Once again, I find myself in a physician’s waiting room. I know I say this quite a bit but I feel very lucky to actually like and respect the physicians on my team. Especially this one. It’s my neurosurgeon. The one that held my puke bucket for me all those years ago. Funny side story; when I was on the phone with Mercy Central Scheduling for the two fusion surgeries last November, the nurse on the phone asked me which surgeon would be the lead and when I told her Rob Wienecke, she said, “Aw, he is so sweet. I used to work for his daddy when he was alive and practicing and I changed many of Robbie’s diapers.” I’m sure Rob would be thrilled to hear that. And no, I’ve never shared that with him. But it does make me smile every time I see him.
Today, I’m exactly 9 months from the second surgery. To think back to that day (granted, I have no knowledge of much until later that evening when I became VERY aware of what that surgery entailed) and compare it to now. So much has happened during this time. I was saved from a wheelchair by the surgery only to be hit with Lupus and Sjogren’s three months later. It’s been a lesson in patience (I’m still not that great with that one), acceptance, and resignation. And I don’t think for only me. Mike has had some things to reconcile and my poor mentor has gotten to see someone else learn many of the lessons he learned a few years ago with his own illness. The children have grown in ways I wish they hadn’t needed to but they are becoming wonderful women because of it. Riley has acquired empathy not usually seen in 11 year old children (with the exception of her little sister who still endures her wrath nearly every day.) Rae knows what is going on but is still learning to phrase her words in a less harsh way. She thinks on a very mature level and loves to update her vocabulary but is still learning that words, even when said in love, can hurt. Plus it’s hard not to giggle a little when she comes up with words like “inappropriate” but with her speech impediment comes out “inapwopwiate”, usually when she is tired. The last few months have changed all of my girls and in some ways it saddens me. Caity moved home from New Orleans partially because of me. I’m not deluded, I also know a certain young man had something to do with the decision but I know I played a part.
I’ve learned that getting upset, angry and obstinate just don’t help things. Denial ends up hurting me not only physically but mentally and emotionally. There are several Olympians who deal with Lupus and that was something I had a hard time with at first. How can they be so physical and perform so well when I get cross eyed reaching for something on a high shelf? I had to actually sit down, have some quiet time and think it through. All of them are several years downstream from their diagnosis which means they are probably in remission. I am far from that point. 9 months does not equal 12 years by any means of measurement. I have to deal with Sjogren’s as well. And yes, I can tell a difference between the Lupus pain (it’s joint pain) and the Sjogren’s pain (it’s connective tissue pain.)
Every day I endure physical therapy seems to help my mental attitude. I should probably have said “survive physical therapy.” But I have a great therapist and I’m pretty much left to myself to do my workout. If something hurts, I let her know and we work through it to see if I’m doing something funky with body positioning or if it’s just not time for me to be doing that exercise yet. I’m having real issues with the last one added. It’s an exercise where I’m on all fours (my knees LOVE this one) and while holding “neutral position” which is not really as comfortable as it sounds: abs tight, hips rotated to the rear to form a straight back and glutes tight. Does that sound neutral to you??? Anyway, holding that position you raise one arm in front 10 times with three sets, switch to other arm, then do each leg. The arms are fine. My right leg? Different story. The first fusion surgery where the rods were placed left a screw on my right hip that is palpable, especially since I lost 30 lb. The muscle lies over the screw and the rubbing of the muscle on the screw causes “irritation”.
I just got back to the exam room and I’m staring at my latest x ray. Everything looks the same to me. I’m always floored by what I see. Before the last surgery, I was floored by the damage I saw. Now it’s seeing how straight my spine is. To me, it’s a miracle. The images are so clear, I was a little afraid you’d see the Hostess Mini Donuts I had for breakfast sitting there. But no, those have moved on, so to speak.
Yes, it’s been a long 9 months. But I truly feel like I got just a little bit of my life back. Almost makes me want to move my birthday from June to November but then I wouldn’t get to take all those great early summer vacations for my birthday.
The appt is over. Everything was fine except for the aforementioned screw. He said we could remove it and cut the rod off at the next screw up. That scares me a bit even though he swore it would be okay. All I wanted was a simple cover to dull the edges of the screw. Apparently there is no such thing. We decided I would keep coping and see if building the muscle helps. If not, it would be a simple outpatient procedure about an hour long. I just don’t want to step foot back into a hospital, outpatient or not, for a while. I enjoy just driving by and waving.