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

D-Day 2 #AHCA Senate Version: No Treatment for PREEXISTING CONDITIONS

Built into the ACA are specific protections for those with chronic illness. Called, Essential Health Benefits (EHBs). EHBs will be denied by states that accept the waivers. Treatment of chronic illness will no longer be covered. As I have stated repeatedly that EHBs includes treatment of chronic illness, and a wealth of patient protections such as prescription medications, labs, hospitalization and more. The Republicans are demanding a death spiral.

SENATE HEALTHCARE BILL RELEASED 06/23/17: HERE

UPDATE SENATE #AHCA KILLS PREEXISTING CONDITIONS WITH THERE OLD GAMES OF SMOKE SCREENS??▶️The preliminary reports have disclosed the Senate #ACHA Version as briefed as of 06/21/17. However, do not be fooled with their version.

As of 06/21/17, reports of the Senate #AHCA are:
–Senate gives greater flexibility to the ACA’s existing state waivers, and expedites their approval. The ACA laid out strict conditions for what the waivers could do, and the GOP bill would loosen these — which could be a different means to the same end (as passed by Congress)
**What would be waivable:**
**Essential Health Benefits (EHBs)
**
Actuarial value, or the need that plans cover a certain percentage of an enrollee’s health care costs
—The definition of a quality health plan

THE CLINCHER:
Not the ban on charging sick people higher premiums than healthy people, nor the need that insurers sell plans to people with pre-existing conditions, according to AXIO and the Washington Post Video of McConnell (06/21/17).

The above paragraph seems to imply that charging higher premiums to those who are sick, than healthy people is not included in Senates version. As slick as they think they are, it sounds great on paper, doesn’t it? Well, it’s not. It is still murder.
HOW?
Senate grants states the ability to waive EHBs. Sure, insurers will sell plans to a sick person. THEY WONT TREAT THE CHRONICALLY ILL.
WHY?
Built into the ACA are specific protections for those with chronic illness. Called, Essential Health Benefits (EHBs). EHBs will be denied by states that accept the waivers. Treatment of chronic illness will no longer be covered. As I have stated repeatedly that EHBs includes treatment of chronic illness, and a wealth of patient protections such as prescription medications, labs, hospitalization and more. The Republicans are demanding a death spiral.

This proposed Senate Version is STILL a death sentence to people who suffer chronic illnesses, and rely on life saving medications. The following is what is now covered under EHBs. These protections will no longer be available, including treatment of chronic illnesses. I have also updated the documents section with the full text law. Located HERE.

Patient Protection and Affordable Care Act’’.
1/2

Patient Protection and Affordable Care Act’’.
[caption id="attachment_24102" align="alignnone" width="840"] Brief Peak of #AHCA Senate Version 06/21/17
Attribution: Andy Slavitt

Attribution:
https://www.axios.com/what-we-know-about-the-gop-senate-health-bill-2445712499.html;
Twitter handle: @aslavitt

IN 4 Days: Skin on Elbow and Hand was Dead

In 4 days what first looked like a minor scrape, was a crater, quadrupled in size, the flesh from elbow and hand dead. The bacteria entered directly through skin, no entrance via cut, bug bite, scratch and spread rapidly

[contact-field label="Name" type="name" required="true"/][contact-field label="Email" type="email" required="true"/][contact-field label="Website" type="url"/][contact-field label="”Message”" type="”</p>" <p><strong>UPDATED /> What you see below may not be cellulitis. As I’ve been told by a trusted specialist that’s cellulitis does not continue to re occur in the same place. I have battled this excruciating condition since late May. I do not know what it is, it continues to reappear in the same locations, extremely painful, and as you can see is very rapid. I’ve been on several antibiotics since May and I continue to get these /> If anyone has experienced such, please help me to figure this out.</p> <p>As a person with a Primary Immune (PI)deficiency I am pretty “anal” about /> A germapobe, I am. Long before the PI diagnosis: I go out of my way to avoid any contaminates. Which is why the following story has me questioning: Where and how did I contract a skin eating bacteria.</p> <p>Four days ago, I mentioned to my son, “my elbow was really hurting”. A weird statement for me. As I endure a lot more pain than what appeared As a scrape on my elbow. </p> <p>The pain had bothered me for a while, I ignored it. When leaning on a hard surface I cradled my elbow with my palm. My son, had mentioned, “Yes, the small scrapes seem to hurt the most”. I agreed. A bit later, he said, “Mom, that does not look like a scrape”. </p> <p>Although, it was a small red area on the bony part of my elbow, I was unable to see it. So, he snapped a picture. Enlarging the pictures he said, “this looks like pieces of glass”. Indeed, I surprised myself how odd this “scratch” appeared. Maybe a form of psoriasis or /> [caption id="attachment_9271" align="aligncenter" width="768"/] That’s one weird scratch[/caption]


I then notice a slight irritation on my palm and finger. Weird. I applied some topical medication, and bandaged my elbow and hand and went to bed.

