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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?

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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 😉

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How Thoroughly are Plasma Donors Screened?

Have you ever visited a Plasma collection facility? Have you heard the screaming ads on media of payments of up to $300 USD for 5 Plasma visits? I have been to a few local Plasma collection centers. As well, I am aware of the lack of consistent drug testing and thourough screening of donors.
Patients need the IGg to survive. However the IGg is harvested from millions of donors that (mostly) have underlying addictions, diseases, and blood born contamination that can harm or kill us. A new study points to evidence that patients receiving IGg infusions via subcutaneous AKA SCIG routes are developing new allergies from the IGe in the final Infusion-ready product of Immunogobulins (IGg) derived from DONOR ALLERGIES.

Have you ever visited a Plasma collection facility? Have you heard the screaming ads on media of payments of up to $300 USD for 5 plasma donations? I have been to a few local Plasma collection centers. As well, I am aware of the lack of consistent drug tests and thorough screenings of donors. It is quite scary.

Plasma is the white liquid of blood. Contained within the plasma are B Cells, or White Blood Cells (WBC). The B cells are the bodies immune system. The B and T cells, through a complex interaction, seek out and destroy bacteria, fungi, and viruses and protect the body.

Complex interaction of the human immune system, immunoglobulins seek out and destroy invaders.

There are specialized B cells, called “IMMUNOGLOBULINS”‘which are IGg, IGa, IGm, and IGe. Patients with CVID, or a Primary Immune Deficiency (PID) do not make any, or enough, IGG and are also deficient in either IGa or IGm (IGG is the main immunoglobulin derived from donor plasma). In order to survive, a patient wit CVID or a PID must infuse donor IGg, weekly via SCIG. Or every 3-4 weeks via IVIG for the rest of their lives. IGg cells die rather quickly, and patients must continue infusing for protection, and survival. The “normal” patients body will quickly replenish the IGG (plasma) donated or needed.

The lack of thorough screening of donors, leaves patients who rely on IGG in a dangerous and deadly game of roulette. Especially for myself, as I am on the receiving end of the IGg that is derived from the 1000s-10,000s donor IGg in one month alone.

INSIDE VIEW Of the machine that separates the red blood cells from the plasma (which is yellowish) and returns the red blood cells to the donor. The Plasma is separated and combined with tens of thousands of other donors plasma. The result is what are called: IMMUNOGLOBULINS (IGg, and smaller amounts of IGa AND IGe).

I’ve purposely avoided the Manufacturers product that has a lack of quality control of the individual Plasma donors.

Until a facility, recently opened in my state which is the manufacturer of my product. Last year, prior to the facility opening, I voiced my concerns, about the lack of donor screening. I was reassured the manufacturer (of my product) would have stringent guidelines on donor policies. To my utter amazement, shock and horror. A recent ad on Craigslist appeared, using the same schemes to get donors in the door.

Patients Concerns: Safety Protocol of Plasma Donors are laxed, or non-existent.

One can just imagine the blood born illnesses and diseases that can slip through the Plasma to IGg process. Ultimately, patients on the receiving end are really “rolling the dice”. We need the IGg to survive, however the IGg is harvested from millions of donors that (mostly, but not all) have underlying addictions, diseases, and blood born contamination that can harm or kill us.

As part of the extraction of Immunoglobulins (IGg; IGe), from the donor plasma, IGg has IGe, which is also infused into the patient. As a byproduct of the IGg Infusion, IGe is also infused by SCIG. IGe cells are the “cells” that contain individual donor ALLERGIES.
Patients, once with no history of specific and severe allergies, are now developing peanut and grass allergies (Zdziarski, P., et. al., 2017).

Hmm, if it’s that easy to develop new allergies from a byproduct of donor IGg, what else can the patient be contaminated with? A serious issue, not likely to be addressed by the manufacturers.

Be aware, if you do infuse biologicals via subcutaneous (SCIG) and develop a new allergy, the evidence points to lack of donor screening, and infusions of IGg.

https://aacijournal.biomedcentral.com/articles/10.1186/s13223-017-0213-x

Passive blood anaphylaxis: subcutaneous immunoglobulins are a cause of ongoing passive anaphylactic reaction. Zdziarski, P., Gamian A., Majda J., Korzeniowska-Kowal A. (2017). Allergy, Asthma & Clinical Immunology 13:41. Retrieved 11/08/17: https://aacijournal.biomedcentral.com/articles/10.1186/s13223-017-0213-x