Monday I followed up with my gastro after being diagnosed with celiac disease in June. I get the impression that they actually don't treat a lot of celiacs there, because every time everyone is always so surprised that I'm feeling completely better and so happy for me. It's kind of funny, but I don't mind. As long as I got the right diagnosis and I'm feeling better, that's all that matters. And maybe because of me they'll learn more about the disease now, which would be able to help other patients. I hope so! Celiac disease can be really hard to get an accurate diagnosis for, much like CRPS, so many people can go years and years with the wrong diagnosis and not feel better. The awareness of celiac disease needs to be spread! There are so many medically-related issues I had throughout my life that I just kind of learned to live with and accepted as who I was that I then discovered were attributed to the disease. Kind of amazing how it interferes with so many aspects of your life without you realizing it.
So yesterday then, I had the appointment with the pain specialist. I found her online, and she seems like a very kind person. I am still in awe of how quickly she diagnosed me! I mean, if after just hearing about my pain, looking at my knees, and feeling my spine she could know with certainty that I have CRPS, then why couldn't any of the other specialists? I guess that's the thing, that some doctors get so stuck in what they're used to treating that they fail to see other options. But anyway I am so grateful to have a diagnosis. To have a name to put to what I'm feeling. It is extremely frustrating to have people always asking me "What's wrong with your knees?" and having to tell them, "honestly, I don't know." I hate having to give that depressing answer and I don't have to anymore! (I have to wear braces on both knees every day because I wouldn't be able to get through the day without them because of the pain, so that's how people see something to ask the question.) To be honest I didn't know what mottling was either before she mentioned it. I had noticed the splotchiness of my skin, but I never thought much of it. And all of the "odd" symptoms (like burning pain, swelling, sensitivity to touch, etc.) that the other doctors couldn't explain? It all made perfect sense to her because it all fits in perfectly with this disease. I just feel very blessed to know what's wrong with me, have a doctor who won't dismiss me because she can't help me anymore, and have new options for treatments.
I have my first nerve block on November 2nd. I'm not too worried, because it seems like a simple enough procedure. After having 3 surgeries and 2 other procedures done, the whole thought of anesthesia and stuff doesn't really freak me too much either. Although I much prefer general to twilight (I'd rather be completely asleep than remember bits and pieces and get frustrated because I can't piece them together correctly in my head), it is what it is and the actual injection only lasts 5-10 minutes so it would be kind of silly to be under general for just that short amount of time. The doctor seems hopeful that several of these blocks could put it into remission. That would be fantastic, but I know not to get my hopes up too high. I will grateful for any kind of relief, because it'll be better than nothing, which is how I've been living. She also put me on Gabapentin (Neurontin) in order to calm down my nerves before the blocks and also Amitriptyline to help me get sleep at night.