The “Kissing Disease” Linked to Some Adult Chronic Illnesses & Diseases

The Epstein-Barr Virus, aka the “Kissing Disease” or “Mono(nucleosis)” has been linked to several chronic illnesses and autoimmune diseases–including Fibromyalgia, Multiple Sclerosis and Cancer; according to an interview with Dr. Henry H. Balfour, Jr. MD, Professor at the University of Minnesota/Lab Medicine and Pathology Department.

Watch this news clip, courtesy of 11alive.com, which interviews Dr. Balfour as he explains his theory:

 

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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!

53baef4e3a3ac_-_cos-02-summer-snacks-de

 

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!

What Most Doctors Don’t Know About Social Security Disability – And The SSA Doesn’t Tell You!

I had a follow-up doctor’s appointment a while back. I told him about the last two months health-wise, and brought him up-to-date with my most recent Social Security Disability Hearing and told him that it probably wasn’t looking good for me… Again. As usual, he couldn’t understand why I was still fighting; and then we continued on with my appointment.

doctor-patient-consultation

I was about to leave the room and something popped up in my head (I love how my brain works now). I stopped, and asked him if he ‘knew of a form I read about online that Social Security apparently wants from doctors. That for some (ridiculous) reason, the SSA doesn’t really give too much weight to short letters written from the doctor; but this “Residual Functioning Capacity” form (linked below) is pretty important… Apparently, it can be the deciding factor in some cases?’

I don’t think my brain said it as eloquently when I spoke, but luckily he understands me–even when I babble and slur.

It turned out though, that he didn’t really know anything about this form (he ‘thinks he heard of it’, he claimed, but asked me to send him a copy)! I can’t blame him for not really knowing about it honestly. A doctor’s word should matter to the courts when it comes to treating and supporting his or her patient–and Social Security should use any records or letters put into evidence, as long as they detail the diagnoses and note whether or not they consider the patient permanently disabled.

But if a doctor’s letter doesn’t entirely count as far as the SSA is concerned, why hasn’t this practice been changed?

0328eaa9-e829-4681-a268-1485280d3bd0_400_282

What concerns me is how many doctors don’t seem to know about this form (or how to file for Disability). They believe Social Security should take their word as gold that their patient is permanently disabled. But Social Security is basically stating, ‘Your letter and word as a physician isn’t enough, we want you to fill out an eight page form explaining, in detail, what their disability entails’.

With today’s technology, why can’t someone contact the doctor if they have any further questions (beyond the medical records)? Wouldn’t it be better to have a more personal account of a patient rather than make them fill out a detailed, “Can your patient lift 5/10/20 pounds on a regular basis – if so/not, please explain” form.

Instead, everyone’s fate rests on the hand of the SSA’s expert medical witness’ testimony (whom may or may not specialize in your illness(es)) by reading only the doctor’s notes–yet not hearing from the patient themselves. Therefore, they are basing their opinions on medical records that may or may not be detailed and complete.

Can you imagine the scores of people that keep getting denied Social Security and are constantly struggling, becoming homeless, and even dying because this ONE FORM wasn’t filled out by doctors–most likely because they didn’t know that it existed in the first place? (Note: When I tried finding it through the Social Security Website, I kept getting a “404 Error” message every time I tried to reach the page – It does exist though – see below for the link!).

PLEASE, everyone, SHARE this page! Tell your friends that are fighting, or about to start their fight, for their Disability benefits to print out the RFC form linked below–and make sure your doctor gets a copy. Have them share it with their colleagues!

Help stop this insanity!
PH

There’s so much I would have loved to have known when I became ill enough to be ultimately forced to apply for Disability. I truly hope that this helps someone so they don’t have to go through what I have… and still am because of poor medical treatment and recordkeeping.

I eventually began searching online, rather than the SSA website for the form, and finally found a copy that can be printed out HERE (pdf version). I’m hoping that doctors will start hearing more about the RFC form–and start helping their patients with disabilities win their Disability fight in a timely manner by filling it out.

I’m hoping even more that Social Security catch up to the times and realize that today’s doctors aren’t old school like Social Security still is (Come on, the system has barely changed since 1935–Over eighty years!). Doctors just don’t have time with the amount of patients they have to take care of today to fill out eight-page reports. Detailed notes (including via telephone) and detailed record keeping should be able to properly show a patient’s health status without question; while a patient’s testimony should be taken strongly into consideration–especially if a case lasts longer than five years.

