Check out http://www.underourskin.com/

My blog too talks about my Chronic Lyme Disease….

I am sorry about your frustration and disappointment. These are certainly understandable feelings given what you expected going in to the specialist appointment and what you were told during it. It must make you apprehensive to be sent out of your area for care. Anyone would have anxiety over that, I think.

The good news is you’ve been referred to a center with an excellent reputation (Disclaimer: I don’t ever endorse any doctors or centers but Johns Hopkins is a generally recognized center for high quality health care), the doctor seems to have listened carefully to what’s happening, and this may truly be for the best in the long run at getting to the bottom of what’s happening. If the doctors can pinpoint what the cause is (whatever label they end up using for it), they will have much better luck at managing your symptoms the best way possible. While they may not be able to cure whatever it is, you’ll have that peace of mindful, hopefully, of knowing what you’re dealing with.

I know you are anxious to get better and this is a blow time-wise to what you had envisioned for getting things to improve ASAP.

I’ve been chronically ill since I was 13 and I’m 40 now. What started as one chronic illness has grown to a list far too long for me to recite by memory. I have to keep a list of my illnesses in my computer and update it every time I get a new diagnosis so that when I have doctor appointments with forms to fill out, I can just say “see attached”. This saves me an enormous amount of energy and time since some of those medical history forms would take hours for me to fill out otherwise. But I digress.

Many of my conditions are autoimmune and I also have some serious neurological problems. So, I can really empathize with you. It can take lots of time and determination to find the right doctor or team of doctors.

While your disappointment at the outcome of the appointment is totally understandable, it sounds as if that doctor might have really done you a huge service. Rather than use you as a guinea pig and try things randomly like some doctors do, rather than refer you to another specialist closer to where you live, this doctor is taking the somewhat rare jump of directing you to a center where he believes you’ll get the best care.

It may be inconvenient, scary, and even expensive but if they are able to help you improve your quality of life and, hopefully, help you manage your pain… it will be worth it.

Hang in there! I know it’s hard. It sounds like you’re in good hands, though.

I’m going to close with one of my favorite quotes. I often close my blog posts with it:

“Once you choose hope, anything is possible”.
~~ Christopher Reeve

Jeanne

P.S. I love that door picture too! I may be tempted to use that image myself someday. I see that you found it on Flickr. What a great image.

You are most admired, take care ~~ Cathy