Post Soundtrack: November Rain by Guns N Roses
It seems I have found something worth blogging about. I never figured myself to be the sort to blog my thoughts and feelings, but this struggle I have begun is something I am not alone in. Perhaps some of us have many of the same thoughts and feelings, but are afraid to speak them out loud. Sometimes these things are painful, or shaming, or just expressing them makes them almost too real to deal with. It's a harsh thing, having to come to terms with life with Lupus. We don't have to feel isolated, and this is my small attempt to share my experience, so others won't feel so alone.
So first I will tell you my story of how I came to be diagnosed.
I honestly am not sure how far back my symptoms truly go. I can tell you when I began to suspect that something was wrong, however. Thirteen years ago, sometime after my son was born, I noticed two things that were very different than they used to be. Firstly was my hair loss. I had very long hair, usually somewhere around the middle of my back, occasionally as long as to my tailbone. All my life I'd had long hair, but all of a sudden there was a lot more hair on the shower wall. Yes, it's an odd habit, but due to how long my hair was, I tended to gather what loose hair I got tangled in my fingers when washing it, and stick it to the shower wall until I was done. It used to be just a few strands, no big deal. But it had changed to being more like what you'd expect from a hairbrush. It made me frown, but didn't really alarm me all that much.
Combined with my second problem, though, I was concerned. You see, despite being happy to be a mother, I found myself absolutely exhausted and sleeping through the afternoons. I know that likely some of you will suggest post-partum problems, but this did not fade. If anything, it got worse as my son got older. I felt horribly guilty for dozing on the couch when he was old enough to crawl or cruise. One day, after he learned to walk, I had napped, only to wake up to an odd sound. I went to look, and found my son on the other side of the very heavy sliding glass back door. I was shocked. He had managed to open the front door, walk around the house, and tap on the glass door to get my attention. Talk about a wake-up call.
So I did some research on what could involve both exhaustion and hair loss. The main thing that came up was Lupus, which scared me. I was hesitant to get too worked up, though, as those were two very minor problems in the range of issues Lupus patients had. So I went to my doctor and asked to be tested. My doctor at the time looked at me with exasperation, but tolerated the request. The blood tests came back negative, and the issue was dropped.
Life went on for several more years, until I had the chance to have lens implants in my eyes. (My eye difficulties are something I will address another time.) After the implants, I was shifted to another ophthalmologist. After examining me the first time, he told me to have my doctor test me for auto-immune problems, specifically Lupus. Alarms went off in my head, as we'd never really figured out what had caused my eye problems. So I dutifully and anxiously went to my doctor (a different one from last time) and asked to be tested. The blood test results were negative again, so life moved on once more.
Years passed again, but slowly certain things came to my attention. My exhaustion was rearing its ugly head again. I first dismissed it as stress and normal tiredness. I was babysitting regularly at the time for working mothers I knew, and could have as many as four children in the house, from diapers to my own elementary school age boy. That wasn't all, though. Joint aches began to crop up from time to time. I remember once I had stayed home from church services because I was sick. I had to go to the living room for something, and as I hobbled down the hallway, it felt as if someone had stuck a piece of rebar up in my hip socket instead of the bone that should be there. It was terribly painful, and had me gasping and crying. It got my attention, and I went back to researching online.
The more I looked, the more concerned I became, and the more common my joint aches became. I played World of Warcraft avidly, but was slowly having to play less and less. I used to be able to participate in raids and battlegrounds that lasted three or four hours. It came down to my being able to tolerate it only for about an hour, then I would have to stop, because my fingers and wrists felt swollen and hot. This was not right. It was time to see my doctor.
In I went (different doctor yet again), with hubby beside me. I told him hesitantly and fearfully about my joint aches, about my exhaustion, all the while fearing he would say I was a hypochondriac. He listened, then sent me to do a bunch of blood tests. I went willingly, hoping it would reveal something this time. No dice. It all came back negative. My doctor explained patiently and condescendingly that I just had a weak constitution, and that if I was tired, I should sleep. He briefly massaged my finger joints, and said they weren't swollen, and would say no more about my joint pain. I wanted to believe him, and so went home feeling relieved and reassured.
Except that my joint pain and tiredness did not abate. They only got worse.
After enduring late summer monsoons, during which I could predict when it would rain and when it wouldn't via my joints, and after a winter that still was filled with great pain that kept me home almost all the time, we finally decided enough was enough. If I had to bully my doctor into sending me to a rheumatologist, I would. While I did some research online for local rheumys who understood Lupus, hubby did some research into our insurance policy. Glory of glories, it turned out we didn't need a referral from my regular doctor. We coudl by-pass him altogether and go straight to the rheumatologist. It was a vast relief not to have to confront the doctor and tell him he was wrong and to send me to a doctor who knew what I was talking about!
