Who are you?

It’s ok to be you. It’s ok to be different, and feel differently. There is no “normal”. The more we try to fight our own nature to fit in, or to conform to someone else’s idea of how/who we should be, the more damaged we become.

Today, I saw this posted on a friend’s timeline on Facebook:

I was told today that I can only know myself through someone else, I guess I’ll never know who the F$#?k I am.

Continue reading “Who are you?”

Tuttle’s Letter to the TBDWG — Madison Area Lyme Support Group (Blog Post Share)

This is something everyone should read.

“There are rumors that Dr. Eugene Shapiro has been selected to participate as a member of the Tick-borne Disease Working Group. Shapiro has spent a career discrediting the sick and disabled along with the courageous clinicians attempting to help these patients as he coauthored the deplorable Lancet article referenced below. There is no place for Shapiro on the TBDWG as he is a disgrace to the medical profession.” Continue reading “Tuttle’s Letter to the TBDWG — Madison Area Lyme Support Group (Blog Post Share)”

Activism: Fighting for Lyme Disease Awareness.

Activism.

ac·tiv·ism
ˈaktəˌvizəm/
noun
  1. the policy or action of using vigorous campaigning to bring about political or social change.

For many, the words “activism”, or “activist” conjure up memories of the 1960’s, with peace marches, love-ins, and racial equality at the forefront of most protests. As many know, however, we have a much richer history than the activism of the 1960’s. Our country, and in fact many throughout the world, were built on the results of activism. The selfless acts of protest, picketing, and standing up for each other, has always been the way to get things done, despite the injury, loss of life, or jail time one might face.

Continue reading “Activism: Fighting for Lyme Disease Awareness.”

Vaccines

“The human immune system is a complex network of cells and organs that evolved to fight off infectious microbes.”

Now, the links are below, and you can click on them to read more, on your own. My point with this post is that many people are unaware how vaccines work, and would rather argue than learn. I have only included the most common, to keep it short. This is not a statement, of my opinion, this is “fact” as you can see by following the links.

“The human immune system is a complex network of cells and organs that evolved to fight off infectious microbes.”

Much of the immune system’s work is carried out by an army of various specialized cells, each type designed to fight disease in a particular way. The invading microbes first run into the vanguard of this army, which includes white blood cells called macrophages (literally, “big eaters”). The macrophages engulf as many of the microbes as they can.

Ref: NIH

The cells in our body have a natural ability to fight disease, and develop an immunity.

The theory behind vaccines:

Vaccines teach the immune system to fight by mimicking a natural infection.”

For example, the yellow fever vaccine, first widely used in 1938, contains a weakened form of the virus that doesn’t cause disease or reproduce very well. Human macrophages can’t tell that the vaccine viruses are weakened, so they engulf the viruses as if they were dangerous. In the lymph nodes, the macrophages present yellow fever antigen to T cells and B cells.

A response from yellow-fever-specific T cells is activated. B cells secrete yellow fever antibodies. The weakened viruses in the vaccine are quickly eliminated. The mock infection is cleared, and humans are left with a supply of memory T and B cells for future protection against yellow fever.

Types of vaccines:

  • Live, attenuated vaccines
  • Inactivated vaccines
  • Subunit vaccines
  • Toxoid vaccines
  • Conjugate vaccines
  • DNA vaccines
  • Recombinant vector vaccines

 

Live-attenuated vaccines:

Live vaccines use a weakened (or attenuated) form of the germ that causes a disease.

Because these vaccines are so similar to the natural infection that they help prevent, they create a strong and long-lasting immune response. Just 1 or 2 doses of most live vaccines can give you a lifetime of protection against a germ and the disease it causes.

But live vaccines also have some limitations. For example:

Because they contain a small amount of the weakened live virus, some people should talk to their health care provider before receiving them, such as people with weakened immune systems, long-term health problems, or people who’ve had an organ transplant.
They need to be kept cool, so they don’t travel well. That means they can’t be used in countries with limited access to refrigerators.

Live vaccines are used to protect against:

  • Measles, mumps, rubella (MMR combined vaccine)
  • Rotavirus
  • Smallpox
  • Chickenpox
  • Yellow fever

Inactivated vaccines

Inactivated vaccines use the killed version of the germ that causes a disease.

Inactivated vaccines usually don’t provide immunity (protection) that’s as strong as live vaccines. So you may need several doses over time (booster shots) in order to get ongoing immunity against diseases.

