An NIH study points to autoimmunity as the underlying cause of more than a hundred life-altering, chronic illnesses and that 75% of those with autoimmune disorders are women. ...
Patient engagement is a trendy topic for healthcare providers – the latest spin terminology for “patient compliance” – as in how do I get patients to follow...
Zebra Retreat. No, it is not a new safari resort in Africa. It is not a ride at Disney. Not a new game rivaling Angry Birds. And...
Susannah Cahalan, a journalist for the New York Post, was afflicted with a very rare autoimmune disease called anti-NMDA-receptor autoimmune encephalitis. Where my type of autoimmune disease...
Day 2 of my week(s?) as a patient at Mayo Clinic is over. It has been a long day to say the least. I’ll elaborate: 1. Physical...
“Living with a chronic illness is hard. Some days, navigating the healthcare system is harder. I am a nurse, looking at healthcare from the other end of the stethoscope. Join me on my journey for answers and a cure – and definitely a few laughs, too!” As a young nurse in 2011, Sarah Beth Cowherd, RN began blogging about her experience in healthcare. She wanted to explore how a new generation of nurses were changing the face of healthcare through the use of technology and social media. Soon…
Recieving disability payments is more difficult than one might think. To catch you up, I recieved Short Term Disability payments through my employer over the summer. After an initial denial of my claim, I appealed the decision and eventually was approved based on a suspected diagnosis (and the pulling of strings of top executives in the company). With Long Term Disability, I have not been so lucky. My initial claim was denied because they did not see sufficient evidence in my medical record to prove that I am, in fact, disabled.
Let me tell you, this is a very disheartening event–to have an insurance company extract quotes from medical records that “prove” I am qualified physically to work. Infuriating and insulting is more like it. They included one quote from my cardiologists note that stated on July 30, 2012 this doctor states “she is alert and oriented”. OK, insurance company. Just because you can recall the date and know what type of building you are in does not mean that you can work 12 hour shifts as a nurse. They also decided to ignore the rest of the note which states that everytime I stand up, my heart rate skyrockets to 170 and I have episodes of near syncope.
They extracted another statement from my neurologist that said that the small fiber biopsies were normal and negative for demyelenation. BUT, what they failed to research is the fact that you don’t need small fiber biopsies to be positive to diagnose autonomic failure or dysfunction. They decided to ignore that fact as well.
I had my cardiologist fill out the physical capability form for the disability claim because he is closely following my case. He clearly stated that I cannot stand, lift, or walk. My physical capabilities are limited to activities of daily living ONLY. Surprisingly, there was no mention of this document at all in the denial letter.
All this being said, I am currently in the process of appealing the decision. This could take up to 6 months. The worst part about all these minor details is that I AM SICK. I have no energy to sit up and research the policies, obtain all my medical records, call lawyers, etc. It seems almost impossible. But, I press on.
I will lose my empolyment offically next month–which means I will lose my health insurance. There is always COBRA, but without disability payments, that will depleat my savings quickly. Even with disability payments, I won’t be able to cover my rent, expenses, COBRA payments, or medical bills. It is also possible that I will be recieving treatment in the near future–an infusion that costs $10,000 a bottle. Five infusions in a treatment session, repeated every 6 weeks to 2 months until you are better.
At this point I’m simply frustrated. Unable to do much because of my current symptoms, I am stuck here just thinking about the claims and the impending financial difficulties.
It seems to me that there is something wrong with this healthcare system. So far, I have slipped through the cracks, been denied short and long term payments, and been passed around from specialist to specialist. You would think that I, an educated nurse, would be able to navigate the system–think again.
Everyday I would go to work as a nurse and treat my patients with dignity and respect. I would defend and protect my patients until the end. I worked hard to uphold the standards that my employer drilled into us. All I ask is to be treated by my employer and their insurance providers with the same dignity and respect that I worked so hard to achieve for my patients.
Is that too much to ask?
I’m sorry for not keeping up the blog. The past month or so has been a mess. I’ve been experiencing a decline in my autonomic function. I’m having a lot of trouble with my bladder–mainly urinary retention–requiring a few ER visits, multiple doctors and tests, and most awfully, catheters. (TMI?)
