Why I'm Taking a New Honest Approach to Living With Myasthenia Gravis

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As I walked out of the outpatient infusion center in mid-town tonight, I realized something. I may have graduated today. Today may be my last infusion. The last day I sit in a chair for six hours hooked up to an IV. The last time I commute via two subway trains and eight blocks for treatment. The last time I show up to work the next day with mysterious deep purple bruises on my arms, or a sleeve hiding a catheter.

I was diagnosed with myasthenia gravis in the fall of 2010, and started IVIG (intravenous immunoglobulin) treatments the following winter of 2011. Myasthenia gravis is Latin for “grave muscle weakness.” It’s a chronic muscular autoimmune disease for which there is currently no cure. Basically, the synapses where your nerves talk to your muscles don’t work properly in a person with myasthenia. There are days when it feels like I can’t move my arms, or my legs feel like I have been hiking for seven miles in the mountains outside Las Vegas. (I know what that feels like because I used to love hiking there before I was diagnosed.) Thankfully, those days are now few and far between.

But even with these symptoms, and treatments, my life still happened. Was it the life I expected at 38 when I was diagnosed? No. How do I feel? It’s easier to give you my stats first:

– Cost of infusion drugs for treatment = $2.7 million

– Attempts to put in an IV = 439

– Infusions = 177 (or 973 hours hooked up to an IV)

– Work calls made while hooked up to an IV = 37

– Workshops and presentations led at work = 28(-ish)

– Number of times I’ve cried at work in front of someone = 11(-ish)

– Number of different bosses (at the same company) = nine

– Migraines caused by aseptic meningitis, a side effect of the infusion drug = six

– Number of times I’ve gone out on a date = five

– Number of times a day I take medication = four

– Weddings attended = three

– “Aunt Meghan Camp” summer weekends with my niece = two

– Parents who have died = one, my dad.

– Number of 40th birthdays = just the one

– Percent of worldwide population with myasthenia gravis = 0.02 percent

It’s easier to hide behind the numbers. Reality has always been harder. How has living with this disease (and its treatment) impacted my life? Truth? I work incredibly hard not to think about it. I am such a master at denial and compartmentalization and subterfuge that even my closest friends and relatives don’t know how I feel. Rule number one in my book over the past six years: don’t let them see the vulnerability. Why? All the answers come down to fear. I don’t want to lose my job. I don’t want to lose my apartment. I don’t want that person to stop being in my life because I’m too difficult. I don’t want to lose my independence and freedom and sense of agency. I want a future. I want the life I thought I was building when I got my new job in 2010, six months before I was diagnosed.

Honestly, how I feel is complicated and ever-changing. I am eternally grateful for a supportive employer, for “platinum” health insurance coverage and for meeting the neurologist who diagnosed me and has treated me with respect and humor and care. I have felt trapped by my life: Could I consider leaving a job or a city because what if that meant I lost this level of care? And I’ve felt resentful, angry and bitter. The “why me?” days. The “what doesn’t kill us makes us stronger” days. And then there are the days I’m bored. Yeah, bored. Like life has passed me by.

Here’s the thing, life didn’t pass me by. I’ve been living it the best way I’ve known how. That’s what I have learned over the last six years. And if there’s one thing I have learned in the last week, it’s that for us to truly know what our friends, our neighbors and our loved ones are thinking and feeling and believe, we have to be honest ourselves. We need to share our struggles and our points of view and our hopes and our dreams and what matters to us. We need to share who we are. Not being honest is an injustice. It makes someone “the other.” And after this election, we need to prevent “the other” from being something sinister and unworthy of our trust. So, all that denial and compartmentalization and subterfuge I’ve been doing… It’s over. It’s for a different time. Today is a new day and it starts with embracing all the different parts of who I am. Someone who’s sick. Someone who is driven and ambitious. Someone who wants to build a life with someone and get married. Someone who wants to be there for the people she loves. And wants them to be honest with her. Even when it feels hard. Because we are stronger together.

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12 Ways the Movie '50/50' Got Illness Right

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As most people with chronic illness, I have a deep appreciation for Netflix. Drawn in by the pairing of Joseph Gordon-Levitt and Anna Kendrick, I recently watched the movie “50/50.”

