The Reality Of Filling Monthly Medications For Pain Patients

Filling medications should not be a huge undertaking. For anyone. Especially when it is the patient themselves, the pain patient, that is taking the steps required to obtain our very needed medications to live a life with the least amount of pain possible.

In talking and listening to others, those that are NOT living a life of pain, and especially those that do not understand the life of a Chronic Pain Patient; this group tends to think that our meds are:

#1) Simple to obtain--Period.
#2) Called in by the doctor to the Pharmacist.
#3) Always available at any Pharmacy.
#4) Not a hassle in any way, we just pick them up.


And now for the reality of filling monthly medications. Here is the 3-day odyssey that I went through simply to fill my monthly medications, that had no changes, no new medications added, nothing different from last month.

Blog Action Day 2009--Buy more to consume less!!

On this Blog Action Day 2009, with the subject being 'Climate Change', I am going to say something that sounds completely paradoxical, yet makes sense!

When we purchase anything from the market for instance, to lessen our carbon footprint, reduce the amount of packaging used and actually pay less for the total amount of the item; is better for our wallets and more important, the issue of Climate Change; or Global Warming, try to buy in bulk.

Less overall packaging is used when bulk items are packaged. Think of that box of 6 granola bars. It takes six plastic wrappers, and a large amount of cardboard just to hold those six little bars; with way too much room to spare.......

It's Invisible Illness Awareness Week 2009 !!

Sure seems like I was just writing about Invisible Illness Awareness Week a few months ago, not one YEAR ago!!


Along with the importance of this week, this week and the past few weeks/months have found me facing a new set of challenges in the world of having a Chronic Illness/Chronic Pain. I have learned that Chronic Pain can still react to any new situation, and that I still am learning how to deal with it all. This week is important in getting out the word that many of the people that we all see, wherever it may be, whatever they may be doing, are suffering right before our eyes and we do not know it. Those that seem to be ok, but inside them is a plethora of issues.


Would you know this just by how I look?


The past months in my life have been extremely stressful both psychologically and physically. No one would know to look at me. I not only have learned to hide it well, but only those closest to me know the true ins and outs of what I have been going through. I know that we all experience stress. We all have pain at one time or another. Yet already having pain around the clock just pushes the stress into the muscles that run along my spine, ****Paraspinal muscles****, leaving them hard as a brick and in deep, long-lasting severe spasms. The stress goes along with the daily pain and deep into my spine, and together result in hot bone pain in my vertebrae, and stabbing, sword-like pain wrapping around my side to the front now.****Neuropathy--nerve pain****


Would you know all this by looking at me??


Would you believe that as I try to stay in an upright position without assistance; I simply look like another girl. Another lady. A woman. Whom is NOT ok inside. We must ALL try to remember that we can not judge a book by it's cover!! And my cover has become one that I can no longer hide too well anymore.


Just keep in mind that not all people who are experiencing chronic pain, chronic illness, etc., are home in bed. There are those of us that are still able (barely), to go out in public, to shop---me only with assistance, (simply looking like anyone else who has a cart-pusher and lifting helper along,) and I would kill to find a delivery service that could shop for me and bring it home, of course unpack the bags and put it away for me, (what a dream, eh?) without having to go through the huge hassle of the market. My biggest nemesis! And no one knows that as each isle is walked, my pain rises, my muscle spasms get worse, and I just want to get out of there!! I am so thankful that my son is such a giving and caring person; who helps me when I need it, being here when he says he will be, and giving of himself to me.


He said the other morning when he saw me, (I was crying in the morning as I do when the pain is high upon waking,) "It takes a very special person and a special spirit to be able to handle the pain you are in every day mom, and still have to handle all that life brings to all of us!" Which of course made me cry more. THAT is caring. Looking at me through empathetic eyes and trying to imagine what it is I feel daily.


Friends and family have helped me to get my life back together again when it was an absolute mess. It must be hard to be an only child, as so much is asked of my son in needed help. Yet he does it all with devotion, love and true caring. Without him.....


It is hard for me to ask for help, but I have learned. Wow have I learned!! And I found that if I ask, I know there is a 50% chance of a 'yes', and a 50% chance of a 'no'. No matter what the situation is that I need help with, I know that if I don't ask, I am not giving everyone in my life a chance to help me. I never realized that leaving out someone just because I think they will probably not help me, does me no good and gives me NO chance of receiving help of any kind. Involving those in my family and friend circle also makes them feel as if they are involved; even those that don't really want to be involved have been able to say their peace to me. They at least have been asked for help and have a chance to do so. Asking for help is a new found area for me. I do not like it. But this is part of having Chronic Pain that is only getting worse daily. Of course I need help. I will always need help. My diagnoses are such that getting worse pain with the problems I have in my back- is the only thing that will happen.


How much can a spinal cord be squeezed? How long can the herniated discs be there without creating more problems? How much must my bone overgrowths cutting off exiting nerves from the cord grow, before the pain becomes totally unbearable? How deep into my cord are the Osteophytes growing from the vertebrae going to 'stick' into it before more serious and longer-lasting sudden paresis happens? I don't know the answers to these questions, and I trust God to help me in all of this, and in the meantime, life goes on; yet I choose to live day by day. It's all any of us can do, and with a Chronic Illness, it is truly the only way to be able to deal with it all. Any more would be so overwhelming, as each day is enough to get through!!


Would you know this is all going on as I try to stand without a cane.....would you see anything that would give you an idea that I am suffering? NO! It is a quiet, lingering, hidden and silent world of pain that I live in.


That is what this week is for. To educate, communicate....get the word out!!!


I was flattered to be a featured Blogger on Lisa Copen's site for this weeks festivities. THANK YOU LISA!!! Ms. Copen is the founder and creator of IIAW. She has done so much for those of us that have a voice, yet we need more than one or two to really get the word out about those with INVISIBLE ILLNESSES. You can go to http://invisibleillnessweek.com/ to read much more about the reason for this week, and just how much it means to those of us that are suffering.


That's it for now, the morning pain is just too much for me right now to sit and write anymore.


Invisible Illness Awareness Week goes on all this week and you will see many bloggers writing about this. I commend all that are trying to make a difference for all of us, and thank those that are writing this week.


Gentle Hugs... <3

When Sleep Is The Only Way Out

Having not posted for awhile now, I find it hard to just jump in and post. There is really no big explanation for this, just a few little items going on around my place. Oh, and a week of pain that has not given me one moment of relief.


Of course there was my medication change. That was attempted and I hung in there like a real trooper for two weeks until I said, "No more!" It was making my head feel fuzzy, my sleep was off and interrupted because I am known to be a night owl, and to have an every 8 hour med; it can get tricky sometimes. And once I'm up, I'm up. Especially if it is early morning, that beautiful time when for just a moment, there is no light, yet there is the thought of it...then moments later the sunrise begins. It never fails to hit me in the heart....a feeling that a new chance in my life is just beginning. Once I can see the homes around me, and the 'real' sunrise is over, life starts. Nothing changes. That new chance for some kind of change, especially in my pain.


I have only tried a medication change twice in the last 5 years. Ironically enough, it was a couple years ago, also in the summer that I attempted a change. It failed big time. I felt what my pain is really like without the help of my main medication. It is unspeakable how strong and horrible that week was. I believe in giving these med changes a try, and it takes more than a few days to see if the new med, or a change in an existing med, will be successful. During these days, comes the strength in me that must be given from God to endure the days of such strong pain.


