Napa is beautiful! (I didn’t think to get picture of something other than my feet, though)

I had another rheumatology appointment in Napa yesterday (August 17th). I am very sad that it was the last one with my current doctor; I really liked him. (he is moving to San Jose and taking his part of the practice with him.) I was wishing today that I had the energy to drive even further each time I needed to see the rheumatologist, approved because I like him so much, rx I would go to San Jose to see him. But tomorrow I am going to call around to the surrounding areas nearest me and see if I can find a doctor closer to me that might be willing to take me on as a patient (basically, treatment they need to take MediCal, because according to their online profiles, they are all accepting new patients), because ultimately, the drive is wiping me out physically (for obvious reasons) and financially (even in our more gas-friendly car).

waiting to see rheumatologist in Napa

So diving into the appointment, yesterday’s appointment was another difficult one. After last month’s appointment my doctor had me do some blood work in Napa before I went home. It was another very specialized test. It’s called a myositis panel. It’s checking for very specific autoantibodies. All of mine came back negative except for one. One called ribonucleoprotein. This autoantibody is associated with mixed connective tissue diseases such as systemic lupus erythematosus and systemic sclerosis (scleroderma); both of which I have! My doctor said “this does confirm the mixed connective tissue disease, and also confirms that what you’re feeling is not just in your head; that you’re not going crazy.” Which, quite honestly, there were some days that I really felt like I had (gone crazy)! He did also say, though, that my numbers were such that my disease is quite progressed and it’s going to be aggressive, and that I will need to be concerned about rheumatoid arthritis, and since I carry the gene (my mom had RA), my likelihood of getting RA will be very high. So we will be watching for those symptoms. My rheumatoid factor has remained negative up to this point, though, so that is a plus!

At my last visit, they taught me how to administer the weekly injections of the methotrexate treatment he ordered (the one that was denied by the insurance). Turns out it is less than $20 per month for this treatment, so at least it’s affordable. (off topic: I have decided to appeal their decision to deny this medication since it is something that I’ll likely need to be on for the rest of my life; we’ll see how that goes.) Anyway, back on topic, I start giving myself these injections next Wednesday. I am a little nervous as I have never had to give myself any kind of injection before. I have tested my blood sugar before (there was a brief moment a couple years ago when my primary physician thought I might have low blood sugar issues so he gave me a glucose meter), but that’s different, and quite easy. Not at all like having to stick a needle in your gut every week. I am just thankful that they’re weekly injections and not daily! Yikes!

I am still trying to process all of this. This life-changing information. There were a few days where I thought I had; where I thought “I got this”, and then as I continue my research (because I want to learn everything that I can about these diseases), my heart sinks even further. Especially when I’m connecting the dots with conditions that I already have (ie: last fall I was diagnosed with Barrett’s Esophagus and severe GERD).

But I am still trying to do my best to not let it get me down. Trying to stay positive, and just get through one day at a time. Because I know that God has a bigger plan for me in all of this. I may not know what it is just yet (and maybe I will never know), but ultimately I want His will in all of this, whatever it may be.

Until next time….

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