The WEGOHEALTH Activist 30 Day Writing Challenge Day 4
“Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.”
I’m so sorry that you suffered all these years with migraines, neck pain, fatigue, vertigo, vision problems, muscle spasms, tremors, numbness, anxiety and stress. I’m so sorry that had to go from doctor to doctor, having test after test, paying medical bill after medical bill and enduring the anguish of NOT knowing what was wrong with you while being prescribed a plethora of pharmaceuticals that made you fat, sick and tired. I’m so sorry that you had to go through all this while you were trying to start a consultation business that was ahead of it’s time in holistic healing, while being a daily caregiver helper to your mom for your dad and your great aunt for your great uncle as they both faced the end of their lives. I’m also sad that you went through this the year you finally learned to drive. Also as you were checking in and helping in very special ways for your dear friend and neighbor who became paralyzed after falling off a roof. But mostly, I’m sorry that you were misdiagnosed and labeled has a mental patient when in fact, you were, as the neurosurgeon put it “an inch away from being dead or in a wheelchair.”
All because in 2003, you tripped on a stepping stone outside your house and fell face first into a big flat rock.
You suffered a brain injury, but no one figured it out. Five days in the hospital, with migraine, pumped up with drugs until you started seeing smurfs and moving pictures on the walls, unable to stand upright, and unfortunately, given Reglan.
I’m so sorry you went home and shook for three months and your doctor did nothing. I’m sorry that the neurologist that you went to ruined your chances of ever getting good medical care for decades because he labeled you so that no one believed your pain. I’m so sorry it caused you to develop depression, anxiety and a fear of doctors. I’m sorry that he told you, “Janice, there’s nothing structurally wrong with you.” But there was. There truly was. And yet, not until 2008, when you finally went to the ER and refused to leave, did a neurology intern come in, see you with clear eyes for five solid minutes and say, “I know what’s wrong with you. You need an MRI of your neck.” The MRI the big shot neurologist refused to give you, you finally got. But did he give you the results? No. Not after a day or a week? No. Two weeks you sat in agony, calling everyday until his exasperated nurse finally looked at the MRI report and said, “Oh, there really IS something wrong with you!” Then you were sent to the neurosurgeon who gave you a double spinal fusion, two bone grafts, three screws and a plate. In your body free of metal fillings, to the tune of 10k, you now had a 137k neck surgery , with metal in your neck for the rest of your life. I remember how angry you were at the big shot neurologist who disappeared and how you viewed the good-looking young neurosurgeon as your savior. He was. He saved your life. But you still suffered. Why? Because they didn’t know you also had dystonia. Was it the fall? The Reglan? The neck injury? You didn’t know. And neither did they. But they doubted you.
Then you got a core needle breast biopsy in which they fractured your T4. You couldn’t raise your arms and laid in bed for four months because no one believed you. Your whole left side hurt. It didn’t show in the initial x-ray. But your ever-loving husband washed you, feed you, and took care of everything.
When the neurosurgeon released you, he said, ” Just don’t get into a car accident.” And in 2010, a man, underinsured and in a hurry, cause a t-bone accident and you suffered a traumatic brain injury, a compound T-1 wedge fracture and chest contusions. You panicked because of what the neurosurgeon said. And when you went to the ER, did they look for a TBI or believe you? Did they worry that you couldn’t relieve your bladder or that your arms and legs were numb and you were shaking? Nope. The medical record doesn’t even showed you were cathed. They sent you home.
Five days later, another hospital. They put you in a Miami j collar and gave you very strong pain pills. Five months you laid in the hospital bed in your home. Home health care tried to make you do things you couldn’t do. Horrible pain and migraine. Vision and balance problems. No one told you you had a brain injury. Finally you could take the bouncy vision no more. You braved the long car drive to the eye doctor. Panic attacks came with motion. Diagnosis: Traumatic Brain Injury. Post Concussion Syndrome. More to follow.
But because the hospital they sent you to still believed that big shot neurologist diagnosis before your neck surgery, you got scepitical doctors. The doctors had written terrible things in your medical records for years and when you finally read it all, you wanted to die.
You felt you had no place to go because this would always be on your medical record and you would never get good care. So you hated doctors. You feared them. You suffered panic and anxiety when you had to see them because you were suffering from this horrible twisting, excruciating pain that made you shake violently, jerk and pull your neck and body into bizarre and abnormal positions.
At one point you believed that they must be right, you must be doing this on purpose, so you tried with all your might to stop it. Prayer, meditation, You stopped at nothing. Any and all alternative therapy and treatments that made scientific sense. But it always came back. Then, you were diagnosed with a balance disorder. You had inner ear damage. You would be in some sort of therapy for the rest of your life.
And then there was that gynecologist surgeon who told you that your non-stop bleeding was “probably cancer” and wanted to do a radical hysterectomy in two days. Thank goodness you had the good sense to go elsewhere. When you found out he was a trophy hunter, you weren’t surprised. You knew not to believe him. You did however, catch the pre-cancerous condition in time. In fact, you’ve caught pre-cancer three times. You for you!
And then you saw a movement disorder specialist. She told you that you had dystonia and parkinsonism. She said it had no cure. “All we can do is try to keep you from getting worse.”
You cried with relief, sadness, anger and frustration. But you persevere and last year you became your mother’s caregiver. You took her in and dedicated your whole life to her care. And now you’re giving up your home so you can get help in for both of you in a bigger house.
I know you’re in constant pain, but, I have to tell you how very proud I am of you that in spite of the really crappy way you have been treated and the unspeakable things they wrote and said right to your face in that big deal health care system, you never give up on yourself. And you became an online advocate and activist helping others. You even participated in two TBI studies. One for fatigue and one of fibre imaging to diagnose brain injury. It broke your heart when a big shot doctor in charge turned on you and threw you under the bus because you hoped he’d help you with your lawsuit. He charged you $2,000 to write a letter to your lawyer just to say no and then kicked you out of the study. Then your lawyer died.
Yes, you never gave up and you never will. Because you are a warrior. A fighter. A really flawed, imperfect one with a lot to learn, but you try. You grow Janice. And someday, you will grow high and strong enough to rise above it all. Someday none of this will matter. I believe someday you won’t have dystonia because Gods Kingdom will “wipe out every tear…and death, sorrow sickness and pain will be no more.” ( Revelation 21:3,4) You will see it. You’ll be there. You’ll be happy well one day. Trust and believe Janice, and don’t you ever give up on yourself because God loves you and I love you.
very moving letter
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Thank you very much
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I’m sorry for all you’ve endured, and for the countless arrogant medical professionals who did not help you. So many physicians need to get their faces out of statistics and books, and look their patients in the face. Real people who are suffering, right in front of their eyes, and they need compassion, mercy and competence! Good for you for warrioring on!
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Thank you so much for your words. I appreciate it.