So, I know it’s been AGES since I’ve posted. I have actually been sick for a few years, and have been trying for almost as long to find a specialist who would see me. It has been a battle of finding someone who was taking new patients as well as was accepting my insurance.
First of all, a couple of years ago, my primary physician did some routine blood work that showed that I had a high ANA level. (for those who don’t know what that means, it is a marker for autoimmune diseases) So ever since that first blood work came back, he’s been trying to find me a rheumatologist. I live in California, and apparently there aren’t a whole lot of them here (who’d have thunk it, right?). They sent my file to nearly all of them and waited. And waited. All the while rerunning my ANA panel every couple of months to monitor my numbers.
It had been a struggle. There were offices that were accepting my insurance, but weren’t currently accepting new patients, or were accepting new patients but not accepting my insurance. And it went on like this for over a year. Until finally we got a call back from Stanford Medical Center. Hallelujah!! They schedule my appointment (they’re pretty booked, so it’s about 4 months out, making my appointment for February of this year), and I wait. 3 weeks before the appointment, they call me and ask me what insurance I have because my doc’s office never sent that information over. I tell them, and they say “Oh, we don’t take that kind of insurance.” I literally started crying. We’ve just wasted 4 months! She apologizes and hangs up. I call my doctor’s office and let the referral gal know, and we start ALL over in our search.
Fast forward a couple of months, the last week of June to be exact, and I get a call from a rheumatology office down in Napa, and they have my file and would like to schedule an appointment for a consult, could I possibly come in the next day? Whoa!! I apologize because I’m caught off guard, and tell her that I’m unable to take the day off work that quickly, so she schedules my appointment for two weeks out. While I’m on the phone, I verify that they DO in fact accept my insurance, praise Jesus!
Consult appointment day is here, and my awesome friend makes the drive with me (Napa is approximately 3-4 hours away from where I live depending on traffic and road conditions)! I am nervous, excited, and even a little bit scared. We get to the appointment and meet the doctor, who I really like by the way. To get to know me, and my symptoms, he is asking me all sorts of questions, and looking at (the very small amount of stuff) the information that my doctor sent over (can you believe that my doctor didn’t even send over my recent labs??). He orders a bunch of lab work and X-rays of his own and sets up an appointment for a follow up in 2 weeks. In the mean time, he gives me an idea of what he thinks I might have. But he wants to wait for labs to come back to give me a definitive answer.
During these two weeks, I am doing research on the two autoimmune diseases that he told me about that he thinks I might have. Neither of them sound very pleasant. They are both life-long diseases, but both are treatable. Finally I have to stop because there’s no use getting worked up when I don’t have the answers yet.
Two week follow up day is here (which was last Wednesday, July 20th), and now My Loving Man makes the trip with me. He likes my doctor, too. After checking in with how I’m feeling (I had forgotten to mention that he prescribed me some prednisone for some of the inflammation I have been having because of some arthritis), and seeing that I am doing a bit better, he tells me his diagnosis. Lupus and fibromyalgia with underlying systemic sclerosis. <bomb drops> Lupus was one of the diseases he’d mentioned at the previous appointment, so I was half expecting that, but I was not expecting the fibro diagnosis.
I have done A LOT of research on my own over the last year, so in a way, I wasn’t surprised by the lupus or systemic sclerosis (especially the systemic sclerosis, as that showed up over a year ago in some blood work, but my primary physician wrote it off as a false positive). Most of my symptoms fit the systemic sclerosis. I was having a little harder time making the lupus fit, as my symptoms aren’t as obvious as the systemic sclerosis, but it does still fit.
I am still working on processing these diagnoses; the idea that I have life-long diseases that affect my livelihood, my day-to-day and how I’ll feel for the rest of my life, it’s still stressful and gut-wrenching to say the least . I have had a few days of feeling very depressed (it runs in my family pretty deep). But I am trying not to let it bring me down.
Now we work on finding the right treatment (the original treatment pan he wanted to do, the insurance denied it). So I go back for another follow up on August 17th. It will actually be my last appointment with him, as he is moving to San Jose to open up his own practice, so I will be seeing his associate after that. I am hoping I like her as much as I like him.
If you’ve made it this far, thank you. I appreciate you! I plan on trying to keep up with journaling (if you can call it that) about my illness adventures here on this old photography blog. I’ll try to still post photography stuff as well, but who knows since I’ve not been so great about it in the past. =P
So for now, here are a couple iphone snappies. (a selfie-which I’m not sure I’ve ever posted on here but depicts how I’m feeling right about now; a cool artwork piece that was edited using an app called Prisma, and then an adorable picture of Miss Ruby Tuesday that’s sure to make you smile!)
(All images and videos owned and copyrighted by Beckie Kengle. Please do NOT copy, save or print. For image use, please contact Beckie via email at beckie[at]beckiegkengle[dot]com)