Monday, June 07, 2010


As many of you know, we recently returned from a trip to New Jersey and New York to see two Lyme doctors. We took an extra day to stay at a bed an breakfast near the ocean. Because of privacy concerns I didn't post on Facebook or my blog that we would be away.

Although we've been back since May 26th, I'm still in recuperation mode. Having to go for outpatient port access hasn't helped this too much!

Overall, the trip was very difficult, and I feel like that little status bar on the computer that says: 


Still Processing....

As much as I want to be able to say we really had a chance to relax at the beach for a day, we didn't. I know each of you was soooo hoping Mom and I would feel like we had a bit of a vacation. It saddens me not to be able to report better news in that department.

The trip was very difficult emotionally and physically. The doctors appointments have left me with a lot to think about, and more questions than answers. 

We drove 650 miles in four days in seriously crazy traffic (including driving through NYC! Yikes!). So much for me sleeping in the car. Thankfully, we had our new car which is much, much safer than our old one is and much, much  more comfortable. I can recline almost flat in the front seat. 

In other news:

Since our return home any energy I have has been going to working on getting a packet together to try to get home care reinstated. We have a good packet with letters from Dr. ANS, Dr. Lyme, journal articles, a letter we wrote, etc. It took a huge team effort to get this all done, and I can't believe how many hours Mom and I spent on it all.

I feel like I have so much riding on getting home care again. Not having it has been such an emotional experience and diminished my quality of life so significantly. So far each outing has lasted about three hours, and has not gone smoothly!

Please send good thoughts and prayers that I will be able to get home care again! I know I need this for healing!

Hopefully, I will be able to blog next week about my appointments. And maybe I'll have some good news for a change about home care. I'm really hoping that I will get a bit of a break from so much medical stuff, get home care reinstated and be able to get back to having some quality of life even in the midst of treatment.



Photo: Hartshorne Park. Next door to the B and B we stayed at. Interestingly, the brochure for the park had a reminder about Lyme Disease and watching for ticks. 

1 comment:

Katherine said...

Hi Emily--I am sorry your trip was so tiring. Travel in crazy traffic that far is exhausting for anyone, I can't imagine how tiring it must have been for you. I understand how your one overnight at a b and b would not be restful. I'm glad you tried it however.

I hope the home care comes through for you soon. I just am aghast by how inhuman the people who made this decision have to be; how wrong is the system that allows that. Surely someone rational and caring will read your support materials and reinstate it.

I've been thinking of you lots--every day.