I have been writing, obviously, but I have also been reading—a lot. Books, magazines, journal articles, reddit, twitter threads, memes, anything and everything. I also consume a huge amount of video media. Shows and movies mostly. Sarah keeps adding to the list of documentaries that I should watch but the list just keeps getting longer as I turn on another old episode of ancient aliens. And music. There’s a show on and the radio blasting and I am writing. Amongst the papers stacked on top of my desk are lists of my favorite songs. There are so many great songs that sometimes I forget the names and, when they pop into my playlist again, I am running for paper and pen. Some songs prompt a story. Sometimes they evoke a feeling and then that feeling brings a story. Oftentimes it’s just that I really enjoy it and it was the song that was playing as I was starting or finishing a piece. Sometimes, it sounds so nice, I wanna hear the same song twice.
Just to be clear, I never, ever stopped writing. I just stopped sharing it as much here. I went back and read some of the old blog posts. I was angry and upset a lot of the times that I came here to write. It was cathartic then, it is now, but I am not so angry anymore. Sure, I have my moments, but I lost a lot of anger when a lot of my pain went away.
I suppose there are a lot of gaps in the stories of my life that I share here. Maybe the gaps are a different story entirely, one that I just haven’t shared yet. If you know me, you may know that I have always suffered from allergies—food and seasonal—and spent a lot of my teen years in doctor’s offices to figure out that it was allergies. Mom knew there was something wrong with me. Before she passed away, she made me swear not to have any more babies—I almost immediately signed the paperwork to have a tubal ligation at the time of the birth of my third child—and did so well before the time that they wouldn’t allow you to make such a decision (when you are really far along or during labor). I don’t even want to pull out the soapbox right now but I will say this: it’s fucking bullshit that I had to have had three children and or like permission from my husband to get such a procedure at my age! What. The. Fuck. I could have died every pregnancy. It was my blood pressure that went wild when I had my first pregnancy. Mom and I were close when I was a teen, the last kid at home still. She had taken me to the doctor all the time and she had said that she wanted to get her money’s worth out of the outrageous insurance premiums they were paying for us to keep it. But maybe she knew there was something wrong with me that somebody was eventually going to figure out, and lord knows she tried her best to help me. My blood pressure as a child and teen was always on the low side of normal, the doctors were not concerned about it when I asked. But when I got pregnant with my first child, my blood pressure went the other direction and I was pre-eclamptic and toxemic. I had to stay in the delivery room for hours after Anna Lee was born, before they finally sent me to a regular room; they wanted my blood pressure to go down before they moved me. They also didn’t want to tell me that, but I could definitely see, hear, and understand that shit was serious, Mom and the nurses talking around and over me like I just didn’t need to be worried about it. Mom definitely knew something was wrong with me. None of my pregnancies were easy on my body. There’s something wrong with me.
I knew it too. I always have, but it’s hard to get help when you don’t know what “normal” is supposed to be like. For me it was five rounds of antibiotics followed by a prednisone pack in about a six monthish period of time and I knew everything that I personally needed to know about what was wrong with me. Autoimmune disorder. A lot of research told me that it probably wasn’t a good one to have, but I am not a doctor so I couldn’t exactly figure it or fix it completely on my own. But when a pack of prednisone cures every ache in my whole body, and I can breathe so easily again, all the inflammation just…goes away…it fucking means something.
Now, let me just vent a little more in this moment: fuck all of you people in my life that ever told me that all of my illness symptoms were all in my head. I can’t help that there’s something wrong with me and that I didn’t yet have a doctor smart enough to figure it out. And I don’t appreciate that you thought that I was just some kinda hypochondriac, thinking that I am sick all the time without actually being sick. Step on a lego.
It was Sarah who gave me my first real diagnosis of part of my symptoms—which, in part, led me to again begin to research autoimmune disorders and which one it could be possibly. They had told me that I had an infection, another UTI, based on lymphocytes in the urine sample. After the last round of antibiotics and I was still in tremendous pain and discomfort, Sarah said: interstitial cystitis. I went back to the urologist and asked him what the fuck was wrong with me. The latest urine test had been sent out for culture and returned with no growth. They had been repeatedly treating me for infections that I didn’t necessarily have because of the lymphocytes in my urine. He diagnosed interstitial cystitis and offered me overactive bladder medication and suggested a procedure to stretch my bladder (no fuckin thanks, guy). The medication made me feel like I couldn’t empty my bladder and like I was retaining (even more) water. I said fuck these meds and a little later went to the urogynecologist, who gave me some different medication. One of them was elavil (amitryptaline) which was used to stop some of the bladder and abdominal pain and tension. It made me want to kill myself. I hadn’t had those thoughts since right after Mom had died. I stopped that medication and called the doctor. With her guidance I completely changed my diet and started chasing my daily orange juice with Prelief calcium tablet supplements.
The next diagnosis from Sarah happened when winter came on last year and we were working outside together. My bones ached. Arthritis of some kind, she said. I should go to the rheumatologist. But a rash happened first and for about 20 days I had this unbearably itchy rash on my back and I ended up going to the doctor and getting steroids and ended up at the dermatologist. The dermatologist did bloodwork and despite the steroids, I had a positive ANA. They referred me to the rheumatologist. The rheumatologist did a whole bunch of bloodwork. And xrays. And then MRIs of my hips and pelvis.
Non-radiographic Axial Spondyloarthritis, falling within the Ankylosing Spondylitis category of rheumatic arthritis disorders. That’s what they are “classifying my pain as of now.” At my last appointment, I asked for clarification of this point, “is this the official diagnosis or do I need to worry about some other really obscure illness that it actually is?” And they seemed to indicate that this was, indeed, the determination of the diagnosis with the information and symptom set that was documented. I go back soon, with more questions and some new symptoms/issues. BUT the most important part of that last appointment was that I told them, “How bad does this have to get before someone decides that something should be done about it? All I want to do is skateboard, run, walk or whatever I want to physically do every day without being in constant pain.” At that time I had stopped skateboarding every day because it made my foot hurt so bad when I did every day that I had to alternate running/walking instead of skateboarding every day. My doctor is a fellow with a dr boss, as I am fond of referring to him, and, after their little hallway meeting, and after I asked how bad it had to get, boss doctor said give me some celebrex, and we would know pretty quickly whether or not it would work. Bless that man. Celebrex was like a fucking miracle. I can’t wait to tell them how much my pain has improved. They also ordered physical therapy, which I completed and it did help make my hips and pelvis stronger, however, when I did the exercises twice daily I was in so much more pain than I had been since starting the medication, that told them that I am not doing it every day. I do exercises when I feel like it and if I am sore I don’t. Simple as that. No reason to push myself to the point of pain every day. Not when I don’t have to be in pain all day every day anymore.
And that’s made a huge difference in my attitude and the way that I approach every day of my life now. I had a lot of pain before—physical pain—and now that the majority of it is gone, it’s a little bit easier for me to…just be. Even though the journey is no where near over, I am glad that I am able to, every day, improve myself and my life a little bit. Tomorrow we get to cross another small goal off my list of things that I needed to accomplish, and tonight, though it is late, I will rest well and look forward to the bright, sunny morning ahead.
