It's 5:36 a.m., and I'm still up--again. I need to be at the doctor's in less than 3 1/2 hours, why bother with any sleep now? (Says my mind.)
NO! I will not allow this horrible insomnia take over my life, rendering me useless and stupid the next day, with much worse pain to deal with. I chose not to take a sleeping pill the doc gave me a few samples of, as I didn't want to sleep past the doc offices before noon only-- Friday hours.
I need the PPD test that was given for work yesterday, and needs to be checked and give me a letter stating it is negative. Which it is. The PPD test is for Tuberculosis and any health care worker should have it. Just a little bubble put by needle, just barely under your skin and wait 3 days for any sign of swelling, a bump over the injection site, or redness.
I really don't think that I am the only one up in the world of Blogosphere; that odd time of night is coming to a close, and the sun is rising very soon. Circadian rhythm kicks in and well, you know.
I have an odd feeling that I have just a 'few' fellow posters out there doing the same thing.
Up all night..........zzzzzzzzzzzzzzzz.......again.
"The Only Constant in Life....is Change."
Friday, August 29, 2008
Sunday, August 24, 2008
Paula Abdul's Pain Journey and Others Speak Out
I was fortunate enough to run into a recent online ABC interview with Paula Abdul, concerning her battle with RSD and the resulting pain that she has endured for 25 years. Also , her use of Opioid medications so she could get out of bed and have as productive a life as her pain allows her to.
We've all heard the jokes about her being "on pills" or "drunk". When I do see the times she does seem to be talking a bit slurry, I wonder if it is from a new med, and she is getting used to it, or a change in the dosage of what she takes. There are many reasons in a pain patients life to exhibit those symptoms or side effects.
Knowing that she suffers from a Chronic Disease, causing Chronic Pain, I feel very sad when I hear others talk about her in a negative light. My heart goes out to her, as does my heart and empathy go to every person that suffers in any way with pain and ALL we need to do to address it.
If a patient decides to try the use of opioids in their pain management regime, there will be side effects that show at times. CP (Chronic Pain), patients take these meds, as stated in the article, sometimes at grams, not milligrams. And do they get 'high' off of opioids? No! Many say that they wish they could at least feel something. Everyone likes to alter their reality with something, if we are very honest with ourselves. If it is not liquor, it is smoking pot. If it's not being high on all your new clothes that you can't really afford, or stole; it is using lies to get that rush, the rush of getting caught. I knew a man who liked to drink, yet his lies were much higher on the get high scale than the wine....the adrenaline rush he must have had, heart beating quickly as he tries to remember what he told one person and what he told me.
Those who have every day pain, and take medications for it, go through so much just to get the RX, get it filled at a Pharmacy that: 1. Has it in stock, 2. Doesn't treat you like a drug abuser, but with respect, as everyone should be treated that they serve. Then picking them up later, if waiting is out of the question, because you are in pain. Sometimes the life of a pain pt. (patient), is a series of catch-22's. You waited till the last minute to get your meds because you have been in such high pain and there is no one close to help you out. If the pharmacy doesn't have it in stock, (which is why it is a great idea to call first and simply find out!), you must either know your backups, or guess at what pharmacy you will go to.
Paula Abdul had not gone public with her pain issue for many years. I remember her as a Lakers cheerleader, then her introduction to the music world. To think that since the cheerleading days she has been dealing with her pain. Quietly. In fear. Like so many with Chronic Pain. Fear of what others think when it comes to taking narcotics. Fear of 'their' approval or disapproval over 'their' beliefs in taking opioids. Who are 'they'? If they are your family or friends, they are not educated in chronic pain. Educate them! Once they have been, if they keep their treacherously narrow view as before, you do not want them in your life. All they do is pull you down. I want the people that offer to help me. Who know my story very deeply
Paula wanted people around her that understood her pain and how she chose (with her doctor), to treat it. And meds are just one part of a pain management ongoing program. She, like others that just happen to not be a celebrity, feel the vibes from the haters. The ones that never fail to say that,"my doctor can cure you", "my Uncle got this or that treatment", and how what worked for these people, will work for you. (When the person they are referring to have no diagnosis even close to ours!) We, on the other hand, the pain pnut gallery, have researched our diagnoses for years. We have seen many doctors. Tried many if not all treatments, procedures, surgeries, and medications available to us for our specific issue. We heard the doctor say after seeing our backs opened up, that there is no surgery available. Period. Were these people that want to judge us, there by our side, helping us with trips to the doctor when we are in pain, were they there when the doctor said he couldn't do anything anymore surgically and we are relegated to a life of pain management. How alone are we in this life of hidden illness?