No one should have to wait more than five years for their benefits.

Both the Social Security System and the medical industry need to create a simpler system that both can work with, so people that are truly disabled get their benefits in a more timely, and less stressful manner.

It is our money after all.

Until the laws get changed though, get that RFC form to your doctor’s office and ask them to fill it out along with your Disability application.

Good luck!!!

In case you missed it, click the link for access to the SSA’s RFC form: https://secure.ssa.gov/apps10/poms/images/SSA4/G-SSA-4734-U8-1.pdf

Guilty Until Proven Innocent

UPDATE 12/2/16: My attorney dropped me with only two weeks before the deadline to file in Federal Court. We’re scrambling to find an attorney willing to take my case because of the state of limbo I am currently in. There’s a good chance I’m going to lose everything because of this. I haven’t given up, I just need to regroup and come up with a plan–quickly. Prayers are desperately needed.

UPDATE 10/28/16. Denied yet again by an ALJ. Appealed and SSA sided with the judge. Now I have to file a civil suit in Federal Court (again) to either have it remanded back to the SSA, overrule or (heaven forbid) side with the denial. The SSA still doesn’t know anything other than what they see on paper – and won’t seem to connect the difference between my past medical records and current ones – even though the symptoms have only worsened, never contradicted.

UPDATE 5/28/16: The decision for my Disability hearing came in, and I was denied again. I wasn’t surprised at all, albeit a bit let down. Of course, I appealed again.

Come back and visit to find out any future updates for my continuing fight for Disability.

2016 marks ten years since I first filed for Social Security Disability. I wish I could say that I’m the only one going through this fight that I never expected nor wanted to be in, but unfortunately I can’t. Too many people have gone broke, homeless and even died during their fight for their income… Too many others just give up the fight altogether, their lives ultimately ruined.

How incredibly insane is that? To have to fight so hard for something that you paid into your entire working life, only to be told “No”, over and over again when you need it the most!

I had my (technically) fourth hearing in front of an administrative law judgeSSDC-Denied.png a few weeks ago, and if I were a betting woman, I’d say my chances are pretty slim on being approved.

Again.

I’m hoping there’s a saving grace after that fiasco of a hearing… A last minute letter that my lawyer wrote to the judge pleading in my favor. Also, I recently went to the DMV and got a receipt that proved that I received a Permanent Disability Placard as early as August 2005 (they’d have to go to archives to get any older information). Some months before my alleged *Disability Date, and **Date Last Insured (DLI). A very nice representative there even signed and stamped it to make it as official as possible to try to help me <3.

I’m hoping that the above will help the judge realize that I was already considered disabled by my then-doctor, way before my listed Disability Date on my application.

Guilty until proven innocent. That’s what it feels like for me to fight my Social Security case. I think what offends me most is that the SSAguiltyinnocent thinks they know better about my disability (and inability to work) than my doctors and me. My last judge even observed an old manicure (that I had gotten with my daughter for her 16th birthday – my first in a couple of years), and it influenced his decision that I wasn’t depressed enough.

I can’t afford my own medical experts, because I haven’t worked since 2005 ($500+/hr is a little steep for a family with one income in California). Still, I don’t understand why I should even have to hire experts when I have letters from FIVE doctors, stating that I’m permanently disabled for one reason or another.

The most important letter in my mind though, was from an ex-doctor I had during the time in question (my Disability Date). I forced myself to call him a while back, after yet another denial from the judge. I explained to him that I finally got my diagnoses (of Multiple Sclerosis and Lupus and more) after leaving his office and the medical group. Then I mustered the nerve and asked him to write a letter to the judge on my behalf, and tell them whether or not he considered me disabled during that period. He agreed (even though the letter was pretty vague, he did tell the SSA that he considered me permanently disabled during the time in question).

Side Note: If you read about the history we had in the past, that was not an easy phone call for either of us to go through. But man, it felt so good for me to let him know that it wasn’t all in my head like he and his colleagues kept trying to push on me for so long! (To read more about that, go to Chronic Hell: My Story).

