Dealing With a Life Sentence

First, let me say how very much I love my wife – even when I do stupid things that hurt her. God has blessed her in many ways, but culinary skill was not one of them. (Did I mention I love her very much?) So, I usually do the lion’s share of food prep in our house. I am no Julia Child, but I do alright. Using razor sharp kitchen implements takes a certain amount of confidence. Confidence that you will create a beautiful dinner for your family without inadvertently slicing off a finger. A few years ago, I was using one of those mandolin-type slicers that cut vegetables so thin you can read a newspaper through them. They come with a plastic guard to keep a safe distance between the razor sharp blade and the aforementioned finger. A smarter man would have been using that guard, but I am not a smart man. (GROSS-OUT ALERT IN 3..2..1..) It seems that, in addition to slicing a wicked thin pile of onions, I also nearly sliced off the tip of one of my fingers.

Then came the obligatory rush to the minor emergency clinic (seemed major to me) to have my finger returned to its rightful configuration. Yes, getting TWO STITCHES was the most painful thing I have experienced since Kenny G’s first album.

That brings me to the point that pain is completely relative to the person experiencing the pain. A couple days after getting the stitches, I had no pain at all, but my wife lives in a world where the pain is intense and without end. It is a prison for her – a life sentence without the possibility of parole.

That put things in perspective for me. Now, when I fall off a ladder (as I did trimming a tree a couple weekends ago), it gives me pause. As I was looking up at the sky from the yard, I thought, “Well, this is nothing compared to what she has.” I know pain is not a contest, but it does make me think twice before I complain about my back hurting when she is in her chair unable to get into a comfortable position.

I try my best to understand RSD – I do. It’s hard because my back was fine in a couple days, but her pain will never go away. The best her meds will ever do for her is make her slightly less uncomfortable. That’s gotta suck. I would have gone completely mad years ago, but she has the grace and faith to somehow hold herself together through all of this. I have heard it said that God will never give you more than you can handle. Well, she is a living example of what God can do on earth because I certainly could not handle what she lives with every day.
I should remember that when I do stupid, hurtful things.

There's Yer Trouble

One of the toughest things about being a husband to an RSD partner is the feeling of helplessness. You know how guys are…we’re fixers. I have accidentally fixed a few things around the house over the years, but I can’t fix this, and that’s hard to take sometimes. I suppose I should be consoled by the fact that her doctor can’t really fix it either, but that doesn’t help her situation much.

Really, this is along the same lines as my last post. All they’re doing is throwing a bunch of drugs at it and hoping it helps. It probably does for most people, but I wish there were a better, more long-term solution. RSD has forever changed my wife, both physically and otherwise.

I’m afraid to touch her for fear of hurting her. About a week ago, I walked by as she was sitting in her chair, and the movement of the air as I passed by hurt her. It creates a fear in me of doing something wrong that is eroding my ability to do the things we used to do. I have resigned myself to the reality that we will never go skydiving, mountain biking, or anything which begins with the word “extreme.” That’s Ok, I never wanted to do those things anyway (plus I haven’t met my deductible yet this year). But, giving her a hug or rubbing up against her – it’s those everyday things I miss.

The mental and emotional things are tough, too. That’s where the whole “Two Worlds..” thing comes into play. No matter how crappy my day is at work, I will have spent it without the constant feeling that fire is running through my every vein. Seriously, how are you supposed to deal with that kind of thing? It is no wonder RSD and depression seem to come hand in hand. No matter how much I listen, how much I empathize or how much I want to fix her…I will never BE her. And being her is the difference. That’s what keeps the wall between us. I can comfort her when she has a flare-up, but I can’t do anything to fix it. It’s like we’re both on a roller coaster neither of us wanted to ride, but we’re strapped in and headed up that first big incline.

The only meaningful revelation I have had in the last 13 years is that RSD is not one disease. It is a series of dreadful conditions which, when seen as a whole, is RSD. It not only affects the body, it changes that mind and personality of the one who has it. And the truly ironic thing is that she never asked for this. She never engaged in any deviant behavior which brought this about. RSD chose her; she did not choose it, but here we are.

