The title of the blog may be a bit understated, but I felt like I had to put something in that space, and since I'm getting to know quite a few new people here online who have seen me mention my medical issues in passing, I thought I would elaborate here so all of you would know more about what my struggles are. There is quite a bit going on and I can't promise not to overwhelm you. If you know me, you know my habit of using 500 words when 50 will do, lol!
The main problem is a degenerative disease in my spine for the last 20 years that results in a whole host of other maladies such as spondylosis, spinal stenosis, radiculopathy (just to name a few) those are all just fancy medical terms for severe pain in my neck and weakness in my arms.
With the disc deterioration in my neck putting my spinal cord in jeopardy, I had to have an emergency double cervical fusion in 2003 complete with a bone graft taken from my hip. I was in the hospital for almost 3 weeks, followed up by 6 weeks of inpatient physical therapy and rehabilitation.
In 2016, throw in another cervical fusion, I now have a triple cervical fusion. I did experience some pain relief but not for long. Then, at the very beginning of 2017, I caught a terrible cold. Coupled with an autoimmune disease, a typical cold for a healthy person is one thing... the cold that I had lasted almost 3 months. As you can imagine, coughing and sneezing left my neck completely wrecked. It felt like whip lash every time I time I sneezed or coughed.
With all of this exacerbating my neck and ramping up the pain, during that time, I had 3 rounds of trigger point injections in January, February, and March. Usually ONE round would help me regain some control over the pain. No positive results from any of those shots only made the situation more stressful because surgery was being discussed again.
Fortunately, there was one more thing the doctor could do before putting me through another set of painful tests to determine if surgery was needed again.
A sedated cervical epidural in the late spring of last year was productive for my pain management, also helping me regain the use of my right arm. Slowly but surely I began to bounce back. However, after nearly eight months of being bedridden it was a tough climb uphill, again. Always climbing. Always.
And of course there are a couple of more curve balls to throw in before this note is complete because just wait.. THERE'S MORE! Whaaat?! Yup. I also deal with chronic migraines. In addition to that, in 2013, out of the blue my ribs began hurting, all of the time. You can read that in my short blog here Don't Say Goodbye, Please Just Leave.
There have been so many of you who have reached out to me over social media and I have been truly moved by the concern, support, and encouragement. You each in your own way have helped me and you may not even realize it!
Unfortunately, at the end of November I learned that 2 of the medications I rely on daily to keep my pain at a manageable level and allow me to function will no longer be accessible to me because my insurance company no longer covers them.
*Also JUST learned today, a medications for my asthma is also no longer affordable and I'm out of that over the weekend.
These decisions by my insurance company came with no warning. When I took my concerns to my doctors they were equally as angry and frustrated to learn that a life changing treatment plan that had been working was arbitrarily halted with no explanation.
I have been struggling to cope with what this means for my future.
I realized that in that moment, the light I thought I had been seeing at the end of the tunnel was really a freight train headed directly toward me.
With the disc deterioration in my neck putting my spinal cord in jeopardy, I had to have an emergency double cervical fusion in 2003 complete with a bone graft taken from my hip. I was in the hospital for almost 3 weeks, followed up by 6 weeks of inpatient physical therapy and rehabilitation.
In 2016, throw in another cervical fusion, I now have a triple cervical fusion. I did experience some pain relief but not for long. Then, at the very beginning of 2017, I caught a terrible cold. Coupled with an autoimmune disease, a typical cold for a healthy person is one thing... the cold that I had lasted almost 3 months. As you can imagine, coughing and sneezing left my neck completely wrecked. It felt like whip lash every time I time I sneezed or coughed.
With all of this exacerbating my neck and ramping up the pain, during that time, I had 3 rounds of trigger point injections in January, February, and March. Usually ONE round would help me regain some control over the pain. No positive results from any of those shots only made the situation more stressful because surgery was being discussed again.
Fortunately, there was one more thing the doctor could do before putting me through another set of painful tests to determine if surgery was needed again.
A sedated cervical epidural in the late spring of last year was productive for my pain management, also helping me regain the use of my right arm. Slowly but surely I began to bounce back. However, after nearly eight months of being bedridden it was a tough climb uphill, again. Always climbing. Always.
And of course there are a couple of more curve balls to throw in before this note is complete because just wait.. THERE'S MORE! Whaaat?! Yup. I also deal with chronic migraines. In addition to that, in 2013, out of the blue my ribs began hurting, all of the time. You can read that in my short blog here Don't Say Goodbye, Please Just Leave.
There have been so many of you who have reached out to me over social media and I have been truly moved by the concern, support, and encouragement. You each in your own way have helped me and you may not even realize it!
Unfortunately, at the end of November I learned that 2 of the medications I rely on daily to keep my pain at a manageable level and allow me to function will no longer be accessible to me because my insurance company no longer covers them.
*Also JUST learned today, a medications for my asthma is also no longer affordable and I'm out of that over the weekend.
These decisions by my insurance company came with no warning. When I took my concerns to my doctors they were equally as angry and frustrated to learn that a life changing treatment plan that had been working was arbitrarily halted with no explanation.