I was expecting it to be enjoyable but I didn’t expect it to be so relatable. I have never had cancer but I have been embedded in the medical system for the past 17 years, having type 1 diabetes and myasthenia gravis. There were so many moments in the film that made me cry out, “Yes! That’s exactly right!” that I had to start making a list. Here it is:

1. Callous doctors will forget that you are a person and not just a fascinating body part.

2. Anxiety before significant appointments will make it hard to sleep the night before.

3. The normal niceties of the hospital environment seem out of step with the bizarre treatments and choices presented to you. What is momentous for the patient is routine for the health care professionals.

4. The endless hours sitting on the couch, or laying in bed as you wait for your body to smarten up, feel tedious.

5. The face in the mirror can create shock, revulsion or anger.

6. Other people sometimes use your illness to get what they need out of life.

7. Regardless of the fact that your life is literally falling apart, you still have to endure the mundane necessities of life – like taking the bus to and from painful, exhausting treatments.

8. Having sex becomes very tricky. You don’t want to ruin it for the other person, or make it awkward, but sometimes that’s just how it is.

9. You’re able to hold it together 99 percent of the time, but then you randomly explode emotionally.

10. Everyone around you wants to ignore the scary parts. You hear, “It’ll all be OK… take it one day at a time. You’re young and strong… you’ve got this.” When what you really need is for people to recognize the reality of how you live.

11. You do become friends with the people you have regular treatments with, and you worry that they’ve died if they don’t show up one day.

12. You forge new relationships and deepen preexisting ones. You find love.

Follow this journey on 8 to 10 Jelly Beans.

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Photo courtesy of 50/50 Facebook page

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7 Small Changes That Can Improve Life With Myasthenia Gravis

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We are the “privileged” few. The chosen ones.

You know, the ones diagnosed and living with myasthenia gravis.

Myasthenia gravis affects 20 out of 100,000 people in the United States.

Aaah, now that we have the official stats in place, let us get on with the art of living a fruitful life with myasthenia gravis.

I believe acceptance is the first step towards managing neuromuscular disorders in general –myasthenia gravis in particular.

So easy to write. So difficult to imbibe and implement. No wonder I decided to write and speak about it only when I completely accepted that MG is a reality of my life.

I learned and accepted that it is OK to change my life and day-to-day living as per my health condition and muscle strength to make it easier for myself and indirectly easier for my family.

These are simple adjustments that go a long way in easing the discomfort from the fact that one is unable to do things all by oneself. See if you would like to incorporate the same into your life or that of your loved ones having neuromuscular issues.

1. Wake Me Up Before You Go Go…

…should actually be don’t wake me up before you go. Let me sleep till whatever time. It is OK to sleep till 8:00 or 9:00 a.m. I don’t have to jog or go for a marathon practice session. My body is asking me to rest a little more and I shall do exactly that.

2. Mugged

Yes, the mug in the bathroom. It weighs as much as the five-kilogram (about 11 pounds) dumbbells I used to effortlessly pick up at the gym 15 years ago. They are heavy to pick up as is – add water to that and I am doomed. So I found an alternate. There are smaller mugs available, a little bigger than your coffee mug! It suddenly eases the effort, both physically and mentally. It is OK to buy one.

3. Help 

A magic word. Help. Take help. From whoever is close by and/or is close to you. There are things you might not be able to do all by yourself today so it is OK to ask for help.

Bath: Oh, this is one is tough on those “bad” days. One has to psychologically prepare oneself for the event of the day! Ask someone to scrub your back. It is better than gasping for breath and being totally exhausted the rest of the day.

Changing clothes: Do you know how difficult it is to put your hands in the sleeves and pull a shirt over your neck and shoulders? It’s a task as difficult as climbing up the EBC (Everest Base Camp), except we do it each day. Take help from a family member, for God’s sake. Feel like a kid. Get pampered.

Hair wash: Hair wash day is the one of the most grueling days of the week. However, we now need to adjust the days and frequency according to our energy levels and muscle power. Each hair wash is generally accompanied by red, swollen, watery eyes because I am unable to keep them shut as tightly as before.

Solution? Lessen the number of washes if possible. Change your hairstyle as per each passing day. Day one: Ooo…blow dried hair. Day two: ponytailed hair. Day three: plaited hair. Day four: the gelled and bun look. Day five: Good Lord… hair wash day – but this time ask someone to wash it for you. And it is OK to ask.