Day 2:
Removing the bandages. My little photographer was the first to see if this, “scrape” was improving. I was curious if it was at least scabbing. As the pain was pretty intense. The photos show no scabbing, but indentations. My concern began to mount. As my IGg levels are decreasing, I’m very susceptible to all bacteria, viruses, fungus. I’ve limited all activities, realizing that I am prone to serious infections. No scabbing, and complete change in appearance, concerns me.

The once broken glass appearance was now a sunken indentation.

The life-long patient that I am, I began researching what the heck this was. My husband, just realizing the situation, thought a possible spider bite. We ran through so many scenarios. He, and my kids suggested to go to the doctor. Absolutely NOT. As a chronic patient, going to the doctor exposes me to many more germs. As well, I have , learned how to take care of various illnesses. It’s exhausting explaining CVID to the medical field. Risking get very ill, and going in for a strange “painful-scrape-turned-glass-turned-crater” was not what I had the energy for. After researching for hours on dermatology, skin infections, insect or spider bites. There was not any connection.

Day 3:
The bandage pulled off, and the look on my child’s face was worrisome. I asked, really hoping, “does it look better”? The reply, “Mom go wash it off, looks like some cream is on it”
I did. I could see some type of transparent film covering the area. Thinking it was padding from the gauze. Ummmm, no. It was the skin.

Day 4: The Skin sloughing grew larger, peeling off layers as I took off the protective covering. I decided, I need medical advice.

*The Diagnosis: Cellulitis
*My Case: It is not unusual that I have complications that are not technically diagnosable. Again, I have a rare disease, and research is limited. My manifestations are certainly a concern. Although, typically persons contract Cellultis on their feet or legs. The bacteria travel through an open cut or bite. I had neither. Especially, the palm of my hand. The bacteria were able to infiltrate the layers of my skin without an actual entry point, as those with cellulitis contract it.
*Complications: The bacteria may travel to lymph nodes and into the bloodstream. This can lead to a blood infection or permanently damage lymph vessels, which are part of your immune system. Other complications can also develop. – See more at: https://www.aad.org/public/diseases/rashes/cellulitis#sthash.f0BhLYBR.dpuf
Causes: cellulitis is caused by two types of bacteria:
Streptococcus and staphylococcus
*Staphylococcus aureus is the most dangerous of all the many common Staphylococcus bacteria.
Causing the antibiotic resistant MRSA and Sepsis.
mrsa poster

Lesson Learned: For myself, family and others. Staph naturally lives in most people’s nose, and other body parts. If you blow your nose, etc., and touch any open access point (cut, blister, dry skin). The staph is then introduced into your body, potentially creating the above case. Keep all open wounds covered with an antibiotic cream and bandaged until scabbed over. Wash your hands frequently!
Don’t Open the Door to Germs

Tomorrow is Day 5: I have begun the antibiotic regime, and care of the site. If all goes well, This crater will heal. If it does not I will have intravenous antibiotics.

Having any Problems with a Specialty Pharmacy (or otherwise) and on Medicare? Are they demanding payment, supplies, IGG, having you sign a form quaranteeing payment or anything related to an SCIG Infusion? Re: immunoglobulin replacement therapy (IGG) via subcutaneous (SCIG)

difficulties related to billing, supplies, medications, or more, in regard to replacement immunoglobulin therapy

Report any problems if you are On Medicare with a rare disease, need immunoglobulin replacement therapy, igg via subcutaneous (scig)
Report any problems if you are On Medicare with a rare disease, need immunoglobulin replacement therapy, igg via subcutaneous (scig) click on the link below ⬇️⬇️

If experiencing any difficulties related to billing, supplies, medications, or more, in regard to replacement immunoglobulin therapy. Report the difficulty below

Source: Having any Problems with a Specialty Pharmacy (or otherwise)? With demand of payment, supplies, IGG, or anything related to an SCIG Infusion?