I have been struggling to cope with what this means for my future.
I realized that in that moment, the light I thought I had been seeing at the end of the tunnel was really a freight train headed directly toward me.
I shed tears with more to follow, not just for what might be coming but for what I have already survived. How could that not have been enough? I am stronger for my pain and scars, but I would like it to be determined that I am finally strong enough.
Feeling powerless to change this unwanted dose of cruel reality and needing time to process it, I felt that sharing this devastating news with one of my trusted friends would provide some emotional support. Because that's always helpful, right?!
After some discussion and questions that included me admitting how scared I was, the response from my friend was… “It could be worse."
I felt insane after hearing that trite, lackadaisical response. In my silent insanity, I was also instructed to “be happy and positive.” Being happy and positive is something I do well, but after learning this news only a few hours before, there was no way to flip the switch that quickly. I am allowed to be pissed off at something that affects my life.
After that, I didn't want to reach out anymore; then it occurred to me I would only be keeping myself from benefiting from one of the strongest tools for healing that was only a post and/or text away; the support of friends.
Even though I still want to rail at the universe that I have already earned this damned warrior medal, I decided to start trying to cope with the uncertainty the best way I knew how, by starting small and doing the little things: tuning out by watching movies and shows; playing a game that I am way too into; moving on to reading my favorite quotes; listening to my favorite music; and, finally reaching out again.
As I did, I lost a few more people who didn’t know what to say -- so much so that they've completely stopped communicating with me – but I realized the failure was theirs, not mine. Their inability to have compassion was not my problem.
In my mind I know I have so much to be thankful for. Even though my heart isn't quite in it yet, I'm still making an effort to be thankful for each moment. It's up to me to work at this, to shake the fear off and beat back the worry.
Every day I wake up to challenges.
I will continue to face them with as much grace, courage, and humor as I can muster.
I will keep those people who’ve shown that they love me close to me and
I will excuse those who fail at friendship from my life.
Each day, I remember that life can change in a heartbeat, for the better and for the worse, and that regardless of how hard I work, pray, or plan, I am promised nothing.
I don't know what not having access to medication will mean for my future.
I am scared, but I am determined. I have the ability to go into this with a good, albeit tentative attitude.
If you have extra juju, good vibes, or prayers please send them my way. There are still decisions to be made that are not in my control and each day that passes I move closer to the day my meds run out.
And I will always try to remember: "The lotus flower blooms most beautifully in the deepest and thickest mud."
You can see photos of my Xray (here) as I didn't want to surprise anyone with my super bionic-ness.
Thanks for reading all of this, there was alot to say. I'll be TRYING to update more regularly as the saga continues! BAM.
Feeling powerless to change this unwanted dose of cruel reality and needing time to process it, I felt that sharing this devastating news with one of my trusted friends would provide some emotional support. Because that's always helpful, right?!
After some discussion and questions that included me admitting how scared I was, the response from my friend was… “It could be worse."
I felt insane after hearing that trite, lackadaisical response. In my silent insanity, I was also instructed to “be happy and positive.” Being happy and positive is something I do well, but after learning this news only a few hours before, there was no way to flip the switch that quickly. I am allowed to be pissed off at something that affects my life.
After that, I didn't want to reach out anymore; then it occurred to me I would only be keeping myself from benefiting from one of the strongest tools for healing that was only a post and/or text away; the support of friends.
Even though I still want to rail at the universe that I have already earned this damned warrior medal, I decided to start trying to cope with the uncertainty the best way I knew how, by starting small and doing the little things: tuning out by watching movies and shows; playing a game that I am way too into; moving on to reading my favorite quotes; listening to my favorite music; and, finally reaching out again.
As I did, I lost a few more people who didn’t know what to say -- so much so that they've completely stopped communicating with me – but I realized the failure was theirs, not mine. Their inability to have compassion was not my problem.
In my mind I know I have so much to be thankful for. Even though my heart isn't quite in it yet, I'm still making an effort to be thankful for each moment. It's up to me to work at this, to shake the fear off and beat back the worry.
Every day I wake up to challenges.
I will continue to face them with as much grace, courage, and humor as I can muster.
I will keep those people who’ve shown that they love me close to me and
I will excuse those who fail at friendship from my life.
Each day, I remember that life can change in a heartbeat, for the better and for the worse, and that regardless of how hard I work, pray, or plan, I am promised nothing.
I don't know what not having access to medication will mean for my future.
I am scared, but I am determined. I have the ability to go into this with a good, albeit tentative attitude.
If you have extra juju, good vibes, or prayers please send them my way. There are still decisions to be made that are not in my control and each day that passes I move closer to the day my meds run out.
And I will always try to remember: "The lotus flower blooms most beautifully in the deepest and thickest mud."
You can see photos of my Xray (here) as I didn't want to surprise anyone with my super bionic-ness.
Thanks for reading all of this, there was alot to say. I'll be TRYING to update more regularly as the saga continues! BAM.
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