Paula Abdul felt alone. She had to put up with the rumors and attention to something that is personal, it is her health. Her publicists are racing around trying to decide what to say to the press when her speech sounded slurred or the rumors were flying. Then she did what we all must do, if not already done. She told the truth, her truth, in an interview, then another, and another. Her truth, in essence, has set her free. Tell the world, your world, about your story. About your cheerleader story. How you originally hurt yourself, if you can put a finger on that. Or what you feel now, and what the causes are. Let people know who you are.
We are not our illnesses; we have illnesses. And when we have something, it is ours to do with what we want. Work on it, research it, take care of it, and ultimately, you. Paula Abdul has taken steps for years to try and let her just live every day without the pain that kept her from doing what she wanted to in her profession. KUDOS Paula!
The fireman interviewed in the article is eloquently spoken about his world now in chronic pain. He has quite a few great things to say. To read the article, just click on the title of this post.
I wish you a low or no pain day.
"The Only Constant in Life....is Change."
We've all heard the jokes about her being "on pills" or "drunk". When I do see the times she does seem to be talking a bit slurry, I wonder if it is from a new med, and she is getting used to it, or a change in the dosage of what she takes. There are many reasons in a pain patients life to exhibit those symptoms or side effects.
Knowing that she suffers from a Chronic Disease, causing Chronic Pain, I feel very sad when I hear others talk about her in a negative light. My heart goes out to her, as does my heart and empathy go to every person that suffers in any way with pain and ALL we need to do to address it.
If a patient decides to try the use of opioids in their pain management regime, there will be side effects that show at times. CP (Chronic Pain), patients take these meds, as stated in the article, sometimes at grams, not milligrams. And do they get 'high' off of opioids? No! Many say that they wish they could at least feel something. Everyone likes to alter their reality with something, if we are very honest with ourselves. If it is not liquor, it is smoking pot. If it's not being high on all your new clothes that you can't really afford, or stole; it is using lies to get that rush, the rush of getting caught. I knew a man who liked to drink, yet his lies were much higher on the get high scale than the wine....the adrenaline rush he must have had, heart beating quickly as he tries to remember what he told one person and what he told me.
Those who have every day pain, and take medications for it, go through so much just to get the RX, get it filled at a Pharmacy that: 1. Has it in stock, 2. Doesn't treat you like a drug abuser, but with respect, as everyone should be treated that they serve. Then picking them up later, if waiting is out of the question, because you are in pain. Sometimes the life of a pain pt. (patient), is a series of catch-22's. You waited till the last minute to get your meds because you have been in such high pain and there is no one close to help you out. If the pharmacy doesn't have it in stock, (which is why it is a great idea to call first and simply find out!), you must either know your backups, or guess at what pharmacy you will go to.
Paula Abdul had not gone public with her pain issue for many years. I remember her as a Lakers cheerleader, then her introduction to the music world. To think that since the cheerleading days she has been dealing with her pain. Quietly. In fear. Like so many with Chronic Pain. Fear of what others think when it comes to taking narcotics. Fear of 'their' approval or disapproval over 'their' beliefs in taking opioids. Who are 'they'? If they are your family or friends, they are not educated in chronic pain. Educate them! Once they have been, if they keep their treacherously narrow view as before, you do not want them in your life. All they do is pull you down. I want the people that offer to help me. Who know my story very deeply
Paula wanted people around her that understood her pain and how she chose (with her doctor), to treat it. And meds are just one part of a pain management ongoing program. She, like others that just happen to not be a celebrity, feel the vibes from the haters. The ones that never fail to say that,"my doctor can cure you", "my Uncle got this or that treatment", and how what worked for these people, will work for you. (When the person they are referring to have no diagnosis even close to ours!) We, on the other hand, the pain pnut gallery, have researched our diagnoses for years. We have seen many doctors. Tried many if not all treatments, procedures, surgeries, and medications available to us for our specific issue. We heard the doctor say after seeing our backs opened up, that there is no surgery available. Period. Were these people that want to judge us, there by our side, helping us with trips to the doctor when we are in pain, were they there when the doctor said he couldn't do anything anymore surgically and we are relegated to a life of pain management. How alone are we in this life of hidden illness?
Paula Abdul felt alone. She had to put up with the rumors and attention to something that is personal, it is her health. Her publicists are racing around trying to decide what to say to the press when her speech sounded slurred or the rumors were flying. Then she did what we all must do, if not already done. She told the truth, her truth, in an interview, then another, and another. Her truth, in essence, has set her free. Tell the world, your world, about your story. About your cheerleader story. How you originally hurt yourself, if you can put a finger on that. Or what you feel now, and what the causes are. Let people know who you are.
