While I’m generally a pretty positive spoonie – and a cooperative patient as well – being treated like hot garbage by my rheumatologist’s office while he is emergently off without anyone covering him – FOR SIX WEEKS – leaving all of his patients without our medications, sending me into a CRPS pain crisis with the added stress of dealing with a medical assistant – the only person available in his office – who has been stringing me along all week, has really left me in a less than charitable state of mind when it comes to this situation.
(Of note, my appointment with him was cancelled on June 29th – so there has been plenty of time for his office to sort this with an on-call MD – and there are many in his clinic. They simply have chosen not to.)
The above picture is of the Lupie rash that is beginning to blossom on my face as I write to you because my body is just bursting with autoimmune symptoms today, as I have been dealing with the beginnings of this flare. I am having unreal stabbing pains throughout my body, the likes of which I haven’t experienced in quite sometime – and I only expect it to get worse as medications are out of my body that I’ve been on for years without even a taper – stopped at the moment simply because the doctor isn’t in.
My face is throbbing and my feet are ablaze as well. This is triggering a cascade of symptoms. Good times.
As I have written in the past, many spoonies, myself included, have medical anxiety – and some of us even have medical PTSD – from years of fighting doctors, pharmacies, and insurance companies to be heard, get correct diagnosis, have the meds we need covered, and receive treatments and therapies appropriate for our conditions.
Not only are our illnesses often difficult to diagnose, they are also usually really expensive to treat – so it is an uphill battle for us from the start. In addition, chronic pain is often handled inappropriately – and chronic pain patients are frequently not believed or treated poorly.
Several years ago, I wrote a post about a young chronic pain patient who took her life because she simply could not get any help or relief for her pain – and was turned away from the ER when she was desperate:
Unfortunately, because we tend to have such complex illnesses and spend so much time in medical settings, we often bear witness to the worst aspects of care..
And this is where I find myself, seeing the very worst of treatment.
I am not alone in my situation. I have a dear spoonie friend who sees this physician sitting in this same boat. In fact, every patient of his has been treated in this manner – left without medication for six weeks, told to deal with it, more or less.
I am absolutely appalled at this. I never imagined, having seen this physician since 2014, that he would do such a thing.
I never imagined any doctor would do such a thing.
This is completely unethical and beyond contemptible. It is dangerous. It is treating his patients as though their physical as well as their mental health doesn’t matter, as it seems it doesn’t to this practice.
While all of this can be addressed in due time, that does nothing to help any of us right now. We have no recourse but to suffer and pray. The mind balks.
In my case, this is triggering a flare that is only making things even worse – med changes and stress do that – and I have no way to control what happens here. What’s worse, I’m sure I’m not the only patient who is in such a spiral as this is the very nature of autoimmune disease.
I am so damn angry. And upset. And frightened. And in some pretty breathtaking pain.
I cannot imagine trying to get through this without my amazing husband and my precious daughter and my Henry – ❤ – and my sweet Daddy checking in and all the love and support I have – so I worry terribly for my fellow spoonies who are battling through this on their own. I pray that they feel held and can press through this awfulness.
I certainly have some thoughts for the good doctor soon for the suffering he is causing many of us.
We are not disposable, and our health, as well as our pain matters, dammit.
Be well, everybody. Take care of yourselves and each other.
Grace and Blessings.