Friday, August 06, 2010

An 'Un-Sugar-Coated' Update

Last night I was able to spend some time with Mom sitting on the patio, processing the many emotions I'm feeling as we approach one year of treatment on the Rocephin.  I am filled with so many unanswered questions and facing difficult decisions about my medical care and my treatment.  

Physically, I've been struggling immensely since increasing the Rocephin after Carrie, Sam and David left. It makes me weak and tired. It aggravates my ANS so that standing and sitting become even more difficult. It makes me feel out of it. Sometimes I have trouble finding the words I need.  It increases my neck pain. I can't even remember the last time I left the house, other than for a short StRoll in The Rolls.

Treatment also makes me very emotional. I don't know if I become emotional simply because I feel crappy, or because the Rocephin is targeting the Central Nervous System and as the Lyme dies off, I'm more likely to experience cognitive problems, depression, anxiety, and ANS agitation. 

One day, I tried to write an email to several family members. When I re-read it later, I almost cried. I felt embarrassed that the email was so inarticulate and repetitive. This is one of the major reasons I haven't been able to blog lately. 

Along with the effects of the treatment itself I'm dealing with a lot of medical issues. 
Some of the issues are the constant battles for medications I need ("Formulary" has to be one of my least favorite words!), keeping up with day to day things such as the infusions, medication refills, home care, coordinating care between doctors, etc. What seems like it should be a simple phone consult or prescription refill can often turn into a time-consuming and stressful 'project'. 

I don't know how a person has time to 'rest and heal' when they are fighting so many other battles. It is incredibly frustrating!

On a larger scale though, I'm feeling very up in the air about my medical team and how we move forward in treatment as we approach one year of IV antibiotics. The major reason I never blogged about our trip to NJ and NY is because it left me feeling that I needed to make some major changes in my medical care, and I've spent much of the summer navigating that. Thankfully, through a time that feels very chaotic, Dr. ANS has remained my steadfast 'point guard.' 

I know that the chaos and transition will lead me to where I need to be. At first our trip to NJ and NY felt like a huge disappointment and waste of time, energy and money. Later, as I processed the trip, I realized that it served as confirmation that I needed to 'shake things up', that I needed new eyes and minds on my team. I'm confident that this transition will lead me to where I need to be in terms of better treatment and care, but being in the midst of the chaos has been incredibly difficult. 

So, between the physical challenges of the treatment itself, the daily demands of managing my care, the questions about how best to proceed with and find a new team, and wondering where I 'should' be this far into treatment, I've been feeling overwhelmed and exhausted.  That is the honest, and 'un-sugar-coated' scoop. 

I am grateful today for the energy to blog, and I pray that I will be able to resume this one thing that I treasure so very much.  Thank you for continuing to bless me in so many ways.



Photos:  Zinnia's that Abbie brought from her yard. Aren't they gorgeous?


Katherine said...

Hi Emily--Thank you for your frank description of your status.
I am glad you have a doctor who is doing all he can to get you treatment and improvement.
I'm thinking of you.

Rachel said...

Thank you for sharing the un-sugar-coated truth. I know it is hard to put all of that out there. Thanks for blogging and keeping us in the loop.

Hugs and prayers,

alia said...

*hug* sorry you have to make choices. when you're sick, you really want someone else to just tuck you in and take care of it all. i hope that soon you get to have a a proper rest and heal time.

Ellen said...

A few yrs ago I saw a NYTimes article about the Undiagnosed Diseases Center at NIH. They take hard to diagnose patients and put together a team of specialists and try to figure out what's really going on. Have you ever thought of having a consult with such a place?