Getting the Word Out About Myasthenia Gravis

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The Texas Legislature recognizing June as Myasthenia Gravis Awareness Month.

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Dear Friends and Family of Autoimmune Disease Sufferers

Turbulent sea ahead.

        Turbulent sea ahead.

Do you have a friend or family member with an autoimmune disease? Perhaps they have Lupus, Multiple Sclerosis (MS), Rheumatoid Arthritis (RA), Hashimoto’s Thyroiditis, Myasthenia Gravis (MG), or … the list of diseases goes on. Since autoimmune diseases like to travel in packs, it’s VERY possible a person suffers from multiple autoimmune issues at the same time.

Dealing with these diseases alters people’s lives. They often impact every aspect of a person’s life. Many of us sufferers have trouble keeping up with our previously normal daily routines due to weakness, excessive fatigue, intense body pain, breathing issues, etc. It’s challenging to schedule outings and get-togethers far in advance due to the unpredictability of symptoms. One minute we feel relatively okay and 10 minutes later we could be falling-down weak or in so much pain we can’t recall our names. Between the diseases themselves and the poison we often take to minimize suffering, we often feel nowhere near our old normal selves. We live in a new normal and it’s difficult for those not suffering to understand that.

Please do not try to play doctor with us. We know you mean well, but if you think we haven’t out-researched our conditions and every possible form of natural and pharmaceutical treatment, think again. Most of us go way beyond Google searches and WebMD!

We’re not lazy. We’re not trying to be difficult. Most of us want our old, pre-disease lives back. Some of us have to sacrifice our jobs, our ability to drive, our ability to walk without assistance, and the way we go about things every single day. Spontaneity is not usually a part of the day in our new-normal lives.

Just because we now live in a new normal, it doesn’t mean we want to give up our friends and family. We just want you all to be patient and understanding. We do not want to ruin your plans. We don’t want you to act weird around us. We also don’t want to feel like a burden to anyone. Treat us the way you used to treat us. Stop by for an occasional visit. Invite us out to lunch, dinner, a show, but be understanding if we’re not feeling up to going out. The last thing most of us want is to feel left out and alone. Maybe our visits will have to be shorter than they used to be, i.e., no more late or all-nighters! That’s okay, time can still be well spent just hanging out and talking or preparing food together at home.

I’ve seen so many people come together to help friends and family members after a diagnosis of cancer. Cancer treatment often involves chemotherapy, radiation, and surgery and the horrible side effects from treatments. Some people will endure treatments for a few months, a year, sometimes longer. The goal is remission and freedom from the cancer. With many autoimmune diseases, immunosuppressants such as prednisone and chemotherapy are often used for treating/managing symptoms with the same nasty side effects and the hope of remission. Some autoimmune diseases are also treated via surgery, as in the removal of the thymus gland in MG patients. This sometimes results in remission, other times symptoms continue. There is no timeframe for treatments for autoimmune diseases. Treatments, in one form or another, go on for the remainder of life, or until you go into remission. Some lucky people have lengthy or intermittent remissions, while others never achieve remission.

Many people die from cancer; many people also die from autoimmune diseases. Ironically, thanks to the medicines offered for autoimmune diseases, some people develop various forms of cancer. It can become a double-dose of suffering!

Be patient, be kind, be understanding, and don’t forget about us. Our bodies are trying to kill us. We need all the help and support we can get to fight back.

Myasthenia Gravis Hits Prime Time … Now What

I, like many other people with MG who happened to be watching the U.S. television show Empire last night, couldn’t believe that the main character Lucious Lyon had been misdiagnosed with ALS when he actually had myasthenia gravis (MG). [Note: I think the show House was the first to mention myasthenia gravis in prime time television

I’m grateful that someone in TV land thought about MG and put it out there, but I am concerned about MG being minimized and written off as being “highly treatable” and, thus, not a real threat to the person’s life.

I’ve watched the series since the very first episode. Knowing what I know about MG as a sufferer and what I’ve seen other MGers endure I’d say that if the show writers want to depict Mr. Lyon as a genuine MG patient, they will have to show him going through a lot of what we deal with every day.

Most myasthenics take multiple meds just to be somewhat functional every day. Some myasthenics are miraculously able to manage full-time jobs, a family, etc., while others are completely disabled by the disease.

There are several options to treat/manage the chronic symptoms of MG, but many of those meds are not always very effective or they cause even more problems including, but definitely not limited to the following:

  • Unwanted weight gain (prednisone)
  • Bone density and calcium loss (prednisone)
  • Serious and inconvenient intestinal distress (Mestinon/Pyridostigmine)
  • Mind-blowing headaches that rival the worst of the worst migraines (IVIG infusions)
  • Aseptic meningitis (IVIG infusions)
  • Destruction of red blood cells resulting in acute hemolytic anemia (IVIG infusions—this happened to me two years ago and I was VERY lucky to have survived—thanks a million to the person who donated blood for my blood transfusion!)
  • Various forms of cancer (Imuran, Cellcept, …)
  • Blood clots, infections (plasmapheresis)
  • Infections and possibly other complications (thymectomy)

Not all myasthenics have a rough time with whatever combination of treatments they and their neurologist determine are best for them, but it’s rare to meet a myasthenic who hasn’t endured some of the side effects listed—and not listed—above along with the general every day symptom lineup.

