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.
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.
v. To collapse inward violently.
v. To cause to collapse inward violently.
v. To demolish (a building) by causing to collapse inward.
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?
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.
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.
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.
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 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.
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.
I happened upon a site today, and “rediscovered” this diagnosis. Say, what—-Hypogamma-globulinemia, think that we have almost every letter in the alphabet in that diagnosis. It was the beginning of the CVID diagnosis. I remember that I could not even pronounce the word. Moving onto Invisible Illness: Sjornes diagnosis, and recruiting patients for the aftermath of #AHCA to unite in order to survive.
Originally Published: 10/16; New Updates
Say, what—-Hypogamma-globulinemia, I think that we have almost every letter in the alphabet in that diagnosis. I happened upon a site today, and “rediscovered” this diagnosis. It was the beginning of the CVID diagnosis. I remember that I could not even pronounce the word. I can now, on rare occasions anyway.
I recently received my results for Sjornes disease, and I do not show any antibodies for Sjornes, but I have all of the symptoms. I do wonder if the Sjornes markers are accurate, as I receive tens of thousands of antibodies weekly. Sjornes is an antibody marker tool for diagnosis. Prior research (peer reviewed only) state 70% of people are diagnosed through the antibody and markers for Sjornes. Well, I know dog gone well, I’m so rare I certainly won’t show positive on those tests! Doc does suspect my symptoms may be due to another rare disease, but he stated that it’s also difficult to diagnose. As well, as adding another specialist to my team. We will see.
***Update 6/2017: Sjornes Disease, an autoimmune disease, is in fact, a co-morbidity of a PI. My IGg (Immune system cells) levels have been decreasing and are well below ‘norms” with my current infusions. The IGg Infusions dosage has increased as a result, although still waiting on approval from insurance. According to the specialists, it seems that the CVID (PI) is progressing. Which is NOT what I wanted to hear. After a load of additional testing to rule out other means of IGg loss. The conclusion of IGg levels decreasing, despite IGg replacement therapy, is the “progression of the disease”. It makes complete sense that Sjornes has developed. Of course, my medical team has been treating all of the symptoms that are characteristic of this disease for years. I am not sure, what, if any treatment will be available, other than symptomatic relief. The morale here to others suffering, pay close attention to your body. I knew there was something else going on, although a vague marker test, was inconclusive. The fact that my IGg levels were declining, was a clear indicator that my immune system is now attacking itself in another, severe manner.
Originally Published: 10/16; New Updates:
Update: revamping my blog, it has been extremely difficult due to my eyes, vision and sandpaper feeling due to not making my own tears…hard to focus on anything.
The menu items are difficult, if not impossible, to move on most of WP themes. I know it’s confusing, I created this a year ago, as a personal journey, and don’t want to lose what I do have. As soon as I can tidy up, and make security changes, I will begin development of the PiPatients United (PiPUnited).
If anyone is interested a VERY rough draft of what is envisioned; a general interest link will be posted on THIS Blog, for a brief amount of time, with information on how to submit any interest. Keep an eye on this blog, the initial “rough draft proposal” will be released here, on this blog as a link, on Thursday (approximately) for a limited amount of time, one week. This is due to privacy issues, and the need to gather interest, and move forward. Any responses that I receive will be followed up with, through a secure and private means. Again, any current volunteers for any other non transparent organizations will not be permitted to be involved. PiP United’s sole focus is inclusive of PI patients and those with Invisible Illness and caregivers with intent to aid our fellow peers. We will not be bound by any political or otherwise “rules” that ultimately decrease the quality of life for our PI and II peers. Our focus is patients helping patients in whatever capacity is needed and/or available.
Update 6/17: Still open to other individuals who are interested in building a community to help each other, regarding any and everything (gathering resources, supplies, etc) that we as patients will need due to upcoming #AHCA and the potential aftermath will leave many without medication, etc. Note: I was able to forsee the upcoming chaos in October, when this posted. Since that time, it is evident that I was correct. It was not a guess, I knew that several entities had betrayed many patients, and were doing so for personal profit. I hate that I was correct. I was, and this mission, to save lives, is needed now more than ever.