I think I've adjusted to the changes that occur with this illness and the challenge of new symptoms almost everyday.
Last week I pushed myself a little too hard, I think. It can be a little difficult to tell when I'm blessed with the pain numbing gift of Dilaudid. Believe me, I'm not downing pain medication, not at all. If anything I wish we could find some consistent, dependable pain management for my constantly increasing pain, but right now we're still trying to find what works, what doesn't and what might.
Shortly after what I assume was overdoing it (ODI), perhaps a day or two later, a new limitation showed itself. A new limitation that totally changed things.
Everyday I walk my little Jack Russel Rennie. Usually we follow a regular route in the back of the apartment building where I live. I swear it's never been an issue, if anything it was nice way to wake up in the morning, break up my day, or to end what seemed like a long and endless, pain filled day. So I decided this time to take him to a different park and en-route I found myself having to sit four times, more than I've ever been required to do.
In the recent past I'd been able to walk that far with only one or two stops, but this time it was a mandatory four. I know it would have been even more if I'd given in to the pain and sat again. I made it back home, rested and the pain from the walk seemed to fade, leaving behind stiffness that I could live with as long as I didn't do too much.
The next day I did the typical normal morning walk with Rennie and when we were half way through I began to experience an excruciating pain in my low back and left hip. The path of pain felt like a nerve pinch sending what felt like an electrical shocks down to my foot, forcing my foot to turn inward. I was forced to rest for a quite a long time waiting for the pain to ease and I sat on a bench with Rennie at my feet, staring at me. I think he knew something was wrong.
As time passed I became strong enough to face the pain and walk to the building. As I walked I kept my eyes focused on the door, staring at it, feeling like it moved farther and farther away as I limped home suffering from severe pain in every step. I made it into the apartment door and walked straight to the safety of my bed, while dropping Rennie's leash to the floor and calling out to my Mother for help.
That was a moment of change. I didn't realize it then, but as my Mom removed my shoes the tears filled my eyes. I knew this would be another day of resting and trying to recover. Another day of my life lost to this disease while I became more and more fearful of walking too far on my own. I knew things where getting bad, but I didn't think it would get this bad. I guess I was in denial and still holding onto that small glimmer of hope. The hope of finding, or being offered a solution. I prayed that one day that remedy would come.
The following day, the day before my Grandsons 2nd birthday I endeavored out the door on a mission. I walked to the mall, a short 10 mins away, accompanied by my nephew and thankful that I wasn't alone. I made it into the mall with that now common and typical pain slowly building. I knew where I was going, knew what I wanted and didn't spend much time getting it and heading back out the door, but just as were were leaving the store the same pain as yesterday came on extremely strong. Once again I couldn't put pressure on my left leg without that electrical shock in my hip shooting down my leg and into my foot. I leaned on my strong nephews shoulder and limped to the door while every step increased the pain. We stopped near the exit and as I sat on the bench I downed some cold water, accompanied by my pills. We called for a taxi and every moment seemed like forever. Every single second of having to stand upright made the pain even more severe. I stared at the sidewalk wondering, "would it be too strange if I laid on the sidewalk and curled into a pain-filled ball?" Thankfully the Taxi appeared before I had to resort to such embarrassment and we were home within minutes.
Once again, just like the day before, I hobbled directly to my bed where my Mother once again removed my shoes and that's where I remained for most of that day. Another day of my life lost to this disease. The days I was losing were certainly mounting!
These experiences taught me a valuable lesson. A lesson I'd have to face eventually; I was time to get a walker. I needed something to rely on. Something to help me maintain whatever independence I could as these cysts took away my freedom while I wait for surgery.
This disease isn't just filled with pain or lost days. This disease is also filled with challenges and loneliness. It's a disease that can easily generate fear. Fear of being alone, fear of walking too far from home and also the fear for my future and how much more I could handle.
Now I'm more cautious of what I do that requires walking. Now I have one more thing to add to the long list of limitations and complications. Now I have one more thing to thank the cyst and the confused Ontario and Canadian medical system for. Thanks for taking one more thing I have always loved and making it a fear rather than the pleasure it had always been.
I know I'll mange, that's what I always do! I will not let this stop me from being me and I will not let this take away the things that make me, me.
The lessons we learn overtime are all we have to depend on. We have to keep moving forward, with and by whatever means necessary. Things may have to be modified, but it never has to end.
I do hope we can change this medical system in the future to help them understand that Tarlov Cysts are NOT an incidental finding! These Cysts are real, they cause real pain. They can change life and turn it from a learning journey into a never ending challenge.
I'm still learning, but I'm getting a little wary of the never ending challenges with no professional, medical support.
A GP really can only do so much.
Last week I pushed myself a little too hard, I think. It can be a little difficult to tell when I'm blessed with the pain numbing gift of Dilaudid. Believe me, I'm not downing pain medication, not at all. If anything I wish we could find some consistent, dependable pain management for my constantly increasing pain, but right now we're still trying to find what works, what doesn't and what might.
Shortly after what I assume was overdoing it (ODI), perhaps a day or two later, a new limitation showed itself. A new limitation that totally changed things.
Everyday I walk my little Jack Russel Rennie. Usually we follow a regular route in the back of the apartment building where I live. I swear it's never been an issue, if anything it was nice way to wake up in the morning, break up my day, or to end what seemed like a long and endless, pain filled day. So I decided this time to take him to a different park and en-route I found myself having to sit four times, more than I've ever been required to do.