We are not our illnesses; we have illnesses. And when we have something, it is ours to do with what we want. Work on it, research it, take care of it, and ultimately, you. Paula Abdul has taken steps for years to try and let her just live every day without the pain that kept her from doing what she wanted to in her profession. KUDOS Paula!
The fireman interviewed in the article is eloquently spoken about his world now in chronic pain. He has quite a few great things to say. To read the article, just click on the title of this post.
I wish you a low or no pain day.
"The Only Constant in Life....is Change."
Thursday, August 14, 2008
Where I've Been
Wow. I have never left my blog without a post for 14 days. I feel very mad at myself, and as if I let myself down. I must realize that I write this (also), for others!! The visitors I get that are repeat, which are over 80% of my visits, are just seeing the same thing day after day, for a half a month now. I get bored when I go to a blog and see the same thing for over 4 days or so. Sorry for the boredom, it’s been an odd 14 days!
Writing a blog is time consuming and although some posts just fly out, as this one is doing, some I choose to do research, usually the medical ones, and that requires time, attention, work, and commitment.
I am lacking in those attributes concerning this blog; and I have been lacking for the past 4 weeks. I am not strong. I am not well. You know when your body is not right. And when I have made it to the computer to try and write here, I find that all that naturally comes out is writing about what has been happening to me. Then I start second-guessing myself: Will this be boring? Will my readers get anything out of these words I want to type? Will I dare go against one of the character traits that I have, and like: I am not a whiner. Won't this all sound like a bunch of "poor me's?" Anyone that reads my blog on a regular basis would spot it right away. Maybe it is meant to be written. If that is all I can think when I begin to think of my topic, isn't it meant to be?
I will now attack the past two plus weeks in my life. It has obviously affected me and my blog, and I don't want that to happen. I know now as I write that this is exactly what needs to be done. Then I will be in the open place that normally surrounds me when I write. I will be free.
I mentioned once here, an odd blister that spontaneously (suddenly), appeared on my lower leg. It showed up about a month ago. It was about 4 inches long, 2+ wide and over two inches high. Yep, it was BIG! There was a thicker than normal skin also. Walking to get coffee one morning, I felt an odd sensation as the yet-unseen blister brushed against my PJ's, with each step I took. When I pulled up the pant legs to see what it was, I was very surprised at what I saw, to say the least. It had not been there the night before. How did this happen? Why?
The color was not of your normal blister either. It was a soft amber shade, no clear to white to light pink translucent colors that are usually seen. In 17 years of nursing, I had never seen one like this. I was quite bothered and called my doc, and was going in the next day. I took lots of pictures, and wore my scrubs which had loose legs, with my coworkers coming over from other departments when they heard about "Shauna's Blister!" It had already become a legend!
Some nurses said it looked like a burn. Not! Some thought friction caused it. Let's just say any friction was sure not in the area of the blister!! ;-) More than one said a spider bite. That I could learn toward.
Through washing my leg gently in the shower one day, the blister split directly in half horizontally. Because I was in the shower, I couldn't really identify the color and amount of drainage, but I did see some serosanguineous fluid. Serosanguineous contains serum and blood. After the fact, I have read that if this type of blister is seen, medical intervention must begin, before the blister pops.
My doctor told me one day that nurses are notorious for ignoring their own health issues, not being compliant patients. We will drag it out, thinking we are fine. I am good at yearly paps and mammograms, but this I just left. I had other things to take care of. The skin underneath did not look healthy. I knew my doc needed to see the wound, and made another appointment, promising this time I would be there!! As I was changing the dressing one day, I uncovered something I thought I'd never see on myself. The wound was black. It had become necrotic! As quickly as the blister had appeared, the wound went from skin that was trying to heal, to necrosis.
Necrotic tissue is tissue that has died. There are no vessels to bring the needed blood to the skin, and quite soon the tissue will just die. The color is black, and it is hard to the touch. It was not painful, but bothersome and tender. The doctor was as amazed as I. It had happened so fast! He told me to use a WTD dressing, Wet to dry means simply having a layer of semi-wet gauze or other similar material next to the wound, covered then by dry gauze/dressing. He told me to use some Vitamin E cream or oil, and as he told me what I already knew, that this wound was going to leave quite the scar, and the Vit. E cream would help. I was to return in 2 weeks.
As the 2 weeks went by, the wound remained the same. Same in size, in color, in hardness, regardless of the WTD dressing, and the Vit E oil I was using. But near the time to see him, something else was happening, the area became more and more tender, the pain became worse, and I saw the beginnings of what was to become an infected necrotic wound. The skin around the blackness was pink and raised, warm to the touch, and painful. All the classic signs of infection.
