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.
First of all, everyone must realize that when pain patients are doing anything stressful, and especially when this requires going out of wherever is the most comfortable, (leaving home in my and most cases), then driving from one place to another, pain levels rise. When driving, sitting in and dealing with the traffic, prolonged sitting, standing and walking; pain levels naturally increase. Then the stress involved directly causes higher levels of muscle spasms along with the higher pain,m and the spasm/pain cycle begins. Unless immediately addressed--muscle spasms will continue to do just that--spasm! The Spinal Stenosis*** {Stenosis: 'Act of narrowing'***Constriction or narrowing of a passage or orifice--the spinal canal in spinal stenosis}***I have does not respond well to muscle spasms. The ***Paraspinal Muscles***{ muscles that 'run along' the spine which are actually composed of 3 main muscles that attach to the vertebrae and are not vertical in direction contrary to how they feel and look}*** surround my spinal cord that is already hardening and narrowing, and squeeze. It is not a positive experience.
Starting on the day that my medications are due, I need to go and pick up the Security Prescriptions from my doctors office. I see my pain doctor on a normal basis every other month, but many times I need to see him monthly. The 'off' months' require me to call ahead first to the pharmacy I go to, to have them order the needed meds if necessary, so they will be there when I go to pick them up. ***Do this ONE WEEK AHEAD of the date you are to fill them.***This is something that everyone should do, no matter what your meds are; just to make SURE your medications will be available to fill at your chosen pharmacy. Never take for granted that you can walk in with your prescriptions and just get them filled. This is where you need to be PROACTIVE in your healthcare, taking the needed steps to be sure you will walk out with your meds when the day comes that they are to be filled. Everyone who has gone in to fill their prescriptions and are told the pharmacy does not have them in stock, or do not have the exact quantity; know the frustration that causes. I have seen more frustration in people during my waiting time at pharmacies, than any other place. Of course it is only when someone can not walk out with the prescription they brought in, when they brought it, in a reasonable time even; that frustration and pure anger in some is shown. And some people can be downright mean about the issue! I just sit and gaze in wonder at them as they yell and act like children......
One week later after calling the pharmacy, it is time for me to call my pain doctor and remind him that he needs to write my prescriptions. I start about 4 days ahead of the actual fill date. Doctors are busy people in general, and mine is also the Medical Director of the Hospital. So I know he has extra work, meetings to attend, and I allow for that in the calling ahead 4-5 days of my due date. My years living with an Internist allowed me to learn the 'unseen life' of a physician. (And WOW did he have an unseen life!!)
Once I am assured that the prescriptions are written, I call ahead again before I make the trip to pick them up. Just another protection for myself to NOT make an unneeded trip. My doc has a fantastic assistant, who does all of the passing on of phone calls and med refill reminders from the patients, then calls me back to say that she has the prescriptions. She happened to be gone out sick the entire week that I was procuring my prescriptions, and I saw just how much she does when she wasn't there. My doctor called me himself this time to tell me that my precriptions were ready to be picked up. Yes, I have been blessed with a doc who believes in the old fashioned patient-doctor relationship--and he takes time on the phone, not rushing; and allowing me time to talk to him if I need to.
So, I have called the pharmacy that fills the meds one week ahead of time for them to place the order; called the doctor who writes the scripts and let him know it is time for my monthly meds....
Next comes the odyssey of filling those scripts. This is the most lengthy process. Another thing that many take for granted, and if you do not need to deal with SECURITY prescriptions, you probably don't need to go through all or any of these steps. More power to you.
Security Prescriptions have replaced the old Triplicates; used for certain classes of controlled medications. Triplicates were exaqctly that--the doctor wrote on the top of 3 papers; one went to the patient, one stayed in the doctor's triplicate book, and one to the DEA. For whatever reassons, these have been completely replqavced by the Security Prescription pad. Copying, altering, or anything else with these prescriptions leaves the 'alterer' with a very messed up paper to work with. There are so many hidden security features, that it is nearly impossible to now try to change a script on these new pads. These types of scripts must be hand-carried into the pharmacy to be filled. The doctor can not call these in. There are never refills on these. And they make just one more step for pain patients, (and other diagnoses), which is something that those of us in pain really do not need--an extra step. But because of those that have falsified, forged, or altered these types of prescriptions, those of us that follow the law have to pay for what 'they' have done in extra steps to fill our meds. The DEA also has a great deal to do with the need for the new Security Scripts. Doctors are under quite a magnifying glass in these years, with the DEA monitoring them closely, to write them perfectly, never going over the 28 to 30 day amounts given each time. These scripts must be carefully guarded after you receive them. They are not easily replaced, and again; the doctor can not just call the medications in. Most pharmacies ask for ID when picking these up; but sadly, many still do not.
