For a couple hours today I felt all the feelings.
Nervous. Worried. Relieved. Flattered. Irritated. Ouch. Patient. Informed. Uninformed. Comforted and comforting. Ouch. Taught. Terrified. Trapped. Heard. Seen. Embarrassed. Pressured. Terrified. Trapped. Heard. Embarrassed. Humiliated. Irritated. Ouch-ouch-ouch. Relieved. Nervous. Shaky. Seen. Heard. Relaxed. Shaky. Weak. Thankful. Exhausted. Completely Empty. Determined. Numb. Exhausted.
A couple of weeks ago, I saw a lovely pulmonologist who actually listened more than anyone I’ve seen so far. I tasked her with finding out for sure if I have pulmonary hypertension. Despite seeing two other specialists and having 2 out of 3 tests say I don’t, I couldn’t get a commitment from them saying I didn’t, nor did they want to treat me like I did. She ordered a lung perfusion test as a last pass.
I scheduled it, and based on her description of it, I thought it was similar to a cat scan. I have had four of those in the past six months, so I didn’t think about it again.
Until this morning. I went to YouTube to watch a video of the test and that’s when I got worried.
I’ve written it the past about being raped when I was 19. And over the years, I had really “dealt with it” quite well. I had always been very open about it, including listening the stories of countless other friends I’ve met over the years who have been through something similar without it ever triggering me.
I had my weird little fears that I knew started after the rape. One, being afraid of complete darkness—there is always a light at my house that stays on 24/7. The other being afraid of taking walks alone. The reason those things are weird is that my rape happened in Daylight, in my own home.
Yes, I’ve tried to self-talk myself out of my weird fears. Being afraid to be home alone would make sense. Being afraid of sex would make sense. But, the marks of trauma are invisible and trauma doesn’t have to leave marks that make sense.
Regardless, I became friends with those two fears. I’ve made boyfriend’s install nightlights in their bedrooms and if I take a walk alone, it’s at the mall with the old ladies. I’ve coped, and 31 years later, thought I had done a pretty good job living life in spite of the pain of my past.
Until this year.
Because Trauma doesn’t have to have timing that makes sense.
Trauma reared its ugly head this year while I was in a room alone, having my 5th accupuncture treatment with 10-20 needles in my legs, feet and hands, I felt the feeling I never wanted to feel again. The feeling of being trapped. I called out to the practitioner and they didn’t hear me and I felt voiceless. Eventually it was time for them to be taken out, and I left as soon as I could get out the door. Once outside I took in deep breaths, still not sure why I felt the way I did and why that was a familiar feeling.
Until I did…I felt trapped just like I did under the weight of Chris’s (the rapist) body. I felt voiceless as he ignored my “NO!” and I realized no one else would hear me or come rescue me.
To be honest, I’ve probably been unconsciously designing a lot of things in my life to make sure that I don’t feel those things ever again, and I must have done a good job of it to keep it at bay for so long. But this year, something changed. Trauma reared its ugly head in the throes of an already difficult time. I was experiencing a lot of unexplained medical symptoms, doctors ordered cat scans, pet scans, ultrasounds and more. Getting thru the ones I thought I could, still reminded me of my trauma, and I refused an MRI because I knew better.
Which brings me to today. The nuclear medicine tech came and got me out of the waiting room. He had kind eyes and a warm smile, which was a relief but I was still wondering if a man could connect to what I was about to tell him.
He showed me the machines and started explaining the procedure. That’s when I told him I had been raped.
Thankfully, he did hear me. He assured me he would not leave me, that he would talk to me the whole time. He then handed me the mask and asked me if I wanted to put it over my mouth and nose first. I had already relayed that during my rape Chris put his hand over my mouth and having anything over my mouth or face was so very hard. He then explained he was going to put one side of the strap on and then asked if it was okay. He moved to the second strap and then asked me adjust it where I wanted it. It was so tight already, but then he had to put two more straps on. I couldn’t breathe even though there was an opening in the mask itself (that would be hooked up to an oxygen tube during the test.) He looked me in the eyes and asked me how I was doing. I said “I don’t know.”
He then closed the hole with his gloved hand to have me blow air and make sure none escaped out the sides. It was incredibly constricting. He explained it would just be eight minutes. I told him there was no way I could. I couldn’t breathe, the mask was painful physically, emotionally; deep within my soul kind of painful. He then asked if I thought I could do six minutes instead. I said no.
