Let's Catch Up

This has been a big year for me so far, but I've failed to keep up my blog, so let's catch up, shall we?

Most of you probably already know that I started a business in January, selling my hand made goods. It's growing slowly, and I'm okay with that. It has given me at least a small sense of purpose which is so helpful for my mental health.

Many of you also already know that I had an article published in a magazine. Being published has been a long time dream of mine and it felt incredible to have the opportunity.
             (My article was published in the April issue of Holl & Lane magazine.)

Now for the stuff most of you don't know:

I had decided to take some time off from going to doctor's offices at the beginning of this year. But during the last days of December, a rather large, ominous looking mass was discovered and all the doctor-y people got up in a tizzy and had me running around to a bunch of different locations, getting ultrasounds and biopsies and all that fun stuff done to see if I had cancer. It turned out to be nothing, thankfully, but of course it was very stressful and scary and then a huge relief to my doctors and my husband (who until this very moment is the only other person who knew anything about all that drama) when we finally knew that I don't have cancer. Phew!

Then I puffed up into a gigantic painful puff-ball of inflammation. And I had a doctor appointment during that time and so the doctor could finally see a symptom with his very own eyes and he sent me for new blood tests. And my blood tests finally showed some positive results!
Finally, visible proof of at least one thing!
This was such a big deal to me. I know it sounds kind of ridiculous but I was so incredibly grateful.

And then shortly after that, the nurse from my Rheumatologist's office called and told me that the Rheumy wanted me on a certain medication immediately, for the inflammation, because

...INSERT DRUM ROLL HERE...

I have Undifferentiated Connective Tissue Disease.

I hung up the phone feeling kinda dazed and hubby was like, "What? What is it?" And I was like, "I think I just got diagnosed." 

And it was basically the most anticlimactic moment imaginable considering we've been fighting for this day for so long.

It was like a shoulder shrug. Like, No Big Deal. You haven't been waiting for years to hear actual diagnostic words or anything.

And then the next week my inflammation hit an all new level of crazy. It was like my body wanted to advertise that we finally did figure this thing out. Here, my body said, have some more proof. I took a short round of steroids and it worked, further convincing my doctor that he is on the right track.

I had looked at connective tissue diseases before, while researching my symptoms and pouring over internet medical cites. Things like Lupus and Rheumatoid Arthritis and Sjogren's fall into this category. But somehow I never did come across Undifferentiated connective tissue disease.

I started reading and it was like all these little sparks were flying and connections were happening and I'm suddenly feeling like, a little bit, I'm reading about myself.

There was this moment of calm that happened. This feeling of, Oh My God, I'm really not making this up...I'm really not just losing my mind and making myself sick or psychosomati-cising myself or anything like that. I have a real thing. Like, it's REAL. Other people have this too.

And then I immediately felt like I couldn't tell anyone about it.

I know...weird, right?

I'm not sure what my problem was...I guess, a little bit, I was afraid of getting advice and I was afraid of judgement.

And I kind of couldn't figure out how to say the words.

I wanted to process it all for a little while before answering questions and fielding whatever it is that happens when you tell people your diagnosis.

Because I realized, I don't know what happens when you tell people your diagnosis. I've never been here before. I really don't know how to be a person with a diagnosis. I know exactly how to be a person without one. It's almost like, in some weird way, this identity shift happens, but at the same time, exactly NOTHING has changed...I can't even adequately describe how it felt. I think I'm still in disbelief, a little bit.

And then there's the fact that the diagnosis I received is kind of a limbo diagnosis...it's like, I have this thing that hasn't quite developed into a thing we have a name for...I'm floating in the middle of all these other things, not quite fully into one label or another...yet...They're saying, we know you are having a connective tissue problem, we just don't know what the problem is specifically.

Which then sort of started to feel like it wasn't a diagnosis at all.

But then I saw the neurologist, who suddenly treated me like a patient with a valid complaint. He was a totally different person to me when he received a note from another doctor explaining that I have a REAL problem.

You've no idea what a relief that was, to be treated like a valid patient by him. It was another moment where I could say, I'm not crazy...I really did sense him not believing me before. Because now, even hubby can see he is treating me differently and it sheds light on his past behavior that we just kept trying to write off as a poor bedside manner... And he's willing to consider now that my brain lesions are meaningful, significant, and important.

So it's May, 6.5 years in and I have a diagnosis and I'm receiving treatment. I don't really know how well it's working yet, because it takes a long time for this medication to provide the full benefits, but my hair has stopped falling out. That must be a good sign.

I'm running a tiny business. And I'm a published writer. And I've managed to take a walk every day for the past month and a half. And I get to have a booth at a craft fair later this summer...

So, in at least a few small ways, things are kind of looking up.