So right now I am waiting. Last week I had some testing done at EVMS by a world reknown doctor who does a ton of research. He did testing on my autonomic system. This includes sensory testing on my peripheries, testing on the blood flow in my feet, and stimulation testing on my heart rate and blood pressure. My good friend, Bobby came with me for the testing. He was laughing when I was setting off the heart rate alarms when I stood up. At least my heart rate was elevated during the testing. I always feel like things normalize when I see doctors and they don’t understand what I’m talking about. Not this time.
All that being said, I’m waiting for a decision. This guy is supposed to get back with my cardiologist and decide what to do. Fingers crossed they will come up with a treatment to try. Otherwise I’m headed back to the Mayo Clinic. Unfortunately, Johns Hopkins refused my case. Apparently, they don’t have an autonomic specialist there. One must wonder what in the world is wrong with them that Johns Hopkins does not have an adequate specialist–and actually refers you to the Mayo Clinic.
Sorry this is a quick update. I will keep you all posted on what they decide! Thank you for all the support.
Last month, my doctor told me, “Western medicine has failed you.”
But, I don’t buy it.
I can’t believe that in this day and age, western medicine failed me. It is not over yet. I’ve been to many specialists over the past six months. Each of which may have a piece of the puzzle, but none are willing to commit. Each one shakes my hand, shakes his head, and says, “I’m sorry I can’t help”. Off to another specialist.
I never knew what a struggle it would be to get a diagnosis–and, for that matter, what a struggle it would be to get treatment for debilitating symptoms. As a nurse, I thought I might have an easier time navigating the system–and I’m amazed that after 7 months, I still can’t figure it out.
I read an article recently about a woman who was sick for 10 years before she got a full diagnosis. I feel like I could have written that article. It was so similar to my story. I couldn’t help but wonder how many doctors told her western medicine had failed her.
On the bright side, I finally feel like I’ve fallen into the hands of the right specialists. My cardiologist is a life saver. He assures me that we will get to the bottom of it–and if we don’t, he is here in hunt until I make progress. A new neurologist who may have found an autoimmune disorder that explains all my symptoms from the past 7 months. And an endocrinologist who is willing to help as well.
And so I press on. Because I know western medicine has not failed me yet. All it takes is the right test, the right doctor, and a little patience.
To the nurse who is new and scared.
To the nurse who is seasoned and confident.
To the nurse who forgets herself (himself) to care for others.
To the nurse who is tired.
To the nurse who looks into the eyes of the dying and says, “Everything will be ok, I won’t leave you.”
To the nurse who is overwhelmed.
To the nurse who is dedicated.
To the nurse who stops everything until you are comfortable.
To the nurse who says, “We will not give up on you.”
To the nurse who is diligent.
To the nurse who works well past her shift end.
To the nurse who smiles.
To the nurse who holds your hand.
To the nurse who stays up all night to make sure your loved one sleeps.
To the nurse who solves the problem.
To the nurse who calls for help.
To the nurse who the doctors love.
To the nurse who sees you at your worst.
To the nurse who makes a difference.
To the nurse who begins your life.
To the nurse who ends your life.
To the nurse who saves your life.
We thank you.
Well, it has been about six weeks since my trip to the Mayo Clinic for answers. In my previous posts, I let you in on what the Mayo Clinic had come up with. That being said, I needed to get off most of the medications I was put on orginially and add a “miracle medication” that should help the pain.
I use quotations to highlight the fact that there is no miracle medication. In fact, it has not even touched my pain.
And I’ve grown more sick.
About two weeks ago I developed tachycardia. My resting heart rate was anywhere from 100-125. And at times reaching the 145 mark. This has resulted in multiple ER visits, more specialist appointments, and overall frustration for this patient.
Because of the tachycardia, I had to stop taking the ‘miracle medication” from the Mayo Clinic. In fact, the doctors suggest I get back on a medication that I spent 6 weeks weaning off of.
The irony in the situation is I am right back where I was 2 months ago– pre Mayo. I’m in pain. I have debilitating symptoms: orthostatic hypotension, tachycardia, and shortness of breath.
My wonderful cardiologist agreed to see me the day after I called him at his home number. Luckily, I know him well from my church. He agreed to help me and see me through to the end. I should have called him 5 months ago when this whole ordeal began. He believes the tachycardia is an autonomic dysfunction. He isn’t sure of the cause, but believes it has something to do with my autoimmune thyroid disease. I need to see an endocrinologist. The first available appointment is June 8. sigh. It is funny, after being sick for 5 months, there are STILL specialities I have not seen.
And so I wait. Take medicine. And attempt to manage my symptoms.