Next in this journey, comes going to the doctor's office to pick up the scripts, and my doc will leave my scripts with the security guard at the Hospital if I cannot make it before 5 pm. Most times it is impossible by the time a shower has been taken, hair dried, and some sort of face fixing has been done, for me to just continue out the door, like I used to in the 'old days, before my spine was attacked by the very painful Stenosis, or Osteophytes impeding the spinal cord, overgrowth of bone closing off foramens and exiting nerves, before all the surgeries and procedures, and before more discs began to herniate, (4 active now), before the discs dry up as in Degenerative Disc Disease or DDD, before Failed Back Surgery Syndrome, or FBSS; before so much has happened to and in my spine. A shower alone is very hard for me, painful to do with what is usually taken for granted in a shower; like reaching up to wash hair and not bend my neck back, and the act of just standing for the time it takes me; all which simply exacerbate my overall pain level. I have to sit down again after getting ready, with the heating pad on; or what is to come will be done in extreme pain.
Off I go, eventually and reluctantly, to the doctor's to pick up my scripts for the month. I say reluctantly because I have been having very high pain levels regardless of the time of day. I went inside once I arrived, and no one was at the Security Guard's desk, which held my scripts. It was after 5. Waiting is not one of the best things for my back. I found myself pacing by the desk, as sitting is no better; and over 15 minutes later the guard came back to his post, apologizing profusely for the fact that I had been waiting; and worried about me doing so. He had been helping a patient move to a new room, which I saw from down the hall. I did not feel I needed to walk the long hallway to bother what he was doing just to get my scripts. Everyone's needs are just as important as my own. The patient that was being moved was obviously in very bad shape and in great pain, or the patient wouldn't be there!! The sweet guard gave me the envelope my doctor puts my scripts in, and out I went for the next step of the evening, checking the written scripts before I walked out, although if something was wrong I could not have had anything changed at that time of night.
Driving to the Pharmacy from the doc's, I realized that each minute I was to wait that evening to get the scripts filled was only going to make my pain worse, which was rising rapidly by that time.
Dropping off the prescriptions is the easy part. Then--wait. Sit and wait. Fortunately, because of pre-planning, making sure the pharmacy had my medications, they were filled in a reasonable amount of time. When the time came to stand in line for pick-up, it was not moving fast, and the line was long. I am used to all of this. It just takes a strong drive, and God's help to go through these needed steps in great pain.
After I had paid and walked to my car, I was absolutely worn out. All I could think of was getting home and sitting in the recliner with heat on my back. Another month taken care of. Medications in hand, I made it into the front door. Home. Rest. Heat. Meds.
And in 28 days, (or less), I do it all over again. Fun, eh??
I wish you who suffer with pain, a day of low or tolerable levels......ultimately of course, no pain. Well, I can wish for you, can't I??? :-)
Gentle Hugs... <3
Wednesday, November 18, 2009
Thursday, October 15, 2009
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.
If we purchase those same granola bars in bulk size, the overall amount of packaging materials is less! We can pay less per ounce for the same food item, and the packaging it takes to produce a bulk item, will be much less than the packaging for the one box of those same granola bars.
I know that for many, especially in these tough economic times; it is hard to put out the money all at one time for an item in bulk, that we could buy for less if we just purchased the small package. Yet overall, it will cost less to buy the bulk, and that will save us money on items that we use regularly.
More important, to buy in bulk reduces the amount of packaging needed to obtain the very same item. Anything that we can do to help the earth is the one most important issues we face today. The outcome of even the seemingly smallest of actions that we can take, can, and will make a difference.