He took the mask off and left me laying on the table while he went to get the radiologist to see what they could do. I really just wanted to leave by then…I didn’t see a way. Before he left, I asked him his name again, he said “Chris”…how ironic, right? I didn’t think about that coincidence at the time…kind eyes and warm smile and someone hearing your “No” helped with that. The doctor said they would just do the second part of the test…no mask and I could control how close the imaging machine got to my face. Again, Chris the tech reminded me he would be right by my head the whole time. I agreed to this plan. I felt relieved that I had been heard.
I was embarrassed though…it sucks when you can’t use your mind to overcome something you know doesn’t make sense.
Chris, the tech, tried to start an IV on me for the radioactive material they needed to inject in me. He missed the first time and couldn’t find another easy option, so he got a collegue to help. Alan walked in and said “What do we got? She’s too scared of the mask?” I felt humiliated and defensive and immediately cut him off and said “I’m a trauma victim and I just can’t!” I was more forceful than my usual demeanor, but he dropped it. He complimented me on my Christmas-y fingernail polish and inserted a needle between my two knuckles to secure the IV.
Once I got back onto the imaging table, Chris ,the tech, slowly lowered the machine until I said when it was as close to my face and I could stand it. It only had to be there four minutes. We talked about him being a newlywed with a baby girl on the way next year, how long he had been doing this and more. Four minutes down, then three more four-minute segments with the machine away from my face and I would be done. I was aware I was relaxed by now, but I was shaking the whole time even though I wasn’t cold. I guess it was me coming off all of the flight, fight or freeze adrenaline I had just used.
We completed the test. I still felt like a failure only getting half the test, but knew it was better than nothing. Chris, the tech, walked me back to the waiting room. I wished him well and went out to the lobby.
I sat there for an hour before I thought I could walk back to the parking garage and safely drive the 30 miles home. While I sat there, I was feeling all the things and also numb at the same time. And I felt something I don’t often feel…anger. Anger with myself that I can’t “just get through it” or that it isn’t all behind me, and Anger with Chris, the rapist, that he’s out there somewhere, unaware that what he did 31 years ago can still hurt me today.
But I was also grateful today. I said my “NO!” and this time, Chris the tech heard it, the radiologist heard it, and no one forced me to do something I said no to. Today, I was reminded that although trauma doesn’t play by the rules, I have agency over my body and am worthy of that being respected.
No, trauma doesn’t make sense, but today I learned my “No!” is enough.
Let’s talk about the elephant in my room. If you ask some of my doctors, that elephant is me. Now, I have never thought of myself as an elephant, and I have always embraced my “bonus curves” instead of beat myself up over my them, but for the past few months, I’ve had doctors deny adequate patient care because of it.
I’ve been over 200-pounds my entire adult life…I’m 5.5, so clinically, I’ve always been obese. I was my heaviest between 2000-2012, and had a surprising weight loss after I realized when I ate grains and sugar, I felt tired and gave them up. Even though I just happened to lose 60 pounds, I still never got under 200.
EVERY doctors I’ve seen in the past 32 years has seen a number that the world tells us can’t coincide with health. Despite that, while heavier than I am now, I raised four special needs children, often with all three of them getting multiple therapies a week. I often thrived on 4-6 hours of sleep. I had one kid who had to be fed every three hours until he was four. I also always ran a side-business, and once I became a single mom, I ran a full-time business. And, because my family had mostly died (due to cancer) by the time I was 36, I did it mostly without much outside support.
I may have been “fat” but I wasn’t lazy. I wasn’t sitting around eating bon-bons all day and despite my southern heritage, I wasn’t frying every food I ate. I wasn’t good at exercise, admittedly, but I was busy just the same.
Although I’ve lived with chronic pain since I was 19 (doctors called it Fibromyalgia but I never suffered with fatigue the way any other patients I know have, so I didn’t really believe the diagnosis), I have always had plenty of energy. I was well known to throw dinner parties for large groups of friends. I maintained a 3200sf home and cooked nightly homemade meals while doing various medical treatments and behavioral interventions for my children. Many a night, I sewed custom-ordered purses until 2am or tea-stained paper for the framed caligraphied sayings I sold. I managed a team of 150 in my organic foods direct sales business. I even wrote a 60,000 word book in five days in 2016.
Actually, 2016 is the last time I remember having that kind of energy.
Following a weird and taxing summer that included writing my first viral article about being the white mother of adopted black children that landed us on the Steve Harvey show, and my healthy son having two, unrelated life-threatening experiences days apart, I thought I just needed some respite when the energy I had always enjoyed suddenly evaporated overnight.
