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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It was a dark and stormy night, day, week, month, year …

20150525_132400_2I haven’t written much lately. There are lots of behind-the-scenes things going on, including the start of the disability-filing process. It has been extremely depressing filling out the papers and answering questions about my health and worth—like I don’t battle with these questions everyday all by myself. Writing out the details on an official document is a painful smack in the face. It’s a reminder of all the chaos I’ve gone through since being diagnosed with myasthenia gravis (MG) three years ago.

Today has been a battle against a nasty MG flare. The day started out okay. The weather isn’t even too bad (humidity ~47%, temperature in the 80s). I had to go to the grocery store for a couple of items earlier today. As I walked through the store for the second item, the dreaded heavy, lead-filled legs took over. I was struck with fear that I was going to end up falling. I had an immediate flashback to May 2013 when I fell and ended up breaking two toes! I had no choice but to walk slowly like I was trying to sneak up on someone. I made it to the checkout lane and leaned on the counter. I was grateful, for once, that the person in front of me was taking forever with checking out. It gave me time to rest before attempting to walk to my car, which seemed to be five miles away.

I made it to my car and sat for quite a while to catch my breath and collect myself for the drive home. I made it home and immediately crawled into bed. I slept for three hours! I felt better when I woke up until I started moving around and then I started going downhill again. Many myasthenics in this situation would check in with their neurologist to share their flares or see if there’s anything more that can be done to help minimize the number of episodes—I’ve been having more than my fair share of flares for several weeks now. Unfortunately, I haven’t been able to see my neurologist since October/November last year. I was scheduled for a six-month followup in April but I’ve had to keep postponing my appointment due to lack of funds to pay for a doctor visit. I’m supposed to have labs done every four to six weeks since I’m on Imuran (azathioprine) and I have one of the world’s most sensitive systems. I’ve not been able to have any labs done since January of this year due to lack of funds. I had to drop my so-called “affordable insurance” because I can’t pay for it. I don’t have 10 kids from as many different men and I’m a legal citizen so I have to pay more for my insurance and receive zero help from The System. Oh, and let’s not forget that I’ll be punished by said System for not being covered.

I’m still trying to make a go at building a business that would allow me to control my hours, allowing me the flexibility to stop and rest when I need to. It’s taking way longer than I hoped it would take thanks to unpredictable flares and not having the help I need when I need it. I’m trying my best to not let it all get to me, but I have to admit I’ve had some mighty meltdowns over the last few months—the latest one yesterday morning.

I’ve been doing some small contract work in my career field. I enjoy it but it isn’t paying nearly enough to help me pay all the bills. Yes, I’ve cut out all miscellaneous expenses. I don’t have cable. I don’t have a subscription to Netflix or any other such services. I have the cheapest Internet plan. I don’t go out. I buy only what is actually needed in groceries. I took myself off of my anti-arrhythmia meds since they were too expensive even on insurance to maintain (no, my heart doctor doesn’t know this). I have a prescription discount card, which cut the price of my Imuran in ~ half, but it doesn’t cut the other medicine enough for me to be able to pay for it at this time.

I must keep some sort of roof over my head. I’m in a “cheap” apartment—well, cheap for my city. I’m still paying on my car. I’ve fallen way behind on several bills and I have zero ability to negotiate with the collectors since I’m not bringing in enough to pay them and maintain the absolute necessities.

With all of that said, I’m mentally gearing up for being denied disability since it seems to be the norm that people are turned down the first time. Also, since I’m still doing some work, they will not see me as disabled. It’s quite the challenge having a disability that, if you work, requires an extremely flexible schedule and limited tasks that aggravate my muscles. That type of job, as far as I know, doesn’t exist under any known employers, which is why I’m trying to create the setting for myself. My mind is too active to allow me to curl up in a ball and live in someone’s spare bedroom until I die. I have to make this work one way or another. I’m willing to die trying to set up the most ideal conditions for myself. What can I say? I’m stubborn.

Myasthenia Gravis Deserves a Flamenco Heel to the Throat

I rarely watch movies, but on a whim I decided to watch Shall We Dance starring Jennifer Lopez and Richard Gere. People who know me well would be a bit surprised that I had any desire to watch such a movie. I’m more of a documentary, adventure, and mystery-theme person.

Surprise! I happen to also be a fan of dance and choreography and I like JLo’s dancing. The real reason I watched it, though, was because I really miss dancing.

