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:

 

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

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.

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.

Chronic Hell: My Story

Never in a million years did I think I would ever become sick, let alone disabled.11952874_10207797354639852_1809145690500449605_o

I thought I lived a fairly healthy life, even though I now recognize a bunch of little things growing up then that explains a lot today. When I was a child, I remember my mother taking me to the doctor once, but he told her that I just had “growing pains”. So, we basically chalked everything up to growing pains–or just me being clumsy (usually the latter). I had back aches as a young child–and I thought it was completely normal.

When I turned 18, I started getting colds really often, but I was also out living on my own by then. I figured that it came with the broke, young adult life–and part of working twelve hours a day or more at the uncomfortably cold transport warehouse I worked at the time.

A few months before I turned nineteen, I met my future husband. He had a child that almost instantly became my daughter, and we became a family pretty soon after. I was busy with the expenses and hecticness of life with a family, so my plans to go to art college was put aside and work and family became a forefront. My dreams to become an artist had to take a second seat, but I loved my new life, so it wasn’t too much of a sacrifice to me.

Ten days before my 21st birthday we welcomed a new addition to our family. After gaining EIGHTY pounds during my pregnancy (I had a couple of hot fudge sundaes, but not 80 pounds worth!), and going through contractions for three days (not to mention intense back labor); our beautiful daughter was born naturally and without complications at 7 pounds 11 oz., in August 1988.

When she was about two, I kept getting sick a lot, and then one time it just didn’t seem to go away. After a few weeks I finally went to a doctor, and it turned out that I had something I didn’t even know adults could get… I contracted Mononucleosis for the first time in my life (Yep, the “Kissing Disease”, usually related more to children and teens, caused by the Epstein-Barr Virus). Even after I finally started to feel better, I would suddenly get sick out of nowhere (and feel fine the next day). But other than that, I was still a pretty healthy person (or so I thought), and life went on.

At the age of twenty-six my husband and I bought our first house. By then I was working for my family’s trucking company, taking care of everything that my step-dad couldn’t or didn’t want to do. For him though, I was expected to be available 24/7. There was no such thing as a true day off with him – that didn’t mean I got paid for it though – to my step-dad, family worked pretty much for free. In the meantime, I was also taking care of my two kids and maintaining the house and our cars (yes, actually working on them), while my husband worked his job, and moonlighted afterwards.

A year later, I fell ill with acute bronchitis. I went to a doctor that gave me some antibiotics and told me to get some rest. I had no choice but to go back to work though, and about an hour after I got back to my office my airway started to close up. I ended up having to drive myself across two cities to the in-network hospital because in his southern drawl he said, “Somebody has to work” (my step-dad’s statement as I left). It’s funny now, because that was just how he was. After I got to the doctors, I had a couple of breathing treatments, and was finally able to go home. This “somebody” needed a night off.

I was really excited to announce that I was pregnant again in the Spring of 1997. I worked throughout my entire pregnancy even though it was a high-risk one this time (I was never put me on maternity leave). I wasn’t able to keep my blood pressure under control with two kids that were nine and eleven, taking care of house and husband, and helping take care of my family’s company at the same time. My weight gain was pretty normal this time though (Yay me!).

I did have one issue though.

Just a couple of days before Halloween (and with my due date coming on November 1st), I felt this awful, stabbing, pain in my abdomen. I called my ob-gyn, but they told me I was just experiencing Braxton-Hicks contractions and to wait until my final appointment.  I tried to tell them that it definitely didn’t feel like that–that I knew what contractions felt like–but they insisted. In fact they said to me, “We’re the professionals, you’re the patient… We know more about these kind of things than you do”.

Being the obedient patient that I was at the time, I followed their orders and waited until my “final” appointment a week later. I didn’t have any further pains like that night, so I pushed it to the back of my mind.

My appointment came up and the nurse attached heart monitors to me and my belly.  As I’m laying there, quite relaxed, and the doctor bursts in through the door. He quickly takes off the equipment and tells me I have to “Get to the hospital IMMEDIATELY”. In shock, I asked him what was going on, and he told me that both our heart rates were dangerously high–that I had the onset of preeclampsia–and the baby had to be delivered immediately, or we would both die. I paged my husband (hey, it was the 90’s), called my stepdad to tell him I wasn’t coming back into the office; and drove myself straight to the hospital. It wasn’t until about a year later that I learned what Preeclampsia was, and that the stabbing pains I had the week before were actually a symptom the condition.

I knew it wasn’t Braxton Hicks. I wish now that I would have gone to the hospital after I talked to the ob-gyn’s office, but how was I supposed to know?

My beautiful little girl was born that afternoon at 8 pounds, 9 ounces. It turned out that it was really lucky for her that I had that surgery, because the cord was wrapped around her little head. The doctor said that if I would have delivered naturally it would have surely moved down to her neck and strangled her during birth. One disaster averted–and my beautiful bundle of joy came out with lungs like an opera star.

Now it was time to take care of me.

I would love to say that things went perfectly well for me too, but there were a few issues. My heart rate jumped up because of this incredible pressure around my diaphragm when they were putting me back together. Apparently, my heart rate started to rise. The anesthesiologist asked me what was wrong. I barely muttered out that it was hard to breathe. He told me that if ‘I could speak, I could breathe, so calm down or he was going to put me out completely’.  It took everything in my power at that moment to do exactly what he said because it felt like there was an elephant on my chest. It was miserable, but once they closed me up the pain wasn’t as intense anymore–although I felt a little uncomfortable, I could literally breathe a sigh of relief.

I was just glad it was over.

A few hours after recovery, the nurse brought me some ice chips. I ate three pieces that were the size of a Skittle–each about a minute or more apart–and became severely nauseous. The nurse chastised me for eating too many (only three!).

After all the excitement from that, I went to sleep until it was time to feed the baby. Late at night, the nurses kept entering my room and pushing on my abdomen to expel any clots. Because I was bleeding a lot more than I should have, one nurse was really concerned and she called in the charge nurse. The charge nurse didn’t seem too worried, and left the room.

