FAQs

Tuesday, February 28, 2012

Without Me?

"Either you're taking me too, or you're not going anywhere!"

Since he doesn't like to be separated from his 'herd', Asher usually spends all of his moments during dinner time hanging out with me and Mom. During dinner Saturday night, Mom noticed he wasn't with us and said: "Where's Asher?" 

We were all packed and ready for our trip to see Dr. Complex and Dr. ANS the following day. As you can see, we found Asher surrounded by our suitcases. We're not sure if he was asking us to pack him also or if he was just letting us know how sad he was we would be leaving. He forgets how good he has it at Dad and Abbie's house when we are away!


"You're not leaving without me, are you?"

As many of you know, I scheduled back to back appointments with Dr. Complex and Dr. ANS for the end of this month. On Monday we will have see Dr. Complex at 10:00. On Tuesday we will drive about an hour or so to see Dr. ANS at noon for a two hour appointment and then head home. Needless to say it will be a long three days, and I will have been awake long before my usual time each morning. Dr. ANS usually does a lot in his examination to provoke symptoms, which can lead to a bit of a flare, so we will see how that goes!

When this arrives in your inbox (or you see it on Facebook), we are hopefully home safe, back with Asher, and resting. I'll blog about it all as soon as I can.

Blessings,

Emily

Saturday, February 25, 2012

Reunited

With my Favorite PCP in 2007
My Valentine's Day was a good one, not because of romance and love (although I felt very loved), but because I was reunited with my favorite PCP and am now a patient of his again. Having him back on my team is a huge relief and great comfort to me. 

I did not start blogging until 2005, so many of my early challenges to find doctors who would validate, or even care for me, have not been shared on this blog. Needless to say, it is awful to be terribly sick and know that something is terribly wrong, yet be unable to find a doctor to pay attention. 

By 2002, I had seen many, many doctors including a LOT of primary care physicians and internists. Even with the diagnoses of a POTS and NMH from a positive tilt table test as well as Chronic Fatigue Syndrome, I was facing illnesses that were so little known and so dismissed in medicine at that time (and still are). If you asked many of those early doctors about my situation, it was all in my head, of course.

In my last appointment with a PCP before meeting Dr. Listener, I was told "I will treat you for any other problems that come up such as a cold or the flu, but I will not be involved in treating you for or trying to help solve your other medical issues." Gulp. I remember leaving the appointment, sobbing in the car, feeling as if yet another doctor had thrown me out into the street. Why wouldn't anyone help me?

My dad had been seeing Dr. Listener, and he agreed to see me as a patient. I ended up in his office for an emergency appointment, incredibly sick from a medication that one of my POTS specialists had put me on. 

For the next five years, Dr. Listener cared for me with humility, grace, compassion, and empathy. He believes that if a doctor simply listens to a patient, much of the time he can figure out what is wrong. I cannot tell you how many times Dr. Listener put together the pieces of the puzzle just by listening. This is why my PCP will be called Dr. Listener from now on. His gift is in listening. His gift is in knowing when to say: "I don't know what to do." His gift is in saying: "I will pray for you. I'm sorry you are going through this." His gift is in being willing to trust me, the patient, and what I say about and do with my body. His gift is in having the willingness and humility to be part of a team. His gift is in problem solving. His gift is in validating and never minimizing.

So, when he announced in 2007 that he was leaving our local practice to move to a different location 45 minutes away we decided, through my tears, that I needed to have a local doctor in case I was hospitalized. I agreed and switched to another well-respected member of his practice and stayed with her for four years until she left last Fall. I never clicked with the new doctor the way I had with Dr. Listener, but I had few options to switch. One of the most important roles of a PCP locally is to work with Medical Assistance to get my prescriptions covered and refilled. This process continuously broke down with the new PCP as did communication with my specialists.

Because there are only a couple of major practices in town, and I wanted to stay within the system I am in (all of my specialists are there), I could quickly be accused of Doctor Shopping. I would also be in a bind if the new doctor I saw was worse than the one I had been seeing!

