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.”

Marijuana, Hemp & CBD.

For thousands of years, humans and animals alike have been using plants to help them heal. We still do. That is why we have Lavender baby bath, Chamomile Tea, Aloe in our lotions, and health food stores.

Believe it or not, we have also been using marijuana, hemp, and it’s derivatives in the US, up until about 70 yrs ago, with no issues whatsoever. Doctors were prescribing it for hundreds of years.

Continue reading “Marijuana, Hemp & CBD.”

Soapbox Rant #2 – A History Lesson –

“To sit home, read one’s favorite paper, and scoff at the misdeeds of the men who do things is easy, but it is markedly ineffective. It is what evil men count upon the good men’s doing.” -Theodore Roosevelt –

Confession: I love Ken Burns’ Documentaries.  There are 31 in total, with 3 more in production. A fact I did not know until just now.

Last night, I watched “The Roosevelts“.  (Let’s talk about “Teddy”)

We, here now, did not live through Theodore Roosevelt’s Presidency, and later political adventures, so the most we got was a blurb about him in history class, which was totally meaningless. There is no reference point, nothing to clue us in on the “person” himself. (Understanding the man/woman’s roots in any situation is essential to understanding them, and their ideals.)

What is the first thing that comes to mind when you hear the name Roosevelt?

Have you even heard that name before now?

Teddy Roosevelt was born in 1858, to an affluent family in NYC. He was frail, and sickly in his youth, but spurred on by his father, (and against doctor’s advice) developed his strength through gymnastics, and weightlifting in during his teens.

tr_age_11_paris
Teddy – age 11

Continue reading “Soapbox Rant #2 – A History Lesson –”

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-