This medication change was unsuccessful. That alone worries me. What is happening to me now is that it is very hard for me to stand up. Now that scares me. A lot. I woke today to see the face of my son, who was checking on me to see why I was sleeping so long. The moment I woke, he said I asked what day it was, what time it was, then he saw my facial expression chance when I realized the pain. I moved, and let out an odd sounding combination of a scream and a grunt. Sweet son said, "Sometimes when I wake with pain mom, I turn onto my stomach and it really helps." Bless his heart. When I tried that, knowing it was only to cause more pain, (I was doing it for him,) I couldn't even move into that position. Just getting into some kind of sitting position to get out of bed was like climbing a mountain. But a bigger mountain was to be climbed once out of bed. Just getting teeth brushed, (I don't understand why sinks are set so low in homes,) having to bend at the waist and then stand up from that, was a huge mountain. I climbed it, as I do every morning.


My son made coffee and kept me company while I was sitting on the couch with the heating pad. That one place is the only area that I get some type of relief from the deep, stinging pain. He was doing some wash and left the room while I got up and got a cup of coffee. Another mountain. Climbed it, but afraid of falling with each step up the hill.


It is only about 4 minutes that I feel I can stand without assistance. Spilled the coffee as I was picking up the mug from the counter. I had to get back to the couch. It was a very long ten steps today. WHY CAN'T I STAND UP? What is going on inside my spine?? It's been 6 years since my last MRI. I can only imagine what has changed since then. But being on Pain Management now, and for years, they do not want MRI's, unless there is something to be done inside. Like a Morphine pump. After my Spinal Cord Stimulator Trial, and hearing the docs in the OR talk with shock in their voices about the amount of scar tissue and Osteophytes, I wonder now if a Morphine pump could even be implanted!


Something new is going on in my spine. Forget medications for a second. Why is my pain worse, did not respond to the rise in medication, (actually it was worse during that;) and why do I have the Neuropathy that I've had for years now wrapping around the front to the midline, making me feel like a band is around my chest, affecting my breathing, and WHY do I feel so unstable in my spine--that presents itself as not being able to stand???


I am in so much pain as I write this now. I need to stop, and get back to the couch. No amount of meds help today and the past month. I have had to ask my son and roommate to go do errands for me. I am scared. About feeling so weak in my spine, and standing is scary. I feel as if I will just collapse into a little heap. Spineless. Not the way that word is used in other ways. But it is the best word to use to describe my pain and what will happen if I DO FALL!! I am spineless!


Yet why does all the pain that is constantly rising in intensity, length, depth and from morning till night all still revolve around my Thoracic spine?? I want to see a new MRI. I want my doctor to see what exactly is going on; not just treat my symptoms. Yet I know that when a patient gets to Pain Management, the MRI's, CT scans, etc., stop! I had all those, over and over as we tried every damn procedure available to man, and they failed. They all failed. Hence--Pain Management. There is no more surgery, nothing that can 'fix' all the problems that lay before the surgeons. I tried it twice. The second surgery, which ended up being a Costotransversectomy with fusion, foraminotomy and diskectomy, (being known as the 'Big Surgery'), my Neurosurgeon from a very well known University, who also taught Neurosurgery there, began by recommending that I see a doctor in another state; who at the time was the only doctor in the U.S. known to do anterior***(L. Before, or in front,) approaches Endoscopically***(Inspection of body organs or cavities by use of the Endoscope,) for my disc at T9/T10 herniated laterally/anteriorly. After looking over my MRI's, the out of state doctor told my surgeon he could not get at the disc, and perform a fusion Endoscopically, therefore I was not a candidate.

Ahhh to have a couple of band-aid scars on my tummy.....that of course not being the most important issue with my surgeon now having to do the surgery from the back; the post-surgery pain was to be extreme. The morbidity and mortality rates rose many times over. Let's face it--what I underwent was an extremely dangerous surgery. The post-op pain WAS horrid. But I'm here to tell my stories and let others that are in the same boat with Chronic Pain hear me, know you are not alone, you are certainly not alone!!!



My heart goes out to anyone in pain this moment as I type. May you have the strength to manage your pain, even when it seems as if this cycle will never end. I'll say it now, that during the last 6 days of pain from waking-- till sleep that night: on the 5th day I just wanted to sleep the next day away. I had to get up of course, with all that little stuff I mentioned is going on in my life, (SO not little!), but I just wanted to not feel the pain! If sleep is the only way I can get relief, then God, let me sleep.


And today He did.

Making Your Pain Doctor A Partner

I saw my Pain Management Doctor last week. It is time for a medication change due to my ever-increasing pain. I don't take medication changes lightly; the process can be particularly non-pleasant at times, depending on what you are doing with the change. This decision has been awhile coming, right alongside the pain that just keeps coming. My choices are few. I need a partner to help me with this.


Enter the kindest, most professional, (without being like a robot), empathetic, with an 'I want so much to know what you feel when you tell me of your pain' look in the eyes; Pain Management Doctor. It was time to get down to business as we began. We consistently have a nice time together; we talk well. You know 'those' kinds of doctors?? I was married to one, {gasp} and feel that he is such a kind, caring, thorough and empathetic doctor, whose patients just adore him. We'd get the most wonderful gifts at Christmastime; mmmm fresh Persimmon cookies from one lovely patient--every year like clockwork, I was faced with a huge tin of the best cookies I have ever tasted, and what is a girl supposed to do?? Admire them? Ahhh NO, I made great use of them!! Point is that doctors whom patients can talk to, and feel deeply heard by, is the key to the successful partnership of the doctor-patient relationship.


My doctor and I worked together to come up with what to do as far as what medication to change, and when we figured out which one, it was up to me in the end as what to do. This is the #1 most important attribute that we, as pain patients, simply must have with our doctors. The ability to work together on any part of our pain management care.


When you visit your pain management doctor, the feeling in the room is ultimately that of teamwork. Talk together. Figure out what you are trying to accomplish first and foremost during that visit. Remember, come prepared!! Help your doctor out a bit too. I brought my daily medication log, jotted down the monthly 'total' of how my pain had done over the time since I last saw my doctor, and that helped so much in my visit.


I spoke with my doctor about feeling that deep pain the most when I stand up, and that I felt as if I would benefit from 2 rods in my back, long enough to cover 12 levels, (all the Thoracic vertebrae), and he said, "You feel unstable in your spine?" Yes!! That was perfect! The word described exactly how I feel in my spine. And it's a great medical term to put down in my chart.


It is through our talking, getting to pinpoint exactly what we are there to do: Accomplish solving a problem. And for that, we all need ourselves and another person who will talk openly, honestly, seriously, and with an attitude of doing it together.


I could never do this myself. I know what to use, how to take it and how to titrate up or down. Nursing and years of pain have taught me this. Options for complete medication change are not many in the pain arena. Then there is the how to change it when things need to be altered. I knew the options available to me, and therefore, had been considering them days before the doctor visit. This made the decision simpler, faster, and more of a feeling of unity when my doctor totally agreed at what I chose to do.