One of the first things my neurologist told me before we started any form of treatment was that stress was going to be my number-one enemy and that I would have to find a way to control it. Stress included both physical and mental stress. I ultimately ended up leaving my job (you can look at some of my earlier posts about that saga). Now, let’s go back to the TV character Lucious Lyon. He’s in a high-stress, high-drama environment practically every day. A real myasthenic in that setting would likely have visible MG symptoms throughout a day like his. I’m talking face or eye drooping, maybe slurred speech, stumbling or tripping, perhaps some hand tremors and dropping things, shortness of breath, and the inability to stand or walk around for extended periods of time—don’t get me started on the stairs!

As angry as this character gets at times, I can see him diving into a myasthenic crisis and landing in the hospital requiring a ventilator to help him breathe. Ventilators and hospitals = myasthenic nightmare! The myasthenic crisis is the point practically every MGer prays they never reach. It can be seen as a crossroads of sorts. You could live or you could die. If breathing difficulties are not caught and managed quickly, you could die. Period. Having MG and then being suddenly hit with a viral or bacterial infection or having other chronic ailments flare up can easily set off a chain of events that lead to death. MG can kill directly or contribute to a chain of events that can take you out.

Like ALS, MG symptoms are chronic and are not curable so far (I’m still holding onto hope all autoimmune diseases will have cures one day). ALS patients, even with medication to help slow the degenerative process, deteriorate rapidly and die. I’m not sure what the life expectancy is for ALS patients once symptoms appear, but it seems to be rather short.

For MG patients, barring an untreated or not-treated-in-time myasthenic crisis, a serious medical complication from treatments, or an accident like a fatal fall due to weak legs, life expectancy can be considered average. Since being diagnosed myself in 2012 and becoming a part of various MG support groups, I have seen several people of varying ages die from the disease. I personally do not think anyone should die from MG. I feel that we as patients and the medical community being paid to help keep us alive still have a lot to learn about MG. So many MG symptoms overlap with those of other diseases, which would explain, to a certain extent, the misdiagnosis of Mr. Lyon. This isn’t discussed in the show, and there’s a lot to it that I will not go into here but some myasthenics do not exhibit the AChR antibodies in their labs (meaning they’re seronegative). They have the classic symptoms of MG, but their blood work doesn’t reveal it in that way. I’m guessing when this happens, depending on the experience of the doctor, they’ll continue digging for answers that point to MG or to other diseases with similar symptoms. It’s crazy complicated.

MG doesn’t mean a definite death sentence but life quality is definitely altered. A myasthenic’s life and the lives of their friends and loved ones are affected. So many things have to be considered to get through a typical day. Eating can be a challenge especially if you’re having difficulty chewing or swallowing. Speech can be slurred even if you haven’t been drinking! Showering/bathing can be challenging when your legs and arms are weak (many myasthenics have to have assistance with such things when too weak to manage on our own). Try brushing or blow drying your hair with weak arms—next to impossible on your own. Extreme temperatures, such as high heat and humidity impact a lot of us, while others are impacted by extreme cold. Many of us were athletic or extremely active before MG took over. I used to walk four miles every other day and work out with weights on the days in between. I’m medicated and mostly functional most days but I’ve yet to manage to walk even one mile or lift more than five pounds of weight since starting treatment. Some can’t even lift one or two pounds without difficulty!

I could go on and on with a list of daily things that are often challenging for myasthenics, but I’ll spare you plus my vision is becoming blurry from staring at this screen and typing up all of this (thank you MG!).

When the next season of Empire starts, I really hope they do not write off his illness because it’s “highly treatable” and that he’ll be the extremely rare, ideal patient who responds perfectly. That would not keep the disease “real.”

New Again

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The year 2014 was full of all sorts of emotional and physical roller coaster rides thanks to myasthenia gravis and the myriad autoimmune issues I have. Everything challenged me to determine what my real priorities in life are. I made several life-changing decisions this year that seem to be exactly what was needed to move forward. I’m saying buh-bye to many things to make room for an awesome 2015. Throughout the year, no matter how crazy things got, I kept looking up, as illustrated in the multiple sky pics: Sunrises, sunsets, moon rises, lightning storms, and all the pretty —and sometimes ominous looking—clouds. They kept reminding me that nothing lasts forever.