Yes, that’s a joy that myasthenia gravis (MG) has taken from me. I used to study Flamenco, Salsa, and ballroom dancing. Dance is not only great exercise, but it always gave me a feeling of grace and freedom. Sliding across a dance floor with or without a partner (often the case in Flamenco dance) is like a moving meditation. My mind could not be on anything else while dancing. I had to focus on not landing on my arse!

I’ve tried a few old routines at home since the evil MG came on the scene and my legs wouldn’t work with me for even two minutes of it. I can only kick back and mentally dance now. As angry as MG makes me, it would be AWESOME to be able to do a five-minute, floor-stomping Flamenco routine! I still have my Flamenco shoes and skirt with the hope that one day I’ll meet up with this elusive character known as Remission. Perhaps, my shoes and skirt will join me to grace a dance floor again someday.

See this heel, MG? I’d like to kick you in the throat with it!

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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.”

Illness on top of illness on top of feeling forgotten and frustrated

I was one of those lucky saps who managed to pick up the flu this season. I had my annual flu shot in October last year. This evil creature has managed to make my myasthenia gravis symptoms worse over the course of the last few days. The worst part of it has been the fever. I hate fever. I know it’s the body’s way of “burning up” the loveliness attacking the system, but I feel awful. Aches and pains and the occasional clothes-and-linen-drenching sweats are just icky! Today is the first day since Wednesday last week that my body temp has been in the more sane range of 98-99F. It hovered at 102 for a few days. My normal temp is 97.6F. I went through three large boxes of Kleenex (I’ve been sporting a nice Rudolph the Red-Nosed Reindeer nose) and I’ve practically worn out welcome with my bed and sofa. I swear I can hear a low groan from them when they see me dragging my limbs toward one or the other.

This kind of sickness is considerably easier to handle without the daily battle with a chronic illness that alone can make you feel like @$%#. I swear the MG demon has been 50x larger than normal this week. I’ve had the foot drag, the drooping mouth and eyes, the challenge of lifting a simple tea cup to my mouth, the having to hold on to something to be able to rise up from a chair, the effort of trying to brush my teeth and shower, and let’s not forget trying to cook something to eat.

On the topic of health, my so-called “affordable healthcare” is NOT affordable. I’m not a single mother of ten kids from as many different men so I’m not eligible for assistance. I’m simply an entrepreneur who has paid into the system for more than half of her life and has been dealt the challenge of health issues that have drained my savings, retirement, etc. I’m officially out of funds. Actual goose eggs in my accounts. I’m now facing having to find temp or part-time work outside of  home again to keep my very humble roof over my head. It scares me knowing that I’m going to have to dive—hopefully temporarily—back into the chaos of someone’s office to make money until I complete a key part of my business and I’m ready to roll it out to potential clients. Things could have been finished by now but as many with chronic illnesses know, it’s challenging to balance everything in a way that allows for the most productive management of time — time for working/creating and time for resting/recovering.

I know several people battling some of the same chronic health issues but they have the fortune of having someone to assist them, especially at home. I’m not in that category. I’ve let go of having a spotless space. I used to practically detail my car once a month and my apartment every Saturday. I’m lucky if my car gets washed every other month and my apartment gets a cleaning every three weeks. Since it’s just me, it doesn’t get too out of hand. Laundry might pile up for a couple of weeks and the shower gets cleaned once a week instead of after every shower. I have to turn a blind eye to the chaos that is on my living room table. People who know me well would really know I’m not well upon seeing how messy it is. No one has been over to my place since, oh, sometime last summer. One person was going to stop by for a visit, but didn’t. I even summoned some energy and strength to vacuum and tidy up a bit just from the sheer joy of a friend stopping by. I heard from them a couple of weeks later. Just a note saying hi. No explanation. I didn’t even bother to ask. I know I’m not on anyone’s priority list these days. I have to accept that and keep moving on.

I’ve taken periodic breaks from the social media realm, namely that place with the initials F and B. I find myself feeling envious of those with more stability in their lives and tons of people around who at least appear to care. That used to be me. I miss that part of my past. I’ll probably hide until after Valentine’s Day. I will not be tormented by all the beautiful bouquets and candies being gifted. Christmas was bad enough.

Now that all of that is off my chest, I’ll get back to trudging through business work, looking for temp work, and blowing my bloody nose.

I sorely want to punch the flu in the face right now but the bastard MG has my arms.