My spine feels unstable. Great word doc! Today is one of those days when the pain is constant, unrelenting, deep, with neuropathy (**nerve pain), and severe muscle spasms. My back has gone through a real workout, and the paraspinal muselces, (**the muscles that run along your spine in the vertical position) are now extremely tight. When I stand up, my back says, "I don't want to be in this position." I am compacting my spine, yet laying down is not an option. I must SIT, and always against heat. Yes, yes, I've tried heat for 20 minutes and cold for 20. That was more effective when I was recovering from a surgery. But now I speak of what works for pain that lasts all day sometimes, with no relief, such as today has been. The cold and hot are long gone as I have found that heat is the only relief, modality-wise. (Modality--**A method of application or the employment of any therapeutic agent.)


In an office visit, we are all aware that time is, and always will be an issue. In any medical exchange. Yet there are time issues with those on the phone, your appointment to have taxes done, your haircut; oh it would be nice to have the person you are working with spend as much time with you as you'd choose; but we all know it just doesn't work that way!


Ergo, (wow I really don't like that word, but it is a good one!), why I make the most out of the time with my Pain Doc, by bringing daily notes and things that jog my memory. The relationship with your doctor needs to be one of openness, almost like one you'd have with a psychologist. The doctor needs to know everything you feel, every medication you are taking, if anything as in a fall or accident has happened, and just to cover everything that could have precluded the increasing pain. This needs to be talked about with precision and knowledge, as serious decisions are involved.


This is your partnership. This is your LIFE! Work on having a close, open, honest, respectful relationship with your Pain Management Doctor. Above all, work on your own side of this partnership, by keeping a pain journal, pain log, whatever works for you. Be kind to yourself, respect your doctor just as she/he respects you as a person, and I wish you the best of care for your pain.


It takes two!!



Gentle Hugs... <3

June's Change of Shift Is Up!

June's Change of Shift is up over at Florence dot com, and I am grateful to be included in Barbara Olson's wonderful (and innovative!) hosting this monthly Carnival.

There is some awesome reading to be done with her choices of posts/blogs. I'm looking forward to this!

If you are not familiar with 'Change of Shift', it is a gathering of Nursing, Medical, and Patient blogs that give great information to the public, not just to other Health Care Professionals.

Please stop by Babara's site!!


Gentle Hugs... <3

The Six Words I Never Wanted To Speak

We all have some phrases, chain of words, or saying that just makes our hair stand on end, our heart beat raise a bit, and our mouths get dry. These are the dreaded things we must say at times to move on in life.

I have had six words that I knew I would have to speak soon, and I also knew the time was coming much faster than I pictured it; yet two decades ago when I became a nurse, I never thought I would have to say the phrase.

"I Have To Go On Disability." I made this choice, no one forced me, (although I feel that my back and the pain has forced me, for I have no other road to go down), yet it was a phrase I truly did not want to ever really have to utter.

This is changing my life completely. Not just immense financial issues, but the fact that I have to leave my patients. Although I was having trouble working, I never expected the rise in pain over the past year. It has been exponential. I adored my nursing jobs, whatever they may have been, and I adore my patients.


It was the Hospice patients in the two companies I did Hospice work for, that had grabbed my heart and never let go. I had found my niche. Where I belonged. I was one of those nurses that could say, "I understand", regarding your loved one being on Hospice, for both mom and dad died on Hospice, and I was the main caregiver for both of them. I stopped mid 2nd semester of school to further my nursing career, to take care of my strapping, strong 6 ft. 4 in. dad, that became a little patient, right in front of my eyes over a 2 month period. It all went so fast.


My dad, who won the body surfing championship in 1992. The dad that was the Senior Division Triathlon winner in Orange County. Hit the gym 3-4 times a week for hours. Ate the 'perfect' foods, and especially, didn't eat certain foods. So all that great food, and depriving himself of his old favorites, and keeping his body in awesome shape at 63, had no chance over the genetic power of Colon Cancer straight from his mom.


My professors were very empathetic, yet I could not keep any of the work or test scores from my 4.0 hard work of 1 1/2 semesters. I just wanted to help my father, the way he had helped me. Ah, life. Begins and ends. A circle that never stops. We played 'The Circle of Life' by Elton John at his funeral, (along with Eric Clapton's: 'Tears In Heaven'), to a packed church that stunned me, at how many people my father's life had touched. This was one year before my first surgery and one year before the pain started in seriously. I have been an 'adult orphan' for years now.


So, I have left nursing. I am a Disabled nurse now, and I suppose the correct term is 'Retired nurse', or how about 'Retired Disabled Nurse?' I just have trouble writing any of those words.


My life is so different now. I appreciate the little tiny things that I never paid that much attention to before. The bills keep on coming in. We all know that never stops. But the fear in me that I feel when I see them is new. I don't like this. But I knew I had no choice than to go on
Permanent Disability. My pain won. The battle is over.


Ironically, a new Showtime series called "Nurse Jackie", starring Edie Falco, had a preview showing on my free Satellite station last night, it is due to premier on Showtime tonight. I heard the intro, and it shocked me. I think that this show will bring up some heavy feelings in pain bloggers.


She said, "I am a nurse. And I have back pain. What is my choice..Unemployment?" And not to give the show away, but she then is shown taking all kinds of drugs throughout her shift, just to make it through the pain. Hmmm I'm not quite sure what I think of all that, but I will keep watching the show for now. It does give a very negative look at a nurse who is in pain. Why doesn't she go get an appointment with a Pain Management doctor? Why does she have to be shown illegally using meds that are supposed to be prescribed, not given from the doctor she 'knows' at the hospital, giving them both bad names? ***Will there ever be a show that chronicles the life of a nurse in pain that must stop nursing, and go through all the hoops and dances that have to be done, to be a self-sufficient 'disabled' nurse with back pain? I guess that doesn't make for such great TV.


"I Have To Go On Disability." There. I wrote and spoke it out loud again. Maybe the more I do so, the easier it will be to accept. My PM doc told me it is one of the hardest decisions for his patients to make, (I was in tears for days after I told him that was my final answer), and that I would soon feel a sense of acceptance of the entire decision. Along with that acceptance was to come that feeling of, "I did the right thing." THAT I know. That has been something I have needed to say for years, but I just kept pressing on. Leave nursing?? Me??


Yep. I have left. And now I am a Disabled and Retired Nurse. I hope that when I write my own life's happenings, there will be others who can relate. I have already met one online blogger who had to do the exact same as I have. Nurses have the largest percentage of back injuries of any occupation. But no 'injury' here. Just a back that is so messed up and in pain that it gives me no other choice. I will continue to write the posts that come from the view of a nurse; as once a nurse, always a nurse.


And I know in my heart, I did the right thing.

Words To Use To Describe Your Pain

Sometimes, even for those of us that love words, love to write, or journal, or anything with words; may find ourselves at the doctor's office, with tongues that are still and silent.

A visit to our Pain Management doctor's office can be overwhelming. No matter how long it has been since the last visit, we know that each day has been unique, up and down even within that one day, and then to gather one month's worth of days into words to give our pain doctor that answer to the question(s)," How have you been feeling? How is your pain?", is a daunting task.

My answer to this problem has always been to keep a daily journal of each medication I take, when I took it, how long before the meds were effective on my pain, and I try to use words to describe that days pain. When It is time for my doctor's appointment, I look back over those daily entries, and not only bring it with me, but to keep time at it's most effective for the visit and not sit and flip through each page while sitting there with my doc, I prepare a page that describes that month's daily pages into one.