4. Baby Food 

Mish mash your favorite foods and eat. It’s better to have overcooked rice and millets than to struggle with it and overwork the poor facial muscles. No one is going to judge you on what you are eating and if someone does, you know what to do. Accept help from someone.

5. No Means No

I never learned this in my life, but now is the time to say it. Say no to…

Parties and weddings: Please tell me if you remember who did not come to your wedding or party from the long guest list that you missed terribly that day. No one misses the absence of a guest in a big party or marriage ceremony. It is fine to be cuddled in bed, conserving energy for the next day rather than being at an open air wedding, putting your lungs at risk and rushing to the ICU.

Movies: It is OK to say no to a movie plan by friends and family. Thank God we live in the digital age and have options galore: Netflix, Amazon Prime and 200 channels on TV. Eventually we shall get back to it but presently, chances are we might catch an infection from going to a movie.

Visiting guests: Say no if you are not up to it. If they understand, keep them in your friend list but if they get upset, chuck them right away. Also, unashamedly ask and ensure that they are not getting a cold or a cough as a gift for you.

6. Footsie

Silly me discovered this just recently. When bending down leads to breathlessness (like you just did 20 minutes on the treadmill at a high speed), you need to change the tactic. Use your foot instead. Of course, it is to be done only by those who have leg and calf muscle strength. But yes, you could use your foot to switch the floor buttons on and off, pick things from the floor or clear the bed with one leg swoosh (when no one is around to see or help).

7. Rest, Rest, Rest

It is OK to have a mid-morning, afternoon and a mid-evening power nap. That is like an energy drink for us.

These small changes can be incorporated when the going is tough. Once my medication went into effect, my symptoms subsided and I could see remission at the end of the (till now) dark, never-ending tunnel. Now I can get back to a more action-oriented life.

Till then my friend, the key word is OK.

It’s OK to take it easy and it’s OK to accept help.

Meanwhile, as always, a small, little prayer that the medical fraternity finds a cure for myasthenia gravis soon. Very soon.

This post originally appeared on Pallavi Rao‘s blog.

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The Fear of Feeling Better When My Visible Symptoms 'Validate' My Illness

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My next neurology appointment is in a couple of days, and every time I anticipate the exam, I cannot help but reflect on the 12 year-voyage my illness has thrusted me upon.

For the last decade, I have been walking the wobbly plank of myasthenia gravis and attempting to reintroduce balance and stability where there is none. Now, as I am thankfully getting better (to the point where I can live a comfortable life), the fear of a “tipping point” and falling into new territory yet again scares me to my core, and I don’t know if I’m ready for it. The majority of my life has been a defense against my own body, and I grew into the role of a professional patient. The little girl I had grown into was attacked by MG; I had to pick myself up by the bootstraps and protect the new Meridith I discovered.

As I slowly but surely get stronger, my reality is evolving and everything I have just now begun to get comfortable with is fading away. To lose my ability to chew, swallow and speak (to name just a few) will never be forgotten. Those physical feelings and the consequential emotions that came after are engrained in my memory; however, as my strength increases, I begin to wonder: is my experience less real to others just because I do not feel those symptoms to the severity I once did? Will my word ever be trusted or good enough?

The thing is, even when my symptoms were at their worst, many never fully appreciated my lived experience. So why would I expect that now?

I understand that my lifeline in these different phases of my illness is to trust my instinct, my gut, my heart and my memory because there will always be people questioning my intentions, my actions, my approach to life. Yet, there is this consistent fear of not feeling the symptoms assigned to me to an expected degree. On some twisted level, the symptoms that distinguish my illness are shields of armor; they have the duty to protect me from any doubt or hesitation because there is legitimacy in the display of physical struggling. People often wonder: if the drugs are working and you look fine, what seems to be the problem?

The problem is that chronic illness is not as black and white as people make it out to be, even when a clinical diagnosis has been properly identified. The state of one’s disease can seesaw between various stages at different points in time. At one point I felt helpless, at times I am required to depend on others and I am continuously redefining who I am because of this illness. Currently, I finally feel like I have mastered the management component of this disease.

As I have reached these later stages of expertise and owning my self-worth, I see myself attempting to meet all these expected competencies of a young adult when in reality that is not always feasible because I do indeed still have myasthenia gravis.