The next day, I woke up with a severe pain in my chest.

It turned out that the pressure that I felt during the surgery was an air pocket that formed inside my body cavity. For two days, I can’t remember anything much except people walking in and out of my room, talking over me like I wasn’t there. I keep asking my family (today) what happened to me back then, and they said the doctors told them that I was just trying to recover from a big surgery. It was weird, because I had friends that went through cesarean sections, and I never heard of them having issues like that. Sure, it takes longer to get over a c-section than a normal birth, but they were normally alert (and obviously very sore) after the surgery.

I could be wrong.

Almost a week later, we were finally allowed to go home.  A nurse removed the staples from my incision, and I mentioned after she pulled one of them out that it didn’t feel right–like it was infected or something. She looked at the area, and said it was fine. Something didn’t seem right to me, but I let it go.

After a couple of days home, I was completely fatigued. I pretty much stayed on the couch to recover and participate with my family. When I took showers, large amount of clots were expelling themselves down the drain to the point that it worried me; so I called my doctor (again… I called before because of other symptoms that didn’t seem “normal”). He said that I was worrying too much, but gave me a prescription over the phone to help stop the bleeding, and told me to just enjoy my new baby. I did, every single moment.

Thanksgiving came, and I didn’t have the energy to be with my extended family; or enjoy the meal that my mother cooked for us all.  Everyone was in the living room laughing and enjoying themselves while I was in the spare bedroom, lying on the floor next to my sleeping baby. Some thought it was rude, but I just couldn’t help it.

I kept telling myself what the doctor said for three weeks now… “Allow myself time to heal”. So I kept trying. Oh man, did I keep trying.

That weekend there was a high school football game we went to see (my husband and I are their “Superfans”). We were going to go to introduce the baby to everyone–but I cancelled at the last minute and stayed in the hotel room with the baby. I just wasn’t feeling well at all. The rest of the family went on to the game without us while the baby and I slept until they came back.

As we left the hotel the next morning, I could barely walk. I slowly inched my way to the car from the room. It was the holiday weekend still so I couldn’t call my doctor (yet again–even I was beginning to feel like a pain in the rear), so we just went home so I could keep “allowing myself to heal”.

Later that night I was relaxing on the couch with the baby, reading a book to her. I was sitting next to an opened front door on a nippy November night because I was so hot that I had started to perspire. I didn’t think anything of it as I bundled up the baby, then continued to read. A few minutes later I started perspiring so profusely that I finally had to put the book and the baby down, and went into the bathroom to wipe myself down. I was soaked!

I started dabbing the cloth all over my body, and when I reached the incision I carefully went around the wound, trying not to touch it. My eyes grew wide in horror when the cloth came up covered in blood. I called out to my husband, and we rushed to the emergency room. It turned out there was a cyst the size of a grapefruit that grew under the incision and it finally burst.

For six months, all my obstetrician kept muttering over me as he stuffed my wound with at least six feet of cotton was, “I can’t believe this… In all my years as a doctor, I have never seen anything like this before”.

Every. Time. I. Saw him.

It took over six months, but I was finally starting to feel a bit better–except that I was still tired ALL THE TIME. I started noticing low grade fevers that lasted for weeks that had no explanation when I saw a general practitioner about it.  He just told me to rest, which I was already doing plenty of.

I basically accepted all the weird little things happening to me as my new normal. Even though I didn’t have any of these experiences before my pregnancy, I just figured I was not in my twenties anymore. So I just did what any other mom with three kids would do, and got back to work.

By the time the baby was two, we realized it was time to move out of our tiny 807 square foot house and find something that could fit us better as a family. I was still tired all the time–but trying to move on from my c-section drama–so to me life was wonderful, even though I couldn’t seem to shake of that tiredness.

We had contractors coming in and out of the place while I was flopped down onto the couch, exhausted just from watching them work. All I could do was keep apologizing to them for being so rude–and kept falling asleep while these people roamed my home. It took several months to sell the house (we had one lazy realtor that we finally let go after the contract ended); but we eventually sold it in ’00, and moved the family thirty five miles away from my hometown.

After a few months living at our new place, I was starting to feel really good. I mean, REALLY GOOD. I felt better than I had in my ENTIRE LIFE! I had what almost seemed like this endless amount of energy, so I started walking and hiking–even shooting hoops with my husband. I was happy, I had the family that I always wanted, my home and finally, my health was better than ever.  Life was PERFECT!!!

After a couple of months, I felt it was time to separate from my parents’ business so I could start doing things that I wanted to do. I took on a small job delivering newspapers, and then delivering pizza’s (eventually helping the owner with managing the business) until I figured out my next move; and take care of my kids during the day. I actually enjoyed my little job at the pizza place–only because it reminded me of being a teenager–and it was the perfect way to make a few hundred bucks a month at night. My nephew even came to live with us for almost a year, so I got to experience having a “son” to raise for a little while.

I was pretty exhausted, but I truly loved my life!

Then one day I woke up. When I stood up out of bed, my feet felt like I was stepping on glass. It would ease up enough to go on with my day. It happened daily, along with the back pain that I had already been living with my whole life came back with a vengeance and started increasing in severity. It got so bad, that I quickly went back to the crooked old lady mode again. When I was at work one night my boss looked at me and said, “What’s wrong with you?”.  I kept having so much pain going up and down my body every time I tried to walk that all I could say was, “I don’t know”; then grabbed the counter to lean on until the pain subsided.

The baby was almost three years old by then. I couldn’t lift her up or carry her anymore for fear that I would drop her. Finally, I realized something was seriously going on and went to the doctor after about three months of basically wishing it away.

The doctor prescribed some Ibuprofen and muscle relaxers, and scheduled surgery to remove a small lump in my back—hoping it was the cause of my pain. I told her about my experience with my c-section because I felt it was an incredibly unusual experience, and she referred me to a rheumatologist and an orthopedic surgeon.

