Archive for the Week 19: Doctors Category

Forget the Facebook timeline! My AS Timeline!! By Meloni

Posted in The Blogs By Meloni, Week 19: Doctors on February 17, 2012 by Cookie Has A.S.

Having your rheumy tell you she might send you to a neurologist makes you think…hmmm I’ve seen one!  What was his name?  Where are those records.  The AS in the neck is pretty bad lately so, I got to thinking, when I fell down the stairs is when all this started!  So, let’s back up a sec.

In Jan of 2006, I took a nasty fall down a flight of stairs.  The good part was I was on my “rear” the entire fall, bumping down every single stair.  I did fling my right arm trying to stop myself—didn’t work.  OK-here goes-numbness in right arm was pretty bad.  So, my primary care (PC) Dr sent me to a neurologist.  After tons of tests, and seeing the ortho Dr at the same time, it was decided I’d have shoulder surgery.  STOP!  I now have the records (yes, in 2012) from the neurologists.  I’d like to share his “impression” of me–I guess that’s his fancy word for diagnosis.  OK–typing exact as my records state– “CERVICAL SPONDYLOSIS with disk disease”–first words he writes.  My MRI-at that time, he writes C4-5 asymmetrical bulge and narrowing, C6-7 and C5-6 protrusion.  SAY WHAT???

Not one doctor told me this in 2006.  NOT ONE!  I had shoulder surgery.  So, did I really need shoulder surgery? hmm makes you wonder doesn’t it.

Here’s my quick AS TIMELINE Jan. 2006-fell down stairs and started seeing neurologists and ortho dr (did physical therapy)

May 2006-diagnosed with spondylitis (but they forgot to tell me)

Nov 2006-Shoulder surgery (because I wasn’t getting better-duh?!)

2007 I don’t have records from this year–and memory is well…gone

2008-started having pain in ankles I could hardly walk and fingers were so swollen and painful.  Referred to Dr. Alan Gottlieb.  His diagnoses (have his records)–he says HLA-B27 positive but no signs of AS–fibromyalgia.  WHAT THE HECK.  Wouldn’t send my dog to this doctor.  Felt violated at the 1st visit.  So for the next year excruciating pain and a fibro diagnoses from Dr. Quack!  If you’re wondering HLA-B27 is the AS marker!!!

2009-I’m at my PC and she’s seeing how I’m doing–not good, now let’s add more joint pain (lower back)–ok, let’s re-read that statement–I said JOINT pain.  Not muscle aches.  Learn the difference Dr. Quack.  PC says, you don’t have Fibro–you have ankylosing spondylitis–ankah what?  Yes, this is the 1st time I hear these words.  So for 3 years, I’m NOT being treated at all for what I have.  Can we even back up a bit more and say this runs in my family.  My younger brother has it and already has both hips replaced and that I TOLD THE DOCTORS THIS!  She refers me to another rheumy.  Dr. Paul.

June(ish) 2009-Dr. Donna Paul starts treating me for AS.  I’m immediately put on methotrexate (yum) and then we add humira.  I start seeing some improvement.  Now, don’t get excited, I said some.  I’m feeling better just knowing what I have now.  Even though there is no cure and it’s a degenerative disease.  I see her for several months into the beginning of 2010 then—All the sudden Dr. Paul is gone—just left.  I liked her.  What the heck.  Where’d she go.  I’m here for my appointment.  The doors are locked.  I mean she up and left!!!  Give me my records!!!!!!!!!!!!!!  Tell me something!!!   With no records, nothing, it’s off to find another rheumy.  I’m at her office for my appointment and she’s GONE!

May 2010-I see Dr. Elizabeth Butler (Emory).  I tell her what I can and I’m on humira, etc.  So, we start over.  I like her too!!!  So, glad to see a Dr who “knows” AS.  Who cares.  She’s not happy with my AS and switches me to enbrel/methotrexate and tells me that I have an aggressive AS.