From this, I can tell doc how my pain has been, same, better, or worse, (general), and how long it takes for the medications to be effective-- helps us to know if the meds are prescribed correctly, the med itself, the mgs., or the time they are to be taken.

It is when the WORDS are needed to answer what the pain FEELS like that I scrape that daily med log for the words I wrote to describe my pain that day that really helps me to come up with something for the doc. I'm listing some words that describe pain for you, in case you need some words to consider for your next doctor visit.


Does your pain feel or have the sensation of:

Hot-- Cold-- Warmth-- Periods of these?

Piercing-- Piercing with any of the above?-- Does it spread or stay in one place?

Deep-- Surface-- Pounding-- Seems to go with heartbeat?

Grinding-- Bone against bone-- Pulling-- If any of these, what are you doing, (if anything)?

Muscle-Involved-- Pulled muscle-- Tendon/Ligament-involved......

Squeezing-- Like a hand is inside squeezing area-- Twisting.....

Constant-- Intermittent-- Consistent-- Relentless.....


That's a start to help you pull some words if you are at a loss, or possible give you a new one to describe your pain.

I hope this helps.

Gentle Hugs!!!

Telling Your Doctor Your 'Subjective' Symptoms

This post will be a crossover between the medical field, and the patient in pain. I chose Pain because it is the one (out of many symptoms, yet pain is strictly subjective--only what the patient says it is.) Pain is a symptom (and a disease of it's own also), that can not be given a "simple" answer to the infamous question, "How have you been, and how has your pain felt?"

We, the patient, are giving a *****Subjective View, (***can only be given by the patient themselves.) No one else can be involved in the subjective question, unless you need someone to help speak or communicate for you. But these are questions, and your answers, that tell the doctor what YOU are feeling.

To let you in on exactly how the doctor or nurse asks you questions; if you ever remember your 98 second visit, (J/K) see someday if you can see this pattern in how the doc asked you questions during the visit. In Pain Management, the FIRST question is THE question that will let h/her base your plan of care on. Docs need to have a plan. And the first bunch of questions we patients answer supplies most of the information they will use in that plan.


I don't know exactly when things began to change-- the order in which nurses and docs ask a patient during their visit. Whatever acronyms Healthcare Professionals use, it evokes the same responses they are looking for. In the late 80's to early 90's, we used the acronym: SOAPIE, FOR:

S ubjective
O bjective
A ssesment
P lan
I Implentation
E valuation

Ok, so we know what order these words are in. Yet what are the providers attempting to elicit from you by using this acronym?

"Subjective"-- (Remember we are in our DOCTOR'S VISIT). This becomes OUR observation(s) of our symptoms and how to communicate them to our doc.

Doc: So, Shauna, how have you been feeling? How is your pain? (OH---Loaded Questions, right??) This is where I answer about the pain; telling doc that it is "Deep in my spine", "It is as if there is a hand squeezing the cord", "it is like when I had labor, my back was in such pain", and here is where I have finally found a way to explain to women whose back hurt during labor----**(THAT IS MY PAIN!! THAT ONE-TIME, QUICK PAIN DURING BIRTH. MY PAIN JUST KEEPS ON GIVING BIRTH.) SOUNDS quite 'ODD', BUT NOT TO A PAIN SPECIALIST WHO IS SEARCHING FOR THESE TYPES OF DESCRIPTIVE ANSWER TO THE QUESTION: "HOW HAS YOUR PAIN BEEN?"


"Objective"--What the doctor observes as h/she listens to you as you rattle off the Subjective part...trying, searching for words, any words, that will explain to the doc just how you feel in pain. They will observe how you appear emotionally, compare your rating on the pain scale to what they expect to see, although Chronic Pain patients have lived with pain for so long, that they can seriously be in an 8 out of 10 on the pain scale, and be just kind of starting into space. We have learned to cope with our pain in different ways, and unlike those with acute pain, we don't always have the screaming and crying when our pain is rated high that day. Crying, for me, is one thing that I show when it is high, go outside and stare at the mountains, but the chair won't let me sit there more than 3 minutes....you get the picture.


"Assessment"-- this is what the doctor/nurse sees, hears, feels, and smells, and they make notes according to THEIR observation of you, through the steps of assessment, taking your vital signs, palpating different areas, checking parts of the body; and the trained eye of a professional will allow them to find out where you are at in their eyes.


"Plan"-- which is when the doctor/nurse has to devise a plan of treatment for you, write any orders for needed blood tests, X-rays, MRI's CT Scans, etc. These are the plans of the doctor for your treatment.


"Implementation"--This is the action phase, when the doctor's plan is carried out. Tests are taken, and the reports sent back to the doctor. If physical Therapy was ordered, that is attended, and the Progress Notes are sent to the doctor. If medication was ordered, you will be taking it.


"Evaluation"--Time to see how your patient is doing. How did the blood work come out? The MRI's, etc.? Physical Therapy--did it help? You will both decide for the most part if the medication ordered is working or not, and I am still talking mainly about a pain patient visit.


These are the steps some docs follow--they are old school, some just use SOAP, and there are many other new acronyms that have come up since the years I spoke about. We had no computers at that time, nurses used SOAPIE, or SOAP, so did docs.


Just try and remember the SUBJECTIVE part of your visit. What you tell the doctor. Sometimes I'll have a friend that knows my life very well go with me to a doctor's appointment. And I go with them. As support, and also to help remember certain things that they had forgotten. Yet we can not speak for them. ***PAIN JOURNAL, remember!!!


I'll talk soon about some great words to use when you may be grabbing for anything that will describe your pain.

Gentle Hugs.... <3

A Chance To Educate Others About Pain

I am obviously a couple days late on the 'Blogging Against Disabilism Day", but the author of this day said that knowing we all have disabilities that would be just fine.

This post will be short, as what I have to say is 'short and sweet'.

When I get a famous blue sticker on my car, will I get "The Look" from those that do not understand everyone that uses one of these is not in a chair??

Will I get the looks AND an argument?

NO. And do you know why? Because although I may be the only one that knows that my pain is the reason I need to park close to a store, and that my pain is on the inside and that no one can SEE my reason for the disabled parking sticker, I will never, ever, get into an argument with anyone.

This is a time for teaching. A time to let other know that there are hundreds of invisible illnesses. I can educate them.

And THAT is what having an invisible illness is all about. Educating others.

Gentle Hugs

<3

This wonderful idea came from Diary of a Goldfish. Thanks for doing this, great idea, and there are so many wonderful posts that have been written!!

Video About The Back

This is a quick, but informative short video for those that are just now learning more about their backs and spines due to pain, Degenerative Disc Disease, or a Prolapsed, (or Bulging) Disc.


http://www.healthcentral.com/chronic-pain/symptom-checker-24-115.html?ic=4042



From Health Central.

Addiction, Dependence, Tolerance-Part 2

Now to continue to the 2nd half of my posting on these three words in the Chronic Pain patients life: Addiction, Dependence, and Tolerance. You may remember we stopped at talking about Tolerance. When we have become quite accustomed to the dosage of, or the medication in general that we have been on for a long time stops being effective on our pain; then we have become tolerant to this, and this requires needing a change in the medication. This does not in any way mean that we have become addicts and are seeking a high, we have simply become accustomed to the medication in it's effectiveness on our pain. Tolerance simply means that we are used to the exact amount that we are taking of a medication. Our receptors are still working fine, but physiologically, we have passed the threshold in which what we take -no longer equals pain relief. Again, this has nothing to do with addiction. I am talking about PAIN. Not about seeking a high. This is strictly about how our pain has surpassed the medication's ability to control it.