I had the surgery and the tumor was benign. It was just a Lipoma (fatty tumor). I was expecting everything to be better–but during my recovery the pain was increasing–not getting better.

I started waking up, completely and literally frozen in pain. I couldn’t move a single muscle, breathing would make scream out in agony. Once I was able to move, I had to do it carefully. Moving more than a couple of inches at a time would cause so much pain , then finally start slowly subsiding again. The pain never went away, but stayed at a steady lull for the most part—enough for me to try to get things done. Barely.

Then electric shocks in my neck and shoulders started up. My pain would increase whenever I tried doing even the simplest of things. Sitting in a chair or walking became unbearable… Embarrassingly, I was forced many times to lay down in restaurants, etc.,  because I couldn’t sit up for more than a few minutes. The only suggestion that was ever given to me? Use a donut cushion when I sit.

I went back to the doctor, and while I was sitting in the room waiting for her, the pain—especially in my hips and spine—became really intense. It was so bad that it literally took my breath away, and tears just started streaming down my face. The doctor came in, saw I was in tears and asked me why I was crying. I told her that the pain was so bad, that it hurt just to sit there. She diagnosed me as depressed.

That’s when my journey with depression began, and suddenly chronic pain took a second seat.

For two years I went back to her with new symptoms. In 2003, my hip spontaneously dislocated—and when I fell down to the ground, forced itself back into place.

It was late on a Friday night and my husband wasn’t home, so I passed on an ER trip because I had the same thing happen before to my shoulder (and I was already pretty tired of ER’s already… The doctor I had seen after my shoulder didn’t do anything but tell me to take some Ibuprofen anyway. He said there was nothing he could do since my shoulder obviously was back in place). So that’s why I waited this time.

It was stated on my records that I heard a “pop” — what it really sounded like was a bowling ball dropped on cement, as my leg looked instantly deformed, then normal again.  The following Monday the urgent care doctor took an x-ray and told me he saw a little arthritis in my hip, then sent me on my way.

Since that night, my left leg and walking became an issue… But, I was still able to walk as long as I paced myself — If I wasn’t careful though, my leg would give out right from under me. I dealt with it, but it made my part-time job more difficult, and I had issues with one of my co-managers because of that. So I finally set out to start my own business (I had already been saving some money, so the timing worked out well).

My business became my pride and joy (besides my family, of course). I started a party rental business that supplied bounce houses (moon bounces) to business and residential customers. The paperwork and phone calls were during the week, and any physical work was usually on the weekend. I worked on it every chance I got because it was a home-based business–and every chance I got I also took naps because I was becoming more and more exhausted… Especially on the weekends. But, oh, how I loved it when the kids were so excited when they saw me, yelling “It’s the Bouncy Lady!” when I showed up at their door.

I would help deliver our equipment and take care of the customers, then I’d go home and take a nap until it was time to start work again. During the week, I would do the paperwork and take care of the house and kids (grabbing a nap when needed); and occasionally, we’d even make a delivery to a business or day care (my hubby and I would get there early in the morning, he’d put it down, and then I would do the rest — cleaning, safety instructions, etc.).  It was extremely exhausting and painful. But it was all mine.

I was living my dream. I was living the American Dream.

In the Spring of 2004, I woke up one day and my hand didn’t work.  From my elbow down, it was unusable. It lasted a couple of weeks, then I finally saw my doctor (I called them the day it happened, and they set an appointment rather than suggest Urgent Care). By then it was about 60 percent back to normal. She told me that it was some kind of neuropathy, and there was nothing we could do but try more pills.

During one delivery at an event at a private airport, I started having severe stomach pains. I worked all day in pain, and as soon as the event was over I was forced to leave my family to take care of the clean-up and rushed home to use the facilities. As I was cleaning myself there was blood everywhere (sorry, I promised to tell all). There were several clots on the paper the size of a baseball (please excuse me) and soon after, my family walked into the house. I told my husband what happened and we went straight to the E.R.. They couldn’t find anything except a little residual blood, and sent me home. It started to continue more often, so my doctor had me consult a Gastroenterologist.

During the Fourth of July weekend in 2005, I saw that I was tiring a lot quicker for some reason. Holidays were always the busiest for us, but this was the worst weekend in our company’s four year history. I was so exhausted that it took twice the amount of time for us to deliver a bounce, and I was the only reason for it. I continuously apologized to all of my customers personally, and promised them that it wasn’t something that was normal for us (lucky for us, half of them were “regulars”, so they knew this to be true). I was so embarrassed.

I tried to shake it off, and the following week we went on a planned trip to Las Vegas. While we were driving in the middle of the desert, I started feeling sick. My head began to spin so fast it made me nauseous. It lasted all day, and I finally couldn’t take it anymore so I called the on-call doctor at home for advice. It turned out to be my Primary Care doctor; so I began to tell her what was going on–that I was in Las Vegas, what should I do?

I was shocked when she suddenly snapped at me, telling me she “can’t help me from California!”. I wanted advice from a doctor — MY doctor — on what I should do because I have never been sick this far outside of my home before. She said to stop all my meds and call her when I got back to town, then hung up the phone. I went to bed miserable, in tears. The next morning though, it was as if it never happened. The spinning had already stopped, but I still discontinued all my meds until my next appointment with her.

During the next appointment, she wrote something down on her clipboard after I told her everything that happened in detail. She was still behaving rather snarky to me. I sighed, and went home feeling like the doctor/patient relationship changed a little that day.

In September that year, I started feeling like I was getting a headache and even a little nauseous. I took a Tylenol and laid down for a nap, expecting to feel better when I woke.

When I woke up a few hours later, the pain was more intense than I ever felt before. I was so sick to my stomach I laid back down in bed, holding my head, unable to open my eyes because it hurt too much to do so. By nine o’clock, I gave in and went to the Emergency Room. As I lay in the hospital bed quietly moaning in pain, they performed a spinal tap and eventually diagnosed me with Meningitis. I managed to give them some of my memorable medical history after they gave me some meds and IV antibiotics; and they admitted me to the hospital.