It has always bothered me that so much packaging is used to hold a relatively small amount of the product we are buying. We all know the potato chip issue. Supposedly that huge amount of nothing at the top of the bag is to give the chips some 'room'. It seems to be a race within the companies that manufacture chips, to see who can have the biggest bag, to try and make us think we are getting 'more'!
Many times, when the groceries are being put away in my home, I take them out of their outer packaging simply because I don't have a lot of room in which to store the larger-than-necessary boxes, bags, or cartons which hold the products. I then put the freed smaller inner items into a tupperware or other stackable container. It is truly amazing how much can fit in cupboards once out of the original containers! Waste, waste waste!
What is sad though, is to see the stack of the outer packaging after that is done, especially if done all at once after a large grocery trip. The saddest of this all to me is knowing that I alone can not change how companies package their products! Yet I can change the amount of outer packaging they use, and in turn I consume, by purchasing a larger amount of that product at one time.
If we ALL do just one or two things that are realistic for each of our individual lives, we can change the rate at which excess is consumed. This, in turn, will make a difference in the Climate Change of our planet.
Just an idea....What do you think can be done to help??
Now if ice cream could just be bought in the same way-- and FIT into the freezer!!
For more information on helping out the planet that sustains our lives, go to http://blogactionday.cmail2.com/t/y/l/ulirtd/tthlilod/b to see a list of all the bloggers that participated in today's subject, and there is bound to be something there that you find fits in with your life, and many ways to help the Climate Change slow down. There have been 150 COUNTRIES that have written about this in their blogs today!! Global Warming and the resulting Climate Change, is the most important of issues facing all of us today.
Gentle Hugs... <3
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.
If we purchase those same granola bars in bulk size, the overall amount of packaging materials is less! We can pay less per ounce for the same food item, and the packaging it takes to produce a bulk item, will be much less than the packaging for the one box of those same granola bars.
I know that for many, especially in these tough economic times; it is hard to put out the money all at one time for an item in bulk, that we could buy for less if we just purchased the small package. Yet overall, it will cost less to buy the bulk, and that will save us money on items that we use regularly.
More important, to buy in bulk reduces the amount of packaging needed to obtain the very same item. Anything that we can do to help the earth is the one most important issues we face today. The outcome of even the seemingly smallest of actions that we can take, can, and will make a difference.
It has always bothered me that so much packaging is used to hold a relatively small amount of the product we are buying. We all know the potato chip issue. Supposedly that huge amount of nothing at the top of the bag is to give the chips some 'room'. It seems to be a race within the companies that manufacture chips, to see who can have the biggest bag, to try and make us think we are getting 'more'!
Many times, when the groceries are being put away in my home, I take them out of their outer packaging simply because I don't have a lot of room in which to store the larger-than-necessary boxes, bags, or cartons which hold the products. I then put the freed smaller inner items into a tupperware or other stackable container. It is truly amazing how much can fit in cupboards once out of the original containers! Waste, waste waste!
What is sad though, is to see the stack of the outer packaging after that is done, especially if done all at once after a large grocery trip. The saddest of this all to me is knowing that I alone can not change how companies package their products! Yet I can change the amount of outer packaging they use, and in turn I consume, by purchasing a larger amount of that product at one time.
If we ALL do just one or two things that are realistic for each of our individual lives, we can change the rate at which excess is consumed. This, in turn, will make a difference in the Climate Change of our planet.
Just an idea....What do you think can be done to help??
Now if ice cream could just be bought in the same way-- and FIT into the freezer!!
For more information on helping out the planet that sustains our lives, go to http://blogactionday.cmail2.com/t/y/l/ulirtd/tthlilod/b to see a list of all the bloggers that participated in today's subject, and there is bound to be something there that you find fits in with your life, and many ways to help the Climate Change slow down. There have been 150 COUNTRIES that have written about this in their blogs today!! Global Warming and the resulting Climate Change, is the most important of issues facing all of us today.
Gentle Hugs... <3
Monday, September 14, 2009
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
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
Monday, August 3, 2009
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.
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.
Gentle Hugs!! <3>
Monday, June 22, 2009
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
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
Thursday, June 11, 2009
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
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
Subscribe to:
Posts (Atom)