In the beginning of 2011 I stop all work and try and get this disease under control.  In March of 2011 I start Remicade infusions.  I’m finally feeling I can “do life”.  No mind you “doing life” is totally different than my “doing life” before AS.  Insurance change–out of network–WHAT?  Please no.  I don’t want to change doctors.  I pay out-of-network fees until the new rheumy can see me (November 2011).

2012-Today–numbness in right arm is back.  Headaches all the time…could this be the neck?  hmm  Could my AS have been slowed in 2006 if I’d been given a diagnoses and medication?  There’s more to this story!  It’s my story.  My life.  I’m in charge.  Thinking I’ve found Dr. Paul in Alabama—trying to get in contact with her.  I WANT MY RECORDS.  They are mine.  Where are they?  In a dumpster somewhere?  Dr. Stark, new rheumy, I’ve not made my mind up about him just yet.  I just wish I could stay with Dr. Butler.  We’ve upped the remicade and it seems to be working for now.  My eye is better.  Now this neck and headaches.  oh, and shoulder pain and numbness in the right arm.  Well, going for a MRI of the neck.  We’ll compare with 2006 and see where I’m at today.  For now–I wish my insurance hadn’t changed, but thankful that I have it.

To all of you—YOU are your Dr.  Get your records.  They are yours.  Stay on top of your health.   And don’t keep your disease a secret.  I did for a few years.  I think mainly because I didn’t know what I had.  So, I kept the pain a secret.  Now, I know ankylosing spondylitis (AS) and read about it and talk about it…seems the more I know, the more I learn doctors don’t know that much.  It’s not your grandmothers arthritis folks.  Don’t act as if we all have it when we get older.

I have auto-immune arthritis/ankylosing spondylitis disease.  It may be invisible to you, but to me, I see it 24/7.

AS has my body, but not me.

Doctors are people too! By Ricky

Posted in The Blogs By Rick, Week 19: Doctors on February 4, 2012 by Cookie Has A.S.

This might seem a bit of an erroneous title to some of you, but I have been reliably assured it is accurate. As hard as it is to believe they really are people too, just like me and you!

OK sarcasm aside, sometimes as a patient it can be quite difficult to be less than respectful to our doctors when things fail go the way we had hoped. With conditions such as Ankylosing Spondylitis (AS), like many other chronic illness’, we see our doctors regularly. Especially our Rheumatologist’s and General Practioner’s. When symptoms get worse, beyond tolerable, manageable or prediction, our doctors get put in the firing line as the barrier to between pain and relief.

Image taken from

Pain by it’s very nature makes us change our behaviours, but we may not realise all the time just how much we do change. It is human nature to get frustrated about something we desperately want to change, but can’t. Our doctors share this frustration with us at times, especially when it comes to the lengthy wait in applications /funding for anti-Tnf drugs. Our doctors are compassionate towards us in our frustrations, but when frustration turns to anger, resentment and obsession then it would be unreasonable to ask them to constantly tolerate this behaviour. These issues are never black and white. Blame can not be entirely put on the patient for this breakdown in the relationship, nor would it be fair to blame the doctor solely for this. Like with any relationship, the doctor-patient relationship needs compromise and understanding, with open and honest discussion. Communication is as we all know key to making any relationship work well.One thing I have noticed over the last year or so is that social media can help keep this relationship open and honest. Social media like Twitter has become much more diverse than the platforms original intention, with health care professionals using it to reach out to a wider audience of patients in order to assist in the greater good. Of course sometimes this is negative, as those in need are manipulated, and sold products / unsafe practices from ‘quacks’ which often compound health issues, and offer no real progress in treatments for conditions. However these ‘professionals’ (dare I call them that)are the minority, with the substantive majority in it for the right reasons.You don’t have to look far to find doctors with a good social media presence, who have an active relationship with there patients. For any AS or Arthritis sufferer you need not look any further than Dr Ronan Kananagh, Dr Raj Sengupta, or Dr Shashank Akerkar to get valuable advice and information. Someone I have personally always enjoyed following on Twitter is Dr Christian Jessen, who holds regular sessions on twitter to answer general medical questions, often with a sarcastic undertone, but providing an entertaining and sometimes alternative answer to intense or trivial problem.