The next day, my attending doctor immediately started talking to me in an accusatory tone, as if I did something wrong. He told me that he talked to my primary doctor; and she had told him that I never had a dislocated hip (or separated, whatever you want to call it)–even though she wasn’t the doctor that treated me after the fact. I told her everything after following up with her after my visit to the urgent care, but apparently she either didn’t listen to me, or just assumed that it was impossible for a hip to separate/dislocate “spontaneously”. She never expressed her thoughts to me that she didn’t believe that my hip separated/dislocated (which, in hindsight, explains why she never ordered any further tests, except referring me to a rheumatologist)… had I known, I would have made sure she understood exactly what happened–especially since the pain was the worst I ever felt since giving birth.

I called her from my hospital bed to ask her what she said. In a rather smug tone, she said “Yes, I told him it didn’t happen!”. She literally sounded proud of herself, behaving as if I actually did lie about what happened to me! I will swear to anyone ON A BIBLE that it is exactly what happened!

So, after my experiences with her in the months before and now this, I fired her on the spot. I had enough issues going on with me that I needed someone who was going to be on my side, helping me figure out what the heck is wrong with me, not fighting me, especially not in the hospital.

Apparently though, you’re not supposed to make big decisions when you’re sick… Even if it was the right decision for you at the time.

I insisted on a new hospital doctor after his bedside attack, but they called in a psychiatrist instead. The psychiatrist refused a “5150 Hold” (5150 means a psychiatric 72-hour stay in a mental hospital), and prescribed a different anti-depressant (Cymbalta) after hearing my story. He agreed when I told him that I needed them to listen to me, rather than making assumptions.

The Hospital Director refused me a new doctor and instead sent a nurse in with him each time he visited my room. I stayed in the hospital for two weeks because of the meningitis, and this doctor did everything he could to make me feel unwelcome/unnecessary.

On the day I was getting discharged, they gave me an ‘exit Spinal Tap’. They lost my sample. They re-tested the original, two-week-old unpreserved vial and told me that I “should be fine” and could go home. I offered to give them another sample because I still didn’t feel completely well, and unable to walk, but they said they were sure I’d be fine and discharged me.

I walked into the hospital on my husband’s arm, and I left with a walker that became a permanent fixture in my life.

Six weeks after I got home, I slept all of the time because I couldn’t win against the fatigue, weakness and pain that I was experiencing anymore. I went to my new Primary Care Provider (PCP) and I showed him my medical records, with the most recent finally suggesting an answer to years of unanswered questions… Multiple Sclerosis (Turns out, that’s what my ex-doctor had written on her clipboard at my last appointment with her, before everything happened). I told the new doctor that I wanted to be tested for that right away, because I have felt much worse since the meningitis and need some answers. He looked at the records, and sent me for a blood test.

At our next appointment, he told me that I didn’t have MS. I felt my heart drop because I thought I’d finally have an answer after all these years; and all I could ask him after that was, “Did the Meningitis cause some brain damage or something? Why am I like this now… Forgetting things, stuttering, slurring, falling, unable to walk on my own?” He looked down at his clipboard and said, “No”. Then he walked out the door.

Trying to get back to normal we made a few deliveries, but I realized that I couldn’t perform any of my work anymore. I had a difficult time simply trying to swing a hammer to spike a 12 inch nail into the ground because my arms and legs wobbled like rubber. Even though I was using a walker now, I tried to continue to do everything “as usual”. It wasn’t until one of my customers was observing me and asked me if I ‘should be working’ that I realized I wasn’t doing as well as I thought I was.

When I tried to close the books for my business, I realized I couldn’t understand my own paperwork system, especially the problem solving end of it. I couldn’t understand why I was having problems understanding debits and credits when I have done bookkeeping for over 15 years, and why I was having such a hard time keeping organized anymore. When I went to my doctor, I told him what was happening and I needed help. He prescribed me an electric wheelchair and put me on disability for chronic pain and depression; but still had no real answers for all of the symptoms I was having.

I tried cooking meals for my family but I was constantly burning food because I kept needing to lay down to rest. When dinner was finally done, a simple meal would end up taking me three hours to cook. I basically had to re-teach and pace myself to make easier meals without burning them, if and when I was able to cook at all.

I filed for Disability, and started trying out my electric chair. It was helping me get around more, but still didn’t really help with the fatigue and pain… I couldn’t wait to lay back down. Moving my arms to do normal tasks like folding laundry felt like I had 50 pound sandbags on them shortly after I started–if I pushed through, I would start to have severe pain and symptoms that felt like I was blacking out.

I was finally able to finish closing my books for the 2005 season by March 2006, and we had already stopped taking calls or making deliveries months before. My body just wouldn’t let me. The Bouncy Lady was no more. I still have my equipment to this day though… I couldn’t bear to part with it in hopes that one day I would suddenly wake up and feel well enough to do it again.

March 2007.  My husband finally talks me into getting out of the house for a night after a almost a year and a half of going nowhere. I didn’t really feel very well that night, but it had been a while since I had meningitis–and even longer since I saw this band play–and with everything going in my life, going out just kind of stopped for me. Although I had the electric chair by now I didn’t really feel well enough to go out and have fun anymore, so I basically confined myself to small errands and going to the doctors.

I hated feeling that way, but it became my “new normal”.

It took me forever to get ready. Primping my hair and putting on my makeup took so long and caused so much pain that I almost decided not to go. But I finally got ready, and we drove out to the pub where the show was playing. I parked my wheelchair right in front of the tiny stage and nursed my drink. The band was announced, and they ran onto the stage and immediately started playing. Everyone around me starts to jump up from their chairs, crowded around me, and rock out to the music. I’m sitting there with a smile on my face, and began immersing myself into the music.