Inactivated vaccines are used to protect against:

  • Hepatitis A
  • Flu (shot only)
  • Polio (shot only)
  • Rabies

Subunit, recombinant, polysaccharide, and conjugate vaccines

Because these vaccines use only specific pieces of the germ, they give a very strong immune response that’s targeted to key parts of the germ. They can also be used on almost everyone who needs them, including people with weakened immune systems and long-term health problems.

One limitation of these vaccines is that you may need booster shots to get ongoing protection against diseases.

These vaccines are used to protect against:

  • Hib (Haemophilus influenzae type b) disease
  • Hepatitis B
  • HPV (Human papillomavirus)
  • Whooping cough (part of the DTaP combined vaccine)
  • Pneumococcal disease
  • Meningococcal disease
  • Shingles

“Blaming un-vaccinated people for an outbreak of measles, is ridiculous.” <<< This is my opinion.

 

 

 

 

 

Petition: Pass H.R.220 – Ntl. Lyme and Tick-Borne Diseases Control and Accountability Act of 2019

Please sign, and share.

https://www.change.org/p/house-committee-on-energy-and-commerce-pass-h-r-220-ntl-lyme-and-tick-borne-diseases-control-and-accountability-act-of-2019?recruiter=185100571&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition&utm_term=Search%3ESAP%3EUS%3EBrand%3EProper%3EExact

Faith, Hope, and Complacency.

“Let me tell you something my friend. Hope is a dangerous thing. Hope can drive a man insane.“ – (Red) The Shawshank Redemption.

Hey everyone,  I guess it’s been awhile. To be honest, I just haven’t felt inspired enough, or angry enough to crank out a post. My apologies, but, as you know, such is the life of a person with a chronic illness…

Let’s just call it what it is: CHRONIC LYME DISEASE.

Yes, it does exist, and no matter what you are told, it’s NOT all in your head.

I was reminded of this, quite abruptly, while watching “The Bleeding Edge” on Netflix. Follow the link, and read the article. If you have any kind of man made parts in your body, brace yourself. Then, come back, and read my rant.

Continue reading “Faith, Hope, and Complacency.”

To whom it may concern,

I truly hope that someone, somewhere, actually takes the time to read this, and finds it to ring true. Perhaps, it will go viral, and reach more people. (Hey if a cat skateboarding is newsworthy…why not?)

I am a 53 year old grandmother of 5. I have been suffering with chronic illness for four years. When I began to fall ill, I was working full time, in a job I loved. Because of my illness, I missed many days of work, and finally used the FMLA. I was lucky to have an employer who provided me with their short term disability plan. I was deemed disabled, and unable to work, by their insurance company, with input from my doctor, at that time. I was able to use this for 3 months.

When my 3 months of FMLA were finished, I survived on a short term disability plan, that I had purchased, years earlier, through Aflac. My disability, and inability to work, were documented, monthly, or bi-monthly, by my doctor, who had to fill out paperwork, and deem me disabled each time, for my benefits to continue. I used the benefits from this plan for 2 years.

Presently, I have exhausted the resources that any working person should have had in place, I am now surviving on SAGA/SNAP supplements of $219, and $192, monthly, respectively, and my healthcare provider is Husky D. I also, in an attempt to be pro-active, applied for, and am currently living in, a building, that provides subsidized housing for the elderly, and disabled. These benefits, as well as the housing, were obtainable only because my doctor had deemed me unable to work.

To date, my health has not improved. In fact, I have been diagnosed with approximately 5 new conditions, and feel that my health is deteriorating, despite the efforts of my doctors to come up with a treatment plan that works.

I am currently scheduled for an MRI of my lumbar spine, and a visit to the Musculoskeletal Institute at UCONN, to determine what is causing the pain in my hands/wrists.

In the meantime, I am waiting for my healthcare providers to fill out the paperwork that will allow me to continue to receive SAGA, and SNAP benefits. They will have to provide information and evidence, that will show that I am unable to work.  This paperwork was sent to me by DSS, and I received it only FIVE days before the deadline for me to submit it. This, not only upset me, but also my doctors, who hate doing this, and are always skiddish about filling out disability paperwork. (Even though it is their job to do so.) My illnesses are exacerbated by stress, and this makes completing tasks, difficult. I see no reason why this paperwork couldn’t have been sent out earlier. What if I had been away, or hospitalized? What if I needed to arrange for help to fill it out?

Speaking of paperwork, and stress, I am also in the process of appealing a denial of my Social Security Disability application.  If I recall correctly, I have paid into Social Security for approximately 25 years, given time away to give birth to, and raise, two children, and/or remain unemployed due to a lack of available/or jobs that would have paid me a living wage.

