Hip Hip Hooray! Home Care!

I finally have some news on the home care front, and it's good news!


I received a call today from my home care nurse that MA approved the next three weeks worth of visits!


After that, MA requires weekly or bi-weekly pre-authorization of visits so we will always be a bit up in the air as to whether or not visits will continue to be approved, but for now we are CELEBRATING!


My nurse, Jess, came yesterday even though the visits had yet to be approved. It was a good way to mark the completion of 35 weeks of treatment!


We have a fantastic packet of information that we worked tirelessly to compile. Hopefully the letters from myself, Dr. ANS, Dr. Lyme, and the journal articles will continue to be 'enough' for MA to approve visits. At this point, the folks at home nursing take care of all of the issues with MA, so Jess said to me today: "It's my job to worry about this now. It's my job to take care of it."


Do you know how wonderful it is to hear those kind of words? For the past few weeks all I've done is micromanage my health care. It's been too much for me emotionally and physically. Just to have Jess 'get' how much work these things take, and pick up the slack means so much! My PCPs office really poked along on the home care process, so that is why it has taken me so long to have any news.


I am so happy and so relieved.  Having Jess here yesterday reminded me of all the things I love about home care. Safe. Sterile. Comfortable. Consistent. I no longer have to worry about how long I might have to sit upright waiting for an appointment, whether the 'good' nurses are there that day, whether I might pick up an additional 'bug' or infection, whether the port change will truly be done in a sterile manner, whether my blood work will have been called from one location to another, how long I'll have to wait for the pharmacy to have the Rocephin ready, and so on.


Home care requires so much less emotional and physical energy and so much less micromanaging of medical details. If something hasn't been taken care of that needs to be, then Jess will just pick up the phone and get it done. 


It also means that the same person sees my port site every week, monitors my BP and vital signs, and someone is always available through home nursing if questions, concerns or problems arise (and I have had to use this in the past).


If for any reason home care would not continue to be approved, we will likely work with the home care agency to negotiate a possible price to continue visits as an out of pocket expense. They are a non-profit agency and willing to do such a thing. We hope, however, that we will not have to do this but it is an option.  


Just wanted to share my relief, excitement and gratitude with you all! Thank you all for your good thoughts and prayers during this process. And thank you for 'getting' how hard things have been since I lost home care.


I'm feeling ready to blog again. I've missed it.


Blessings,


Emily

Processing...

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: 


Processing...

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.


Blessings,


Emily

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.