When Dr. PCP left last Fall, she and I agreed that I would be best off with an internist instead of a family medicine practitioner. Again, I started the search for a new PCP. Again, I found myself facing the same patterns I had when I first got sick. Both internists I saw dismissed me, did not listen, did not show respect for or interest in the treatments and doctors I had seen and was seeing. One said he had been taught not to believe in Lyme so he had to stick with that, and the second, while looking at her computer the entire time, said I must have been 'having some vertigo or something' if I had a positive tilt table test. I wanted to scream: I am LYING down on the table here because it is so hard for me to sit up! 

This post isn't about going into the details of those appointments and what made them so bad, but it was disheartening to find that much of the treatment of patients with mysterious and complex chronic illness has changed little since I first got sick.

I had tried several times to return to Dr. Listener, but because of my insurance his office was not accepting any new patients. All of this time, my dad had continued to see Dr. Listener, making the drive regularly to keep him as his PCP. Finally, Dad told Dr. Listener that what I really wanted was to be his patient again. Since our hospital now uses hospitalists, it is no longer relevant that I have a doctor who has rounds here.

Because he made an exception to see me as a patient the office was willing to go through the hoops necessary to accept another Medical Assistance patient. So, on Valentine's Day, I was reunited with Dr. Listener. In our first appointment he helped me with things that my other PCP had been dismissing! 

It took five years, many tears, and a lot of persistence to find my way back to Dr. Listener. Finding a PCP who will work with patients like me is a rare and wonderful gift. I'm humbled, grateful and relieved to have Dr. Listener back on my team.

Blessings,

Emily








Thursday, February 23, 2012

Two Girls with Crazy Bodies

Me and Ellen. 

Two girls with crazy bodies.
Two years of texting and Facebooking about crazy bodies.
Two hours together face-to-face, finally made possible with cooperation of crazy bodies.


Ellen wrote that great summary of our visit a couple of weeks ago. Somehow, while clicking around on FB two years ago she discovered my blog and since then she's left many wise and insightful comments, inspired me with her creativity as a metal worker (I wear her jewelry almost every day), and we've done lots of texting. Despite the fact that we live less than ten minutes apart it took us this long to coordinate a visit! I'm so glad we finally met in person and talked face to face. We may not get to have the face to face interaction often, but it was really special to finally meet the person I'd been texting with and who had been such a wonderful supporter of my journey. 

I've met so many amazing young women making the most of life with chronic illness. People like Ellen inspire me to create meaning in my life in spite of my illness.

Blessings,

Emily


Monday, February 13, 2012

Transformation


Butterfly on our Zinneas Last Fall

We delight in the beauty of the butterfly but rarely admit the changes it has gone through to to achieve that beauty. 
--Maya Angelou--




When I ventured out for a new kind of massage last week, I discovered a lovely plaque with this Maya Angelou quote. I spent the entire month of January in my cocoon. If it wasn't for several necessary medical and therapy appointments I would still be in my cocoon! I spent as many moments as I could in my den, in my recliner, nestled underneath my heated blanket, listening to music and engaging in quiet activities such as knitting. 

I found myself craving quiet time alone (which most of you know is the opposite of my usual self!) in which to pour all of my energy towards transformation. Giving myself the 'space' to process, discern, take care of myself, create, listen to music, and be quiet is something I have not done since very early on in my illness. In these times of quiet, the greatest and most beautiful changes are happening for me.




I feel a lot like a butterfly who still needs more time to grow in her cocoon. I've found that learning to live my life entirely differently and implement those changes to be all-consuming, hard work. Yet it is also liberating and rewarding. Jeannine has been teasing me that I am moving at mach speed because I am changing so fast and calling me "Mach" for short. :) 

As January ended and February arrived, I found myself laughing more and delighting in more simple joys. I've made a concerted effort to seek out joy, and for the first time in a long time I've felt myself laugh more readily and feel more joy, even in the midst of the sadness, grief and anxiety that have gone along with this change. 

To be honest, in some ways, I can't wait for the 'medical stuff' of February to be over, so that I can crawl back into my cocoon and continue on my transformation.

Blessings,
Emily