It was the first time in a long time that I felt something that gave me so much joy (besides my family, of course). After the encore, the drummer reaches out and hands me his sticks. I grasped it into my hand and just looked at it for a minute. Something like that has never happened to me before, so it was kind of exciting! I also met a woman there, and she was just the sweetest thing. She wanted to grab a copy of the set list for me, but someone got it before her. I told her it was fine, because I got the stick, and that was even better. Then she grabbed it from me, and had the drummer sign my new drumstick!

I thanked her, and told her that she helped make my night (she had no idea how true that was). I almost felt like a princess! My husband and I were going back to the car, and under the streetlight, I’m holding a rose (it was St. Patty’s Day) and the drumstick in my hand feeling like I just won a pageant, smiling ear to ear. I told my husband that I would love to be able to have another night like that, and I didn’t want it to end.

That’s when he told me that they were playing again the next night about an hour from our home. I thought about the drive for about a second, and then I said, “YES!  Let’s go!”. I noticed that the singer recognized me from the night before, and he kind of winked at me. Suddenly, I almost felt like a teenager watching this huge rockstar, screaming and crying that I can’t live without listening to that music; and everyone around me, is talking to me and sometimes even hugging me telling me things like, “Aren’t they AWESOME? Aren’t these guys the BEST?”. Well, it didn’t really happen like that (except for the last part), but if I was a teen-aged groupie, it could have!

That weekend though started my love and new chapter in my musical adventure. It kind of gave me an excuse to let fun back into my life (and try to beat the depression I had due to my illness and what it took from me).

If I told you how far I have traveled over the years to see this group, you’d probably think I was crazy (it was definitely not the smartest thing that a person in my condition could have done, but it was the best therapy for me at the time (besides art and crocheting). If you met the band and got to know them like I did though, you would completely understand why it all happened to me that night. I know I’ll never forget how special they, and their families have made me feel since that day.

Anyway.

Sometime around April, my doctors finally came up with a diagnosis–or so I thought–Fibromyalgia. He told me to look it up online, so I did… which might have been his biggest mistake. When I say mistake, I mean that he opened my world up to the amount of medical knowledge that was on the internet during that time… I have been an internet fiend since the mid 90’s, so this just might have some answers for me. I looked up Fibro (the short term for it), and found that it explained some symptoms, but not others. So, my doctor suggested that WE keep looking. Internet before me, I started typing in my symptoms.

Everywhere I turned online, Multiple Sclerosis and Lupus kept popping up. But my doctor told me I didn’t have MS, so I kept skipping that suggestion. And, the very little I knew about Lupus was from watching the old soap opera “One Life To Live”, where Meghan died from complications from Lupus (Kidney Failure, to be exact); and surely, I couldn’t have that. But the one thing that I knew for sure was that Fibro hardly explained all of my symptoms–including my hip separating/dislocating, or why my hand suddenly stop working, continuously dropping things. So I kept searching the internet, and started bringing my findings to the doctor. He even started agreeing with my findings. One time, I even taught him something he didn’t know the most recent facts about, and then he said, “You should be on Disability!”. (HELLO, we started the proceedings in 2006!!!)

There was something else that I learned that year.  MS (and Lupus) kept popping up whenever I searched most of my symptoms. I kept ignoring them until one day I finally decided to look up Multiple Sclerosis. It was then that I learned that there was no such thing as a blood test for MS. You can only be diagnosed through a test three ways, and had to have at least two to have a confirmed diagnosis… An MRI, a Lumbar Puncture (spinal tap) and an Evoked Potentials Test.

There was no such thing as a blood test for MS!  My doctor lied to me!

I was beginning to feel so tired of fighting alone, so I started looking to see if there was anyone I could talk to online. I noticed there were some chat forums that you could go to, but nothing that really helped anyone because they had to wait so long for a response. I kept seeing posts about people feeling alone with their illness, and I felt exactly like them. But no one answered them. So that moment, I decided that one day I would find a way to bring people together that are sick like me, and help them not feel alone anymore. But, I still didn’t have any real answers on how to do that, or any answers myself yet, so I promised myself I would find a way to help others after I finally got a diagnosis.

Once again I took my findings to my doctor, this time asking him why he told me that a blood test said I didn’t have MS. He was taken aback a little, then simply suggested I see a neurologist.

Every time I went to their neurologists to test me for MS, they would only walk me down a hall and tell me something like, “I’ll see you next appointment”. By the next appointment, they would tell me do the same thing, still without ordering any tests or even considering the only reason why I’m there. I changed neurologists twice, and by then I started giving in to the fact that my doctors just weren’t interested in helping me figure out what was going on with me anymore. Especially when my PCP and the Rheumatologist–in the same month–said things to me that made me realize they were just there to solve simple solutions, not actually care about me and my health… The rheumy even asked me, “Why do you want something wrong with you so badly?”.

That’s when I realized it was up to me, and me only, because they weren’t going to help me. Even my family had their own lives to deal with, so it had to be me.

By October (’08) of that year though, a new fire started in me. I was tired of people that I loved looking at me like I just gave up. I stopped going to my old rheumy and found a new one (that I still have today). When I went to him, I told him everything that I told you here today… I told him that I was never properly tested for MS, and that the only real explanation I had was Fibromyalgia and Degenerative Disk Disease. I left him with my records that day not expecting a miracle, because he didn’t say much that day except get me me up for a second appointment.

I went to it not expecting much, but this time it was different than my old appointments. He told me that he didn’t think that I had Fibromyalgia. I felt the blood rush from my face, because I thought it was going to happen again. Then he continued on and said that he thought I may have a Mixed Connective Tissue Disease or Lupus. When I heard the word “Lupus”, I thought back to all of my research and how many times that word popped up. I told him about the research that I already had done on the subject, and that I couldn’t believe that he was saying that he thought it could be me (even though I actually kind of could)!

His office treated me like I was a real patient, finally, rather than some “kid” trying to score some pills and attention. I kept going back to the primary care provider, telling him what was going on, and he just kept telling me to go see a psychiatrist. Ha ha, I was getting my answers finally, and that’s all you can say? I slowly started trying to wean myself more and more from that doctor, until one day my husband starting having some issues of his own.

