The Better of Two Evils: Chronic Pain or Deadly Infection?

What would you do?

Another chapter in my book of life is either beginning, or ending. I began this “blog” as a journal……and the drama, trauma, dreams and love continue to write out my journey in this body.

I am aging fast. I am pale. Dark circles under my eyes. I am sad at who I see in the reflection of the mirror. Or is this person in the reflection a result of debilitating pain that does not stop?

OR am I? I have suffered CHRONIC back pain for several years. I cannot believe that I have let it go this long. In the past I have tried searching for answers, and that was a futile attempt. Add to that I am stubborn, and medicine has failed me in the past.

Spinal Nerve FunctionThe pain is in my upper (thoracic) back, on one side only, and is wrapping around to the front torso of my body. The pain has become so severe that I am bed bound most of the time. Sitting, standing, any activity crushes me with such pain that I simply cannot live the half-a-life that I had before. I have lost sensation in my back. I am losing muscle mass and strength in my arm, coordination in my wrist. I began to wonder if I had pancreatitis, or gallstones, or something that was causing piercing mind bending pain as the back pain has made its way to my torso. Desperate, I finally made an appointment with a provider.

I just wanted the pain to stop. I could not wait to see this doctor, hoping he could help. Sadly, he looked up at me, while I was sitting awkwardly on the table, unable to rid myself of the pain.  He said he had a few patients with these presenting symptoms, and he stopped mid sentence…looked me in the eye, and looked down. It was disheartening as I heard the words I have heard so many times before. He continued, “the presenting symptoms, location of the vertebrates, nerve root compression and resulting chronic pain are not curable or treatable.  It’s rare to have spinal compression in this part of the thoracic spine, and there is not a doctor that will do such a surgery.  He added he would not even consider a nerve block, and due to the CVID/PI I cannot have the steroid shots.”

At the moment, I cannot confirm diagnosis until further tests are completed. I will have a very long MRI tomorrow, and will attempt aquatic physical therapy.

That’s a problem, I cannot get in a public pool of water, or the skin conditions I have return. Of which I am still fighting open wounds on my fingers.  What is the better of the two evils? I cannot take this pain another day, I will try the aquatic therapy and pray the pain lessons. Until then, I am  not current on my IGg due to insurance and specialty pharmacy changes. I’m putting myself at more risk of infection in this pool.

I try not to let those close to me know how horribly I hurt. How I haven’t been able to stand-up to do dishes, cook a meal, laundry, even getting up to get dressed hurts. I cannot continue to live in this amount of pain, bed ridden all the time. Its not fair to my family. The deterioration of my health, and my ill appearance. I wonder, how much does this rapid deterioration have to do with being in chronic pain all the time, and getting worse, hourly?

Hope I will be able to give an update of  a confirmed diagnosis, and prayerfully a treatment. Another chapter beginning or ending? That is the question.

What Would You Do?

pexels-photo-269141

2019 Update…Anyone Out There? — Update

Its January, where does the time go? Its been quite some time since I took a peek at my site. I knew I posted the full text of the ACA awhile back. Of course, I need to research the medical and humane rights the ACA gives those of us with a chronic illness. Especially, this time of year. Insurance changes, special pharmacy changes, and I am at a stand-still with the red-tape so glorified by the scum that chose profit over patient.

((rant follows))

I have fought and presented facts for years. It sickened me as to the reality of what the US is about. In its entirety, regarding the whole subject matter of my site. I guess that is why I don’t visit or write on the site that I have self funded for quite some time.

I have been in denial, I guess I still am. I detest the label, “chronic illness”, having to explain why and what I have. Heck, I don’t even like the ‘zebra’ for that matter.

At one time, right after diagnosis, and meeting others like me; I felt like I finally had a community that I could relate to. Heck, after a lifetime of being different, it was a long-awaited belonging. Until the inevitable happened. My “dignified-righteousness” screwed that up to. I made the conscious decision that I would not, and could not, support or befriend others who put profit over human life. That was two years ago.

Here I am, alone. This year, has been another hard year on my health. I wont bore anyone with that.

Have you ever just stopped caring about your ‘condition’? Deny it to everyone? Downplay it to those closest to you? Just plain don’t care anymore? I deny to myself that I have CVID. Heck, according to specific mutations, I guess I can justify that, too. Just add SCIDs to the mix. I just don’t say that out loud. No matter how I cut it, when I do not get the meds (IGg) my levels plummet.

I am to the point where I am tired of not being able to live any type of life that I want. Tired of being held back by this so-called diagnosis that is a battle just to get the meds., This is a serious money making business for big pharma and on down the pipes. Confuzzled, as my kids say.

Oh well, no matter how one views another, always remember everyone has their own battles. I just happened to put my “at the moment + 2 years” for the world to see. No one reads this blog, so I am okay with that. I just wonder how abnormal I am, hah! Pretty abnormal that’s for sure. That is why I am a ebra.
Until next time and I hope its not a year 😉