I just couldn’t do anything--hours would pass by with me trying to convince myself to get up and start on my to-do list. I went to my doctor convinced the crazy summer had affected me psychologically and now my body was paying for it. She was smart enough to run a tick panel without any indication that I really needed it. I am NOT the outdoorsy-type and I hadn’t had any evidence of a tick bite. Thank goodness, she was thinking outside of the box or I would likely have been dead by that Christmas.
I had indeed been bit by a tick and contracted Rocky Mountain Spotted Fever. I didn’t know anything about RMSF except a childhood friend had gotten it and almost died. From what we can figure, I must have been bit mid-August and wasn’t diagnosed until five weeks later. My onset would have been just before we went to Chicago to film and I thought the trip had exhausted me.
Thankfully, I got the remedy in time before my organs started shutting down, but my red blood cells were already showing changes from the infection. I spent five months in bed and have been in a street-fight ever since to reclaim my previous health.
New Years Day is my favorite holiday! So at the dawn of 2019, as my usual tradition, I ceremoniously chose my word for the year …”Abundance!” I also set my goals around “abundance of health, wealth and love.” I had a plan to get my business back to the banging one it was in early 2016, I planned to start looking for a partner after a seven month post-breakup hiatus, and since I felt my health was about 70% of what it was before my tick bite, I was on a quest to see how much of that remaining 30% I could reclaim.
I started seeing an amazing chiropractor, bought a chair yoga video series, tried acupuncture and CBD oil products to see what would make me feel better. I had previously tried strict keto, vegetarian and other ways of eating to see if noticed a difference and had decided to try the Mediterranean way of eating.
My pain had increased. I hadn’t been to the doctor in a year, so when I went for my yearly checkup with my internist in March, I explained overall I was doing much better but really hadn’t found much to help with my daily pain. I had been taking way too much ibuprofen for years and while it helped with the inflammation and stiffness, it wasn’t helping pain anymore. He suggested a medication that was relatively new and made for fibromyalgia patients. It worked wonders…taking away most of my pain, I was sleeping without pain waking me up, and when high pressure weather systems were moving in, I wasn’t having to go to bed anymore until they blew through town.
Unfortunately, other symptoms started that no one realized might be due to the medication until it was suggested I trial off it for a medical test I needed. When I paused it, my new debilitating symptoms decreased in frequency and intensity and sadly, it’s now listed in my chart as an allergy and I will never be able to take it again.
I was very sick again, in some similar ways to RMSF and in some new ways with unexplained spikes in blood pressure, heart rate, shortness of breath, sweating and more, while doing absolutely nothing. I also had so very little energy that I only had about 3-4 hours a day I could actually get anything done and spent the other hours trying to do just the bare basics of life and recuperate. It’s been so hard, and even my most supportive friends probably don’t realize how little I function because when I see them, they are seeing that time I reserved to be with them--at the cost of reliably doing nothing else that day.
It’s been hard to be the mom I need to be to my two kids who started college this year, and my other who started high school. It’s been hard to make a living because I have to divide those 3-4 hours a day between doctors appointments, procedures and seeing coaching clients. It’s been hard being the friend I need to be and although I have a long history of never cancelling on a friend, I’ve had to these last few months. It’s been hard being the girlfriend I need to be, not that I have a boyfriend, but because having the energy to date just hasn’t been there, even though I miss that part of myself. Honestly, it’s been really hard to be the human I need to be…a human.
It’s just hard. Most people who know my life story are surprised by my Zen outlook on things. But last week, I hit the wall. I hit the wall hard.
You see, in the past 7 months, I’ve been to the ER twice, seen 13 new doctors/clinicians, had 31 appointments, not including a number of scans, heart and lung testing, countless blood draws and 24 hour urine tests, I even started therapy just in case.
Oh and lets not forget the THIRTEEN pounds I’ve gained and asked my internist and two endocrinologists if it could be a clue.
No, we can’t forget that because no doctor will. Not all, but well over half have told me my problems would evaporate if I would just lose some weight. They don’t ask me what I eat or how much, they don’t care because they have already made up their minds, and likely wouldn’t believe me if I told them.
They all got on a ‘obstructive sleep apnea’ bandwagon a few months ago, because you know, all fat people have OSA. I was with a new pulmonologist on the day I was supposed to go in for a sleep study. The appointment was going okay--I was seeing her for the shortness of breath and some concerning findings from a chest CT scan, when she told me that I undoubtedly had OSA and would feel better on c-pap. Then she added that I could get rid of it eventually if I would consider bariatric surgery. was shocked! If people want to go that route, that is fine, but I would not ever consider it myself and told her I had ethical issues with both the surgery and the fact she asked me about it.
