Hello Again

Ok, so I haven’t posted to this blog for a while. The good news is that I haven’t had much on my mind about my wife’s RSD for quite some time. She seems to be going through a relatively good stretch with her pain. Curiously, the number of meds she is on now pales in comparison to what it used to be. That, of course, will lead one to wonder if we were ever on the right track with all those medications in the first place. I prefer not to speculate for fear of losing my tenuous grip on positivity.

Her new doctor’s style has really put things in perspective for me, and probably her as well. It sheds some light on the fact that there is no solid protocol for treating RSD, and that every doctor seems to have their own methodology when it comes to pain control. For her new guy, less is more – and it seems to be working pretty well.

I guess what has been on my mind lately is the fact that she is having a really hard time getting comfortable for sleep. Actually, “comfortable” is a bit of a stretch since there really are only degrees of discomfort. She has meds to help her fall asleep, but there seems to be a window of opportunity there. Once she has taken them, the clock begins ticking for her to settle down and fall asleep. If she cannot fall asleep, and misses the window, there is no telling when she will sleep again. There have been times when it took a couple days. So, our nightly ritual now sadly revolves around when she takes her meds and how much time she has to settle into slumber.

From my perspective as a partner, it only serves to further isolate us from each other in the bedroom. Add that to the list of things which drive a wedge squarely between RSD couples. And forget intimacy. She has far more important things on her mind than cuddling with me. And even if we did, chances are I would touch her somewhere that hurts. It’s a really tough position to be in. It’s a total conundrum. She is desperately lonely and isolated from me, just as I am for her, but forces are conspiring to keep us apart in the bedroom. This isn’t even about sex – this is strictly about physical closeness. I know that this is something we both desperately need, but making it happen takes an orchestrated effort on our part, and most attempts end in utter failure.

I used to hear that 80% divorce figure and scoff. “That will never happen to us, we’re too strong together.” But now I am beginning to understand how the insidious nature of RSD seeps into every facet of a relationship. It’s not just the constant pain – it’s the depression, loss of self worth, insomnia and general lack of direction in life. That house is like a prison to her, and no amount of encouragement or prodding on my part will change the fact that it is a struggle for her to get back out into the world again. She feels as though she has lost her purpose, and I completely understand that. I am filled with pity and hopelessness sometimes. It must be hard to live with RSD, but I can tell you from experience that it is also heartbreaking to helplessly watch your partner lose everything which was of value to them – their career, their independence, their very way of life. It’s absolutely excruciating, and I don’t even have the disease.

She is in a depression right now, and we have been through this enough times that I stopped asking stupid questions long ago. “What’s wrong, honey?” “What can I do?” I am consigned to the sidelines while she rides this out. I have said it before, but it warrants repeating – RSD is not one disease, it is a woeful combination of conditions, which all suck. I love my wife dearly, and I cannot imagine my life without her. I wish so much that there was something I could do to ease her troubles. I am glad that her pain is better right now, but the fringe conditions are kicking our asses. This disease is evil, but I am more determined than ever to remain by her side, not out of any sense of duty, but because I love her. And because I made a commitment to her in 1998 to stay by her side through the good times and bad. Hopefully, this is the bad.

The realization that I have come to is that love is not perfect. It is inherently flawed in some way, and the challenge to keeping love alive is to both acknowledge and peacefully coexist with those flaws. Lord knows she puts up with my flaws (of which there are many). The bottom line is that my life would not be my life without her in it. She fills me up in ways that she is probably unaware of. Everything that is important in my life has to do with the story of us – from the tingly numbness in her hand thirteen years ago to the depression and sleep disorders she experiences now. I don’t like it, but I wouldn’t trade it for anything. RSD is a part of our story together, so in a weird way, our life wouldn’t be our life without the struggles we have faced together. Don’t get me wrong, if she were to be cured tomorrow, I wouldn’t complain a bit.

