Earlier today I was very ready to blog about how upset I was with the ignorance of doctors, pharmacists and the general medical profession. I had a bad experience at a pharmacy today which made me very frustrated and I wanted to share since I knew many would empathize.
However, shortly after my "bad" experience, I learned of an even worse one. A coworker suffered a heart attack today while at work. Ambulances were called, CPR was adminstered and everyone was very frazzled. My bout with the pharmacist has become irrelevant. We know that this person is in critical condition at the moment and therefore my thoughts and prayers are with her and her family at this time.
Thursday, April 29, 2010
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.
Wednesday, April 28, 2010
I may not work mowing lawns, or building things or scrubbing floors, but for me, teaching is physically demanding. Do I sweat at work? No, not really. Do I get my hands dirty? Sometimes...painting things. Do I have to catch my breath to keep going? Not usually, unless I'm climbing stairs.
However, often the simple acts of bending, leaning, twisting or raising an arm to write on the dry erase board physically exhaust me. Working full time and often "over" time has made me fully aware of my body's limitations. I can often feel muscles I didn't even know I had and my joints work like a not so well-oiled machine. It is often painful and exhausting just to think about, but I get on and the kids make me laugh so I can forget about it even if just for a class period. I do what I do for a living because it makes ME feel good, sure it's nice that the kids learn, but I find joy in what I do because if I didn't I can almost guarantee I'd be in a hospital bed by now. (Stress aggravates my condition, so I avoid discomfort and stressful situations as much as possible)
I am thankful most days that it is not worse, but I do hate being aware of what my body can and cannot do at such a young age. I suppose it has helped to appreciate things more, even the long long hard days like today. (TAKS testing...joy) I'm thankful I feel good enough to say that I was able to go to work and have a hard day because one day I may not be able to,(and because it was a hard day)I'm thankful and okay with that too.
Tuesday, April 27, 2010
Hello everyone, I'm Jasminne. 31/2 years ago I was diagnosed with Scleroderma.(From the Latin: Sclero meaning hard, derma meaning skin= hard skin) A chronic, auto-immune disease that affects, well, pretty much everything. I live with chronic pain in my joints and muscles, I am usually extremely fatigued, I suffer from heart burn, digestion problems, lung issues and skin tightening. There is no definitive cause or cure for Scleroderma. It affects every patient differently and there are a number of treatment options available that allow me to "manage" the symptoms of the disease. However, I am not here to ask for a pity party, I have begun this blog in order to raise awareness about the disease. I hope that by sharing my stories, experiences, and day to day trials, tribulations and triumphs I will be able to educate more people about what this disease is and means. I find it obscene that there is more press for erectile dysfunction than there is for Scleroderma and other terrifying auto-immune disease that effect hundreds of thousands of people. (I in my own little way, am hoping to change that)
With all that said, and in an effort to always be "brief" (hence the blog title) I can only hope, that some who used to know nothing, will now learn a little each day, and be better off because of it. (I will post video poems, poetry, picture poetry, memoir, and daily journal reflections)
Leave me a message, or ask me a question, I'd love to hear from anyone!