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.
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 😉
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…
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.