At the heart of it, the relationship you have with your doctor, and all other health care professionals for that matter, will often have a profound effect on you physical and emotional well-being. It serves all parties best to be open and honest with each other, with communication key to enhancing your relationship. We need to bare in mind that doctors are people too, and sometimes may need help and information from you, just as much as you do from them. So be nice to your doctor, and I’m sure they’ll be nice back, after all they just want to help.

Negative experiences always are easily recalled from our memory, but what about positive ones? What positive stories do you have about your relationship with your doctor? Have you met someone that has changed the way you manage your condition, or changed how you think of doctors and health care professionals? Are you a doctor trying to do just that? I’d like to hear your thoughts and comments.


Flabbergasted, Dumbfounded, Baffled And Hurt By Jeannette

Posted in The Blogs By Jeannette, Week 19: Doctors on December 5, 2011 by Cookie Has A.S.

I had an early appointment with my PCP this morning. She’s been a very good doc and also has Ankylosing Spondylitis to boot. A very mild case, but still, it’s always good when a doc can relate, and rare too!

She told me that yesterday was crazy busy, and I guess my complicated case set her off. She told me I should schedule separate visits for each issue and that seeing her 1-2 times a year wasn’t enough. I pointed out that I’ve been seeing her at least every 3 months for 5 years and that today was my 6th visit this year. When she realized her reprimand was misdirected towards me she became even more upset and told me I should see her every month because she only has a max of 10 minutes to spend with each patient if she’s going to make any money. I was rather dumbfounded at this point and told her that I couldn’t afford to see her every month, not with the cost of seeing my specialists and paying for 34 prescriptions without insurance.

Despite how I felt inside I remained calm and understanding. I truly sympathize with her predicament. It’s obvious she feels like her hands are tied because of insurance companies, drug manufacturers, etc. I somehow took on the role of psychologist with my doc … or perhaps a pounding board. She told me that the small amount of time she can afford to spend with me isn’t enough and as a result she can’t be a good, thorough doc. She said all of this in a raised, angry voice and walked out, leaving me with the nurse who looked embarrassed because of the outburst. The nurse further explained how bad the previous day had been for them … never looked me in the eyes.

I remained calm and kind through the whole ordeal, and didn’t react in a negative manner. After some silence I said in a raised whisper to the nurse, “What did I do? That was so unprofessional. I’m never coming back. You can note that in my file.”

They forgot to treat my ear, pneumonia shot and medical records release form, and I didn’t remind them. I just paid my bill and left. As soon as I walked out the door tears streamed down my face. It was tough holding them in until I was alone.

Stress is a major trigger for bad health and Dr. S knows this. THIS is the last thing I needed. In my current state of mind I feel like finding a new PCP but I don’t want to make any important decisions when I’m upset. So … I’m thinking I should sleep on this first before making a decision … and I should pray for Dr. S. It also occurred to me that most docs don’t even care enough about their patients to have an outburst, and clearly Dr. S does care.

Any comments, suggestions, and words of wisdom are very welcome.

I Know I Don’t Look Sick By Cookie

Posted in The Blogs By Cookie, Week 19: Doctors on November 21, 2011 by Cookie Has A.S.

The names have been changed to protect the innocent, or the guilty in this case.

My name is Cookie and I have seen almost every kind of doctor that you can imagine over the past forty years.

Dr. H. was my doctor during my teen years. I remember him as a kind man with limited knowledge to understand what was wrong with me.

He was also a victim of his time.

I say victim because we are all victims of society. He believed that my problems were all due to mental issues. My mother suffered from manic depression so there for I must also. All the pain I suffered from was caused and always would be in my head.

Dr. A was my doctor during my young adulthood. She was a wonderful and kind lady; I felt that I would be her patient till my life ended or hers. I was her patient for twenty-three years and when it became apparent that Ankylosing Spondylistis was going to change my life drastically and challenge her medical knowledge. She decided to do something.

I went in for a visit and was struggling with pneumonia, she sat across from me the same way she had for twenty-three years and said…… I can no longer be your physician. I can not deal with the challenges I (her) will have to face.