In 1998, I stood in front of a minister and a few friends and family, and promised her that I would always be there. All the things you promise her – sickness and health, richer and poorer and so on. Well, I hope this is the "sickness" part. I am ready for her to have some health. She deserves it, and so do I.

I’m still working on the “richer” part.

Lots of pain...No gain

If I went into the ER at any hospital with, say, a broken arm, doctors would know exactly what to do in order to treat my injury. It is the same for many other conditions, like diabetes and hypertension. But there is no scientific standard nor solid clinical criteria for measuring pain. It is completely subjective and treatment of chronic pain is based almost solely on the experience of the physician and feedback provided by the patient. In 2010, that is totally unacceptable.

In an age when we can transplant organs and grow human tissue in a lab, RSD patients are still going in to their pain management doctor like toddlers. “I have a boo-boo and it’s this big (cue arm gesture showing how big).” It’s like my wife should pick something from the treasure box after a med check. It is surprising and frustrating that researchers have not made more progress on pain issues in recent years. As far as I can tell, all doctors are able to do is put patients on a cocktail of drugs more suited to tranquilizing an elephant. Well, there is also the Ketamine option. That is if you don’t mind filling your body with a drug most commonly used on dogs and cats. Ketamine was developed in 1962 as an alternative to phencyclidine…hello, that’s PCP!! Subjects treated with Ketamine frequently experience symptoms of psychosis, including delusions and hallucinations – and not in the good, fun way.

So, those are your choices – a mind-altering chemical cocktail, or an infusion of a hallucination-inducing drug taken at raves. Sweet!

I guess I am just frustrated at the lack of treatment options for RSD patients. A ton of money has been raised for high profile diseases like breast cancer, which is great, but it feels like RSD has been forgotten. In fact, my experience has been that 95% of people I meet have never even heard of RSD. Some estimates put the number of patients suffering from RSD in the US at around a million. So, my question is how many more suffering people are needed before someone takes up the cause on a national scale? Where is the RSD celebrity spokesperson? Where are the telethons and the $1000 a plate fundraisers?

The NIH does have scientists working on chronic pain, including RSD, but I just wonder how much of a priority that is for them. Drug companies certainly aren’t paying much attention. RSD is not a sexy, media-friendly disease. Drug companies put more cash into erectile dysfunction than pain. Ain’t that somethin'? My wife is in constant, agonizing pain, but some middle-aged guy somewhere can get his groove on. Thank you, pharmaceutical industry, for pooling your resources into what will make the most profit for the company, rather than looking at a group of suffering people who have been completely forgotten.

50 Words or Less

When I met my wife in 1997, she was really self conscious about the scar on her neck. She was about a year out from a fusion in her cervical spine and she had a scar on the front on her neck where the surgeon went in. To be honest, I was a lot more focused on how good looking she was. It took her quite some time to believe me when I said her scar didn’t matter to me.

Around that time, she was experiencing a tingling sensation in her left hand, but we were falling in love and didn’t think much about it. As the months went on, it gradually began to get worse and it started moving up her arm to her shoulder. Those of you with RSD can probably guess what happened from there. In the thirteen years since, the RSD has made its way to her right arm and down to her legs. It may now even be in her face. It’s a progression with which many of you are probably familiar.

That’s her story in 50 words or less, but there is a lot more to tell.

So, what is this blog? Well, it’s really a couple of things. First, it’s a way for me to get some feelings out about her situation and how helpless I feel as her husband and partner, but I also hope it lets those of you with RSD know that you are not alone. There are many other people out there struggling with issues similar to yours. As you all know, RSD affects not only the sufferer, but their family as well. That’s the story I am going to tell. The story of what it’s like on the other side of the pain. The story of what it is like to watch your beloved partner slowly lose function and deal with pain on a daily basis which most of us cannot imagine.

There are two sides to RSD. What the patient experiences, and what their family experiences. There is no possible way for me to feel what she is feeling, but I can be there in the best way I know how. The reality is that I can never truly connect with her on that level because I don’t feel the pain. No matter how much we love each other, there will always be a barrier between her world and mine.

I hope our story helps you in some way. Your feedback and comments are always welcome.