I’ve been getting a lot of this lately. People are so sweet and genuine in their comments. I do appreciate hearing that. I want to look good. But I also somehow feel a bit guilty. Who am I to complain when I look so great? I’m a horrible liar, so when people ask how I am, I have to tell the truth. I don’t feel good. I don’t know why I look good, but I’m so happy that I do, because I’m an aesthetic type who needs to “look good” to “feel good.” I also thrive when my surroundings are beautiful. Many of my Instagram and Facebook are pictures are of nature and animals. I photoshop them because the final result gives me great pleasure. Gardening and camping do the same.
I originally started this blog because I’ve always been able to express myself better on paper. In front of people I get tongue tied and word-clumsy. I finally had the inspiration to update everyone yesterday after running into so many friends at Parent Teacher Night and having to answer the question “how are you?” multiple times.
So here it is. Since yesterday was unusually active, I could not wake up today. By that I mean that I felt the same as after major surgery in the recovery room! Groggy is an understatement. Unless you’ve had anesthesia or sleeping pills, you cannot understand this feeling. It takes monumental effort to move anything. And when I do, the day really starts. I make a fist to see how bad the arthritis is this morning-every joint is swollen and painful. My toes are starting to hurt. My stomach feels like I just ate a huge meal and the nausea is arriving. I get up because I have to-quickly-it’s already 7:45 and my kids have to get to school. Thank G-d my son is able to drive (without a license yet) so all I have to do is get myself into the car. I stand up and black out a bit, stand on painful toes and stumble into the bathroom, trying not to fall. I take my morning medicines, brush my teeth carefully, avoiding the gums that were just operated on because in the last few months my gums have receded so much that the roots of my once amazing teeth are exposed. I had the first of two grafts from the roof of my mouth two weeks ago. The graft is not doing great, part is dying back.
I make it to the car where I try to wake up so that I can make it back home without an accident. Last week I crashed the tail light. The week before, I shattered the back window pulling out of the carport with the hatch up. We’ve spent thousands of dollars fixing all the body damage that I’ve inflicted on this car before I understood that it wasn’t really my fault. I used to be an extremely dexterous, coordinated person. I was encouraged to become a plastic surgeon when I was a surgery resident way back in the 90’s. That’s when I was able to run 13 miles, survive on no sleep every third night and still go out at night in Manhattan! Since then, my handwriting has changed and I can’t control it much. I’m clumsy and trip all the time. My legs are bruised all over. I break things in the house every day, torturing myself with major cleanups. When I feel good, on those rare days, I notice a huge difference in my coordination. I feel more in control when I’m driving. I can accomplish a lot more in the day, as I’m able to multitask like I used to. But those days are rare. Those are the days that I will get dressed, put makeup on and look my best. Those are the days you will run into me and say “you look great!”
Right now my neck and back hurt. I got the usual 4 or 5 shots of Botox to my neck which I try to get every few months, otherwise my head turns to the right uncontrollably. I mean all the way to the right so that I can actually look over my shoulder, kind of like an owl. This is downright embarrassing when you’re at the eye doctor who asks you to look at his nose and keep your head straight. It’s also embarrassing when you get a haircut and can’t stay still. I’m lucky because cervical dystonia used to be considered a psychiatric problem until imaging improved enough that they’ve localized it to the basal ganglia in the brain. That’s sarcoidosis! Weird stuff that destroys various parts of your body and causes a host of unrelated symptoms that overwhelm the doctors and make you feel like you’re crazy. At least the nightly vertigo is gone. Being woken at 2 AM because the room is spinning so fast is no fun. Without the Botox, not only does my head turn, but trying to keep it straight all day causes the opposing muscles to hurt terribly. This leads to tension headaches and terrible trigger points of pain along the shoulder blades. The pain is so bad that when they stick the Botox needle in the spot, it actually feels great! Fortunately, I have wonderful doctors. They use a machine that practically screams when it’s in the spastic muscle. Very satisfying.
The other problem with all the neurologic issues in my head (tinnitus and hearing loss too), is that one thing leads to another. Something about all this has caused my right eye to cross. It’s more apparent when I’m tired. My husband notices it mostly and it’s pretty hard to notice with my glasses on-part of the reason I wear them. But the head turning, eye crossing and owl neck don’t do a lot for my self esteem. So you won’t be running into me on bad days-I’m too embarrassed!
I have pain over my chest where my port was replaced a couple days ago. I have a port in order to get the infusion medicines that are supposed to keep the sarcoidosis at bay and maybe put it in remission. I think these medicines destroyed my veins because they also “look great,” but it takes an average of 3 sticks to get a working IV in my arm. And I bruise-like really bruise-huge, purple and ugly! Again, the aesthetic issue. Also what will people think? An anesthesiologist with huge arm bruises and evidence of needle sticks? Or maybe an abusive husband?? I can’t have any of that! So the port is logical. Nobody sees it. I put numbing medicine on before I get an infusion and don’t even feel the needle. It can remain for as many years as I need it. Perfect solution!
Of course, I’m a rare case with the port too because a couple months after getting (and loving) it, it stopped working. This is pretty rare so soon, and is usually caused by a clot at the tip. So you have to make an appointment with Interventional Radiology, go to the hospital like you would for surgery, and they try to figure out why it’s not working by injecting radioactive dye. My port, of course, did not have the standard clot. It was kinked and curled up in the wrong vein instead of sitting nicely near the entrance to my heart. So the fellow decided to try and fix it, rather than replace it. This required anesthesia and a poke near the groin to fish a grasper up through the heart to pull the end of the catheter and straighten out the kinks. That was a few weeks ago. The port worked for another session, then partially for one after that, then stopped again. Another appointment with IR. Another anesthetic. Another giant bruise on my chest. Pain when I move around. No lifting for another two weeks which I can never abide by, as someone needs to get the groceries into the house! I learned that a gallon of milk weighs 5 pounds. I’m not supposed to lift that, but I’m right handed and the port is on the right and I need milk in my coffee every day!
My fingers are getting misshapen gradually. The rheumatologist is concerned because I’m having a flare despite the three powerful immunosuppressants. She may have to add a fourth medication if it doesn’t get better by my next checkup.
And then there’s the digestion. Two more miserable tests to try to figure out what’s wrong after over two years of suffering. Suffering because I get as bloated as I did during the last few months of pregnancy. Bloated enough to keep popping hernias despite the mesh fix I had last year. It’s pretty clear to me as a doctor what’s going on, but the doctors who take care of me have to have proof. Pretty much, the food that I eat doesn’t move through because the nerves that control peristalsis are shot. So without the combination of four to six other drugs (besides the ones for the sarcoid), I would be vomiting after eating. But this has gone from bad to worse over the last year. I’m nauseated a lot now which is new. Until the food moves through, I sometimes do vomit. This happens even though I stick to a mostly softer or liquid diet. But the good new is that I was finally accepted as a patient into the Hopkins GI Motility Clinic, after over a year and a half of trying to get in. I have a great gastroenterologist, but there’s only so much he can do. So what do I look forward to these days? My appointment in the Motility Clinic!
So, although I look good, this is my life! Yes, I might do projects in the house, but only on those rare days that I feel better. I will do something in the four hour window that I have that day before the exhaustion forces me back to bed. But I will feel accomplished and have another beautiful thing to look at from my vantage points in the bed or on the sofa! THIS is my life now! But I am glad that I can still look good.
Please keep the compliments coming!