"Happiness is a Choice." quote taken from an interview of Drew Barrymore by Kevin Sessums

Thursday, July 15, 2010

Where the Hell is the Off Button?

So on November 9, 2009, after four months of enduring severe pain, edema, and discoloration of my left foot and ankle, plus adopting crutches and an Aircast Walking Brace, the verdict is in…….I have RSD. Michael is home in a middle of a workday, watching me completely fall apart. In his best attempt to educate us both on what this all means, Michael gets on the internet and downloads a RSD Booklet. The handicap placard paperwork needs to be signed and turned in to the City. I cry harder when I notice that the doctor marked the blue placard box rather than the red temporary placard box. Michael leaves to turn in the placard application and it’s rejected because I didn’t sign the application on the bottom of the page. Without saying anything more, he patiently leaves again with the signed application and then proudly shows me the red placards when he returns, hoping that this will make me feel better. It turns out the foot surgeon marked the temporary and permanent boxes so by default the City representative issued the red placards. Michael is correct…..the red placards do indeed make me feel a bit better, although we both know that in six months when we need to renew them, blue placards will replace them.

I call the number of my new doctor and I am told by their assistant they have already received my records from the foot surgeon. Turns out, though, that their calendar is full and I can’t be seen until December 8. I make the appointment, not sure if I am relieved or disappointed. I am exhausted from all the crying and feel completely numb. Our sons soon will be home from school and they will have homework to do and I have dinner to make. Life doesn’t stop just because you receive bad news.

As the days pass and word spreads through family and friends, I read various aspects of the RSD Booklet Michael downloaded on my laptop. Most people who hear the news clearly have that “huh?” look on their face and with good reason. People have heard about MS and Lupus, but RSD is still that hidden syndrome that most people know nothing about. Crazy like a fox, a chameleon…..that’s what RSD is. Symptoms can change throughout the day and evening and sometimes some symptoms disappear to be replaced by others that tend to be nastier. People can clearly see that something is wrong…..I have the crutches now and the Aircast Walking Brace. Some people look at me, shake their heads and say things like “God, aren’t you healed by now? What’s wrong with you?” They are annoyed that I have the audacity to not be better and it takes all my will not to hit them with one of my crutches or say something wicked back. I have never been one who likes to take medication stronger than Aleve and now I am in so much pain that if they put crack in front of me, I would be tempted to use it just to try to escape the pain. The pain, the pain, the pain! Where the hell is the off button?

Now I am fearful of falling or slipping. I think about death every day. A few weeks earlier I am put on Lisinopril because my blood pressure is now high. Is it high because of the RSD or because I just have high blood pressure? What comes first, the chicken or the egg? Does it matter?

It is the holiday season……my absolute favorite time of the year. Once again we are hosting Thanksgiving and thankfully a friend offers to cook the turkey and bring it. PTA friends volunteered to bring dinner off and on for three weeks because I don’t have the energy or interest to cook. I am normally what I consider a “Christmas purest” and never decorate the house until it is December, but I ask Michael to get out the decorations two days after Thanksgiving in hopes that the magical spirit of Christmas will give me comfort. Unfortunately it doesn’t do a damn thing for me, but the boys are enjoying trimming the tree tremendously. The boys have reacted differently to the news of my diagnosis; Jared is quieter and watches me constantly. Aidan, however, is worried and now is having difficulty with his teacher. And Michael is continuing to see me cry and has no idea what to do. And I, of course, am my biggest critic. What a hypocrite am I? For months I told everyone that I knew something was terribly wrong and all I wanted was the truth…..the good, the bad and the ugly. I would rather know what’s wrong than not know at all. Now I know what’s wrong and I am flipping out. I want to scream, punch, hit, cry and feel sorry for myself and I do all of these things. I go into our closet and scream my bloody head off. I cry and cry and cry and then I get angry that I am not one of those pretty criers like you see in the movies. No, I am a sniffling, puffy, ugly crier and it only makes me cry more. I cry in public, on the phone and at home. Then I fill with rage because I have never been a crier and now I can’t stop. I am at my wits end, my pain level is increasing and now many of my clothes no longer fit because I have gained over twenty pounds since the accident. Yet despite all of this self-loathing, anger and pain, I do my best to put on my happy face fa├žade for the sake of my children and wait for December 8.

1 comment:

  1. Hi Alexia,
    I came across your blog as a result of searching for links about RSD on Facebook. About a month ago I too was diagnosed with RSD. I've had Osteo-Arthritis for 20 years now, but over the past two years I have been diagnosed with Fibromyalgia, Mixed Connective Tissue Disease, Sjorgens, Reynauds, RA ... and then finally, just over a month ago, RSD. Although I have a terrific Rheumatologist I have never been given any leaflets or information such as you describe, so I've been searching for as much information as I can on-line. I have a lovely supportive husband, who understands nothing more than that I am in horrendous pain - and 3 equally baffled kids. The rest of my family have little interest and even less understanding of what I'm going through. It has been refreshing and reassuring to read that someone else knows exactly how I feel about RSD - and obviously shares my frustrations and resentment with the whole thing .... so Thank you for writng your blog and sharing your journey. I look forward to reading more, whilst hoping that someday soon your pain might go into remission.