see if this thing can be kicked.
I get sudden migraines – migraines so bad that I cannot function. I have maxed out on the number of pills I can take in a week, so I lay in agony on my couch without relief. Rather than go to the ER for their cocktail, I pop several Benadryl and go lay down with ice. The next business day, I call my OBGYN to come off birth control believing that could be the problem, and anyway, the birth control hasn’t changed the excessive and frequent bleeding. He gives me a prescription for another birth control. I haven’t started it.
I call to schedule an appointment with my doctor again. He also orders a mono test. The mono test shows a recent infection but nothing current. I see the nurse practitioner. She scratches her head, says, “I don’t know but maybe…” and gives me a rehabilitation specialist referral. So now I wait to be scheduled with this doctor (with a long waiting list and turn-around time) feeling so exhausted and sick that I have all but quit everything I enjoy.
I scheduled to see a naturopathic doctor. My first visit will cost me nearly $300 out of pocket. I can’t afford to see him after that because the program costs about $4500. But maybe he can give me some recommendations???
I have a laundry list of symptoms: Migraines and stubborn cluster headaches, low-grade fevers, acne, irregular (frequent, heavy, and longer than normal) periods, joint pain, fatigue and exhaustion, chest pain, weight gain, insomnia (both kinds), dizziness and lightheadedness, dry eyes, excessive sweating (way worse than normal), bruising easily, brain fog, confusion, feet and ankles swelling, mouth and nose ulcers, stomach ulcers, heartburn and acid reflux, no appetite, and more.
I know my symptoms. I know how to call doctors and make appointments. I know what I want: to feel better – not because I take steroids and feel good for a couple weeks but because I have an answer and actual clinical recommendations (Yes, I am trying to get enough rest, eat right, drink enough water, etc.). I KNOW things, but it isn’t getting me any closer to being healthy.
Please send help. I am LOST.
In the meantime, I am noticing a decline in my mental health. I am too tired to do the things I like to do and the things I need to do. So, I work my hours and try to be a good mom, wife, and housekeeper. I try to maintain friendships and care for animals. And I have nothing left at the end of the day. NOTHING.
I have been saying I feel lost. I have no idea where I am or where to go next. I feel as though I am waiting for someone to tell me what to do or where to go, so I can do what I need to do. I don’t know how to communicate what kind of lost I am, so the more I say I am lost, the more frustrated I get. I start to feel discouraged and desperate. I struggle to not communicate the way I used to just because the way I am communicating isn’t clear. So, I must shut down. If I don’t shut down, I will act out of rage. I have done that. In hospitals, I have trashed rooms beyond recognition, thrown furniture, and dented walls. Or I have turned it on myself and self-harmed uncontrollably.
I am trying to figure out how to say what I need to say while keeping the angry reactions and desperation quiet. If those things start, I know what happens next. But by not saying anything, I am getting closer to a referral from my therapist or a hospitalization.
Here is my best effort. I feel like my life is going nowhere. I have no idea what I want or what to do with it. I can’t sit on my ass and do nothing for the rest of my life. I’m not actually doing that, but I feel lost about my future. I have a job that I enjoy most days though I find it stressful quite often. I cannot do it full time. I once had a dream of what I wanted to do, but I don’t want to start over – and I would need to. I have thought about personal training, but my body can barely keep up as it is. Injury after injury with potential of not being able to do A LOT of things (second opinion from another doctor is pending). I have interests, and I pursue them, but they aren’t things I can do to financially assist my family (and we need that right now). I feel completely LOST.
For a long time, I have been confused. Should I talk about trauma or not? Am I not supposed to talk about what happened? Am I supposed to talk about talking about it? Where do I go from here? I am LOST.
In therapy, I legitimately don’t know the next step. I don’t know what I am supposed to be doing. I feel LOST.
Just as with my physical health, I feel like I am shouting, and no one understands to be able to help. I am saying I am LOST, and I don’t know where to go. I don’t know where I am. I don’t know where I am supposed to go. I don’t understand. And I don’t know how to make anyone else understand what I mean.
I am doing my absolute best to figure out how to communicate what LOST means, what I need, and where I am, but I don’t know how. The more I can’t figure it out to communicate it to others, the more frustrated and desperate I become. Brain fog is horrendous. And now I am at a crossroads.
I know I want to get better. I know I want to know where to go from here, in the now. I know I want to heal somehow (how?). I know I want to figure out what I want for my life in the future. I know I want something better.
Please send help. I am LOST and don’t know what found looks like.