Happy New Year to All!

Who gave me my nose?

I wrote this a few days ago and didn’t get around to posting it. This blog entry is going to sound like I was smoking, eating, or injecting something I shouldn’t but I swear I wasn’t on anything…well, I was sitting on a bench outside the music building of the university I attended for my undergrad studies. Just sitting there brought back fond memories of music classes.

I’d like to add that while I was writing this, I kept hearing a helicopter overhead but was so focused on writing I didn’t look up until I was nearly finished. The helicopter started sounding as if it was flying lower. I looked up, the helicopter went on its way, and my eyes ended up focusing on part of a sun halo! I think the people who are the subject of this writing sent it as a sign of acknowledgment!

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Anyway, the purpose of this entry is to talk about my ancestors, the people who emerged from many parts of the world and “hooked up” in various manners leading to my existence. It’s been a weekend of All Saints and All Souls honoring. I’ve thought about the people who came before me a lot since last week’s birthday. In fact, two passed-on family members have weighed heavily on my mind since my birthday — two sisters I didn’t get to meet. One of them was stillborn a few years before me and the second one died a short while after being born. I came along a little more than a year after her and barely made it. I knew nothing about either of them until I had to obtain another copy of my birth certificate a few years ago. I never really paid attention to all the writing on my birth certificate except my name, date, and place of birth. In the middle of the certificate was information regarding previous births from my mother. I was stunned to see the info.

I’ve often wondered what it would’ve been like growing up with them or if I would be here had either of them survived. Lately, I’ve been thinking that maybe they teamed up to pass their chi—life force— on to me to help me in those early days on up to the here and now. I was born two months early on the eve of Halloween in All Saints Hospital and weighed all of 2 pounds 12 ounces. My dad said he could hold me in one of his hands! I really wasn’t expected to make it, but the doctor and nurses seemed to take a special interest in my survival—I’m guessing they had dealt with my parents’ previous losses.

I definitely believe in guardian angels. I’m convinced those two sisters are among my guardians. I think my only brother who passed on several years ago is among them, along with a host of others. It takes more than one guardian to manage this bundle of one mess after another. I’m beginning to think I should leave bottles of wine, tequila, and vodka around to reward them for their endless work! I wonder if they’d like Belgian chocolates?

. . .

I’m often awed when I think of the generations of people before me. Their myriad personalities and quirks, skills, talents, likes, dislikes, etc. Hearing my parents talk about their parents and grandparents and commenting on certain personality traits they’ve seen in me and my brother always gives me chills. Some things about us are learned, while others seem to be handed down on the DNA platter.

I was “accidentally” named after my mother’s paternal grandmother. My mother didn’t know her and only knew her nickname for years until she named me. One of her family members commented that it was the same name of her father’s mother — same rare spelling and all! I expressed an interest in writing and journalism at a very young age and was a journalist for 12 years. The great-grandmother I was named after was a writer! I’ve unfortunately not found any of her writings but they do exist with a distant cousin who has yet to cough them up for me.

Here are some of the other gifts I’ve received from those before me:

  • Paternal great-grandmother passed on her nose. My nose looks nothing like my mom’s or dad’s.
  • Paternal great-grandfather passed on his warped sense of humor, desire to help people, and gardening/farming skills.
  • Maternal grandfather passed on his house-designing skills — I’ve drawn house plans, but have yet to build anything — and his love of classic cars.
  • Maternal grandmother passed on her craftiness — and temper!
  • Paternal grandfather passed on his curious and suspicious nature to me. Now I know why I don’t trust many people.

Since childhood, I’ve had an interest in studying certain countries and languages. No real reason known to me why I was interested. They just appealed to me. It seems from DNA tests conducted over the last three years, I have ancestral ties to all of the places/languages I’ve been drawn to. Hmm, interesting. It’s too bad I have no kids to pass all this on to. My niece and nephew will have to carry the torch.

Now, who passed on all this autoimmune crap I deal with???

Listening to the world

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I’m doing something unusual right now, or at least something I haven’t done since I was a kid who would sit outside after the sun set and watch the stars appear with her godmother. I’m taking note of every sound I hear both near and far. Why? It’s just a fun and relaxing thing to do — listening to the world around me.

As I write this, I hear:

  • Music coming from a festival going on near me
  • An excited dog barking in the distance
  • Crickets
  • A motorcycle revving on the major road a couple of streets over
  • Clanging of a neighbor’s silverware (just washed dishes?)
  • Gentle drone of traffic
  • An ambulance
  • Murmur of a large group gathered at the bar across the way
  • Squealing brakes of a city bus or truck
  • A screaming cat
  • The gentle ding-ding-ding of my metal wind chime
  • Laughing kids
  • The hum of my refrigerator
  • A train blaring its horn
  • A neighbor playing the piano

It all makes up the sound of existence.