Many people will say to me, “Look how far you’ve come” or “You are so much stronger than you were before” and I am – I know that. Somewhere down on sea level I am proud of the accomplishments I have mastered, but I am also frightened that my current state of disease will not be validated by others just because I am in a “good place” in my life. I still struggle every day, fight every day… but I also don’t want to be that person who always has to prove her illness to others. I am my own person, and I do have strong days, I do have weak days and every day is filled with unexpected tidal waves or calmness of the sea, but I just have to remind myself that whatever “state” or “stage” I am in in life or in illness, that is where I need to be and I will not give anyone the power to dictate how I am feeling or how I should feel based on that.

For so long I have learned to be practical, efficient and always make “smart decisions.” It’s exhausting always making the right decision and for once I would like to not have to worry about making a wrong decision or fear judgment being placed on me because I knowingly have an illness. It wouldn’t be appropriate to make that decision because of what I know.

I never made reckless decisions or careless mistakes because I was so scared of the judgment that would be placed on me because “I knew better” with a chronic illness.  For once in my life it would be nice to just live and not necessarily think about every consequence that will occur based on the decisions I make throughout each day.

Do I gamble the risk and face the potential of being judged and also judging myself? This perfectionist mentality within me is not something I recommend to others, but it is an innate quality I cannot deny.

Or, should I be applauded for thinking and acting practically, logically and never missing a beat? I am challenging myself this year to not fear failure, not fear mistakes, not fear imperfection. Let’s be honest: this disease is so rare anyway that it’s not like you would know the “right” way to handle it, right?

No matter where this disease takes me, I will use it to guide me towards that tipping point. Yes, it is a scary place to go to, but I am willing to risk the fear of the unknown.

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The Truth About Life With Ill Health I Realized While Waiting for My Doctor

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Yesterday when I was waiting for my turn to meet the doctor in the madly crowded outpatient hall at AIIMS (All India Institute of Medical Sciences), I looked around at all those waiting with different ailments and different expressions on their faces. After almost three hours of waiting and staring at all those around me, I realized what underlines us all is that we must all live our lives as well as we can, no matter what comes our way.

As human beings we have very little choice in the matter of coming into this life. We don’t get to choose our parents, our siblings, our relatives or our homes. From the moment we arrive we are learning how to cope and make the most of whatever we have and whatever life hands us.

While waiting in the queue I saw there were three more patients struggling with myasthenia gravis, all in their late 5os and accompanied by their spouses and sons/daughters. I was the only one in the mid-30s and was accompanied by my husband and two aged fathers. At that moment I realized that although we may share many common experiences from an ailment point of view (the three hours of waiting had weakened our backs and almost made us put our heads between our knees), we are still unique in this world. Whatever happens in our lifetime is still a life lived. I further realized that our bodies are merely the vessels and receptacles for all our life’s work and dreams. Our passions, our loves, our interests and our experiences all reside at the center of our being. Regardless of what happens between birth and the final end, what matters at the end is the life we lived.

Sometimes the plans and hopes we may have for our lives can be changed forever and in an instant. But still, it’s the only life we can truly call our own. I find this thought very comforting when I feel lost in the challenges I may be facing and am questioning what purpose and meaning my life may have. It seems more fair to me when I think that all lives are a mixture of chance, choices and constant change. It is somewhat ironic then that it is when we feel in control and in command of our lives that something will happen to remind us we are not. We can never take anything about this life for granted, nor allow ourselves to think we are superior to another life by virtue of our current circumstances.

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I would never have dreamed of this life and where it has taken me, what I have seen and what I have felt. When I look at those around me and those I know and love, I am reminded that they don’t know what awaits them around the corner either. I sincerely pray and hope it’s not pain, suffering or misfortune, but these things could happen to any one of us at any second. (Just as something pleasant or fulfilling may also be a moment away.) Yet we sleep, we eat, we breathe, we dream and we do what we can from day to day, despite the odds and chances of whatever lays ahead.

To those like me who must bear the burden of pain and hardship caused by ill health, it is not an easy reality to face and there are so many times I have wished it wasn’t my reality. I wish I didn’t have this illness, but I guess that wasn’t to be my path. Despite that, I still have my one and only life. Just as precious as yours. And just as worthy as the next person’s.