According to the SSA:

Sec. 223. [42 U.S.C. 423]

(d)(1) The term “disability” means—

(A) inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months;

(I meet this requirement)

(2) For purposes of paragraph (1)(A)—

(A) An individual shall be determined to be under a disability only if his physical or mental impairment or impairments are of such severity that he is not only unable to do his previous work but cannot, considering his age, education, and work experience, engage in any other kind of substantial gainful work which exists in the national economy, regardless of whether such work exists in the immediate area in which he lives, or whether a specific job vacancy exists for him, or whether he would be hired if he applied for work. For purposes of the preceding sentence (with respect to any individual), “work which exists in the national economy” means work which exists in significant numbers either in the region where such individual lives or in several regions of the country.

(SO, this means that if there is a job in Nome, Alaska, that I “might” be able to do according to your standards, I should leave my loved ones, and in the throes of  chronic illnesses, that are progressing, move to Nome, Alaska, and HOPE that I would get hired, given the fact that it has been documented for 3 years that I am unable to work? I’m confused.  I also, do not think the SSA should ignore the fact that older people, who have  a chronic illness, and have been out of work for a substantial length of time, will be passed over by employers. We are not magically healed because you deem us able to work. We will miss time, and that is unacceptable for any employer. I currently have 6 days per month with appointments alone.)

(B) In determining whether an individual’s physical or mental impairment or impairments are of a sufficient medical severity that such impairment or impairments could be the basis of eligibility under this section, the Commissioner of Social Security shall consider the combined effect of all of the individual’s impairments without regard to whether any such impairment, if considered separately, would be of such severity. If the Commissioner of Social Security does find a medically severe combination of impairments, the combined impact of the impairments shall be considered throughout the disability determination process.

(I do not feel that anyone has considered the combined impact of my documented ailments. EVER.)

Over the last 30 years, there have been many new advances in medicine, diagnostics, and research. Unfortunately, there has also been an upsurge in the number of people suffering with chronic illness, and no corresponding (intelligent) additions to the SSA’s listing impairments. Many patients suffer from illnesses that can only be diagnosed clinically, based on symptoms, by their physicians/specialists. Although it is essential, to gather hard evidence in determining a person’s ability to work, and eligibility for benefits, certain debilitating illnesses do not show up on x-rays, ct scans, or in blood work, resulting in vague, conflicting, misleading, or false positive/negative results. This does not mean they are not ill, or disabled. It means that we need to fund research.

I do not want to be sick. I do not enjoy being in constant pain, and in a perpetual state of exhaustion. This is not how I want to live my life, but it is my reality, and there seems to be no relief in sight.

The fact of the matter is, that you do not see me, and you do not know me. You do not see how hard I worked. You do not know how active I was. You are not here when I can’t get out of bed. You have never seen me happily chasing my grandchildren around the yard, and you are not aware that I can no longer chase them, or carry/pick up the one year old. You have no idea, what I go through just to get groceries, and arrange transportation to my appointments. You are not here to help me open jars, wash my hair, or pick up something I’ve dropped on the floor. You’re not helping, when I need eye drops, vitamins, or cold medicine, that I cannot purchase, because I have no cash after paying my bills. You have no way of knowing that it took me a week to write this, or that it takes a day or two to fill out DSS paperwork. You don’t have to hire a lawyer, to navigate your maze of bureaucracy. You don’t see me when my memory fails, and I stop in mid sentence because I can’t remember a word, or where I left off. You are living your life, while I struggle to survive.

Yes, I am one person, who is ill, and needs help. Just one, who may represent millions. I am only asking that I be considered, that WE be considered, human beings, with rights, who are entitled to the assistance that all of us have paid into throughout the years.  We have done this because it is the law. We do our part in an effort to help those who need help. Knowing, that we too may need these funds in the future. It shouldn’t be this hard for me/us, to be approved for benefits. No one should have to live in poverty, endure illness, and potential homelessness, because of  vague, questionable, ill-defined, guidelines that are outdated, and easily manipulated, by the powers that be, and their over-use of red tape.

In conclusion, I truly hope that someone, somewhere, actually takes the time to read this, and finds it to ring true. Perhaps, it will go viral, and reach more people. (Hey if a cat skateboarding is newsworthy…why not?) Maybe the #POTUS will read it, or a #Senator, or someone at the #SSA, and maybe, things will change. Maybe for once, some good might come from a long blog post, written by a 53 year old, disabled, grandmother of 5, and another on the way.

-JLS-