So, there’s been a LOT going on lately.

A lot.

As many of you know, I’m getting married! Which is great. The Surprise is everything I could have hoped for in a partner and I am exceptionally happy. There’s a wedding website and everything, so if you want to go see pictures of us being cute and ridiculous (and my most GLORIOUS blue hair), you can.

And it’s summer season, so rodeo is in full swing! Work keeps me plenty busy. The wedding keeps me busy when work doesn’t. Though I prefer being busy to not, I’m looking forward to my vacation next week when Celessy comes into town! It’s been two and a half years since I’ve seen her in person and that is TOO LONG.

But all that was totally expected. I knew, going into this summer, that I would be crazy busy. Wedding planning and work were going to consume most of my time. What was not expected was the health issues that have popped up.

Very few, if any of you, know that I had a kind of odd and nasty scare in May. I alluded to it a couple posts ago, but that post was mostly about community and joy in finding one. And I didn’t really share that post around. So very few of you know even that I’ve spent the last two-plus months under this cloud of, “What is happening in my body?” And now that I finally have some answers, I figured I was ready to share a little. So, from the beginning:

In mid-May, my hands started hurting so badly I wondered if I had gone sleep walking and fallen over, catching myself on my hands. That scared me for a lot of reasons. Mostly for the, “How could I not wake up to that?” But, there were no signs of infection or puncture wounds or the like and I had rarely sleep walked before, so it was a possibility. Also a possible cause was the new supplement I had been taking (on doctor’s orders) for about a week.  I thought it was strange that I would react solely in my hands to an oral supplement and that it would take so long for me to react, but I figured it was a good policy to stop the supplement for a while to see if that helped.

Thankfully, the next day provided some answers. While still in a lot of pain on my palms and in my fingers, I noticed that I was having a hard time removing my rings (which are usually loose on me). The pain was caused by swelling – ah hah! So, I made an appointment with the doctor because random swelling is ALSO kind of a scary prospect. I went in and explained my symptoms. I told the doctor that I had started the new supplement, but – oh, by the way – I had been diagnosed as pre-arthritic four years before. She looked over my joints and said, “Well, we can hope it goes away and, if it gets bad again, you can come back. Or we can just do some blood tests for rheumatoid arthritis now.”

I really had been thinking it was the supplement. But I didn’t see the point of waiting for the hurt to come BACK if  we could run tests then. So, I told them to take the blood. They told me they’d call early the next week with the results.

On the following Tuesday, I got a call. “On the three tests we ran, you tested positive for RA on one. It’s only a soft pass, but the doctor still wants to send you to see a rheumatologist in light of your symptoms.” This was it. This was the moment I had been warned was coming four years earlier and I was in no way prepared for it. Rheumatoid arthritis is an auto-immune disease. As someone who has lived in the same house as someone with an auto-immune disease for most of her life, I knew – if only to a certain extent – what this meant. And I was terrified. I clung to that “soft pass” like a lost soul. Maybe I still had some time before it came on full bore. I was really hoping to be married and have a kid or two before I had to deal with this. What did this mean for having kids? Auto-immune diseases are NOTHING to mess with and the treatments can really screw with child bearing ability.

This is how my brain works – worst case scenarios first. In some twisted way, it helps.

All of this ran through my head as the lady continued, “Just to warn you, though, we’re short on rheumatologists in the Springs. It takes a while to get an appointment. You might have to go to Denver.” Okay, fine. I can do Denver, I have a doctor there already, no big deal. I told her to refer my case to the office she thought would get me in quickest, thinking it would *maybe* take four to five weeks.

Wednesday, I got a call. Nine weeks.  I had to wait nine full weeks to see a rheumatologist. And this was already a full week after getting tested. So, start to finish, I had to wait ten weeks to get answers. And I really didn’t have another choice, so I took the appointment.

Those were not the best nine weeks of my life. I was so busy and stressed and then, at the most ridiculously inconvenient times, my brain would remind me, “Hey, you have RA. You’re sick. You have no idea what this means for the rest of your life, but you know it’s not good.” REAL HELPFUL, BRAIN, THANKS. And I had more flare-ups in those nine weeks than I had in the previous four years. I figure stress probably had something to do with it, but that just made all the fear and not knowing worse.

Finally, on Wednesday, I got to sit down with the doctor. I fully expected him to say, “You have RA. Here’s what we’ll do.” I was sort of prepared for it. I was not prepared to hear him say, “I know you have an auto-immune disease, but I don’t think you have RA.” Turns out, my soft pass was just not convincing enough, but on one of the other blood panels, the panel for lupus, was pretty darn convincing. However, that blood test is easy to get a false positive on. Also, my history of back pain could indicate a connective tissue disorder common in the family members of those with Chron’s Disease (the auto-immune disorder my sister has). So, while I got a few answers, I didn’t get anything definitive. The doctor ordered a new battery of tests to double check the RA and lupus tests and to check for the possibility of the connective tissue disease. But he did tell me they were all treatable with the caveat, “This won’t go away.”

That is NEVER fun to hear from your doctor. I’ve heard it once before. It’s hard. Even if you know in your head that the disease you face is life-long, it is depressing as hell to have a doctor confirm that what you have is incurable, even if its manageable.

And I don’t know if you know what it feels like to live with a life-long disease, but it sucks. You hate your broken body or broken mind. You loathe yourself for NOTHING that you can control. You feel SO SMALL, so beaten down by the disease that invades your life. It’s so big you can’t escape for a second. You get up every dang morning wondering what your brain or body is going to do to you today, asking yourself, “Can I even do this?” And the answer is always, “You don’t have much of a choice.” And sometimes, you find you can’t do it, but that very few people understand why you can’t because you’re so normal most of the time. What makes this day any different from the next? And you have no good answer to that question. It just is different. And it’s awful. And you hate yourself even more. I have lived through this since I was ten and it took me a very long time to stop hating myself for my Bi-Polar and learning to live every day without it dragging me into this dangerously cyclical self-loathing.

And then I learned that my body is fundamentally broken. Bad enough that, while I’ve beaten the self-loathing, I still hang on tenterhooks, waiting for the day that my brain betrays me, but now I get to wait for the day my body does, too.

I was not in a good place Wednesday. Or Thursday. And I’m kind of still not today. I have good hope that it won’t take me a dozen years to figure out this particular life-long disease, but it’s still going to take some time. The answers I get from the tests will help. Those come in three weeks. But the fact of the matter is, the answers won’t change much. They’ll help my mental state and they’ll help treat my physical state, but they won’t change the facts. I have two life-long disorders. And that’s hard to swallow.

But, despite the pain of this bitter news, I’m doing okay. I’ve not expecting myself to just magically be okay with this. I’m giving myself space to process. I’m going to learn what life is like with an auto-immune disease and I’ll adjust. And, I know I can do it. I’ve done it before with Bi-Polar. I can do it again here. I can re-define myself with the disease without becoming the disease. That, as I adjust, I can own my life as I wish to.

So, while I’m scared and in the slow process of figuring things out, I’m feeling okay. I promise.

This is what’s up right now. It’s not super great, but I can handle it. Any hugs you feel like giving me will be much appreciated, because love always helps. But don’t worry. Please.

Because I know I’m little, and broken, but still good.

Yeah.

Still good.*

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*Thanks to Lilo & Stitch  for the most excellent summary of how I’m feeling right now.

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