Who will love me, who will meet me, who will value me and who will remember me are things that I may not have a lot of control over. But, how I love myself, who I remember and how I live out my remaining years will be up to me and the great unknown. I still intend it to be a life lived. Now I am true to myself and my passions. I have accepted all of my past and made a life out of what I’ve been given and what my heart truly enjoys.

Have a wonderful weekend and live your life to the fullest!

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15 Things Not to Say to Someone With Myasthenia Gravis

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I have been wanting to write this for a while, to get it off my chest…  I have heard all of these at least once and they have really stung. Some of them I am learning to brush off, but some still make my blood boil. So this is my vent. It is often my responses I wish I had the guts to say to those who have said it to me.

You may think you are being kind or supportive, but know that more often than not we are sensitive and embarrassed by our myasthenia gravis. Words can be very hurtful, and stay within someone’s heart for a lot longer than you may realize.

We are all beautiful individuals — some of us are just more “special” than others!

So here it goes…

1. I know exactly what you’re going through.

No, I can pretty much guarantee that you don’t. You don’t know what it’s like to battle to get your words out, choke on your own spit or have difficulty getting up off the floor. You may have some understanding through us explaining what we are going through, but you do not know what it is like to live with MG. And everyone who has MG is different, and has varying degrees of symptoms — nobody is the same, so we don’t even know what the other snowflakes are feeling!

2. Nobody could ever love you with this disease.

Yes, I have actually had an ex say this to me. It broke me. Still to this day it lies heavy on my heart, and every fight I ever have comes back to these words that were spoken over my life. I often distance myself from others as I would rather not become too close to anyone than lose them (friendship or otherwise) due to the fact that they cannot handle my disease. It is a heavy burden to carry, and try as I might I cannot forget it. Even if you say something like this in the heat of the moment it cannot be taken back. I am so grateful for my wonderful husband, family and friends that have proven that they can love me with my MG and will be my pillars of support through the good and the bad. I am truly blessed.

3. You need to be more positive.

This one irks me like you cannot believe! I am a very positive person. I laugh throughout life and always try to see the best in every situation. Yes I was given the short straw with regard to this illness, but if I hadn’t gone through everything I have, I wouldn’t be the person I am today. But sometimes I do have my down days. Sometimes I will cry for anything. Some days I am sick of being sick. I battle with hearing bad news about my illness or my medicine. But I don’t need to hear that I need to be more positive! I try every day to see the good in every situation I find myself in. I try to greet others with a smile, make them laugh and show compassion towards everyone I meet. I would love the same in return! Help lift me up when I am down. Make me laugh. But please don’t tell me to be more positive!

4. It’s not that bad.

Um…  Sometimes it is! Have you lived with this? Have you wondered when things will get better? Have you thought you were in remission, only to end up back in ICU? Have you sat on your bed unable to stand up or brush your hair or pick up your bag? I agree that some days are absolutely fantastic, but when I say I am having a bad day this is probably because it is quite awful! Many of us snowflakes keep smiling and positive for as long as we possibly can, and we are probably dealing with a lot more than you possibly realize. We live with this every day. We try cope with it to the best of our abilities. We don’t use it to our advantage or enjoy being sick.

5. You need to get over this.

I would love to! I would love to not have to put 22 tablets down my throat daily. I would love to be able to walk up stairs without having to physically lifting my legs by the time I get to the top. I would love to not slur my words by the end of the day and have people say to me, “Shame, are you tired?” We do not put this on! And we would love to be “normal” like everyone around us.

6. You don’t look that sick.

No, probably not. Except for maybe if you see us late at night or if we are really tired, and our eyelids start drooping or we can’t smile properly. But MG is a nasty disease that drains all our energy and makes our muscles forget their job. We may not look sick, but we are fighting a constant battle with our own bodies.