I had my own issues, but he needed help with his too. I made the decision to continue to take care of my health, but make sure to help him get answers for his (NO WAY was I going to let him fall through the cracks too!). His symptoms were getting worse and the (same) doctors were telling him things like he had cluster headaches, or just plain migraines. I went back to the trusty internet every time, then went right back to the doctors telling them it didn’t answer his symptoms; keep looking. They eventually listened to me after I told them that he had symptoms that were closer to a nerve issue called Trigeminal Neuralgia. They took away the migraine diagnosis, and started treating him for TN. I requested that they give him an MRI, but they refused.

But, yep, I was the one that had to diagnose my husband! In fact, to this day he is still being treated for TN. (The good news is that it’s stable today, with the exception of some breakthrough pain once in awhile).

In the meantime, my doctor (PCP) keeps telling me more and more I’m just depressed, while I’m just getting upset that they aren’t helping me, now my husband, and even my mother (who eventually decided to leave him after a year and a half), to the point that I had to research everything myself to get help from them anymore! He even said in front of my oldest daughter during one appointment, “Promise me you’ll call the hospital if you start making plans to kill yourself”. NEVER had I told a doctor that I planned on killing myself; where on earth did he EVER get that thought into his head?! My daughter and I just looked at each other, as if to say, “Did you hear what he just said?”.

I was stunned.  I couldn’t help but laugh after that appointment.

Then, it finally happened. My husband was rushed to the ER one day via Ambulance because he suffered a sudden Trigeminal attack. I received a phone call from his phone, but the only thing on the other end was the sound of him groaning in pain. I had no idea where he was at the time, and finally someone took his phone and kept saying in broken english, “27222, 27222”; “27222, WHAT?”, I kept asking. Then I heard a familiar chime and realized where he was.

I called “911” and directed them to the 7-Eleven that my husband liked to go to near our home and rushed there myself, making an illegal U-turn (safely) in the middle of a busy street to get to him as quickly as possible.  I beat the paramedics there. I entered the store and he was in the back just standing there, motionless, unable to speak; his face was red from the pain. His eyes were tearing, nose dripping and his mouth was slightly open with a tiny bit of drool coming out of one corner. I explained his conditions to the EMT, and they put him in the ambulance and drove off to the hospital. By the time we got to the hospital, my body began to give out, but I was ready to do whatever necessary to help my husband.

They gave him some morphine and an IV, and the episode finally stopped. He was stable so they told me they were going to send him home. I stood my ground as I told them that there is NO WAY we were leaving unless they take an MRI like I had been begging everyone to do for over a year. They finally agreed, and then sent him home without reading the results. I didn’t care, because at least he was finally given one, and we would discuss it with our doctor when we saw him for a follow-up appointment. His current emergency was over at least.

First thing Monday morning, our doctor called and asked if my husband was okay. Something he had never done before. I said, “Wow, why do you care all of the sudden?” Then he proceeded to ask me if he was talking and walking. I said, “Wait, what are you trying to tell me?”. That’s when he told me that we needed to come in right away; that there was something on the MRI that concerned him. It turned out that he had a tumor in the right frontal lobe of his brain. He was immediately scheduled for surgery, and his tumor was removed in October, 2009.

After his brain surgery, they had to put him back into the hospital for observation three weeks later. I was really upset over everything that was going on, so I called my doctor the next day and asked him if I could take one extra Xanax since I had already taken one a couple hours before (and didn’t know if taking a second would hurt that soon). I needed to stop crying so I could be there for my family.

I’m on the phone with my doctor and I hear a knock on my front door. One of my daughters answered. The Sheriff’s Department walks right into my bedroom. I became upset with the doctor because I just asked to take ONE PILL, not the whole bottle!  He said, “Oh, Mrs. Jones, trust me… I promise, it’s all going to be okay now”.

After everything that I had already gone through all those years, and with everything going on with my husband, this was his only solution. At that moment, I got angry and betrayed, then felt defeated. I refused to let the Sheriff drive me, so I had my daughter take me to the hospital. I “walked” in on my own accord.

They finally won. For now.

While I was lying on the hospital bed in the ER, I was thinking about everything that brought me there to that moment. Why did I have to fire my old doctor in the hospital? Would things have been different if I kept working with her? Would I finally have my answers? What did I do that was so wrong that my life turned out that way? Why did I have to get sick?  Will things ever really be different?

I officially admitted to myself that I was, in fact, depressed.

The social worker walked in, and at that moment I just let them do with me what they wanted.  I figured that it wasn’t going to get any better until I submit to their idea that I’m just a fat, depressed, hypochondriac. So when the social worker came to me, I just answered, “Sure” to all their questions–except that I wanted to kill myself (although, honestly, the idea didn’t sound too bad at that exact moment because of them).

If it wasn’t for a friend from Facebook telling me that everything was going to be okay, trying to comfort me from thousands of miles away, I would have been a lot more scared than I was.

They transported me over a half an hour away from home on a dose of Haldol (that I turned out to be severely allergic to). The next morning they gave me Benadryl and told me to deal with the rest until my pain meds were passed out. After I was able to walk a little better after some of the symptoms subsided, I checked out my surroundings and immediately started going into my normal mode–helping others feel better. I ended up making a lot of friends in the short time that I was there. I also realized that I didn’t really belong there–and the longer I was there, the more determined I was to come out of that place with my fists swinging to get a diagnosis.

When I got out, I told my family that I wasn’t going to take it any longer. I told them that I was going to fight for my answers, and somehow win my Disability case. I also told them that I can’t keep doing this alone, and they realized that I needed more help than I used to let on.

When I saw my doctor, I told him that I wasn’t going to take it anymore either… That I wanted his help, period. Then, that December in 2009, I started having stomach issues, including nausea & vomiting, and bleeding like I was the summer of 2005. My gastroenterologist watched as I vomited in his trash bin, and told me to call my primary doctor to get an authorization to go to the ER immediately to get the nausea under control. He refused. The Gastro was shocked, but his hands were tied (he also diagnosed me with Diverticulosis that day, which explained the bleeding and stomach issues I had going on throughout the years).

