Hi everyone,

I wanted to take some time to thank all of you for your continued concern and wishes for our family. As most of you know, Erin unexpectedly became unhealthy in the beginning of the year. Her main symptoms are chest tightness, labored inhaling and exhaling, exhaustion, burning leg muscles and involuntary muscle spasms when she is at rest/sleeping. In April, after going to the ER for extreme chest and throat tightness, she had to kick and scream before the hospital would admit her. They did admit her and didn't do much of anything for a week other than charge us a lot of money for the stay. She was told to follow up outpatient with a respiratory specialist, which she did. She was diagnosed with asthma after a simple PFT (pulmonary function test) and put on a bunch of expensive prescription medicines....inhaled steroids, nasal sprays, allergy pills...etc. These did little to curb the symptoms, in fact, they began to get progressively worse and far more frequent. Everyday tasks like blow drying her hair and chopping vegetables would exhaust her to the point where she would not be able to do more than lay still to try and regain her energy and breath. Her body, only when laying at rest and asleep, started to spasm involuntarily and randomly. During extensive and severe times of the tightness and breathlessness, her thigh and hamstring muscles would feel like they are burning.

At a 6 week follow up appointment with the pulmonologist that diagnosed her with asthma, she explained to him that there was no improvement and that things had gotten significantly worse. During this appointment, the doctor did not even look at her, only at his chart to which everything looked good to him. We were told to continue on the meds and that it was probably just stress. :-/

Needless to say, the following months were filled with hundreds of "episodes" of these very specific symptoms. The meds did not help. Episodes of severe symptoms would last minutes, hours, days and weeks with no rhyme nor reason to when, how severe or how long they would be. Erin would sleep to escape the pain of being awake. (Sorry for the emo description y'all). The stress and frustration was very high on both her and me. I could not see how she could go from a healthy 30 year old woman to not being able to walk the dog so fast and how all these supposed maintenance medications did nothing to alleviate her symptoms.

Well, fast forward to this past Sunday. During a particularly long and intense episode (it began on September 3rd), unable to curb the symptoms, we decided to go back to the hospital. We went to the ER at Tampa General Hospital with the mindset that the resources there would be a better place. Hoping to find people that cared enough to listen to us and cared enough to look at Erin and agree that she was NOT WELL.

The doctors became very concerned, admitted her and immediately agreed that something was up, and that it probably was not asthma. The head pulmonologist at the hospital, who also works with the University of South Florida, is ruling out asthma. Things like the absence of any kind of wheeze, her high pulse/ox and the fact that none of the maintenance meds worked were strong indicators for him. Tests to this point were a chest x-ray, a chest CT scan, and EKG, and echo-cardiogram, a swallowing test and a test to see how much oxygen she maintained under light exertion. All were positive. A more investigative PFT was done and it has been determined that asthma is not the problem. Something I've been exclaiming for months.

Right now, we are about to involve a neurologist and see if perhaps that is where we need to look. An MRI of Erin's brain was performed today, and after some LONG waiting hours the results showed no type of atrophy or anything of note, in other words, positive. The pulmonologist has said on many occasions that she does not have asthma, yet he is still ordering and performing tests to help eliminate any doubt. They'll be sticking a camera down her throat today or tomorrow to look at her vocal chords, trachea, bronchi and bronchial tissue. The neurologist will be seeing her either today or tomorrow. That's about where we stand.

We are very happy and thankful that the doctors and medical personnel are listening to us and not just shoving us aside, claiming there is nothing wrong just because everything looks fine to them on their charts and tests. We seem to have found people that can see she is not well and are dedicated to finding out why and if/how to treat it. I'm not quite sure why that compassion has been so hard to find in this endless maze of physicians and money and missed work and stress and frustration and....you get the picture.

Thank you all again, for your kind words, caring and support. As you know, Erin left her family and friends from a lifetime in Cambridge, MA to move to Florida and be with me. Her support group is small here. Hearing from everyone wishing her well, making her laugh, and offering whatever they can has been a huge positive throughout this entire ordeal. Please continue.

Go Yankees.