One situation in which a pain patient can resemble an addict's behavior, is when their pain is not controlled, and they are unfortunate to have not found a doctor that either believes their pain, or they have not yet met up with a pain specialist that would immediately hear what they have to say, and know they are in true pain; and so their behavior may resemble that as of an addict. They ARE focused on medications. But it is NOT for the euphoria. It is for the management of their pain. Anything to stop it--to take it away!!! When pain is left untreated, uncontrolled, the patient with chronic pain of course will focus on the medications, because they are not getting what the pain receptors in the body need to stop the pain; to block it. This is a sad situation, frustrating for the patient and doctor alike. My heart truly goes out to these untreated pain sufferers. Of course some must resort to the ways that addicts obtain their chosen drugs for their euphoria, while the pain patient is looking for something---anything, that will stop this monster called pain.


That is why I feel so blessed to have first found a world-renown Medical Center to treat my pain for 4 years, (after the last and final surgery that failed after a year of seeming success; and has now become Failed Back Surgery Syndrome), then I found the Medical Director of a Pain Rehabilitation Center, and have been with that doctor for the last 5 years. These doctors believed me for starters, then treated me as a human, and understood that when my pain would get worse over a number of weeks, without any change in lifestyle; we both knew that I was becoming tolerant to that medication, and it was time to change it totally, or as said before, change the dosage, or the frequency to see if that will break the increased pain. Of course it is not always about just the medications, it can be that your basic problem(s)/diseases/diagnosis, are causing you to have increased daily pain, and it has become worse, i.e., my Severe Thoracic Spinal Stenosis has begun to squeeze the cord a bit more daily, the Osteophytes, (pieces growing off of vertebrae), and into my cord are busy doing what they do--grow, and the pain into the spinal cord from them are causing an increase in my pain levels.


Then enter Dependence. This is when the body is so used to a certain medication(s), that an abrupt stop of that med will bring on withdrawal symptoms. It is a simple and straightforward issue. It is dangerous, and life-threatening. My next post is going to be on the importance of wearing a medical ID bracelet, and being a chronic pain patient that
takes everyday medications; this is an Emergency if you can not speak for yourself, and the Emergency Department knows nothing of your medications, and if they abruptly stop them--inadvertently, the withdrawal symptoms begin. Dependence can also be present in an addict. If they have been taking their non-prescribed medications for quite awhile, then suddenly their connection stops, they get caught at their place of work if they have access to medications, or their 'friend the doctor' stops writing them illegal scripts, of course they will go into a withdrawal, for they, too, are dependent on a medication.


Usually not just one doctor is involved in an addicts life, as addicts are well-known for 'Doctor shopping'; for addicts are after the HIGH, and they are not after taking any physical pain away, so without being followed properly and legally by a doctor, they 'prescribe' themselves their own cocktail of medications, taken in a variety of methods: oral, IV, IM, snorting, smoking, or any other way that works for any certain drug they were able to obtain, under whatever circumstance. These addicts are at high risk also in a situation when they can not talk in an Emergency, and the meds are not given, they have become dependent in their physical system, and will begin to go through withdrawals.


So, as a pain patient, we haven nothing to do--AGAIN-- with the word Addict, we experience Tolerance, and we can have the chance of going through the utter hell of Dependence in it's worst form; if it takes us through the world of unnecessary withdrawal symptoms; which should not happen, only unless the patient is in a situation in which we can not vocalize what medications we are on, no one is there to tell the doctors, (here it is good to point out that a list made of your most recent meds taken is with someone you trust, hopefully, the person on your Emergency list,) and that they are not to be stopped abruptly. Wearing a Medical ID Bracelet will have the prescribing doctor's name and phone number, so they can be contacted immediately in case of an emergency. The addict does not have the ability to wear an ID bracelet, as there is no doctor to put down, since they have been obtaining their drugs illegally due to their illness-- which is the disease of addiction. In the sad disease of addiction, I feel sorry for the addict in the ED. They are not well-liked in the ED, and at times are even treated as 2nd class citizens. When the nurses and docs see the IV insertion marks, they are angry because this person, although sick, and needing help such as admission to a rehab center, is one that makes it all so hard for the real people that need these types of medications to get them! And what our poor doctors go through to even be able to write the script without fear of FDA reprisal. Any doctor that randomly prescribes pain meds is just simply asking for trouble, and plays a huge part in the world in which the pain patient must live. And in a very negative way. It is like a chain--(that we may be unfortunately caught in somewhere), the docs that are helping the addict by writing the unneeded script, the addict fills and uses them, somewhere along the line the two are put together and caught, (hopefully, and usually only if there is a pattern between a certain doctor and a certain person), yet the doctors with true empathy and care of the patient that suffers from real pain must write Security prescriptions for the Opiates, which the FDA follows closely; we, (the pain patients), must wait exactly 28 days for the script, keeping us from over-using the medicines, and keeping the FDA happy, and from there it repeats itself every month for us pain patients.


It is easy and very interesting to go to the website that licenses anyone who needs a license to work--go to the doctors area, and you may be shocked at the amount of them who are on the list of those who have either lost their license to practice, or have had it suspended, and what is the most surprising to me, is the reason why these docs have gotten into that situation. Yep! Writing unneeded prescriptions, writing a very large amount of pain-medication scripts in a practice of non-pain-related work, such as a Family Practitioner or an Internist; and a variety of other things, including sexual harassment, etc., but for the most part, is has to do with that little pad that many feels makes them a God of some sort. Many doctors do NOT have the ability to write Security prescriptions, they are not able to obtain the pad, as along with being scrutinized in their background, the FDA decides if that doctor works in a chosen field that would require them to write no more than Vicodin, for short-term use. The docs who have the special Security prescription pad have earned it, work in a pain-based area with pain patients, and now have to take a test for EVERY TYPE OF MEDICATION THAT THEY ARE PRESCRIBING. Oh, a waste of time? I am split on that feeling. It keeps the easily-swayed docs out of that group, and keeps in those that are truly serious about prescribing a strong medication for a patient that truly needs it. There is a good reason for both.


So, our lesson tonight: Addiction, Tolerance, and Dependence are words that need to be understood by all pain patients. Remember, the more educated we are, the better we communicate with our doctors, and they are our gateway to a life in the least amount of pain as possible, without being knocked out all day. It is a game of trial and fine-tuning. This does not happen overnight, and changing meds can be one of the hardest attempts we pain patients must make at times, to find that as-close-to-perfect dose of meds. I once changed my main pain medication, to really feel what my days would be like using a new and much more 'easy use' of medication administration to myself. It was truly hell. Yet I wanted to ride it out, give the new one a chance, and see if it would work. I could truly not believe how horrid my pain was. I had no idea it could get so high. It set for me, a new pain scale after feeling that. Now a 9 out of 10 (9/10) on the pain scale is a 7/10 after that experience. I ended going back to my old med, at a different dose, and I was amazed just how well it really did work, until I had gone without it while trying something new. I was NOT HIGH. I was NOT EUPHORIC. I was NOT having fun. It was the worst time pain-wise for me, save for after my double fusion with 2 rib heads drilled out, that I have ever felt. I would not wish that on anyone.


