Tag: Functional Neurological Disorder

Sometimes You Have to be Your Own Advocate for Your Healthcare

I admit it. I am a naive patient. I have gone to the same Dr in the same clininc for years. When a problem arose I trusted the Dr to refer me to the specialist and assumed they were talking to each other for my best healthcare. I have learned this is not always the case. Sometimes, you have to be your own advocate for your Healthcare.

I have learned this last year that once a Dr sends you off to the specialist, they do not always follow through. They assume the specialist will do what they are supposed to do and they don’t have to deal with it. Then, when more specialists get involved, I thought they would all talk to each other. Not true.

This past year I have seen my Primary Dr, a Neurologist, an Orthopaedic Dr, a Neuropsychiatirst, a Physical Therapist, and an Occupational Therapist. Yeah, it’s been a year.

My eyes were opened when my Physical Therapist, whom I had been seeing for 3 months, twice a week, made it a point to write a special letter to the Neurologist #1 explaining my issues and the difficulties I was having. She shared how my progress was deteriorating and she needed direction on what exercieses I should do next and what Diagnosis the Neurologist would give me regarding these tremors/seizures.

When I went to the Neurologist #1, I asked him about the note from my Physical Therapist. He did not ever read it. I fired him. That is just wrong. So then I went to Neurologist #2. I asked my Physical Therapist to send him the same letter explaining my struggles. She did. Guess what? When I got to Neurologist #2 he had not ever read it either!

Ugggh. Really? So they send me here, there, and everywhere and they are so important that they will not even read what their supposed partners have found? It is so frustrating!

That is when I decided I have to own my treatment and my own healthcare. Yes, they are the Doctors, but many times they are only interested in their own findings and don’t look at me as a whole person.

After 4 MRI’s Neurologist #2 says that I don’t have any lesions on my brain or spinal cord, so there is nothing else he can do for me. He sends me to the Neuropsychiatrst. Pass the buck here. No, that is me, I am the patient.

I have been going to this Neuoropshychaitrist for 3 months now. The seizures are getting worse with FND ( Functional Neurological Disorder) and I am getting more frustrated.

My friend Laura suggested I get referred to another clinic that was associated with a large hospital in our area, UW-Madison. Thank you Laura! I sent a note to my Primary Doctor and she finally referred me to this other place, out of their network, and I will see Neurologist #3 here shortly.

I guess I share this with you because I learned that I can’t believe everything that a Doctor tells me. I have to OWN my health and my healthcare. I was told I would have this FND forever and there is no cure, just live with it. Ummmm – NO! I do not accept that.

Jesus died so I did not have to carry this illness, by HIS stripes I AM healed. And if one clinic is not going to help me get there, then I’ll go to the next one. God has given Doctors the gift of medicine just like Luke. Healing is from God, and sometimes He uses Doctors to administer it. I refuse to belive that there is no cure for this. I refuse to believe that I will be this way forever!

“Heal me, O Lord, and I shall be healed; save me, and I shall be saved; for you are my praise.” – Jeremiah 17:14

What about you? Have you ever had to change Doctors or Clinics?

God with us

 

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You Want Me to Write That Down? Struggling with CBT Homework.

I admit it. I am back in therapy trying to get my body under control. I am seeing a NeuroPsychiatirst. Now that is a mouthful. The Neurologist sent me there for the tremors and seizures I have been having. They call it FND or Functional Neurological Disorder.

I have found there are multiple ways to treat this. First – they send us to psychiatrity if we have ever had any trauma or abuse in your past. I laughed when they asked me that. I mean I could be the poster child for trauma and abuse, lol! The plan is to reprogram my brain with CBT – Cognitive Behavioral Therapy. Yeah, I had to look that one up.

According to the Mayo Clinic:

“Cognitive behavioral therapy (CBT) is a common type of talk therapy (psychotherapy). You work with a mental health counselor (psychotherapist or therapist) in a structured way, attending a limited number of sessions. CBT helps you become aware of inaccurate or negative thinking so you can view challenging situations more clearly and respond to them in a more effective way.

CBT can be a very helpful tool ― either alone or in combination with other therapies ― in treating mental health disorders, such as depression, post-traumatic stress disorder (PTSD) or an eating disorder. But not everyone who benefits from CBT has a mental health condition. CBT can be an effective tool to help anyone learn how to better manage stressful life situations.”

Secondly, there is a place in Kentucky that offers an inpatient program for CBT – Cognitive Behavioral Therapy. Kind of the same as the first option, but on steroids.

Lastly, I read of a place in Florida where they take Ultrasound waves and the MRI machine and kill the brain cells that cause motor disorders. Unfortunately, cost is $25,000 and they don’t take insurance. Dang.

I guess I’ll stick with door #1. I see the Dr. once every 2 weeks and I have homework. I have been avoiding it. I am learning about triggers and what happens when I have a seizure/tremors. I have been told I have to identify them and then we get to rewrite the script in my brain.

So, what I am stalling on – writing down the negative thoughts that go through my head in a day.

Wow, I had no idea. It’s hard when you have to think about what you are thinking about. Examine the thought – is it true? What is the evidence? It hurts my head just thinking about it. Seriously, you want me to write that down? Ugggh. I hope I don’t crawl into crazy doing it.

I am not a touchy feely girl. I don’t like emotions. Most of the time I just shove them down into a box to deal with later. I am a great compartmentalizer. Shove it in a box, do what you gotta do at the moment, and bury that box deep down so nobody can ever find it. I don’t want to open that box and relive all that pain. Is this really gonna work? Is it worth it?

Hey God, I know you can renew my thoughts as I read your Word and listen and pray to You. Can you just flip the switch up there? It would be so much easier than this homework!

What about you? Have you ever had to do this? Did it work?

 

FND

Here is a great video about FND:

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