The sunlight poured through the window, warming each one of the floorboards its golden rays touched. It was there that she sat, each and every day in that old wooden chair. She would move it from its spot at the kitchen table, positioning it so that every part of her body could capture the suns warmth when she sat down. The old chair creaked each time she shifted positions, but she didn't seem to mind. Sometimes, I think she moved purposely just to hear the sound of something other than herself creak. She always sat with her ankles crossed, and her hands resting gently in her lap. Sometimes though, she would reach up and play with the pearls that always hung from her neck. She would start to coil the beads around her index finger, unraveling them, just to start again. As she did this, her head would tilt back just enough to allow the sun to land upon every wrinkled crevice of her skin. I used to think she was sleeping, because she would keep her eyes closed for such a long time. Her eyelids would dance, as though she was chasing a dream, and a smile would crawl ever so slowly across her face, pausing before her lips were fully drawn. When she opened her eyes again, they were usually glazed over with the beginning of a tear, but she never bothered to wipe it away. Instead, she allowed it to dry in the sun, when it began its slow roll down her cheek. Even though her spot now sits empty, as soon as I see the sun spill its golden rays upon the floorboards, I move that old chair from its spot at the table and position it just so; thinking that one day, I might be able to capture the suns warmth like she had.
Today I feel so down I came, I tried to heal but fell in shame. Today I hurt so up I knelt I wiped the dirt but still I felt Today I stole an ounce of sun It took its toll But I wasn't done Today I stood and gazed in pride at how I could If I just tried Today I peeled my layers in back and what was sealed was no longer black Light is there If I only look beneath to the despair no longer the crook
I sat on this for a few days and I debated on whether I would write about this. The reality is, I couldn’t justify not speaking up about this. I have worked in the medical field, and I have been on both ends of the world of medicine. I have been the person people turn too, and I have been the one turning to people. As those with chronic illness are acutely aware of, it is very easy to get lost in the system. It is a time consuming and painstakingly slow process to find a diagnosis. It took me over 2.5 years to get diagnosed with Postural Orthostatic Tachycardia syndrome. That was 10 plus years ago. I went from being an athlete, working a dream job, living it up……to barely being able to walk my dog without having to sit down and rest. My heart would race every single time I stood up. At the time, this condition wasn’t quite as recognized as it is today, so I didn’t blame the doctors who threw their hands up in the air with me. However, it was frustrating at the time because I was told that I was fine, that it was all in my head. Why? Because I was young, and healthy. I was told it was probably anxiety. Nope. I didn’t have anxiety. What I was anxious about, was why my heart rate was going wild. I knew something wasn’t right. No one knew me better than myself, and I didn’t quit until I had a name for it, and a treatment for it. I knew I would get an answer, and to be honest, I understand the health care system and that to have the health care in this country that we do( for which I am grateful), sometimes it is going to take a while. I am ok with that.
However, what I am not ok with, is waiting months and months to see a doctor that you hope might change your life, and having them treat you poorly. Having a doctor not listen, or brush you aside. Specialist need to realize that patients wait months and months with debilitating symptoms or illness, and so much hope lies on that one date that they have marked on their calendar. Hope is what keeps people alive.
I had recently had my hope dimmed, and was treated poorly by a doctor who’s appt was etched in my calendar for months. An appt that I had hoped would bring clarity, and with that answers. As some people may or not may not know, for this past year I have had some medical issues popping up on top of my POTS diagnosis. It has been a very difficult year for my physically as a result, and I have been referred to a multitude of doctors, and I have visited the ER a few times. While most of the doctors have been great, and have listened and are genuinely concerned, I just met one this week that I just can’t ignore. This doctor, from the time I walked into his office, had me pegged. He didn’t care what I had to say.
Some background before I tell you about this doctor, I was put on a certain medication for my adrenaline rush issue that comes with PoTS. I wasn’t put on it for anxiety, but for my adrenaline. I used to get really bad rushes in the middle of the night, and this seemed to calm it. However, after 2.5 years of being on this medication(which is a short term drug usually), I had many different specialist recently tell me that I shouldn’t still be on it. Some wondering if it is causing some of my issues. As a result, I have begun the process of weening myself off of this. This type of medication is not a drug that you can just quit cold turkey without complications. It is a slow process.
This particular doctor didn’t care what I said, didn’t listen, didn’t ask, instead he just told me instead to double my dose of said medication, when I was having a flare, and to deal with it. I then informed him that I was weening off it and that I wasn’t interested in taking extra, and then I informed him that I am also extremely sensitive to that medication. I had once tried taking an extra dose, and it made me incoherent. His response to me was ” well, you’ll either be loopy or you’ll sleep it off. Either way you won’t remember your symptoms”. So just take an extra dose and deal with it.
I was slack jawed. I turned around and left his office. The fact that a doctor would tell me to take an extra dose of a medication that I was trying to ween myself off of, and to take a medication that caused me to become incoherent when taken in excess (I have 2 kids btw), was absolutely ludicrous. I have been in a personal hell for a year, with my symptoms. To be told to take a drug to make myself sleep or become incoherent, every time I have a flare (which is sometimes daily), is disgusting. Especially when I don’t have an answer for what is going on. I don’t want to knock myself out for the rest of my life to deal with this! I want an answer! I want a fix! I want to feel better! I don’t want to be doped up so I don’t feel anything! How this guy can call himself a doctor is absolutely gross.
When I became a paramedic, I tried every single day to help my patients the best way I could. Doctors take oaths. When did oaths become less about fixing someone? I am someone who literally walks into an office and begs them to fix me. Whatever it takes, fix me. Don’t give me a pill as a bandaid. Doping someone up, is not fixing them. Tell me why this is happening, and tell me how I can fix it.
This process isn’t fun for me. Being in agony isn’t fun. Being scared isn’t fun. Not being able to do things with my children isn’t fun. Dealing with symptoms and waiting months and months isn’t fun but I will do it for as long as it takes if it means an answer. My hope lies in doctors. Every time I am told that there isn’t an answer, my hope dims. Every time that I have a flare, my hope dims. I will not have this one doctor dim me. I will fight. I will prove him wrong. Just as a did before with my pots. I know me.
I am thankful for a great family doctor who always takes the time to listen to me, and is constantly trying to find an answer for me. Cheers to all those doctors out there who have been great to me.
It just takes one doctor. One doctor who will listen, and think, and figure it out. One doctor. Thats all it took for my Pots Diagnosis, and that is all it will take now.
This is a poem called ‘Walk Slowly‘ written by Adelaide Love, that holds a special place in my family.
If you should go before me, dear, walk slowly down the ways of death, well-worn and wide, For I would want to overtake you quickly And seek the journey's ending by your side. I would be so forlorn not to decry you down some shining highroad when I came; Walk slowly, dear, and often look behind you, And pause to hear if someone calls your name.
Extinguished eyes Dismal Fate Who am I To feel so late Call to Heal Blinded toll Who am I Ne'er be whole Fast we toll Neglect done Who am I Just one's son Sleep eludes Tales strung Who am I When the last one rung Battle we must Solo in shame Who am I Just another name