I just want to finish my career quietly, and smoothly. I don’t want the responsibility and work that it would require of me to be your physician. What Ankylosing Spondylitis hadn’t managed to destroy of me, she did in that fifteen minute conversation. I told her that I didn’t get this disease on purpose to make her life hard. I told her that I would pray every day for her to be in my shoes at this very moment.

I was forever changed as a human being that day.

Dr. D was my next physician a young man who led me in the right direction. A wonderful bright young man who listened to every word I said, most of all he heard every word I said. I came to him when Ankylosing Spondylitis started my journey of hell.

I struggled with so much pain and confusion about what was going on. I will never forget this man who touched me in a way that I am able to face anything this disease has in store for me. He told me that I would make him the best doctor in the world, because I was going to teach him compassion and empathy for his patients. Once in his office I was in excruciating pain and he gave me an injection in my hip to help me. When we were finished I turned to look at him and he had tears in his eyes. Several months later he was killed in a car wreck.

Dr. W is one of the best known surgeons in our area. He almost cost me my life. I had come to a point in my life that suicide seemed to be my only option. It consumed me.

He was recommended to me by Dr. D. I took my films and test results to him.

I stood in the door way watching him observe my films. He didn’t realize that I could see him and I watched him closely. You could tell that it was serious and you could tell the amazement and confusion in his expression. He grabbed the films turned and came to greet me. He leaned against the wall and folded his arms and looked at me dead in the eyes. Then he calmly said, “I am not a pill pusher.” I stood there for several minutes trying to comprehend what he said; my brain couldn’t register his words.

Then it hit me, he thought I was there only to get drugs. I became Enraged. I was so hurt that he wouldn’t even introduce himself, before he passed his judgment on me. I was humiliated to the core. I felt so hopeless thinking maybe just maybe I would find some relief and regain my life back. I finally said to him, “That’s good because I am not a pill taker. You could at least wait for me to ask for the drugs before you judge me.” After about five minutes of my tirade I grabbed my films and walked out of his office. I was walking out the door and the lady behind me said, “Ma’am, you need to pay your bill.”

I turned around and pointed to Dr. W and said, “God is going to pay for it himself!” I left and spent several years trying to learn to live with the pain. Suicide was always on my mind. That is until I met Dr. P.

Dr. P was the turning point of my life. A few days after meeting Dr. P I was in the hospital to have a cervical fusion done. On my last visit with Dr. P he stated that I had DISH, when I asked about it he said it was nothing to worry about. It would be years later that I read on his report stating: Told patient she has Ankylosing Spondylitis. No cure. No treatment, advised patient to learn to deal with it. Assessment: terminal.

I finally met Dr. A, who is still my doctor to this day. He is close to my age and a wonderful man. After about a year of visiting with Dr. A I could tell something was bothering him terribly. After a lengthy discussion I learned that it was me that was bothering him, and the fact that he was never going to fix me. I told him, I am not looking for someone to fix me. I am looking for someone to treat me with respect, kindness, acceptance, compassion, sympathy, and understanding. That day I learned not only was it hard to be a patient it was hard to be a doctor.

Dr. A suggested that I talk to Dr. S a psychiatrist, a man who taught me the meaning of acceptance and forgiveness. A true gift from God.

I met Dr. C when it became too difficult to walk. He suggested countless times I should meet with Dr. L. Dr. C teased me once saying, “I am not going to treat you anymore till you see Dr. L.”

Finally I made a call to Dr. L and asked him, “Do you know anything about Ankylosing Spondylitis?” He laughed and said, “A little.” His name is Doctor Martin Lidsky.

He is the man who gave me my life back. He gave me truth. He gave me hope. He gave me compassion. He gave me love. He gave me strength. He gave me tough love.

He gave me Cookie.

My last doctor is Dr. C. She is an angel. She is wise enough and compassionate enough to allow me to make my decisions on the way I wish to handle this disease. She offers me advice and direction but is compassionate enough to understand it is my battle, my fight and my life.

There are more doctors that I could mention but they are not worth the pain or energy to write about.

May God bless each and everyone for your sacrifice and dedication in becoming a doctor.

Thank you.