If you have never applied for Social Security (I truly hope you don’t have to until you retire), don’t get too cocky and think you’re going to win right away. I’m sorry, but it’s true. It just doesn’t happen as easily as that very often at all. Very few doctors know how to word their records for the SSA to easily determine Disability (If it did happen that way for you, congratulations! You are definitely one of the lucky few!).

Fraud-in-Dictionary.jpgI hear that the first few denials are to “weed out” the fraudulent cases. It takes months, even years to go through the appeal process after you do get denied; and then just as long to repeat it all over again. It’s a truly vicious process.

This all, of course, is also supposed to weed out those “frauds”.

I keep wondering how long you have to fight to prove that you aren’t a fraud. I’m really hoping ten (years) is my lucky number. I’m not getting any younger, and definitely not getting any healthier.

Even though I have a mountain of records that show that I had symptoms of all of my current diagnoses way before I became disabled; I had no big, “Hey, she’s a winner!” official diagnosis before my DLI that wowed the Social Security Administration enough to approve my application… Or so they try to claim (my first denial was because their examiner said I had a “social life” – I went to a few music concerts and high school football games, both seasonal at best).

Because my (ex)doctors didn’t really look too hard for what was wrong with me back then (and kept horrible records), their favorite go-to diagnosis for me was Depression. Man, that word ticked me off every time I heard one of them go back to that! Rather than actually take a test to see what was really going on with my actual symptoms, they kept referring to Depression. It’s the one big thing that I had back then that was documented enough to keep my case open though, so I have to keep hearing it.

Am I depressed?girl-1098611_960_720.jpg Of course I am (especially after dealing with so many bad apples in the medical profession, and of course, my fight with the SSA)! So many scary symptoms were happening to me that were basically ignored by my ex-doctors back then; and at home everything was getting turned upside down. No matter how many people were around me, I felt so alone; scared.

Even while I was sick with a case of Meningitis in the hospital in 2005, they still kept pushing Depression. Apparently, it didn’t help that I fired my doctor from my hospital bed. I guess you’re not allowed to make big decisions like that when you’re sick. If I was a litigious person, I would have sued them all for malpractice – Sometimes, I wish I would have.

All I ever wanted was to feel better again so I could get back to my life… I actually loved my work. I really miss running my own company, being my own boss – Something I worked really hard to become until my illness took it all away.

Most of all, I miss me.

I can only hope that this new judge can see through all the craziness in the form of my case (including the comments made to me by the last judge – I’m SO glad he retired last year!), and realize that there is so much more to this picture than there is on paper. I also hope that she’s compassionate enough to finally stop this part of my roller coaster ride.

I’ll find out the answer in about a month. Fingers crossed.


*Disability Date – The last day of actual work.
**Date Last Insured – The “date last insured” (DLI) is the last date that an individual is eligible to receive Social Security Disability Insurance (SSDI). In order to receive SSDI, an individual must pass the “recent work” test. (from Google Search)

 

Prescription Commercial Propaganda

News Update (4/26/16): Biogen has announced that it will be taking down their Tecfidera Commercial. For full story, click here.

movies-at-home(Originally Posted 3/13/16) You’re sitting there, the kids are in bed, and the housework is finally done. You’re relaxing on your sofa enjoying a late night snack, while watching an episode of your favorite TV show. You are just about to find out whodunnit; your adrenaline is pumping and your eyes are glued to the screen. Then it happens.

A station break.

This one in particular happens to be about a medication that is offered to people living with Multiple Sclerosis. The commercial says the medication is made to cut relapses in half, while it shows a video of a woman that apparently has Multiple Sclerosis; smiling, hiking, swimming and even enjoying an evening at an amusement park. It all looks so wonderful, carefree, and happy! How fabulous it all seems to be.

Excuse me for saying so, but what a load of manure!

I’m not saying that the medication is bad. I’m not saying anything bad about any of the medications that have been made to treat the symptoms caused by Multiple Sclerosis. At least they are trying to find a cure.

My issue is that the person in the video is portrayed as a happy-go-lucky woman that is living with MS, and able to perform normal activities just like healthy people are easily able to do.

It’s nowhere near the truth for most people with MS in the real world! I think it’s disrespectful to people that live with Multiple Sclerosis, because it misleads the public into believing that something like this can magically happen for everyone living with the disease.

We wish that was truly the case!