Never EVER settle

So, my wife recently got a new pain management doctor, and I have to say I am sorry we didn’t go to this guy years ago. Of course, first impressions of a relationship are always better than they are several years down the road, but his office staff is courteous and professional, his nurses are pleasant and positive and the doctor himself is a breath of fresh air. Whereas her previous physician was very negative and quite conservative with her treatment, this new guy is optimistic and looks forward to treating her.

My point today is not to become complacent about your care and your doctor. Do not assume that your doctor is the only one out there capable of treating your condition. Just the same way Windows is a great OS, it requires periodic upgrades and changes to make it better. So it goes with doctors. Don’t be afraid to go out shopping if your relationship with your pain management doctor is not all it could be. You absolutely have the right to the best care possible and the most professional staff and treatment available to you. Now, let’s not go nuts…if you like your doctor and think they give good care – by all means stick with them. But if you think there might be more or better out there for you – go out and look. There is no harm in kicking the tires a little bit on a new physician. Use the requisite caution, of course, as pain management can be a small community.

That’s all I’m saying. Don’t settle. Don’t become complacent with your doctor. The laws of supply and demand apply to every business.

Have a great week!

Drug Policy in This Country is a Joke

Before I begin today’s post, a little disclaimer. I am going to be talking about drugs, some legal..some not so much, and drug policy in this country. If this is the kind of discussion that would offend you, it is probably best not to read from this point forward. Thanks.

President Theodore Roosevelt signed into law the Pure Food and Drug Act in 1906 partially to unify the patchwork of sketchy state laws which governed what could and could not be put into processed foods and medicines. Another goal was to regulate the so-called “patent” medicine industry, many of which contained narcotics which are illegal today. The 1906 act created within the United States Department of Agriculture (USDA) the Department of Chemistry, later renamed the Food and Drug Administration (FDA) in 1930. There’s your history lesson for today boys and girls.

Today, the FDA is a bloated federal bureaucracy whose budget in 2008 totaled $2.4 billion dollars. And what has your $2.4 billion dollars bought you, America? Outdated computer networks who can’t talk to each other, a pitifully understaffed handful of inspectors to enforce the law, and an army of starchy bureaucrats more concerned with their careers than the foods and drugs that are sickening and killing hundreds of Americans every year. The FDA is the very definition of what happens when a government agency gets too big for its own good. Proof, you say? Ok…

Remember the salmonella-tainted peanut scare in 2009? Peanut Corporation of America, based in Georgia, sent out hundreds of truckloads of contaminated peanuts to processing plants, schools, state and federal institutions, and they even tried to export them to Canada. Wanna guess what happened? When we tried to get the tainted nuts across the border near Buffalo, NY, the Canadian inspectors took one look at the quality of the nuts and refused them entry into Canada. Canadian inspectors noted that the peanuts were covered in a “putrid substance” and were “not fit for human consumption.” Would you like to know when the last FDA inspection of PCA’s Georgia plant took place? Seven years earlier. SEVEN YEARS!!

Enough about food. Let’s get to the topic I intended to discuss – drugs. The FDA got the greenlight to give a thumbs up or thumbs down to drug applications in 1938. They were given the power to determine what drugs Americans could take and what they could not. Some were made available by prescription, while some were outlawed entirely. Let me just say, on a personal level, that giving a government the power to decide what is best for its own people is a very dangerous practice. The purpose of government is to keep the infrastructure moving (national parks, highways etc.) and to keep us safe from invading armies – not to make our moral and ethical decisions for us.

Drugs which just years earlier were used as legitimate component in many medicines found themselves banned under new federal laws with questionable motives. I am going to talk mainly about marijuana, since it has been in the news a lot in the last couple years. Without getting on my soapbox, let me say that ALL marijuana is medicinal marijuana if used appropriately. Marijuana has had cultural and ceremonial significance for thousands of years around the world. In 2008, archaeologists discovered the tomb of a shaman in China which was dated to 2,800 B.C. Inside the tomb were various ceremonial objects including a small pouch containing marijuana (still green, by the way).

