I like to think that I have toughened up over the years and nothing much phases me anymore. We have become fairly stoic after 5 years of dealing with the crap hand that has been dealt to us. I don’t panic much these days (well, not nearly as much as I used to) and nothing much surprises me anymore.
However, I am going to throw a little temper tantrum here before I get back to being calm, cool and collected….
So, this CRPS/ RSD deal. Pretty serious stuff. Potentially disabling and disfiguring. Everything points to the best chance of beating it, of achieving remission, is to catch it quickly. The quicker you treat it, the better off you are. The first few months are critical.
We finally got a referral to Rheumatology. (At first we were going to be sent to Pain Management. I won’t go into details here but we sort of fired the Pain doc at Cincinnati Children’s several years ago so going back now was an unpleasant thought. I threw ourselves at their mercy, explained our issue and they kindly referred us to Rheumatology instead. So, that was one disaster averted.) I was finally able to make an appointment yesterday.
The first available appointment is January 29th. January 29th. More than four months away. We will be almost 6 months into the disease process at that point. Every minute counts but we can’t see a doctor for four months. And, there is the little fact that she is getting worse, day by day. The pain continues to spread. Now it is not just in all four limbs and her face and scalp, but in her stomach. Her insides hurt. Everything hurts. More than usual. She is getting skin sores, which are almost certainly caused by CRPS. Her sleep is awful. Her memory and focus is just gone. She is struggling to recall song lyrics and that is devastating for her. CRPS affects the limbic system and so can absolutely cause these widespread symptoms.
And, the kicker is that we don’t know if the rheumatologist will even have anything helpful to offer. I mean, they say they treat CRPS but that doesn’t mean they actually offer what Emily needs. Full body CRPS is a much more complicated situation than having it in one part of the body (which is plenty complicated). We need aggressive treatment to get ahead of it and, forgive my disbelief, but I do not know if Cincinnati Children’s will have the type of treatment we need. (I guess I am afraid they will just offer PT and biofeedback. Those will be part of the puzzle but they cannot be the only options.)
We see Dr. Neilson in October. I am hoping if he actually sees her and grasps how serious it is, maybe he can expedite things. Beyond that, I am trying to find another doctor who is familiar with treating CRPS within traveling distance that can help. Having a plan B will make me more comfortable – the thought of waiting for 4 months only to have to start over again is unbearable. But, apparently developing a Plan B is more challenging that I had hoped. (Incidentally, if anyone reading knows of a great doctor in the western Ohio, eastern Indiana area who can treat full body CRPS, please comment with a name.)
Emily is being a trooper about this. She is desperately trying to stay active. She gets up everyday and gets dressed. She walks and showers and plays with the animals and goes shopping or out to eat when we go. She doesn’t focus on the pain and is pushing on with life. But how long is she going to be able to do this without some relief?
How long can you maintain your regular life with pain levels that have shot up to a daily 9 or 10 and no hope of relief in the foreseeable future? She is doing everything she possibly can to hold it together but she has absolutely no help from her doctors and that is not right. Waiting even a month was going to be too long. Waiting four months is just not ok. Yet, our options are so limited. Finding a doctor who can treat this is harder even than finding an EDS expert and, at the moment, our best option lies with Cincinnati Children’s.
Yet again, we are at the mercy of an invisible foe and the medical system. You’d think we would be used to it by now, but, it is as frustrating and scary as ever. I am really trying to view this as just another mountain to climb but a little help from the medical community would come in handy as we start to climb.