In the recent past I'd been able to walk that far with only one or two stops, but this time it was a mandatory four. I know it would have been even more if I'd given in to the pain and sat again. I made it back home, rested and the pain from the walk seemed to fade, leaving behind stiffness that I could live with as long as I didn't do too much.
The next day I did the typical normal morning walk with Rennie and when we were half way through I began to experience an excruciating pain in my low back and left hip. The path of pain felt like a nerve pinch sending what felt like an electrical shocks down to my foot, forcing my foot to turn inward. I was forced to rest for a quite a long time waiting for the pain to ease and I sat on a bench with Rennie at my feet, staring at me. I think he knew something was wrong.
As time passed I became strong enough to face the pain and walk to the building. As I walked I kept my eyes focused on the door, staring at it, feeling like it moved farther and farther away as I limped home suffering from severe pain in every step. I made it into the apartment door and walked straight to the safety of my bed, while dropping Rennie's leash to the floor and calling out to my Mother for help.
That was a moment of change. I didn't realize it then, but as my Mom removed my shoes the tears filled my eyes. I knew this would be another day of resting and trying to recover. Another day of my life lost to this disease while I became more and more fearful of walking too far on my own. I knew things where getting bad, but I didn't think it would get this bad. I guess I was in denial and still holding onto that small glimmer of hope. The hope of finding, or being offered a solution. I prayed that one day that remedy would come.
The following day, the day before my Grandsons 2nd birthday I endeavored out the door on a mission. I walked to the mall, a short 10 mins away, accompanied by my nephew and thankful that I wasn't alone. I made it into the mall with that now common and typical pain slowly building. I knew where I was going, knew what I wanted and didn't spend much time getting it and heading back out the door, but just as were were leaving the store the same pain as yesterday came on extremely strong. Once again I couldn't put pressure on my left leg without that electrical shock in my hip shooting down my leg and into my foot. I leaned on my strong nephews shoulder and limped to the door while every step increased the pain. We stopped near the exit and as I sat on the bench I downed some cold water, accompanied by my pills. We called for a taxi and every moment seemed like forever. Every single second of having to stand upright made the pain even more severe. I stared at the sidewalk wondering, "would it be too strange if I laid on the sidewalk and curled into a pain-filled ball?" Thankfully the Taxi appeared before I had to resort to such embarrassment and we were home within minutes.
Once again, just like the day before, I hobbled directly to my bed where my Mother once again removed my shoes and that's where I remained for most of that day. Another day of my life lost to this disease. The days I was losing were certainly mounting!
These experiences taught me a valuable lesson. A lesson I'd have to face eventually; I was time to get a walker. I needed something to rely on. Something to help me maintain whatever independence I could as these cysts took away my freedom while I wait for surgery.
This disease isn't just filled with pain or lost days. This disease is also filled with challenges and loneliness. It's a disease that can easily generate fear. Fear of being alone, fear of walking too far from home and also the fear for my future and how much more I could handle.
Now I'm more cautious of what I do that requires walking. Now I have one more thing to add to the long list of limitations and complications. Now I have one more thing to thank the cyst and the confused Ontario and Canadian medical system for. Thanks for taking one more thing I have always loved and making it a fear rather than the pleasure it had always been.
I know I'll mange, that's what I always do! I will not let this stop me from being me and I will not let this take away the things that make me, me.
The lessons we learn overtime are all we have to depend on. We have to keep moving forward, with and by whatever means necessary. Things may have to be modified, but it never has to end.
I do hope we can change this medical system in the future to help them understand that Tarlov Cysts are NOT an incidental finding! These Cysts are real, they cause real pain. They can change life and turn it from a learning journey into a never ending challenge.
I'm still learning, but I'm getting a little wary of the never ending challenges with no professional, medical support.
A GP really can only do so much.
Bless your heart. I really understand because I could have been writing it myself. I AM SO TIRED OF THE PAIN. I had L-5, S-1 surgery about 5 years ago after a car accident and haven't been pain free since. I've been to a great pain mgmt doctor for the past 4 years and taking more meds than I like. Still - pain every day. I started using my walker for support last week. But, I'm hoping things are looking up because while in a pain induced rage, I found a WONDERFUL Chinese medicine practitioner who found the Tarlov cyst with the first treatment! He is treating another woman with a TC and she is showing much relief after 6 weeks of treatments of massage and herbs. For the first time in over 5 years, I am believing there will be help for me too.
ReplyDeleteHe has over 20 years of experience and after treatment none of his clients needed surgery. I know this sounds like grabbing at strings, but I'm BELIEVING.
None if my previous MRI's were below S-1 and last week when the pain mgmt doc felt lumps and did 4 trigger point injections, TC never was mentioned. He said to call if they didnt work and he would schedule more epidurals (which NEVER help) ....NO! NO more expensive "let's try again". No more medicine trial and error. When I called and asked to speak to him - he wasn't there. I asked if he could call me to discuss this the next day and was told that she would pass along the message. Needless to say, there was NO return call. Thats when I remembered seeing the sign for "Chinese Medicine Practice" and drove over and had my first treatment 3 hours later with his busy practice! Next appointment with pain mgmt, I will bring up TC and see what he says, but I REFUSE anymore talk about surgery, stimulators, morphine pumps. Now, its time to give MY thoughts and suggestions a try.
Thank you for being here to read. We all need someone who knows what we are going through on OUR side!