Invisible Illness: Imploding From The Inside Out

Life seems to become more of a battle and you feel your losing control. Unable to do half of what you did a few years ago.

Life seems to become more of a battle and you feel your losing control. Unable to do half of what you did a few years ago. The weight of an “Invisible Illnesses” is now gaining more of your life, and its taking to much from you. We, who battle Invisible Illnesses, invest more than committing to daily routines. Over a prolonged period of time, each exertion of physical, mental, or emotional energy, is a trade-off for the internal physical damage to our body.

 

Have you kept up with the demands of “life” nonstop?  Internally aging significantly faster than your friends or peers?  Do you feel like you don’t have a lick of energy for anyone or anything?

Other than basic survival mode?

Sometimes, more often than not, I have those days, weeks, and months. Am I the only one that feels this way? Is it sporadic for some? Constant for others? Or not at all?

Are you still in the “conquering mode”? In other words, “pushing forward” to maintain the constant responsibilities of life;  taking care of the spouse, kids, or parents, the bills, the extended families, the job, the meals, the shopping, the juggling act so many of us find ourselves in. Then of course, the endless last minute “triggers” that seem to derail even the most well-thought out plans or schedules.  Not to mention the extra time and energy of juggling medications, physician appointments, testing and the list is endless.

Quadruple these daily stressors and events that even the healthiest among us can manage.  Eventually, do you find yourself running out of steam and energy faster? Stressors mounting, forgetting or missing appointments…you may know what I am talking about.

Autoimmune
Immune related illnesses, called Autoimmune Diseases or Invisible Illnesses

In essence, I am touching upon the SPOON THEORY. Expanding upon it, and the consequences of the body, eventually imploding earlier than those without an Invisible Illness. Could it be because of the extended stressors when living with an Invisible Illness?

Could the organs have aged faster, due to fighting external stimuli more than our peers?
Do you feel 80 or 90 years old? Yet, your half that age? I am sure if one reads this far… they may be thinking, not me-or yes me! The not-me‘s: I am not defined by my Illness; I also believed the same (and still do at times). The yes-me‘s: spot on.

Defining Implode:

v.  To collapse inward violently.
v.  To cause to collapse inward violently.
v.  To demolish (a building) by causing to collapse inward.

Burden of Pain

 

What helps you pace or balance the needs of life:  while the weight of your illness feels as if you are slowed to a snails pace?

 

How do others manage this delicate and serious slippery-slope? What tips can you share that makes living more manageable and productive when living with an Invisible Illness?

 

 

 

 

 

 

 

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

Think Sepsis. Time Matters.

September is Sepsis Awareness Month. Get Ahead of Sepsis is a national effort to improve sepsis early suspicion and recognition and timely treatment, as well as prevent infections that could lead to sepsis.

SEPSIS.

September is Sepsis Awareness Month. A topic close to me, as I lost a close family member last October due to Sepsis. She went into the hospital for an unrelated and non-emergency medical procedure. She died two weeks later, in the hospital from Sepsis.

Although, the CDC states that Sepsis begins outside of the hospital for nearly 80% of patients. A CDC evaluation found 7 in 10 patients with sepsis had recently used health care services or had chronic diseases requiring frequent medical care.

Four types of infections are most often associated with sepsis: lung, urinary tract, skin, and gut.

-CDC

Sepsis
Protect Yourself From Sepsis
Sepsis
Be Informed about Sepsis
Sepsis
Protect Yourself and Your Family From Sepsis

Attribution: www.cdc.gov

Did You Know?

Now you know! What’s the difference!? A lot, mainly A PI is primary, meaning born with it. HIV is acquired (contagious) after birth. Except when a HIV positive parent passes along the HIV virus to the fetus. It’s still HIV not a PI. Serum testing can confirm

Only available to subscribers! Launch of PI Patient Piracy e-Book Coming Soon.
 Pi is not HIV or AIDS
Now you know! What’s the difference!? A lot, mainly A PI is primary, meaning born with it. HIV is acquired (contagious) after birth. Except when a HIV positive parent passes along the HIV virus to the fetus. It’s still HIV not a PI. Serum testing can confirm.

Autoimmune Disease Informational Graphics

Informative graphics of general autoimmune disease and symptoms known as invisible illnesses. Invisible because outwardly we “Don’t Look Sick”. Oh my, please think before you tell a person suffering internally they don’t look sick. It’s not really a compliment.

Informative graphics of general autoimmune disease and symptoms known as invisible illnesses. Invisible because outwardly we “Don’t Look Sick”. Oh my, please think before you tell a person suffering that they, don’t look sick. It’s not really a compliment.