While some people are able to have some benefits by taking some of these medications (MS medications in general, not one specific brand), not everyone responds to them as well as these ads claim. In fact, a lot of people don’t have many benefits from them at all, if any.

If you are someone that doesn’t live with MS (or any other type of chronic illness or disease), after seeing a commercial like this you would think that it was great that there’s a medication for people living with the condition, right? Have you ever actually listened to the commercial though? If not, you should. The next time you see that commercial (or any commercial advertising medications), listen to it very carefully (Or you can just watch the YouTube video I found for one of the commercial’s posted above).

The truth is, if pharmaceutical companies were to take a video of actual people living with Multiple Sclerosis (Lupus, Fibromyalgia and so many more disabling illnesses), you would see many of us using mobility and other assistive devices. You would see people that are fighting every day just to try to have a semblance of a normal life. You would see us saving our energy just so we could go someplace, like an amusement park… or maybe just the supermarket.

All of this while we are dutifully taking our medications.

But that wouldn’t make for a very good commercial, now would it?

 

Symptom of "Flushing"
Flushing symptom – A common side effect of the medication, Tecfidera.

 

Flushing2

 

Doctor Writes A Letter To Patients With A Chronic Illness

cropped-doctor_talking_with_a_patient.jpg

Why aren’t Medical Schools teaching a class on Doctor/Patient relationships and the insecurities and communications (and miscommunications) that happen between them?

I know it would have been a much more pleasant experience for me all those years, if a doctor would have had the guts to just say, “I’m sorry… I can’t help you. Please find a new doctor.”

It would have been so much easier than their favorite go-to, “Go see a psychiatrist”.

After the scores of “insecure” doctors I have been to over the years, I think I just might, thank you.

Click to read the letter, “A Letter To Patients With Chronic Disease“, by Dr. Rob Lamberts in his blog. He actually sounds like he gets it!

Feel Better Soon

feel better soon

When you live with a chronic illness you hear that all the time. “I hope you feel better soon”. While it’s a truly appreciated sentiment, it’s also a phrase that is hidden in plain site, showing how much most people truly aren’t aware of what it’s like to live with a chronic illness.

“Feel better soon” implies that someone has an illness or injury that they will eventually recover to their normal activities. A person living with a chronic illness doesn’t get to do that. We are living a constant loop of pain, sickness, and surprise symptoms to the point that we wish we literally and finally could just simply “feel better soon”.

I saw someone on Twitter speaking about the pain she was having due to an illness she was living with (Rheumatoid Arthritis). As I wrote my comment to her I was about to end with saying, “feel better soon”, when it hit me (well, I’ve thought it many times before, but this time it really hit me)… Instead of saying the norm, I should say what she and I are really hoping for. So instead I finished with, “I hope your pain lowers soon”.

When you live with a chronic illness, you know that unless you are one of the lucky few that go into full remission, the pain never completely goes away. That doesn’t even include the fatigue, cognitive issues, mobility issues and social isolation, financial stress, family stress; everything takes a bigger toll on the body of the majority of people living with a chronic illness or disease.

Even more so with invisible illness/diseases (An illness that a person lives with, but generally looks healthy to the naked eye). Even though there are people that are truly sick, it’s not unusual that they are treated with a more, “Come on, you can do it. Just try a little harder!” attitude. (cough) “A brother’s best friend’s aunt has the same thing, and they are doing just fine”. Little do they realize that there are different stages of chronic illness and diseases; and that no two people are alike when it comes to any given diagnosis.

Most people don’t even realize what it took to get the energy just to take a shower today.

Trust me when I say I’m as tough and stubborn as they come, and I have been through the wringer a few times over since I have been in “full chronic illness mode”. If someone says to me that they hurt too much or can’t do it anymore, that pretty much says it all in my book.

I still have dreams of getting my life back one day, so I can only imagine what it’s like for someone else.

If only we really could just feel better soon.

Doctors That Are Patients, Too

NeuronsAll too often, people that live with a chronic illness have a difficult time explaining to their doctor what their pain feels like; the fog, the numbness and tingling, the fatigue or whatever symptom they happen to be experiencing that week. We tend to become frustrated because we see the looks that a doctor gives us, most likely because our explanation doesn’t sound anything like they are described in medical school.

