Mom’s “Last Stand”

December 13, 2017 Update: I received something called a “Minute Order” from the Federal judge after we filed a summary in October (I ended up in the hospital the day before my summary was due, caused by an apparent stress related MS exacerbation). After the summary was filed, I was originally slated to see the judge November 28th, but they called to tell me about the order the day before court.

I was broken-hearted hearted when the clerk told me to be happy I didn’t have to go all the way down to court; and I explained to him that was what I was waiting for this whole time.

From what I understand this is neither good nor bad, but I am preparing for the worst (it’s easier to say ‘no’ if you don’t see someone, right?). I’m hoping that he is going to be in a really good mood and finally award my money to my family and I… but I’m pretty sure it’s going to take a miracle–the SSA told the judge that they were “done” with me too, so yeah.

My only choice after this is Supreme Court–and another fifteen hundred dollar court bill.

You would think someone would notice how long I have stuck with this… How many frauds or liars would spend nearly a dozen years (and thousands of much needed dollars on doctor, hospital and court bills), just to get a few hundred dollars a month?

Only stubbornness, creativity and luck has barely kept our lives afloat financially since I became ill. We have given up a lot that many take for granted. Thank goodness for the internet.

If you are fighting for Disability, please watch your doctors carefully when they keep records (and make sure they have your back at all times)–your livelihoods literally depend on it.


Things have been pretty crazy in my life lately, but I won’t bore you with all of the little details. Here’s a little what has been going on lately:

When I got out of the hospital last Thanksgiving, I learned that my attorney decided he couldn’t “find any more arguments” about my case and quit. After trying unsuccessfully to find a new attorney willing to help me file “on the federal level”, I have decided to represent myself “Pro Se” and will be filing my own arguments. The only catch is that I have only five days left to file.

fdr-ssaMy husband took me to the Federal building last Friday; and when I told the clerk the reason why I was there, she stopped me and said, “Let me ask you something. Do you feel like your civil rights have been violated?”.

I sat there for a second, tears began to burn in the back of my eyes after hearing her say those words and I thought… Did I? Then it all flooded in… I used to get told that I was “too young” all the time when I made complaints of pain. I was noted by doctors to be everything from “well nourished” to “massively obese”. Even my gender has been an issue… The sad fact is that it’s pretty well known that doctors tend to listen to men’s complaints more attentively than a woman’s, because we’re apparently “too sensitive” when it comes to pain.

(Apparently, the only gender in the world able to push a watermelon through a pinhole–with and without medication–doesn’t truly know what “real pain” is. I’m sorry, but as much as I love my husband, I have seen him when he’s gotten a cold or the flu. If I had a dollar for every time he either told me or our children he was dying–or started to write out his will in his “deathbed”–I’d be a multi-millionaire.)

I never really gave the clerk an answer. She just looked at my face and knew immediately. She handed me a form and said, “You put down here what you just told me and bring it back once you’re done to see if we can file a civil rights action.” She also handed me a flyer for a required legal clinic that I need to attend in order to file “pro se” in order to represent myself.

downloadAll weekend my husband and I had been discussing our plans how to handle next week… and praying that my body won’t give out on me beforehand. On Monday we’ll be driving back to the Federal building to take the course, since I am unable to retain the information on my own. Hopefully after that, it won’t be too hard to write my own legal brief.

I’m not sure what the outcome will be when it’s all said and done. Whatever happens will happen; but not for lack of trying.

The Social Security Administration (and some of the words of ex-doctors) may be able to keep my “benefits” from me; but they won’t ever take my spirit. As long as I have a voice, I’m going to continue to use it so that no one ever has to go through what my family has done for nearly twenty years.

be-the-changeIf there is one thing I want anyone to learn from me, it would probably be this: Your doctor works for YOU. If they don’t do the job that you hired them to do–don’t assume they are trying their best–find a new doctor ASAP. You wouldn’t take your car to a shoddy mechanic, so don’t allow the shoddy physicians of the world keep you from getting your answers.

Wish me (us) luck, and please send your thoughts and prayers our way this week. We could use all the positive energy in the world for what we are about to take on. ((HUGS))

Strengthening Doctor/Patient Relationships

0328eaa9-e829-4681-a268-1485280d3bd0_400_282It almost seems a lifetime ago that I was fighting for answers for all of my confusing symptoms.

For years I waited patiently for my doctors to come up with an answer to what was happening to my body, and nothing really happened. Well, actually, one particular doctor especially did keep trying to send me to a psychiatrist because, of course, my symptoms were “all in my head” (and a few other choice phrases). I was in my 30’s, and according to them, “too young” to be having the types of complaints that I had.

In fact, if it wasn’t for a doctor telling me to look up Fibromyalgia online that April in 2006 (that he finally diagnosed me with–then proceeded to tell me it was a “throw away diagnosis”)–I probably would have been a permanent resident of a psychiatric hospital by now because of them.

Literally. Pretty scary, right?

When I finally learned about the vast amount of quality medical information that was available online, and realized that Fibro didn’t answer all of my questions, I started researching my symptoms on my own.

It was about six months later that I learned my primary physician had lied to me about not having Multiple Sclerosis–because he never actually tested me for it. Had he tested me for it back in 2005, I believe that I may not have progressed with my illness(es) as much as I did after the meningitis attack. After he told me that I didn’t have MS, I even asked him if I was brain damaged because I wasn’t able to concentrate, comprehend a lot of things; my speech would slur and more. His reply was simply “no”, and he left the room.