When I saw my doc, he was saddened to see that it had definitely become infected. I had used such care in dressing it, using a windowpane taping technique, to keep as much air and germs out as possible. He pushed on the area around the wound to see if anything could be expressed, and he wanted to see also what would come out, if anything. OMG when he was pressing around it, directly next to and sometimes on the pink skin, it hurt very much. He did express thick liquid substance out of the sides, confirming the infection diagnosis. Now it was time to put me on antibiotics. And he instructed me to dress it this time using antibiotic ointment directly on and around the wound, covered by a simple dressing.
Today is the last day of the antibiotics. I need to stay on them, as the lesion is still infected, and looks scary to me. Scary is not my normal nursing terminology, but I was scared. The pain is tremendous. Now I am to see him in a few days, and my thoughts go to two things that he will want to do, as this cannot be left any longer as it is. What many docs do is to debride the necrotic tissue, leaving just the hopefully healthy tissue underneath to heal. Or, they will perform surgery, going in much deeper, getting all the involved tissue out, and then pulling the skin together, to stitch it shut, leaving a nice scar instead of a gaping hole in my leg. I vote for the surgery.
During this ordeal, somehow, I contracted an infection on my scalp. That has been part of this unknown skin problem occasionally, but never to this extent of pain. It is so tender to the touch, hard to wash or brush without pain, and he had to just take one look that day at my scalp to tell me that it was infected too. He said it was impetigo. Now that was a surprise! After researching impetigo, which I conjure up as children with it on their nose, I found there are three types. The one I fall under from the symptom list and pictures is not something that I want to fool around with either. The certain bacteria or viruses that I may be dealing with could finally quench my yearning for an answer to this! Maybe my problem will finally be diagnosed, after that connection, and the leg lesion. I want him to culture it, if he isn’t going to already. One of my biggest worries is that this all will cause sepsis. I have not felt well for the last month or more. Just such little energy, no appetite, and on top of this, my back pain decided to kick in and throw me down to the ground for 5 days straight. This has happened before, the days straight of pain, but this time, it felt different in an odd way. As if my vertebrae were on fire. Deep, deep inside my spine and cord, it felt hot and also stabbing. Something new is happening back there.
Possibly another osteophyte that has finally made its way to touch the spinal cord. Or one of my herniated discs could be bulging just enough to press on the nerves, causing such searing pain. Maybe some scar tissue.
This is why I have not been writing. Now it’s out of me, and although this is has taken 2 days to finish and get published, I feel as if I can talk about this, and then move on to other subjects, including updates on this whole blister situation. This has been part of my life lately, a big part! It is different and unusual. Nearly everything about it has been odd.
I am so accustomed to dealing with pain that I tend to wait too long to seek medical attention. I know that is how I have had tooth abscesses way too long, before I get myself to the dentist. There are days of other problems physically in the past that I have just dealt with. Like I do my back pain. I am a Chronic Pain patient and we learn how to not cry at the first medical problem that we have. We know how to manage pain over extended periods of time, always aware that there is no end in sight to the pain.
I regret not getting help sooner, but I also did not expect to have the lesion under the blister turn necrotic in such a short time! Something like that will bring me out of my world of long-term pain care, and seek help.
I’ll write more when there is more to say. As of today, it is all good, I am trying to keep a positive attitude, as I do with my regular pain. And you know something?
If I hadn’t ever experienced pain lasting longer than 6 months, I would not have the natural empathy I have, strengthened by the suffering, which I do not even experience as suffering. It is a great word to use for description when writing. Yet I do not…remember??….some cheese with that whine? Not me! I’m not one that hangs on to what I experience with my pain, in my pain. It is, more for me, the way it fits into my life, and that is the challenge that I have for possibly 2 hours, maybe 12, how about 24? Others may experience that in their jobs. Everyone I know has a beef with something regarding their employment. So they deal with work, and I deal with pain. Then, we all as humans move on to the next item in our lives that need attention.
We go on. We attend to, pay attention to and work hard at what ever our next task is! Children, work, family, friends, homes-
That is life! And if you face a challenge medically, that bothers you and may be serious, or you experience pain lasting longer than 6 months, or you inject your insulin daily, you DEAL WITH IT. And you all know exactly what I mean!
That, all comes down to one word. Suffering.
Yet remember, I’m not one to say ‘help’ (even if I need it but that’s my deal), and you may be that way too….so the number one rule to remember is: Suffering = Challenge.
Quite the Nice Life Lesson we have been given!!
I will be here I promise!
"The Only Constant in Life....is Change."
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