We as patients though were never taught how to properly describe a symptom; so basically going into an appointment can be like going to a convention where no one speaks the same language – which ultimately leads to nothing but confusion and frustration, and a lot of wasted time.

It’s extremely rare to find a doctor that understands exactly what we’re talking about. Unless, of course, they actually live with the symptoms we have been experiencing.

If you live with Multiple Sclerosis, you may have heard about a doctor named Terry Wahl, MD. She is the inventor of the “Wahls Protocol” (Amazon, Paperback $10.97), a diet she created to help stave off her symptoms of her progressive MS (which worked wonders for her), ultimately hoping to help others MSer’s do the same.

More recently, I have learned about Vincent F. Macaluso, MD. He is a neurologist that was diagnosed with MS while he was going to Medical School. Understandably, his specialty landed toward Multiple Sclerosis after school; and more recently he wrote a book called, “Multiple Sclerosis From Both Sides of the Desk” (Amazon, Paperback $24.73 USD)

Dr. Macaluso stated in an interview (below) that having MS influenced his practice, not only because he can relate to his patients in more personal manner, but also because he knows what alternative medications can be prescribed to help some of the symptoms. One of those medications, normally used for Attention Deficit Disorder (ADD), helped him finish his new book, because it was able to help him with the weak focus that is commonly found in patients with MS. In writing his book, Macaluso said he hopes to encourage clinical trials of similar drugs for MS, and spread awareness of the realities of MS patients among his colleagues, and MS patients and their families.

After hearing what Dr. Macaluso had to say in his interviews, I’m really looking forward to getting a copy of his book for myself so I can hear what else he has to say. Check out two of his interviews that are posted below:

  • Interview #1 – with Vincent F. Macaluso, MD; Credit to: Fox News Health

(Unfortunately, I was unable to embed this video, so please visit the link below to see the full interview with Dr. Macaluso on Fox News Health):

Fox News Health | Interview with Vincent F. Macaluso, MD

  • Interview #2 – with Vincent F. Macaluso, MD; Video credit to: Fox5NY 

If you do happen to get a copy of his book, come back and let me know what you thought… I’d love to hear your reviews!
Good reading!

When I Grow Up, I Want To Be…

bobby-car-349695_960_720When we were children growing up, our parents told us that we could be whatever we wanted to be – A firefighter, policeman, doctor, nurse, lawyer; even the President of the United States! They told us that all we have to do is work hard to achieve our dreams by being honest and kind, do our homework and chores, and eat all of our vegetables.

Our imagination went wild because of that, too. We happily acted out our futures with our teddy bears and dolls how we wanted to make the world a better place; even imagine getting married and having babies of our own one day.

Never has a child told their parent, “When I grow up, I want to be disabled. I want to be tired and in pain all the time, have sleepless nights and spend lots of time and money in the doctor’s office and at hospitals. I want to take all kinds of pills that have the possibility of killing me; and basically gamble on my quality of life.”

One day you wake up though, and suddenly your life has turned out this way. You thought you did the best you could to take care of yourself, but you didn’t realize that chronic illnesses didn’t work like that.

You start visiting doctors to see what’s going on with you, and if you are really lucky, you get a diagnosis right away. But, if you’re one of the less lucky ones, you are forced to spend years of your life returning to the doctor over and over again, still without any answers… Maybe you even get pushed into categories like hypochondria or psychosis because they think you’re just making everything up.

One day, the career that you did have is suddenly over way before your retirement age. Your family dynamics has changed completely, and your family is now having to take care of you! A role you are definitely not accustomed to, nor comfortable with, but have no choice but to accept it.

Sometimes even the closest families fight and break up, because the financial and emotional stress of someone they love being sick and disabled is devastating and overwhelming.

Then, of course, there’s the fight for your disability payments. People that complain about the DMV should try filing for permanent Disability. You see, it doesn’t entirely matter that you have three or four doctors telling the government that you are permanently disabled and unable to work. No, Social Security has to have perfect records (which most doctors don’t keep to their expectations) explaining your limitations all the way from how long can you sit/stand, to how much weight you can lift at a time.

So many people get turned away because of this. Too many people losing everything they worked hard their entire lives for – while no one in our government has done anything to change this atrocity–except try to take more away from us.

Never has a child told their parent that they want to be a divorced, disabled, homeless person when they grow up.  But sadly, too many lives are becoming just that.

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’!