Researching my symptoms changed my life for the better. It wasn’t easy at first–most doctors don’t appreciate a patient doing their own medical investigating. In fact, a lot of them frown upon it.

istock_000016285548xsmallBut, some doctors actually do appreciate it as long as you are well informed when you present it to them.

When I realized that my doctor(s) weren’t paying proper attention to my medical issues, I finally got away from the entire medical group four years later (it would have been sooner had I not had a case already pending about my disability). You could say that the treatment that I, and some of my family members received could have been considered malpractice because of the undertreatment and misdiagnoses that were taking place on a nearly consistent basis for several years.

Since handpicking my own doctors I have been diagnosed with Multiple Sclerosis, Systemic Lupus, Ehlers-Danlos, Epstein-Barr–the list is a page or two long so I won’t bore you with the details.

Check out the link to the article in the October 2016 issue of Neurology Now that agrees that patients want more input when it comes to their health. It offers some great tips to have better interaction with your physicians – and hopefully get a more timely diagnosis.

Good reading, and good luck with your research. ❤

Chaos Behind A Smile

I read Susan Williams’ account of her husband, the late Robin Williams’s final months. It’s heartbreaking, yet so familiar at the same time if you live with a chronic illness.

Mr. Williams was a warrior whose mind, body and spirit could take no more. In life, he inspired and filled millions of people with joy and laughter as he performed his many wonderful characters throughout his career. In many ways, his death will have meaning that he probably never anticipated.

66th Annual Primetime Emmy Awards - Show
Photo credit: Lester Cohen/Wireimage

Mr. Williams was living with an invisible illness called Lewy Body Dementia, a neurologic condition that causes a form of dementia that creates the same underlying changes in the brain as Parkinson’s Disease and Alzheimer’s. He was officially diagnosed postmortem. Even though he succumbed to his illness on his own terms his widow, Susan, explains in detail the journey that led to the final months of his life. She showed how difficult it was for him, and for his family, to go through his journey of confusion, cognitive issues, temporary paralysis and more.

Everything the public never saw.

She showed us, through the eyes of a caregiver, the life of a human being that was living with a debilitating chronic illness.

PLEASE, read Mrs. Williams’ story. I promise, it will open your eyes – and your hearts – to a world that healthy people, luckily, never have to experience.

It will teach you how easily a smile can fool the outside world into believing that a sick person is fine.

Do me a favor. After you read the story, share it with your friends and loved ones. While you’re at it, give them a hug – remember how precious life, and good health, truly is.

Rest in peace, Mr. Williams. Your light will be in our hearts and laughter for eternity.

To learn more about Lewy Body Dementia (LBD), click here.  

To donate to the Lewy Body Dementia Association, click here.

***

Some notable people who suffered from Lewy Body Dementia include:

  • Actress Estelle Getty
  • Music industry icon Casey Kasem
  • Athlete Stan Mikita
  • Artist Don Featherstone, creator of the iconic lawn flamingo
  • Former NBA head coach Jerry Sloan
  • Actor Robin Williams

Summer Treats & Gadgets To Beat The Heat

Refreshing Watermelon Margarita

via Watermelon Margarita — MSnubutterflies

Watermelon Margarita

Since Memorial Day weekend is almost upon us I thought I would share this recipe.  Whether you’re barbecuing with family and friends or relaxing at home it’s a perfect summer drink. Light, cool, and so refreshing! It’s my new favorite.

 

18 Quick Summer Snacks

by JaneMaynard via Cosmopolitan

Simple, delicious snacks and desserts in this easy to access website. Beat the summer heat while noshing on these wonderful delicacies. Yum!

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Sew Very Useful Neck Cooler (DIY)

by Beastbunny via Instructables

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The neck cooler in its dry, flat state before soaking in water.

Have a great summer!

Why Doctors Need Two Left Shoes

legs1After years of serious and thoughtful observation (i.e. doctor visits, hospital stays, and conversations with other patients), I have come to a conclusion. I believe medical professionals should be required to wear two left shoes at work for one day.

Why, you ask? Well, I’ll tell you my theory…

Living with a chronic illness, we go through symptoms that healthy people never usually experience. Because of this, we quietly wish healthy people were able to understand what it’s like to be sick 24/7/365 (including leap year—we don’t get that day off either).

Of course, we would never ever wish our pain on another person—we know too well what it’s like to hurt all the time; to be constantly sick… we wouldn’t dare wish any of this on our worst enemy.

Empathy is a wonderful thing… To have the ability to “understand” what someone is  going through, you can appreciate better what pain can be like—and therefore, treat us better.

That’s why I figure if people in the medical profession wore two left shoes for just one day, they will quickly be taught what it’s like to live (and work) in pain—and hopefully consider their patient’s pain and symptoms/complaints more thoughtfully in the future.

If they ever needed a refresher course? They can wear two left shoes with tiny pebbles added for an extra reminder! What a lesson that would be… Ouch!

It would be a simple, yet effective experiment… don’t you agree?

Wouldn’t it be great to suddenly start seeing people in the medical profession wearing two left shoes?

I’m just sayin’!