When Sharing, is NOT Caring. PSA

Pretty much everyone with an internet connection uses social media. Day in and day out, we are inundated with memes. Some thoughtful, inspirational, or just plain hilarious, and others thought provoking, or informational.

Continue reading “When Sharing, is NOT Caring. PSA”

This is how it is.

I am about to write a post with out chaging any of the mistakes I make during it’s writiing, no grammar fixes, spelling corrections, or other efforts to look like I have a brain will be used. I’m doing thisa so people witkk understand theat we are all not on here typing a gazillion wordsperminute, like some kid wityhan iphone This is what pain, brain fog,and no voordination liikjs like.

It’s been rainiy, dreary, and just fucking miserable in CT, and I’ve been feeling it. I haven’t been doing much, aside from sitting around, ad waiting for my new CBD to come. I can’t wait to tell you all about it. I love it. Best one yet.

I wqoke up with my arms nkumb last night at about 11:25 am. I couldn’t goback to sleep, and I’m still up.

I think I’m herxing. It’s the new CBD. Time to grab the Burber and epsom salts, and vinegas.

Well, if I’m herxing, it’sa working right? I hope so. cut my pain in half the other day, so that made me very happy. I’d like to be Pharma-free soon. I’m going to give it about a week before I come on here and try to tell you that this CBD tincture is the best ever.

There are balls in the eir, I just hopw I can catch some.

In case you havent noticed, or I haven’t told you,m there is a nre website, anf forup up here :  https://www.lessonslyme.com/

It’s for everysone. Come and join, and make some posts. It’s quiet in there, and still smells like a new car.

 

Anyway, I need to go lie down, I’m all sdrmbled. it took me 45 minutes to write this.

 

❤ – J

Blog post share: “Chronically Resilient”

*Note from A Chronic Voice: Angela and I met at a party through our ex-boyfriends (talk about how life goes ), and I never knew that she suffered from chronic illness too. She was living overseas – which can be especially tough for a spoonie! – and seemed so outgoing. After I started this blog,…

via I May be Chronically Ill, but I’m Also Chronically Resilient — A Chronic Voice

2018 Linkup – A Chronic Voice

I know everyone’s probably saying the same thing, but can you believe that we’re almost halfway through the ‘new year’ already?! The older I get, the more I’m amazed at how time whizzes by. I even need to pause for awhile as I recount my age, as I can’t keep track anymore April’s linkup was…

via May 2018 Linkup Party for People with Chronic Illnesses — A Chronic Voice

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-

 

You should see this.

Last night, I turned on Netflix, and much to my surprise, #Unrest had been added. It is a film about living with ME/CFS. I have posted about it before.  I was so happy to see it there, because I was itching to watch it. I too have been diagnosed with ME/CFS, and as with “Under Our Skin“, a documentary about Lyme Disease, it is nice to see something I can relate to, as well as learn how others have coped.

Within the first 5 minutes, I was struck sideways by Jennifer’s comment while she was filming herself struggling. It went something like this: “I know you are wondering why, I am filming myself, if I am so sick.” Her answer was simple: “I feel like someone should see this.”

So, she kept filming. The result, is a poignant, and relatable film, that everyone who has a chronic illness, or medically treats someone with a chronic illness, should watch.

To many people, our illnesses are not visible. When we are in the throes of a bad day, we “disappear”, as Jennifer remarks. We go to our beds, and our couches, with the shades drawn, and suffer in silence. Most of us, doing it alone, or with people who don’t “get it”. No one really sees our struggle, or feels our pain. No one understands how hard it is to decide to live every day, hoping to be around long enough to find a cure, or a treatment that works. Yes, I said, “decide to live”. Many people have taken their own lives due to ME/CFS.

ME/CFS, along with many other diseases, or “syndromes”, are most common in women. In the past, and still, in some countries, it is deemed “hysteria”, and is considered a mental disorder. A disorder, that can, if recommended by the wrong physician, result in the sufferer commited to a psychiatric ward.

Not everyone with ME/CFS, (or any chronic illness, for that matter), has the same symptoms. This is why some of us are bedridden, and some are not. This also adds to the stigma. It gives people the impression that we are faking it. Some commedians, and news media have also eluded to it being “just laziness” on our part.

Trust me, we are not lazy. Even from our beds we get things done. Someone asked me, how I can post so much. Well, I really don’t. Yes I may publish 3 posts in a day, but that’s only because I had them saved up. I write, I stop, I rest. I might be able to work on them tomorrow, or I might not. I may not be able to post again for two weeks. I just never know.

We blog, and make videos, because “Someone should see this.”. The world needs to be made aware, that millions of people, 85% of which are women, have ME/CFS. We do it, to stay connected to our spoonie friends, who may be our only friends. We do it so that we do not feel useless. We do it because it gives us the will to live.

Yes, we know how rediculous this may seem to you.

We cannot vanish into the background of life. We must fight for ourselves, and the ones that will come after us.

Bottom line, watch Unrest. Make your family, and friends watch it. Spread awareness.

wounds

 

 

 

 

“Denial”

It’s not just a river in Egypt.

So there you are, just going about your day. You reach into the mailbox, and pull out an envelope with the seal of the Social Security Administration on it. For a moment, you feel hopeful, but as you open it, you prepare yourself for the let down.

You have been DENIED.

If this is your first time, it may feel like a crushing blow, and will leave you wondering what to do next. (Aside from crying.)

What you do next, is crucial. Read the entire letter. It may have information as to why you were denied, and a list of medical professionals who did, or did not send in requested information. You can, and should, appeal the decision. You must do this before the date indicated in the letter. (60 days) You can file an appeal online, or at your local Social Security office. You can file and appeal even if you do not have an attorney.

Get a lawyer. Most law firms only charge you if they win your case. They will handle all of the back & forth of acquiring documentation, and filing paperwork. Anyone with memory or cognitive difficulties should have a lawyer, or reliable person to help. It is easy to forget who you have contacted, what has been sent, or deadlines. Missing deadlines is bad.

In my case, I have filed an appeal, and I have a Firm working for me. Hopefully, I will be able to write a post (review) in a few months, about who took it on, and how you can reach them. Fingers crossed.

Filing for SSD, or SSI is a very stressful process. You will need to jump through hoops, and see doctors you do not know. Depending on your conditions, you may need help with the stress. Talk to your doctor. I get stressed out making appointments, and arranging transportation. Not to mention traveling. Some days I just want to hide. Push through it, it’s the only way.

I am not an expert on disability. If you need really good info, and have a ton of questions, visit HOW TO GET ON. Not only will you find the answers to most questions, but you will be able to read about the experiences of others, and be fascinated by the artwork.

Trust me, you’ll love it.