As you may have noticed, I have not been writing on this blog much. This is due, in large part, to the fact that there isn't much to report ... aside from intimate details of my struggles with breast revision surgery, depression and post traumatic stress disorder. None of these things warrant interesting posts, unless you are feeling like an exhibitionist, which - oddly - I am not.
I'm not certain when this desire for privacy descended upon me. I obviously was not suffering from it when I made posts like about my nipple failure and cervix removal. But, I guess time has created distance from the crisis of last year and I feel a little less like "here is my world: be in it" and a little more like "none of your business. Leave me alone."
However, yesterday Jen posted that she hadn't seen an update in a while and that she hoped everything was better. Me too. Sadly, this is not in the cards for me. I'm not sure what I have done to upset God or whatever greater power it is that holds meaning for you, but what the *&%#?
It appears as though another battle lies in front of me. It is not cancer, luckily, but "possibly rheumatoid arthritis and/or a systemic disease that can affect all parts of the body." Oh, also, there is no cure. Whoop, whoop. For this, I will break my blogger silence and for this I will again ask: "what the &^$@?"
It all started a few weeks ago with a little pain in my finger joints. This has happened before, and is a documented side effect of Tamoxifen, the drug that I will take for five years to block the absorption of estrogen. Three weeks ago, I saw my oncologist for a regular three-month visit and he told me to take some tylenol for the pain. He also said that if that doesn't help, we could try something stronger, like ibuprofen. Yes. That is so re-assuring. Tylenol will certainly help with the fact that I cannot bend my fingers enough to hold a toothbrush.
A week later, the pain was continuing to spread to other joints in my body. Affected were: my right knee, the arches of both feet, both hands and my left ankle. I called to complain about the lack of positive progress with the tylenol regimen and I was told to stop taking the tamoxifen for a three week trial.
The trial has proven to be a failure. My symptoms are worse now than they were two weeks ago. In fact, each day is more painful than the last. Which reminds me of this quote from Office Space:
Peter Gibbons: "So I was sitting in my cubicle today, and I realized, ever since I started working, every single day of my life has been worse than the day before it. So that means that every single day that you see me, that's on the worst day of my life." Dr. Swanson: "What about today? Is today the worst day of your life?"
Dr. Swanson: "Wow, that's messed up."
Today is definitely
not the worst day of my life. Whatever this is, certainly cancer was worse. But, yesterday, I could not put any weight on my left ankle; Scott offered to carry me to the shower. I walk down the stairs with jerky and spastic movements that closely resemble Tucker fron There's Something About Mary. I sleep with wrist braces. I am unable to lift a gallon of milk with one hand. I have been waking up with intense pain in my shoulder ... or thumbs ... or knees. Luckily, the pain subsides over the course of the day and remains at bay until I enter a period of inactivity. So, when most of you see me, I'm in fairly good shape. It is only my family and work friends who see me in my morning crippledom. I guess that is a silver lining.
In summary, I have an as-of-yet undiagnosed illness. The preliminary bloodwork and my symptoms are consistent with rheumatoid arthritis and Sjogren's syndrome. I am in the process of scheduling an appointment with apparent new best friend, the rheumatologist. I'll know more in the coming weeks, but I would like to leave you with a list of possible symptoms to which I may look forward:
- corneal ulcerations
- autoimmune pancreatitis
- recurrent bronchitis
- a sore or cracked tongue
- primary biliary cirrhosis - whatever that is
- dental decay
- neurologic "problems" - as if I need any more of those
- debilitating fatigue
- nodular subcutaneous legions
- tethering of joint tissues
- deformity
- etc., etc., etc.
- Oh, and an increased risk of lymphoma - that old thing
