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…
The 21st Century Health Care Act (#Cures) was masqueraded as a Bill to advance health-care, treatment, and research into the next Century. Instead, the 21st Century Health Care Law was a chess-like maneuver spiraling America back decades. The fraud, bribery, and greed of the 21st Century Health Care Act (#Cures) voiced by Senator Warren are occurring. What is certain, is that #Cures was a purposeful manipulation of profit and politics, and patients represent the pawns.
The 21st Century Cures Act (AKA #Cures)was praised as advancing science and medicine into concise and effective developments and treatments for illnesses. Cures proponents claimed medical care and treatments would evolve to higher standards advancing into the the 21st Century. Instead, the development of the #Cures bill, now 21st Century Cures Act is the snowball that began the avalanche. Senator Elizabeth Warren (D-MA) was one of the few Senators that refused to vote for the 21st Century Cures Act (AKA #Cures).
Note: The 21st Century Cures Act is the law that was signed by President Obama. Also known, as #CURES. The 21st Century Cures Act and #Cures mean the same thing, used interchangeably. Hint: I know we all know this NOW; it is like Affordable Care Act (ACA) and Obamacare-2 names, same thing 🙂
The 21st Century Cures Act PERMITTED the health care political crisis to occur. The consistent threats to abolish American rights of access to care, treatment, and even prolonged life began by the signing of 21st Century Cures Act. As we reflect on what millions have worried about daily, their health-care, and the persons who have the power over their life and death. We can look into the provisions of Cures.
SIDE NOTE: The last amendments to the 21st Century Cures Act were presented in July 2016. There are not any recorded last minute “Bait and Switch” or “Trick” tactics. The politicians & lobbyist who did not approve of the Final Bill presented their opinions, facts, and funds to derail #Cures. Likewise, those who approved of the Bill with Amendments from 07/2016 did nothing and were aware of the last amendments. A DEATH TOLL WAS EXPECTED. See the end of this blog for a surprising opponent.
The Republican agenda, was crystal clear when they drafted Cures. One just need to remember the last 9 months and the behaviors, actions, motives, money, power, lies, and deceit just as written in #Cures. Coincidentally, 21st Century Cures Act was signed into law by President Obama in December. As a novice, upon reading (and re-reading) the #Cures law, I was able to see many discrepancies in #Cures last December as a beginner blogger (no hate for the horrid typos and structure :0) here,here, here, and here.
In November of 2016, Sen. Warren stated the blatant truth, ““I cannot vote for this bill,’’ Warren said on the Senate floor, speaking to a mostly vacant chamber.
“I will fight it because I know the difference between compromise and extortion.”
Those words ring loud and clear 9 months after the passage of #Cures, and the later chaos many families have endured due to the 2017 political-healthcare climate.
Senator Warrens background as a Speech and Language Pathologist, may have her in the unique position that Washington fails the American people. Respectfully, Sen. Warren is one of the few that are educated, and understand the personal, familiar (family), medical, and unethical consequences of the #Cures Act. Unique to her peers, she is not motivated by financial lobbyists. Consider signing the Petition created by Sen. Warren on the side bar and at the end of this blog. I am aware we are WAY past November 2016 :). By circulating this information the public can gather more information about the historical beginning of the 2017 battle for health-care.
#CURES is the contrary to its namesake. The 1000 page law, is far from any cure. Most citizens expect their medications, that are effective, to treat their individualized conditions. The medications we take should come from a reliable source. After all, we are not ordering high-dollar medications from China. Right? The supposed price tag, mark up, inflation, is sometimes justified because of the valid research and pharmaceutical development followed by FDA stringent guidelines necessary prior to patient-usage. NOT.SO.WITH.CURES.
As predicted, #Cures is what has led to the current health care tug-of-war of patient lives or padding political pockets in America.
Whats wrong with the 21st Century Cures Act?
PROFIT. Warren stated her concerns with the 21st Century Cures Act in November 2016:
– Legalize Fraud:Pushing treatments without scientific evidence that they work is fraud
– Cover up Bribery: Drug companies keep secret gifts associated with “medical education” in exchange for prescribing specific medication
–Hand out dangerous, special deals to Republican campaign contributors (i.e.,Mitch McConnell): It delivers a special deal (cellular and regenerative therapy)people can sell dangerous treatments without meeting the FDA gold standards for protecting patient safety and making sure these drugs personalized for a specific condition.
year, we were visiting local plasma centers, thanking donors, and participating in the PI Community. When you feel isolated and alone, your entire life with illness and denial from all facets–it was only appropriate that there was a communal “ah-ha” moment where others identified…
Primary Immune Deficiency Awareness Momth is the entire Month of April!
Until next time!
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.