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.


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

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.
Senate grants states the ability to waive EHBs. Sure, insurers will sell plans to a sick person. THEY WONT TREAT THE CHRONICALLY ILL.
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’’.

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

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.

Common symptoms that go Undiagnosed for Decades

Common symptoms that may help answer your questions as to why your sick all the time

Illnesses, and symptoms, that I have experienced over the course of my life, pre and post diagnosis are briefly detailed here. I’m currently experiencing a horrible bout of chronic sinusitis, third course of antibiotics, and no end in site. Which is why I thought briefly detailing what seems to be common illnesses, may not be that “common” and if you experience the following, ask your doctor to run an immunoglobulin test its a simple blood test to see if your immune system is functioning correctly. Or contact the IDF for resources.

  1.  Chronic Sinusitis—takes longer to clear, does not clear in one course of antibiotics.  This is a big indicator that something is not *right*.  According to the latest statistics, “Prevalance of Sinusitis: Health care experts estimate that 37 million Americans are affected by sinusitis every year. Health care workers report 33 million cases of chronic sinusitis to the U.S. Centers for Disease Control and Prevention annually. (Source: excerpt from Sinusitis, NIAID Fact Sheet: NIAID)”

WHY is this important? Look at these numbers, 33 MILLION-cases a year, now, the patients are being treated, re treated, and continue to suffer DECADES, when they *may have an immune Defeciency, yet the patients are left to suffer, and are never informed there may be more to their Chronic Sinusitis.  I will touch more on this topic as the blog progresses.

2.  Bronchitis: NON smoker, or Smoker, wether brought on by a virus or bacteria, it always becomes a case of chronic bronchitis.  Symptoms include shortness of breath, especially with exertion, and a loose cough that produces large amount of phlegm or mucus, or deep cough without production of mucous  People with acute bronchitis may also have wheezing (a whistling sound made with breathing), *fever (some PI patients RARELY run fevers) fatigue, and chest tightness or pain that occurs with coughing. Inhalers, steroids, antibiotics are needed. Often the bronchitis cough lasts for weeks. There are many other symptoms, so please don’t rely on just these. If you tend to get bronchitis often, this may be an indicator of a poorly functioning immune system.

Prevalence of bronchitis Incidence (annual) of Acute Bronchitis: 4.6 per 100 (NHIS96: acute bronchitis); 14.2 million cases annually.  14.2 MILLION cases annually, again of this huge number, how many people are going misdiagnosed and or undiagnosed due to medical ignorance in the field of immune Defeciencies.

3. Ear Infections:  Also extremely common with those with immune systems that are not working properly.

4.  Pneumonia:  Many people with an immune Defeciency suffer from Pneumonia, and require invasive treatment to get well. Sending an immune compromised patient home with an antibiotic, will only land the patient in the hospital fighting for their life.

5.  Autoimmune Problems:  This can occur throughout any organ in your body. The bodies immune system does not recognize itself and instead, attacks and destroys any organ or system. Prior to diagnosis, my body destroyed my intestines, my thyroid, my lungs, my heart, and my joints, to name a few. I had all of these different ailments, no one could connect the dots. Lupus is also very common with CVID.

6. ZPacs are ineffective for a person who has an immune Defeciency.

7. You may not develop fevers, unless you are so ill, you may be near death before your body responds with a fever. This is variable for a lot of patients, but studies are coming out indicating most of us don’t run fevers very often.

8.  Often labeled a hypochondriac and referred to psychiatrists.

9.  Basic CBC bloodwork shows abnormal albumin or globulin (if so, this is a HUGE indicator that you need to find a clinical immunologist, do NOT believe what your trusted primary tells you. I did, and wasted two years believing her. If you basic blood work shows any abnormality in these two categories, insist on an immunoglobulin blood test.

10. Unusual and serious hospitalizations, without ever getting a true indicator as to your diagnosis.

11. Being misdiagnosed with sarcoidosis.

12. Extreme fatigue.

13. Gastrointestinal problems.

This is not an all exhaustive list, as there are many more factors, when actually diagnosed. However, these are the MOST common physical illnesses that I have encountered all of my life, and from others who also suffer from primary immunedfeciencies, or CVID.

“Spoonies” have heard and do not want to hear the following….

Can you define what an INVISIBLE IlLNESS actually LOOKS like?

Here I describe the spoon theory, and I guess I am what someone would call a “spoonie’ if they knew what it meant.  Personally, I’ve heard them all, and then some. People are well intentioned by stating some of the following, but in reality they just don’t get it. The one I hear the most, is “But you look great”.  Well, I respond, politely, thank you. What were they expecting to see? If they could peel my skin off, maybe it would be different, as everyday is a struggle. No one is around when your have so much mucous draining, that I’m throwing up, or when I look and smell horrible, because of the recent germ, or because I don’t shower as I should. Again, look at the spoon theory.