I have said myself, and heard others also, say," I wish I could get a buzz off these meds sometimes." When the pain is so high, and the meds are not working well that day due to who knows why, or we overdid it and don't have enough spoons left, (Hi Christine!); it would truly be nice to feel relaxed and happy at that time. Forget the pain. But we are not addicts. And our pain receptors are using the medications for just that---to block pain. We don't get the buzz that addicts get; their pain receptors are not asking for anything, and they get the medications straight to the pleasure center of the brain. Our pain-filed bodies just don't work that way.


Well, my body is now in pain, as I have been sitting here too long and it is time for my heating pad and answer an important call. I am high off of the fantastic tacos my friend made tonight, and those beans--so creamy....and I can't do one dam thing about my pain right now. Hormones have become my true enemy lately, and for about one week before my period, I get pain levels that have been 9/10 the minute I open my eyes, making little grunting sounds as I make coffee, and then the usual routine, take meds, sit on heating pad, and wait for the effect of both to hopefully take effect. I always get some relief, if even just for an hour; but for the pain to go down to a 7 then up to a 9 again within 4 hours is not what I call relief. But I am not going out searching for anything. I just need to search for the time tomorrow to call my pain doc; for it is med time, appointment time, fill those meds time, and then do it all over again the next month. Addicts may dreamily say how nice that must be. But I'm not a woman with a disease such as addiction who swallows or shoots up drugs to get high. I am a woman with a disease called severe Thoracic Spinal Stenosis, (my spine is being slowly 'crushed'), I am a woman with the disease of bone fragments growing out from the vertebrae and straight into my cord, and I am a woman whose pain causes nothing but empathy from my family that care about me, my friends whose desire is to be able to walk a mile in my shoes so they can understand what it is I feel every day, (I have a feeling they'd stop at a 1/8 mile), and a woman whom my fellow bloggers who do know what it feels like, give me true support and more empathy.


And THAT helps the pain--if even for a moment, if even in my mind, taking the focus onto other things.....


Anything but that pain.


Remember WHO and WHAT you are. We may never get our world or the people in it to understand exactly what it is that we MUST DO to live with everyday pain. And I just don't care anymore about wasting my time in doing that. I am done explaining, cajoling, talking into, about my medications. Let them all think what they want. As I've said before, I surround myself with those who do not judge me or require any type of explanation about my life. Just please don't put the word ADDICT in the same sentence when talking about my pain, and what I have chosen, and need to do so I can have a semblance of an actual life. Please.


Just remember we are pain patients. Not above or below anyone. It is just the hand that we were dealt. I've played enough card games in my day to know this:


I don't care for this hand!! Can I go fish??


BTW, my pain doctor told me yesterday (yes, this has taken me more than one day to write), that the recovery of my hand and arm were known to take 1 centimeter per month to heal. Whaaaaaaat? I asked doc...did you say month??? So we counted out where my numbness starts, how my ability to NOT hold onto things is, and how many centimeters it would take to equal a year.


I've got some time on my hands. My HANDS, get it?? hehe


I hope that the explanation of the words Addiction, Tolerance, and Dependence have been of some help to those pain patients that take strong medications. We do NOT need to explain our choices to anyone!! Just make sure you have someone who you trust to talk to about this issue. To give you a close and honest feedback of how you seem to be handling your meds.
It rarely gets out of hand, but it's good to hear that from someone who truly loves you. Your doctor, the one whom you have a very close and also honest relationship with, should be told everything when it comes to the taking of your medications. They see you for a 1/2 hour every month, every 2 weeks, whatever your schedule is. Thus the reason for that pain journal!! It's hard to remember the last month or 2 and relate it all in a half hour.


Let's take a pro-active stand on taking medications. We have the right, the reason, and the need. Let the addicts get jealous and angry. For they are not us. We are not them. And most of all, let us keep, and STRENGTHEN the bond we have with other people in pain. There is no other group of people than those who feel exactly what we do, to truly care.


Gentle Hugs...<3

Addiction, Tolerance, Dependence #1 *Repost

When those of us with Chronic Pain are prescribed a medication- that we have discussed with our doctor at length, have been informed of all possible side effects, understand what exactly it's function is, why, how, and when to take this medication; and a really great pain doc will let you know exactly what you are getting yourself into, we must all understand the words: Addiction, Dependence, and Tolerance.


These three words are so often used incorrectly, interchangeably-- when they are not; and all three are very misunderstood. When a pain patient needs an opioid or other strong medication to help take some of the pain away, you will run into these words. I don't want you to feel that family, friends, or others that are NOT in your shoes, hear a certain word and try to talk you out of going on a medication that could change your life for the better; so much better. You could have a quality of life again! This decision, of course, is made between you, and your pain specialist. It is you two that talk privately, it is he/she that hears your deepest sorrows, frustrations, and clear descriptions of where the pain is, how long it lasts, what you do that ***exacerbates it, (makes it worse), what helps the pain, and what you feel like on the days that you just don't think you can take it anymore. The others in your circle, including family, friends, co-workers, and those that just think that you must hear their opinion--or the story of Uncle George; certainly mean the best, of course--they care about you; but what do they know of the medications they are so quick to judge--simply because of a WORD??? ONE lonely misunderstood word?


***Receptors***: another medical term that needs to be understood well by pain patients that take medications. This word has so much to do with the entire order of things, in the way that the physiologic part of the body works in conjunction with the medication. Just remember this word and we'll get to that later.


When you first start on an opiate, you will most likely feel the side effects of some euphoria at first, tiredness, constipation, upset stomach, and others. Then... you find yourself after just a while, and I'm speaking a matter of weeks; not feeling one of those side effects: the euphoria. This is where the word receptors comes in. Those of us with pain, have receptors open; waiting for something to fill them, and that is a pain medication. Then those receptors get what they are waiting for, and are filled, like little holes inside you, and when they are blocked, this goes into the whole "Pain Gateway Theory", and the now-filled receptors are able to take that medication and use it to do exactly what they are needed for: To stop the pain. Here is where a very hated, and misused word comes in: Addiction.


The peanut gallery around you hear that you are taking an opioid and immediately say, "No, don't take those, you will get addicted." The latest and most respected studies have shown repeatedly; that those in real pain, that take opioids, that have those pain receptors finally filled; do NOT get addicted. That is an extremely rare occurrence.


Then what is Addiction? This is a state of being. Not a state of feeling. It has nothing to do with pain at all. Addiction is a disease, with a state of mind in which the user is constantly chasing that euphoria. They will do anything to get it: steal, divert, lie, and even begin to think about selling their own things for the money to obtain the drug, or even their own bodies to get it. They will sweet talk those that they know can write a script for them, (possibly a co-dependent in their lives), they will literally become another person, as their only focus is on obtaining the drug, FOR THE HIGH; THE EUPHORIA. In a pain patient, the euphoria is very transient. Why? Back to the Receptors. The medication has a purpose, a place to go, a job to do. In an addict, the receptors that are open are those for euphoria. There is no physiological reason in the body to take these, therefore, all they feel is the high. The #1 sign to look for in Addiction, in the addict, is a change in the person's life--in a negative way. Either it is the person being gone a lot more than usual, as they need the extra time to meet up with those that have the drugs, they start to show signs at work if they are using on the job, or if they are medical personnel, they begin to make a lot of mistakes, especially in charting and in the count of controlled substances, wasting a lot, not accounting for the medication at all, giving too small of a dose and not charting that they threw the rest away, getting a medication from the pharmacy without a doctors order for that patient, and simple, outright stealing, as in the nurse who signed out of the pharmacy a very very strong IV medication for a patient that had been discharged weeks before. In other words, their lives start to fall apart. They do not act like themselves before the addiction behavior began. It is noticed by their significant other, (unless they are also using), the family, friends, and co-workers. You can not be an Addict and not have it come to a point where you hit bottom. I've seen it with both drugs and alcohol in addicts.