I got a call on my cell from my doctor’s nurse a few days later, telling me that he was refusing me a lumbar puncture because he didn’t feel it was necessary (even though he knew that was one of the tests needed to determine MS). I finally lost my cool with them and said that I was “sick and tired of your crap… I’m not taking any more of this from any of you!”, and hung up.

I was driving home from a (different) doctor’s appointment after this conversation, and talking with my daughter about the mistreatment over the years. We were almost home as I pulled into our cul-de-sac and stopped the van dead in its tracks. I said, “Oh, HELLLLLLLLLL No!”, and started backing up my big red conversion van with the really loud back-up beeper down the street and around the corner. I threw it into drive and took off; pulling over around the next block.

I got on my phone to call the medical group and fired them all, and told them NO WAY was my family ever going to anyone that belonged to that medical group again.

Why? Because there were THREE Sheriff sedans sitting in front of my house waiting to take me BACK to the psych ward! Yep, the doctor’s office called the Sheriff because I yelled at them. He was going to try to have me committed twice in two months… because I told them off!

I waited and watched in my rearview as all three police cars drove past my van, laughing with my daughter because we just became outlaws. At that moment, I felt a weight lift off of my back and was ready to kick some rear.

My husband and I decided to go through the expense of purchasing a PPO insurance plan so I could start hiring my own doctors. I kept the Rheumatologist that I found back in ’08 since he was the only one actually tried to help me. I didn’t even care anymore if it hurt my chances with winning my disability case (the only reason I kept those doctors as long as I had), because I just couldn’t take their treatment any longer.

On January 5th, 2010, I had my first appointment with my new doctor. I hoped that with finding all new doctors that I would find my answers. But a week later, I ended up in the hospital because of excessive tingling in my arms. I told them that I didn’t want to be admitted unless they were going to take some actual tests, and they promised they would, so I agreed to be admitted. A day and a half later, they did nothing but routine tests and the doctor came in and told me they were going to release me.

It upset me because I felt they wasted my time (and money). The doctor started explaining his reasons–including that he spoke with my new primary doctor and that she said she agreed with him. I climbed out of bed and went into the bathroom to get dressed. I came out a few minutes later and folded my hospital gown. I left the hospital in tears. (I later obtained my hospital records… The doctor wrote that I was bi-polar because of our “talk”, and that I could also “fold laundry”–I folded one hospital gown (poorly, I might add), not a full load of laundry!)

On the way home, I called my primary care doctor’s office and told them that if they weren’t willing to help me I would find someone who will. The doctor picked up the line and had no clue what I was talking about. She told me that she never spoke to the hospital and to come to her office “right away”. When I got there, she brought me right into a room. She also told me that she really did want to help. Three months later I was in her office for my fourth appointment and she told me about a cousin of hers. She started going into the story of her symptoms and her difficulty in finding answers. Just as she was about to say what her cousin was finally diagnosed with, I chimed along with her and we both said, “Multiple Sclerosis”.

About a month later, I was in her office for a maintenance visit. I was sitting in the chair resting my eyes when my name was called. I went to stand up, but nothing happened. I couldn’t even move my fingers. My doctor rushed out to the waiting room and decides to call “911”, but I asked her to wait until I had someone come and pick up my van because I had my dog in it waiting for me. They kept an eye on me as I sat patiently until my daughter showed up, and then I was transported to the hospital by ambulance. The treating ER doctor remembered me from previous trips, and we had a long chat. He ended up writing in my records that I have needed help for a long time, and something needs to be done to figure out what was wrong with me.

My primary doctor sent me to a new neurologist, who started to play the same games that I had seen with my ex-doctors. I was starting to become discouraged by his attitude and stopped going to him. I ended back up in the hospital again that July because I couldn’t lift up my head from my chest–it just drooped from my shoulders. Guess who turned out to be the on call neurologist at that hospital. Yep, the same neurologist that I stopped seeing three months before.

He asked me what medications I was on at the time, and I had so many that I couldn’t remember them all. I told him that the list was in my records with the nurse. He then began to chastise me for what seemed like ten minutes, because I couldn’t remember what all the prescription names were, telling me that I have “too many cooks in the kitchen” by having more than one doctor. At that moment, I just turned my head and stopped talking to him. He tried for a couple of minutes longer to get my attention, and then he finally walked out of the room.

I was in the hospital because I was in a lot of pain and too nauseous to have to deal with a doctor that had terrible bedside manners. I called my husband and in tears I told him I was ready to go home. He told me to stick it out because they were going to transfer me to a “modern” rehabilitation center. It turned out to be an old nursing home that reeked of urine, loud with the screams of patients huddled in their rooms.

I asked the EMT’s to take me back to the hospital, but they left. I grabbed my walker and shuffled to the nurses station because there was no phone in the room. I called my husband to pick me up immediately. He protested at first, but when I told him that I would take a bus from the valley to our house in my hospital gown, he realized how serious I was. When he arrived, he finally understood why I didn’t want to stay and checked me out.

When we got home, I pulled out my IV and went to bed. I slept for three days–including through my second eldest daughter’s birthday (that broke my heart). What I didn’t know at the time was that I had gotten a really bad infection from the catheter they insisted I have in the hospital (I was given Zofran to stop the vomiting, but the hospital(s) never tried to find the cause).

I was so afraid that they would send me back to that “rehabilitation hospital”, that I didn’t tell any of my family what was going on. They’d come in and ask me if I was okay, and then let me continue to sleep. I eventually fought off the infection, nausea and fever, and went to see my regular doctor a couple of weeks later. Unfortunately, I missed the appointment because I couldn’t move fast enough that day.