7. Just drink water/eat yogurt if you are battling.

Shame. The people who have said this to me have really just been trying to help. They most probably did have my best interests at heart but just did not understand. When you cannot swallow, it means you can’t swallow anything — sometimes not even your own spit. I can count many a time where I had to use paper towel/toilet paper to soak up my saliva as I kept choking on it and it was dribbling out onto my chin. So drinking water or eating yogurt is not going to help the situation — I would probably need more paper towel to clean up the mess if anything! When I am having a good day this is perfectly fine, but when I am battling this is near impossible…

8. You need to get out more.

Walking makes me tired. Working makes me tired. Talking makes me tired. Flip sometimes even putting on a happy face makes me tired! So when I am feeling weak, the only thing I want to do is climb into my bed and sleep. I wish I could go out more. I wish I could spend more time with my friends and enjoy parties with them. I thrive off other people and their energy. It hurts when people say this to me, as I used to be very outgoing and a real party animal. Now staying up after 10 at home is a big thing! I often have to cancel/postpone plans as I realize my body just can’t cope and I cannot take the risk of having another relapse. On my good days I do as much as I can without overexerting myself (my mother may disagree here…) and I always go to bed much happier. I will come out whenever I can.  But please understand that my health is my number one priority and canceling plans hurts me a lot more than it hurts you. Please don’t exclude me from everything, though — I do feel like I have missed out on a lot with friends due to my MG and this hurts. Perhaps make plans for during the day over a weekend, or on a public holiday.  If I can’t make it at the last minute, be understanding. Don’t fight with me about it!

9. It must be nice to sleep so much and have everyone run around after you.

I have had plenty of people say this to me. Even some of my own family! I think some people take advantage of being sick, that is true. But I hate it. I hate that my husband has to carry in the groceries for me. I hate that I can’t help move the furniture around at work or home. I hate that often over a weekend I have to take an afternoon nap to see me through the day. I feel like I am missing out! I hate having to ask people for help, or even to admit that I cannot do something on my own. It makes me feel inferior and makes me have to acknowledge my illness. I wouldn’t sleep so much if I didn’t have to, and I would do everything for myself if I could!

10. If you exercised more, you’d get fitter and feel better.

Overuse of muscles in a person with MG makes them give up. So in other words, exercise actually makes us weaker! We can do basic exercises, but only when we are feeling strong and can cope with it. Sometimes walking from the house to the car is enough. I have tried to go to a gym class once before and fell on the ground unable to get up. My muscles had had enough and I struggled for ages afterwards with weakness all over my body.

11. Everyone gets tired.

Yes, everyone does get tired. But tired for you is very different to tired for me. We all cope in varying ways. Myasthenics get tired from a normal day at the office! Realize what it is that our illness does to us before you say such things.

12. You’re just having a bad day.

Hmmmmm…  Perhaps we are. But probably not. It is probably a normal day for us, but the first time you have noticed us letting our front down unable to keep up the facade any longer. Perhaps we are finally letting you in to see what we live with. Perhaps we are just having an “all fall down” kind of day. You can’t really tell us what kind of day we are having, though. You don’t know the battles we are fighting or what we are coping with on a daily basis. We say we are OK but that may just be because we are too tired to explain how we are really feeling.

13.  It’s all in your head.

Really? You think I would make something like this up? You think I enjoy this? Do you honestly think we would want this? I would not wish this illness onto my worst enemy. But it is very real. It controls my life. It shows me what I can and cannot do. It has built me into the person I am today, but it is most definitely not all in my head! It is not psychosomatic.

14.  There are people worse off than you.

Absolutely. I agree. And I pray for those people every day. But when people say this to me, it is said in a condescending way that makes me feel stupid or like I am putting this whole thing on. I am grateful for all I do have in my life and I do not need more negativity coming my way!

15.  Maybe if you lost some weight you would feel better.

Grrrrr! This one grates my carrot. Yes, I probably am looking bigger than I did last time you saw me. It is most probably as a result of all the medication I am on. These cause water retention, which in turn causes “moon face.” It is not attractive. I hate having pictures taken of myself and seeing how big I look. I am trying so hard to lose weight, but it is not easy. I cannot exercise, and I try to eat what I can — depending on how my swallowing is at that particular moment. But telling anyone, especially a girl, that they need to lose weight is like poking a sleeping bear. Not clever. I would love to lose weight — and I am trying. 

Sorry for this rant, but I needed to get it off my chest. For so long I have simply been accepting what people throw my way. I just want to create awareness for what people say. Watch your words. They can hurt. They can be taken the wrong way, especially when the other person is having a sensitive day. Every day we are fighting a battle. We try so hard to be strong and make it through the day.

Support us.

Love us.

Make us laugh.

Keep us positive.

Give us a hug.

But most of all, try to put yourselves in our shoes.

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