So, when the pain patient takes a medication for pain, none of the above needs to happen! We don't need to fight and argue and lie and pretend and shoot up in a bathroom then try to hide being so high you can not speak right or do your job safely. Those of us with pain, are slowly becoming used to a new substance in our body, and that takes us to: Tolerance.


Tolerance is a state in which the body becomes to get used to the amount of medication being prescribed, and we find that the amount we are taking just simply doesn't work anymore, or as well. We become tolerant to that medication, and to have our pain managed, the dose, and/or the dosing frequency, need to be changed to get the same effect. Notice that this has nothing to do with the word addiction. Addiction stands alone, and it is not a word to use in the world of the Chronic Pain patient. There are no equals, no sameness in the two worlds. Pain patients' worlds are already 'messed up' by the pain; but we don't focus only on the medication every second, because we are not addicts, constantly seeking that high. Addiction is a disease. Having Chronic Pain and taking medications prescribed exclusively for that, and monitored very closely by our pain management doctor, is our life, not our disease.


To be continued...............

You CAN Get Through Your Pain And Physical Issues!

With a hand slowly opening more day by day, and increasing pain from holding the right arm up to either write, type, or drive, I have learned again that I can, and do, make it through each and every single challenge that is placed before me.

How? With the knowledge that I MUST. I have no other choice! I am learning how to ask for help. I am learning to not get as annoyed each time I drop something, or knock something over which has been every day in this last month plus of the spontaneous paralyzation. Many clean ups, many attempts that seem to get more impossible each time I try to pick something up that has been dropped on the floor, each one of those seemingly small things make me stronger. Emotionally.

The ability to LIVE and live with happiness through decades of ever-increasing back/now neck pain, (Chronic Pain), shows me that I can continue to face each issue that faces me, physical or not, with determination, a sense of purpose, a reason for it all, and a 'never give up' attitude.

If you are feeling alone in your pain, or in your physical issues, please know that you are not alone. Just because I have chosen to write my life for the world to see in a blog means nothing when it comes to my being any different than you. We, the sisters and brothers in pain/hidden/and sometimes NOT so hidden illnesses, must band together and begin to rely on even the simple words we read on these blogs geared towards these subjects. I want to help you all. Yet, I have not even been able to read, or forbid, answer the emails sent to my blog address.
No one is being ignored. I just can't do it. Not like I used to I mean to say. I need to work through things in my life one by one, and take the priorities first. We must prioritize- or then it will all seem like too much, and become overwhelming

Just hang in there. The pain may never stop, but the daily will to overcome it won't either.

My Curled Up Hand--Paralyzed Again...

It was 3 plus weeks ago. A regular morning of waking. Open eyes. Experience that few seconds or minutes to realize what day it is, what is to be taken care of, etc. Turn in bed, waiting for the pain scale of my spine, to begin counting up, up, up it goes with each moment. Of course hopefully not up into the 8's first thing in the morning. I reached for the water glass next to the bed. Then I realize this is not a normal day, (whatever that is,) it is to be the start of many very
abnormal days, separate from my back pain.


As I reach for the water, from tips of the fingers of my right, (and dominant hand), to the mid upper arm; I feel absolutely nothing.


I feel nothing.


I look to see my right hand is curled up as if I'm holding tightly onto a small treasure that I don't want to let go of. Yet nothing is in my hand. There is no treasure.


The wrist is completely dropped, with the inability to make it move. Imagine you are holding your arms straight out, and drop your hand at the wrist. Try to use the muscles to bring it up to the level equal to your arm. Easy, right? No. I can not move my hand.


I feel nothing.


After 3 weeks I still can not lift my hand to do anything, especially to bring it up to level with my arm. I have no muscle control.


I feel nothing.


I am paralyzed again in my right hand and arm. No movement. No feeling--Nothing.


Just a dead arm hanging at my side with wrist drop, and tightly curled fingers.


This has happened 2 times before, and now three, all in a 2 year period. It is terrifying, and most of all, I know that nothing can be done, but to just wait it out each day. When I saw my pain doctor, he asked me to close my eyes and try to lift my curled up hand, hanging at the wrist--up. Just move it. I felt as though I was bringing it up to be level with my arm, and then I opened my eyes. Nothing. Not a centimeter of movement. Still just a curled up hand hanging limply down at the wrist.

I have no control over the forearm muscles that are used to raise the wrist and hand up.


I felt nothing.


It has been impossible to write longhand, funny how ambidextrous I am, when I HAVE to be! Hardly readable, I thought, sure, typing will be ok!!! NOT. The shoulder strain of holding up the dead arm and hand to henpeck with one finger is tremendously painful and affects my Thoracic spinal muscles also, causing spasms even more than are already present.


As time has passed, my fingers are uncurling, tiny bit by bit, and wearing a hand brace that forces them to be straightened out helps for an hour or so at a time before that causes more pain.

I'm no longer holding as tightly onto the treasure that was never there.


*****Now, it has been a week since I wrote the above. Time to post this...and I am feeling!!


But now, it is pain I feel.


I feel. My arm feels. My hand feels. Numb to the touch, painful all the time. fingers still curled, but not as much. They are slowly opening up. I am still unable to use my hand, for SO many things, write, or type normally, (still only using my right index finger), but I just push
on. I always have. Suddenly faced with many papers to fill out, I am really putting the stress on the right hand, even when using the left one to write. This is one of the most stressful times in my life, there is SO much going on, my life is changing, and I have finally accepted what I am able and not able to do. I was pushing myself way too hard. Being unrealistic.

Stubborn. Always pushing myself. Much too hard. Physically and mentally. I'll write more about that later.


Be thankful for your working parts. We take a lot for granted, and when we lose the function in a body part, it is amazing just how much we use that hand, or those fingers, etc. How much we just use our body and expect to wake each day to the same abilities. When it changes overnight, it is a feeling that is almost indescribable, and your life changes 100%.

I am thankful I HAVE a hand and arm.


I feel!!


I just want to feel a little bit better.

The Pleasure of Meeting Others With Pain

I have received a load of emails recently from others that have chronic pain also. I am just so amazed at the amount of people that apparently have read my blog writings and musings, and been touched enough to write and share their stories with me.


THIS is why I started my blog. To just touch that ONE person in pain, or someone who just was diagnosed with chronic pain or learned of why they are always feeling so lousy. To even learn the reason behind the pain alone is a true blessing, as many have no actual diagnosis, no explanation why they are feeling pain in their body. That is one tough thing to deal with.


As I hear from others in pain, and write back to them; I realize that my mission has been accomplished. I just want to reach the right people! Those that will take something away from my posts and feel (maybe) not so alone. I know that when I met the first person in my life who suffered with daily pain, I felt as if I had made an immediate best friend.