The next time I saw her, I had to tell her about all the pain and new symptoms that I had since a car accident I had the month before (I was hit by an uninsured driver).  She knew partially about it when I called her cellphone the weekend after the accident, but it wasn’t until my next appointment that we started taking care of my pain from it–on top of discussing my usual symptoms. I began going to the doctor weekly after that and got to know everyone in the office, including a lot of the patients.

While I was taking care of that problem I still had to take care of my other one… My disability case. I saw the judge and told him that my doctor suspected MS, as did I for years. He told me he wanted to help me, so he gave me time to find a new neurologist and get tested for it.

I told that doctor in no uncertain terms that he was to test me for MS, and I wasn’t in the mood for any more games. He was a little surprised by my candor (but understood when I explained to him why, and by my second appointment with him he gave me an Evoked Potentials Test and found that I had Peripheral Neuropathy. Then he scheduled me for a lumbar puncture. My results took forever to complete and came in at the same time that the judge already decided to deny my case.

I was finally, officially diagnosed with Multiple Sclerosis in May, 2011.

That year was a really big one for me. Even though I was denied again by Social Security–even with my MS diagnosis in their hands–I ACTUALLY GOT MY DIAGNOSIS. I also officially got my Lupus diagnosis from my Rheumatologist. It was a bittersweet year for me and my family, because we really thought that after proving that I had MS and Lupus, I would finally be awarded my benefits; but it still wasn’t enough for the judge or the Appeals Council to approve my appeal. We paid $500 dollars and filed in Federal Court. My case was read and it was remanded back to the judge–telling them to take a deeper look into my depression–which was one of the few diagnoses that I really had before my Disability Insurance ran out in March, 2006.

You see, when I started my business the one thing that I hadn’t done was take a paycheck because we were still growing. We were actually making plans to expand before I contracted Meningitis. But, my tax accountant failed to tell me during that time that I needed to continue to pay something–anything–into the fund to keep enough work credits. That turned out to be my biggest mistake… My lack of knowledge federal and state taxes, even though I paid into them my entire working life.

That’s when I finally realized they treat it more like having an insurance plan rather than the government putting money aside for me if/when I became disabled or retired. I never even thought to go apply for “State Disability Insurance”. Another thing I wasn’t led properly by my ex-doctors. Because of that, the statute of limitations ran out there, too.

Don’t get me wrong, I’m not a stupid woman… I just didn’t know the entire specifics at the time. I just assumed that one day when I retired (or became disabled), all those taxes I paid would be there if/when I needed it. That I would get the amount they said I would, and not to expect any more than that. That’s what I thought, because that’s what I always heard. I wish I would have educated myself more back then, because I would have continued to pay into it to make sure that it never ran out.

Anyway, when I saw the judge a second time, his demeanor changed towards me. He looked at my new diagnoses, including the MS, and told me that there are people that have MS and still work (which I did, for years actually). Then he looked at my hands and mentioned a few week old manicure that I got with my youngest daughter for her 16th birthday. His next question still perplexes me. He said, “Why do you care?”. I looked at him and my brain is spinning, trying to decipher his question. I said, “I’m sorry?”. He repeated, “WHY do you CARE?”. I couldn’t understand what he meant by asking that, so all I could reply was something to the fact of, “I don’t understand what you mean?”.  He just shook his head, and started talking to my attorney again.

Those were the only words I really got to say that day in court. He denied me again.

It took a lot for me to call my old primary care doctor, but I finally did it. I had the satisfaction of telling him that after I left their group I finally got my MS diagnosis, Lupus, and even more. But, it was also a call to ask him to help me, since he was the doctor that took care of me during that time. He wrote a letter on my behalf, but it was very vague. He agreed that he felt I was disabled and depressed, but he didn’t feel comfortable elaborating any more than what he had without my records in front of him. I know he remembered me perfectly, or else he wouldn’t have agreed to write that letter in the first place.

I even went to Social Security with yet another new diagnosis–this one’s not autoimmune, but genetic. It’s called Ehlers-Danlos Syndrome. Something that finally explained why I had that hip dislocation/subluxation back in 2003; and the shoulder dislocation in my mid-twenties. It also explained all those “growing pains” that I blamed on everything under the sun rather than something actually be wrong with me. How funny is that? Not knowing that the pain you lived with your entire life actually had a name, only because you trained yourself to think it normal.

I know my story has a lot of twists and turns, and it’s still not even over yet, but I figured that it’s time to not only let the cat out of the bag about my ENTIRE adventure since I got sick. I also hope that by exposing my life to the public, it will help someone feel a little less crazy, a little less alone, less stigmatized and more powerful after reading this adventure in my life that hasn’t exactly had its happy ending yet.

A lot of changes are going to be happening in my future and I have no idea where I’m heading… But, I’m glad to learn more and more each day that I’m not alone anymore–that there are people like me out there–and some are going through things even worse than I, so I consider myself lucky.

But no matter what, I hope I have proven that I’ll never stop fighting for myself–and for my family and friends–no matter how sick I become.

By the way, remember that promise I made myself a few years ago? After I officially got my MS diagnosis in May 2011, I ended up starting a little support group for people living with any chronic illness – It has over 12,000 members today that don’t have to feel alone with their struggles living with a chronic illness–or supporting someone that does. 💜


*UPDATE 10/28/16: I was denied for a third time by an ALJ. They can’t seem to wrap their heads around the fact that I had been living with my issues long before I applied for Disability. You would think that they would notice the night and day difference in my records, but all they look at is what is in front of them, nothing else. I will be filing a legal action in Federal Court, and hopefully they will either remand it back to the SSA, or approve my benefits… The only other option will be to dismiss my case, and that will be very hard to recover.

**UPDATE 11/30/16: With only two weeks left to file in Federal Court, my attorney decided not to pursue my case any further. I just got out of the hospital two days ago, and now forced to scramble to figure out what to do next. In the meantime, I requested an extension so I can find new representation. Hopefully, a miracle will come my way. I could really use everyone’s prayers for a good outcome.


If you made it all the way to the end of my story, thank you for reading. I’m sorry that it was so long, but I hope that it was worth taking the time to read. 💜