Thursday, April 29, 2010

Love & Recovery

When you're chronically ill, it's important to be surrounded by people you love and people who love you. I mean, that's pretty important no matter what right? But at times, it can be hard to accept love from those around you. Whether it's because you're in so much pain everything sucks, or because you don't want to be a burden on those around you. Either way, you may end up alienating your friends, family, husband etc. But if you're lucky, God or whatever is great that is out there, presents you with moments that help you embrace all the love that is around you.

I went to a rehearsal dinner tonight for a friend's wedding and it brought back all the wonderful and fun memories I had of my own big day with the love of my life, my amo, Lupe. Although I'm not always the most pleasant person to be around, although I hardly tell him how I feel until I explode, and although he and I are both still trying to understand what this all means, I know that at the end of every day no matter how great or how bad I can count on him. Even if I tell him to leave me when times get tough and I'm bed ridden I know that he'll look at me crazy, tell me he loves me and ask me to make him a ham sandwhich. And that is very comforting.

Love is a wonderful and mysterious thing, it has helped me grow, it keeps me going and without it, from my mom, my dad, my sister and my husband I would not be in recovery. I do believe I will go into remission- one day- because I love myself enough to make that a reality and I know I have the support and love from others as well to make it so.

A short story memoir, while we're on the subject of love:

FYI: Raynaud's phenomenon (RP) is a condition resulting in a particular series of discolorations of the fingers and/or the toes after exposure to changes in temperature (cold or hot) or emotional events. Skin discoloration occurs because an abnormal spasm of the blood vessels causes a diminished blood supply to the local tissues. Initially, the digit(s) involved turn white because of the diminished blood supply. The digit(s) then turn blue because of prolonged lack of oxygen. Finally, the blood vessels reopen, causing a local "flushing" phenomenon, which turns the digit(s) red. This three-phase color sequence (white to blue to red), most often upon exposure to cold temperature, is characteristic of RP.

He kisses it and assures me that it’s just a callus. I continue to pick it at it however, disbelieving his kind words because I’ve done the research and he hasn’t. An ulcer has appeared on the tip of my right middle finger. It’s small and subtle but it hurts and worries me just the same. I stare him down, my lover, my best friend, my partner in crime and in life. He sighs now, knowing what I need to hear.
“Well, if it IS an ulcer, do you think you should go in and see the doctor?”
“I don’t know, “ I reply, shrugging in an effort to get him to tell me what to do so I don’t have to figure it out myself.
“How bad does it hurt?”
“It doesn’t really hurt, only when my hands get cold or if I put too much pressure on it.”
“Well, just leave it alone and we’ll wait and see what happens.”
“For now, just keep your hands clean and warm so it doesn’t get infected.”
There, I think, he finally said it, the dreaded word “infected.” It’s what we both fear for reasons we can’t even begin to understand yet.
Here are the facts: I have scleroderma, which causes Raynaud’s phenomenon. Raynaud’s is a condition that causes my fingers to turn white, purplish blue, and go numb in cold temperatures and at the onsite of stress or nervousness. The doctor has kindly informed me on numerous occasions that “as long as I don’t get any ulcers on my fingertips, the Raynaud’s isn’t severe or dangerous.” Well, to my dismay, I believe that there is an ulcer on the tip of my right middle finger. An ulcer, though small and seemingly harmless, if infected can cause blood clots, which after too many episodes of Raynaud’s can lead to gangrene, which if left untreated could mean that I would have to have the infected “digit” amputated.
I have seen other patients with varying degrees of this symptom of the condition, and although the infection and the amputation are very frightening, it’s not what scares me or him the most. I can say, for myself, that I fear not being able to write anymore, I fear falling into depression because of it, I fear losing my self-confidence, I fear he would leave me for someone with all their digits intact and a body that isn’t slowly wasting away.
It’s scary to allow yourself to be with someone who you know is sick. I’m not sure if that’s what it is he fears, I haven’t had the courage to ask him yet, and his eyes don’t tell me anything more other than how much he loves me. I really can’t ask for more. If I have a rotten day, he cooks, he cleans, he listens. If I have a great day, his day is put on hold as I cook, and he cleans and he listens. When I want to be left alone, he holds me, and I can’t look him in the eye because I know it will make me feel better, and sometimes I just want to cry.
I am still holding my finger, on the verge of tears that I forcefully hold back so that he doesn’t have to ask me what’s wrong.
“You’ll be fine,” he whispers in my ear. I hug him and go to the computer to research what ulcers look like.
The few pictures I am able to find are horrifying and anything but comforting. I sigh a few times, and I look up from my computer when my eyes begin to blur. I see him, sitting on the couch across from me, playing with his hair and flipping through channels. I love this man, and the ulcers he calls calluses are calluses because the end, the brutal end where he will hold my fingerless hands and I will slip away, is not an option he is going to accept just yet.


  1. Congratulations on your Blog!!! I think it is just awesome that you are sharing your journey with everyone. You sound like a person I would want to know!

    Thanks from another person "living with sclero".

  2. Amo a una mujer que tiene esclerodermia, ella me dejo por otro hombre y aun asi quiero estar a su lado, cuidarla y darle todo el cariño que le di durante 12 años, acepte lo que me pidio... dejarla por que creo que ella es feliz al lado de quien elijio. no quiero que el amor que le tengo le traiga una preocupacion...solo quiero que sea feliz.... solo le pido a Dios que el hombre que esta su lado la ame y le de todo el cariño que ella necesita.....Amor que seas muy feliz....

  3. wow just read this and I am touched. I am a sufferer myself. I get the nasty ulcers too but do you also have hardening of the skin? I'm asking cause you don't look like you have hardening of the skin. you actually have nice looking skin and pretty too if u don't mind me saying