I made the horrible mistake of saying the same thing to the first person I met with CVID, now I totally regret my thoughts and words. I told her how great she looked, eee-gad, what a dumb, thing that I said. Now I get it, but then I was still trying to figure all of this out.

When your diagnosed with something so rare that even doctors avoid you, it’s kind of hard to accept the new way of thinking, that is your new life. It’s a complete metamorphosis, a complete change in every aspect of ones living.

People just don’t get it. It’s so terribly difficult to explain. I want to raise awareness, but I am just one person. What can I do?

Hopefully, I will find my calling, hopefully I can make that change. Every time I get a great idea to add to my bucket list of raising awareness, I get sick again. All my energy is zapped. Cognitively, I am not able to do what I used to. It’s the new me. The me still in the making.

I sometimes wonder, why was I doomed/destined to have this CVID. I do question it a lot. There are no answers. Maybe someday, I will have an answer though, because every once in a while I get a glimpse, of what my new life means. So onward to the post below adapted from

28 Things NOT to say To a Spoonie

In 2003 writer Christine Miserandino published an article on her blog “But You Don’t Look Sick” called “The Spoon Theory.” In the post, she recalled a dinner conversation where she explained to her roommate what living with lupus was like. Miserandino used spoons to measure her energy level and ability to carry out daily tasks. After the article was posted, many individuals with chronic illnesses like lupus began using the term “spoonie” to identify themselves.

Natalie van Scheltinga, who has Hashimoto’s thyroid disease and fibromyalgia, started the Facebook page “Spoonies for Life” in February. It’s become a community for spoonies everywhere to connect and share their stories. “We can find some comfort with each other and know we are not alone,” van Scheltinga told The Mighty.

In addition to lupus and fibromyalgia, chronic illnesses include Lyme disease, rheumatoid arthritis, Crohn’s disease and diabetes, among others. Many chronic illnesses are considered invisible and therefore difficult for others to understand. This, unfortunately, leads to some awkward, uncomfortable, sometimes downright insulting moments.

So, The Mighty teamed up with Spoonies for Life and asked their community what they wish others would stop saying to them with regard to their chronic illness. Here’s what they had to say:

1. “Stop being a hypochondriac.” — Amanda Ward

2. “If you eat all organic foods and a balanced diet, you won’t need to take medications.” — Caroline Freeze

3. “Get more exercise.” — Betina Jackson

4. “Oh I know someone who had that, but they’re fine now!” — Nina Leach

5. “Why don’t you want to go out?” — Connie Elliott

6. “You don’t look sick.” — Jessica Lynn

7. “Have you tried thinking positively?” — Amorie Spangenberg

8. “You were home all day… so what did you actually do around the house?” — Christie Pollock Taylor

9. “You can’t feel bad all the time. It must be in your head…” — Norma Conti Mcdonald

10. “I know how you feel.” — Estelle de Mol

11. “Oh, but you’re too young for that.” — Megan Geromichalos

12. “My 4-year-old daughter often says to me, ‘Mommy, I wish you weren’t so tired all the time.’ That kills me.” — Liz Brown Culver

13. “If you’d just lose weight your problems will go away.” — Paula Cohen

14. “When older people say, ‘Oh, you have achy joints? Wait ’til your my age!’” — Sunny Rene Banks

15. “Just push through it.” — Heather Lauren

16. “Have you asked your doctor for better pain meds?” — Norada Thomas

17. “There’s always something wrong with you.” — Nichole Mack

18. “From my husband: ‘When do you think you’ll be ready to work again?’ (Never)” — Penny Yale Wood

19. “Well, you do take a lot of pills!” — Sandra Beutels

20. “You get a disability check? Why? You look fine.” — Renee Thomas

21. “Oh, I hurt too! My (insert body part) is killing me.” — Kris Whitak

22. “I’ve just been down with a flu, so I know!” — Silje Liv

23. “I had someone who is supposed to be a friend say, ‘You are stronger than you think.’ This really made me ill. As a spoonie we all know the struggle, fighting day after day for years. We are strong but they will never know our fight. Some days I think I will never survive, when every part of my body hurts.” — Marsha McMahan

24. “I saw you out of your wheelchair yesterday, so why do you need it today?” — Joy Quinn

25. “You should go off all of your meds and detox.” — Veronica Belback

26. “You don’t look like you’re in pain though.” — Paula Wood

27. “As someone with epilepsy I hate when people tell me, ‘Oh I understand, my dog has seizures.’ While I love my dogs, I do not like my struggles being compared to that of a dog.” — Keti Theon Kharis

28. “Have you tried (insert treatment they found in a generic internet search)?” — Sarah Leanne

Read more: http://themighty.com/2015/11/28-things-spoonies-wish-others-would-stop-saying-to-them-1/#ixzz3qXomWIWj