I cancelled the sleep study, by the way, and multiple studies show that when doctors mistreat overweight patients, we don’t get the medical care we need.
Again, she never asked me what I ate, she made an assumption based on the number she saw next to my weight. Had any doctor asked, I would happily share that I eat a mostly vegetable and protein diet. I eat very little sugar, grains or fruit. I don’t eat my first meal until noon and then eat dinner and sometimes a snack if I need it. I drink exclusively water and my two cups of coffee per day (without sweetener.) I shop at Whole Foods and Sprouts much of the time because I care about ingredients. I buy mostly whole foods and cook almost all of my meals. I eat “healthier” than many of my skinny friends. I eat less than some “healthier” looking people, too. I’ve actually consulted with dieticians who see little room for improvement.
Doctors do seem to ask more about exercise. I tell them that I walk at the mall when I feel I can, but something odd happens to me when I get into the car. I can be doing fine with my heart rate and breathing while actually exercising (thank you apple watch), but when I get back in the car, I seem to decompensate. I sweat, my heart rate goes crazy, I can’t catch my breath, I feel utterly exhausted and have to wait before driving home. And then, there’s a good chance I will have such increased pain that I can’t sleep well, and then I am tired and in pain the next day. I then look them in the eye and say “If you could help figure out what is going on with me and fix me, then I could exercise without all of those after effects…and I would love to get back to yoga, but the stiffness and joint pain makes that difficult.”
Their eyes literally glaze over and then they change the subject. Its happened with at least ten doctors. They write in their notes that I need to lose weight and exercise…this puts the burden of their job on ME. The problem is, without them helping me, “I AM TOO F**KING SICK TO GET WELL!”
I’m not fat…well, okay I am, but I’m not too fat to get well, I’m too sick to get well if that is what is going to cure me. If losing weight is going to require exercise, and they can’t address what happens to me, the price I pay, the little energy I have and that it sucks my energy for two days if I do, then how I am supposed to get well, especially if getting well means more exercise?
And here, is the crux of why, 8 months and thousands and thousands of dollars later, I am still undiagnosed. Last week, I had two doctors on the same day—one via email who I hadn’t met in person, and one I had met just eight minutes before, tell me I needed to lose weight and I would be all better.
And you know what I did? I cancelled my upcoming appointment with the reading cardiologist who replied to a requested clarification about the measurement of the right side of my heart, by having his nurse practitioner (whom I had seen) tell me “he suggest weight loss.” And you know what else I did, I walked out of a doctors appointment 8 minutes in, and told him he wasn’t a good fit, because I was looking for someone who was willing to help me be well enough to get better and not just point out the obvious elephant in the room.
I’ve always been “fat” but I’ve never been this sick. If a doctor can not tell me what is wrong with me, then they can’t know for sure that my weight is going to heal me--I’ve always had the weight, I’ve not always been sick.
I went home that day and cried a lot (for me.) I thought maybe I should just stop it all and just accept this is my fate. I thought maybe I should look for some extreme diet plan. I thought maybe I should just tell myself I am perfectly healthy and live my best life (for the record, I try this about once a month and it’s a disaster of symptoms within a few hours.) I thought maybe I should forget there’s spots on my liver that need imaging, and cysts on my lungs that need monitoring, and kids that need a functional mama.
That’s actually how I stop the doctor-created shame spiral in my head and remember why I need to get well…for those beautiful kids that need me for years to come, for my great clients that need me for a few months, for my amazing friends that have stuck by me and I need to stick by when their lives get hard, for my next great love who needs the beautiful connection only I can give him--they are the reason to not give up.
In reality, I want to take the big elephant out of the room next time I see a doctor. I am going to point out that the elephant is not me, the elephant is them not wanting to use their vast education and reduce me, a living-breathing amazing person, down to the numbers next to my weight.
If they can acknowledge this, then maybe we can be two elephants in a examination room who decide to work together so I can get well enough to get well. Maybe.
Here’s a revelation for the opposition to the resistance–the resistance is not about Politics, it’s not about which party is in control, nor is it about being a sore loser. The resistance is an action of maintaining personal boundaries coupled with empathy for humanity. Perhaps others don’t easily recognize boundaries nor empathy, because let’s face it, as a society, we pretty much suck at them!
Write something about yourself. No need to be fancy, just an overview.