So we made that first appointment, which ended up being a three month wait. I hated waiting that long to finally talk to someone who could tell me if I was crazy or not, but at least the ball was rolling... sort of. So I filled the time doing as much learning about Lupus as I could. I skimmed books, I pored over facts online. Finally the day came, and I went in with fear and trembling.
It was a baffling experience. It was at a teaching university, so the doctor had two students with him. They talked over my head, sometimes saying things I could follow (due to my research) and other times speaking gibberish as far as I was concerned. My eyes got some attention, with the doc calling them mangled. I also found out that apparently my arms are hyper-extensive. He had me hold out my arms horizontally, palms up. To my astonishment, all three of them began exclaiming and playing with how far and what directions my joints could bend. I just stared at them as if they'd lost their minds, and answered no, I hadn't shown off being flexible as a child. They tested me for fibro, but none of the points were tender or painful. However, as if on a hunch, the doc reached behind me and touched first one point behind my hips (ouch!), and then the other (YOWCH!). The right side felt like he was pressing crushed glass into my bone, oooh, how it hurt!
Well, that began a bit of a journey. That first appointment had him suspecting ankylosing spondylitis, which he tested for along with all the other markers for autoimmune problems. The results were, predictably, negative. However, this doctor did not dismiss my pain and distress. He assured me that he would do his best to get to the bottom of it, if possible, but for the time being, he was going to do his best to address my pain.
It was a process for certain. He first tried putting me on a very high amount of ibuprofen daily. I was taking 800mg pills three times a day. That helped some, but didn't do much more than muffle the pain. Then he tried putting me on prednisone along with the ibuprofen. The way I came up to describe it is unorthodox, but accurate to how it felt. Imagine an entire room filled with speakers, all laying on the floor pointing upward. Now imagine them all playing some loud music. That's my pain. Sometimes they would be turned up loud, sometimes softer, but it always was a racket, you see? The ibuprofen's impact was like tossing a nice thick blanket over the speakers. It muffles them, but doesn't really take too much away from the noise, even when the 'volume' was low. When he added prednisone, it was astonishing, because it was like going through this room of speakers and unplugging a bunch of them. He later upped my prednisone dose, and it was like more of the speakers were unplugged, leaving me with just a handful, though they still boomed out the music pretty loud sometimes. I could use the ibuprofen to help muffle it, but it was still there.
So his next move was to put me on methotrexate. The difference was again startling. While the prednisone pulled the plugs on the speakers, and ibuprofen muffled them, MTX was like volume control. It forced the volume range to stay lower, softer. It was pretty near to bliss to me. It was also hugely impactful to me that it was possible to really do something about the pain. It gave me hope that maybe, just maybe, we could solve this. Make it better.
November was a heavenly month, very nearly pain-free and so very cheerful for me. But that all changed. Again.
During the Thanksgiving trip to my in-laws, I had a terrible pain attack. A pain attack was something different from my usual pain, reminding me more of seizure than anything else. It would come in waves, wrack my body with intense pain, and then fade slowly away. The one I had at Thanksgiving was the worst I'd ever had. I got through it, though, and hoped that would be it. It wasn't. Somewhere about that point, I began noticing feeling flushed from time to time, but without a fever. I dismissed it.
Early in December we had an unseasonable cold snap. It got severely cold, for this area, and I suffered badly for it. It was crippling, and had me curled up at home constantly, taking as much ibuprofen as I was allowed. It seems like since that time, I haven't had more than a week or so of good days before things get painful again. Meanwhile I kept having those face flushes. I finally asked my doctor about it two appointments ago now. He asked for pictures. Let me tell you, it was so hard on me taking those pictures. It's difficult to describe, as it has to do with fear of Lupus, fear of it not being Lupus, fear I'm making much about nothing, just plain fear.
Last appointment, when I showed him those pictures, some of them he dismissed, but several had whatever it was he was looking for. Yes indeed, this was a malar rash, and that meant he was declaring this Lupus officially.
I think I handled it well. I'd had a long time to think about it, to build up to it, to consider the possibility. Perhaps I even handled it too well. I leaked tears on the way home, and fretted a lot afterwards, and fought against the idea of death. I sought support from friends and family, some of which met my expectations, and some of which fell woefully short. They all love me, though, and I know they can't always be exactly what I need. I've spent time since then trying to come to grips with this life-changing diagnosis.
It's been a month since coming face-to-face with my fears. I still haven't had the hysterical crying fit I expected to, though I know I've fought it down quite a few times. I think it's settled into the minds of most folks I'm close to, though I have no idea how many of them grasp it. So here I am, ready to share my journey, my feelings, my inner thoughts, and my experiences with the world. Buckle up tight, y'all. It's gonna be a rough ride.