So, marijuana can be traced to the very earliest known cultures on earth. Yet, in 1937, the Federal Bureau of Narcotics, under pressure from Congress, enacted the Marihuana Tax Act of 1937, which levied a tax on any commercial entity dealing in marijuana. The Act did not criminalize marijuana, but it did provide for fines and imprisonment to those who did not follow its strict provisions. Much of the basis for passing the Marihuana Tax Act of 1937 came from the 1928 International Opium Convention, in which testimony was given that marijuana caused “murder, insanity and death.” I guess they hadn’t invented the munchies in 1928. It is now commonly believed that the testimony given in 1928 contained incorrect information, but that did not stop the campaign against cannabis.

I am rambling, so let me wrap this up. The FDA, pharmaceutical companies and doctors are the biggest drug dealers in America. Pain management doctors can prescribe pharmaceuticals which are essentially synthetic heroin – let’s not kid ourselves. Yet, if THC (the active substance in marijuana) were to show up on your UA, you could lose your doctor. Thousands and thousands of people in this country could benefit from the compounds in marijuana, yet rightwing conservative lobbyists continue to make any serious talk about decriminalization a joke. They have forgotten that the intent of our forefathers was to make America a land of freedom from oppressive government meddling. George Washington and Thomas Jefferson (both slave owners, by the way) grew hemp on their plantations.

Does marijuana have harmful health effects? Sure it does, but it is my right as an adult and a taxpayer to weigh those effects against any potential benefits I see in it and make my own decision. That’s what America is all about – the freedom to decide what is right for you. That’s why freedom of religion was a fundamental principle in the founding of our country. Freedom of choice, not oppressive governmental regulation – that’s America. Finally, as an American, it is your right to disagree with any or all of what I have just said without fear of retaliation. God bless us all, and God Bless America.

Immune System Problems

Among the many things I did not anticipate when my wife’s condition developed was that fact that her immune system is constantly suppressed. The slightest cold or sinus thing that has me back up and around in a day or two will knock her out for weeks. It’s the same with things like cuts and scrapes. Sometimes is takes a cut months to heal on her skin – her skin which is already ravaged by searing pain, uncontrollable temperature and color changes, and general crapiness.

I talked to her earlier today, and she is sick. I mean sick sick. The kind of sick when you can’t breath through your nose and your voice drops to James Earl Jones levels (“Luke, I am your father..”). Non-RSDers would probably be over this in a couple days, but with her immune system being down for so long, she will probably be out of commission for a couple weeks. That’s bad enough, but consider the fact that it is a cold today, and it will be something else tomorrow. It is an endless series of illnesses which never give her immune system a fighting chance to recover. You hacky sack-playing hippies out there are probably saying, “Take Echinacea and Vitamin C, man.” Yeah. Take that advice and hop back in the Prius to follow the Dave Matthews Band around the country, cause it ain’t workin’.

I said it a couple posts ago, and this is just another example of the fact that, with RSD, comes a whole host of other conditions that co-exist with the fire in her veins that never lets up. I wish like hell there was something I could do. I want so badly to take it all away. She is a good person (well, former deviant, but she’s good now). Her faith is strong. She does not question God the way I probably would. The truth is, her strength in putting up with RSD and me simultaneously is amazing. One day, she’ll know why this was planned for her. I’d love to know the answer too because, unlike her, I am jaded and pessimistic. I don’t see what good could possibly come from a plan that involves someone having RSD.

I am not mad at God; I just don’t see things from His perspective sometimes. Hopefully, I will have that “Ah Ha” moment one day. Unfortunately, I won’t be around to tell any of you about it. I’ll be one of two places. The place where I meet the Lord and am reunited with all the people I have loved and lost, or the place where Rick Springfield's "Jessie's Girl" plays for all eternity. God, please make it the first one.
I promise I’ll be good.

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.