Those that I meet online who share the same issues as me, who I have not met in person, (yet!), 'get' me. They are 'sisters' and 'brothers' in pain with me. We understand each other. We can chat online and immediately know what the other is truly feeling.


It will be one year for me next month that I began blogging. I began this journey on another site on Feb. 22nd, of last year, and moved here in April. I can't believe how time has flown by. Some of the most special people I've ever met in my life have been since starting my blog,and they have become some of my closest online friends. One of them is my "Kindred Spirit". We both knew right off the bat that we shared way too much in common to be anything else but that.


Have you ever heard the saying that, "A person will come into your life for a reason, a season, or a lifetime"? Well these special people that share my daily pain and truly understand it, are now all 3 of these to me. The reason was to let me know that I am not alone...the season will be each and every one that we go through each year, and the lifetime is just that. All of us will not part ways through our lives. We all know it, we share pain, one of the deepest and most alarming sensations to experience in the human body, and we together share the fact that we feel this sensation daily in our bodies.


We are all bound together for life. Whether we ever meet in person, or continue to know each other online thanks to this wonderful newfangled equipment called the computer and the web, those of us that feel this pain are in it together--for a lifetime.


That is all I ever wanted from writing this blog. To touch just one person. Looks like I got lucky!!


I wish you that know what it is like to live life with pain, a low or tolerable pain day and evening. Of course, the goal is to feel no pain. But let's get real...I write in truths, and that is wishful thinking for the majority of chronic pain patients! At least in my case...for it is always there...lurking in the background when it is not the star of my day. I'll take the lurker over the star. Of course, we would all take the NO pain....if it is ever to be found. For an hour, for ten minutes, for a moment. It is so welcome, yet rarely materializes.


And our lives go on, regardless of this familiar entity in our lives called PAIN. We persevere. We move ahead. We work on our goals. We LIVE with the pain. LIVE! And I believe we all do it-- very, very well !!

How Amazing This Pain Truly Is

It's 2:30 a.m., and this day seems as if it will never end! Just one of 'those' days.

I really need some good sleep and some time on the heating pad. I wish so much for a laptop so I could do so much more writing with the help of that heat and in a better position. I think this 'ergonomic' chair is not so friendly anymore. As a commenter said, it is so imperative to take those needed breaks. And in my reply, I wondered: "But what if those breaks are not to be found?" Ah, a true dilemma!

What do we, those with pain in our lives every day; do when the actual time that we know we need to be taking a break is not there? I think I found an answer. Like so much in the life of a chronic pain person, we FIND WAYS to deal with it, we are innovative, and we are smart.

You can find me in stores sometimes, literally hanging at the waist, not only to look at the products on the bottom shelves, (as my knees with 2 surgeries and arthritis have gone out for squatting long ago), but also just to get my body in whatever position I can, in whatever place I am, into anything that will take the pressure off my back. My freind laughs at me, but with sadness at the same time when I do that, knowing how much pain I must be in. I just have to laugh along with her, knowing that I look odd, but anyone that really knows me knows that I don't care one bit what anyone thinks.

What I'm trying to spit out here, is that wherever we find ourselves in pain, there is a way to relieve it-- just a bit at the least, by changing our body position. This may not be true for all of course, nothing is, as we all have our spots and places that hurt the most, or different ways of hurting.

When I was waiting for my meds the other night, I had two pillows I'd found on sale, put them on the pharmacy counter, and had my head on them, with my back in a swayed position. With Spinal Stenosis, there is no one way, flexing or extending, that will take the pressure off my spine. Having finally found the perfect analogy for my pain when watching a Discovery program the other night, (that is my next post), I realized that I am in quite a quandary when the pain hits, and I am not at home, have no place to actually lie down, (which doesn't always do as much good as many people think), and have no one with me to apply pressure that may help for a time.

So I stood there, my head down on the pillows on the counter, my butt back as far as possible, and my back flexed as far down as I could. Then extend. Then flex. I was doing a form of "Pharmacy Counter Pillow Yoga"!! The 'Cat' revised. Along with the hair hanging down while I stand in the aisles and hang at the waist, I must make quite the comedy show for the ever-watchful security cameras. No, I'm not stealing. I'm hurting. But they'd never know it I imagine, to watch me.

I sit here now, with my back in spasms, and we know that spasms follow pain, and pain follows spasms. So what do I do? Get into bed!! I'm finally in a place and a time when I can rest and do some good for my body.

We all must practice good body mechanics when we can. SO much easier said than done! But when possible, out in the world, away from your place and position you know is the ultimate BEST for your pain, try and experiment with different body postures. It does help, if even for a moment.

And a moment of no pain is better than one with it.

You'll find me in the aisles...the lady with her long hair hanging down, bent at the waist, just trying to achieve a moment of relief. And after decades of having pain, I still marvel....

How amazing this pain truly is!!

Taking Refuge In Writing

So, it's 2009 eh?? The holidays and everything that goes along with them, mixed with my pain, have left me in a total state of exhaustion. I felt had to take some time off.

Obviously I haven't posted for awhile, which just reflects how my body has affected my ability to do so many things that I love to do. I have written my entire life, even have had one special professor at school in one of my many English classes, ask if he could utilize my MLA documented report, and our final assignment; as his new 'example' that would be used for his students. Funny that so many eyes have gazed into my view of Euthanasia over the last decade plus, and the owners of those eyes have no idea who I am, what I look like, what my life is.

The journals I've kept for 3 decades hold who I truly am, and I feel such release when I write. These will be the basis from which I will draw my memories when I need a memory jog--that will form the Memoir I am writing. (Personal note: Kindred Spirit, I AM writing a book!! And thanks for the suggestion that I do so, and your call of support in that!!) Many that have known me very intimately over my lifetime, have told me that I should write a book. They have known my past, my experiences, and tell me that it would make excellent reading. I don't care about being #1 or for that fact # anything on a best seller list, I just want to put out there a life that for some reason, has experienced very odd, very fantastic, different, varied, and deep experiences, that do deserve to be shared with others. I have heard so many tell me that my life is, and has been extremely interesting, and worth sharing. A book is something that of course takes time, my fellow writers all have their own 'methods' of when they write, how often, and when they take breaks, etc. It is a very personal journey, as is the journey that I am putting on paper for all to see someday.

Writing has always been a stress reliever for me. Ever been in therapy and been told to write a letter to someone but to never send it? That is done is Psychology to uncover the deep feelings we have about that certain person, knowing that we are not ever showing it to them; therefore, the holding-back feelings are gone that may accompany a letter written with the fear that they may see it. An exercise in honesty! And I for one, have wanted to send many of those types of letters, as I feel that openness and honesty is always the way I want to live my life. But I don't mess around with therapy. It's been awhile since my therapist said, "It's time for you to fly Shauna", which of course brought tears, a close to a very intense year of talking, reflecting, and just plain speaking my truths to an unbiased person.

So, I have flown, and I have landed quite a few times. To gain energy, take refuge in myself, those closest to me, those that give me support, help, and know what I am going through. This gives me the much-needed energy to take off again, and fly....to do what I must just to eat, have a roof over my head, and have some semblance of self. Attending school while I am doing all this has proved my character; one of perseverance, wanting to attain something and not letting my pain stop me from achieving my goal, no matter how long it takes.

I will write about that too...I just need to stay on the ground for awhile now.

My wings are so tired.