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?

 

 

 

 

 

 

 

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.

When Will This Headache Stop?

A constant, one-sided headache that does not respond to any treatment and last for.weeks.to.months. It’s not a Migraine, in fact typical Migraine Medications make it worse. Guess what? I will save you the legwork because their is a condition and treatment for this debilitating chronic headache! It’s another “rare” diagnosis–because we are lucky like that 😂. There is also ONE treatment that works, and once you find out about it, you will appreciate it. Research is slowly coming out, the new “herbal” supplement is claimed as Melatonin, nope, melatonin did not work for me. Read on…

When Will This Headache Stop?

10 Warning Signs of a Primary Immunodeficiency (PI/CVID)

10 most “common” symptoms that present as symptoms of Primary Immunodeficiency (PI). PIs are complex and manifest differently, severely, and typically with unknown episodes/illnesses that are not as black and white as the warning signs. The warning signs listed are a good starting point for further evaluation.

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The following information displays the 10 most “common” symptoms that present as symptoms of Primary immunodeficiency (PI). Research tends to agree on these broad “symptoms”. PIs are complex and manifest differently, severely, and typically with unknown episodes/illnesses that are not as black and white as the “Warning Signs”. If one has any 2 of the 10 warning signs, follow-up with the specific blood work described below.

10-Warning-Signs—Illustrated–2-

10-Warning-Signs-2014-jfm
Primary-Immunodeficiencies—Know-the-Warning-Signs

Remember when stated, the 10 Warning Signs are not “black and white”? PIs are rare. Research is still in its infancy, and the Immune System is complex. I have witnessed children with debilitating arthritis and joint conditions, “strange” or “unknown” organ illnesses, enlarged spleens, heart and/or severe organ irregularities, and more. A PI is not a one size fits all. Neither are the comorbidities.
Comorbidites are the result (secondary or caused by) a Primary Immune Deficiency.
How can you confirm a PI? A simple blood test! The AAAI recommends, “An accurate diagnosis can be made through screening tests that measure immunoglobulin (IGg) levels or the number of B cells in the blood.”

I recommend saving (paper format) all serum testing, and filing in a safe place. The reason for saving previous serum or blood work, you can document decreases or increases, of the Immunoglobulin (IGg, IGa, IGm)or WBC (check the Albumin, Globulin, and the Ratios of A/G) of serum tests. This is especially true for children, as the immune system is not considered fully developed at younger ages. Which makes diagnosing a PI in young children more of a challenge. Even when children show definitive symptoms early in life. Another reason it’s nearly impossible to find IGg results 10 years later.
A PI is the umbrella diagnosis for all specific rare diseases that fall under the criteria of a PI. The second “umbrella diagnosis” under PI is Common Variable Immune Deficiency (CVID). CVID symptoms vary widely, and is less understood (as most PIs). The CVID diagnosis is confirmed if the IGg levels are significantly decreased in either IGg and IGa, OR IGg and IGm.

Further serum and clinical testing will involve what is called a, “Vaccine Challenge”. If the “Vaccine Challenge” confirms the inability for the person to create “memory” (B) cells to previous vaccinations, the diagnosis may be CVID. There may be other PI deficiencies, or genetic defects interacting, in addition to CVID diagnosis.

The rarity of a specific PI, or CVID, and diagnosing by medical professionals remains a challenge. Many physicians never see patients with CVID, and are unaware of the disease. It’s imperative to seek a Clinical Immunologist that is familiar with CVID or PIs if the IGg results are abnormal. You can request the immunoglobulin blood work at a primary doctor (get a copy!.

Posted below you will find reference points, of testing, to discuss with your primary/preferred physician.

Physician-Algorithm

When to Consider a PI in .pdf format for (Specialists):
Diagnostic-Algorithm-for-Specialty-Care-Physicians

If one is ultimately diagnosed with a PI, A patients decision of specialists, is a personal, private decision. The decisions involve many factors; Knowledge of the specialists, geographic location, experience, insurance, and your personal preferences.
I do NOT recommend sourcing any specialist from any one entity.

AAAI_1

AAAAI_2

*Disclosure: I am not a medical physician, nor pretend to be one. Consult with a medical physician with any questions, professional knowledge, follow-up and/or advice.

Attributions:
American Academy of Allergy Asthma and Allergy (AAAAI): https://www.aaaai.org/
JMF: http://www.info4pi.org/library/educational-materials/educational-books

***I do NOT endorse, am not employed, and have zero affiliation with the sources of the information presented. The pictorial information are public resources that helps the reader to understand basic warning signs of a PI.