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My Myasthenia Gravis Journey

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Wow, how do I even begin to embark on this first blog post? It’s been months in the making, documenting every detail in my head. I hope I get it all down! Let’s just jump right in…

I was diagnosed with Myasthenia Gravis in January, 2015. You may be asking yourself: What the hell is Myasthenia Gravis? I asked myself the same thing, about a million times. Even after the countless doctor visits, I still couldn’t believe what I was hearing…

It all started in the beginning of December, 2014. I would be working on clients and felt like someone was pushing down on my shoulders and triceps. It was an unfamiliar fatigue that I had never felt before. Then came the daily naps that felt like hell when I tried to get up. I just wanted to stay in bed all day. Christmas Eve came along, time to spend quality family time with my loved ones, and I didn’t even want to leave the house. Getting ready was a chore and when I finally arrived I just wanted to turn around and go back home to my bed. I distinctly remember bending down to give my mom a kiss and feeling like my knees would buckle if I went any further. I told her to get up because I couldn’t bend down and she responded “Thats why I don’t wear heels!” I didn’t have the energy to explain that if I went any further, I would probably fall.

December 27, the first major sign that I knew something was wrong, my right eyelid began to droop.

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I scheduled a doctors appointment and a blood test for the following week, but all my symptoms began to worsen till then. New Years Eve was spent in bed. My arms and legs felt like Jell-o. I began to feel dizzy when I was standing for too long and my eyes refused to focus. The next day I started seeing double. This was definitely one of the hardest symptoms to face. I began wearing an eye patch, which is the only way to normalize your vision. A temporary, funny looking fix.

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I really didn’t know the severity of the situation, but I knew something was definitely wrong. I still thought I could “power through”, a common thought when you have a tough girl attitude. I would need to give this up RIGHT AWAY. MG doesn’t let you power though mentally, it takes your nervous system and crumbles it into a million pieces.

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I will never forget the first sign of “Oh shit, I need help for every task”

I was visiting my sister and she had a bunch of friends over. All the guys were in the man cave watching a fight, the girls downstairs in the kitchen eating and drinking. I was in my nieces room watching Netflix, resting in her bed. My sister had brought me coffee and left it on the nightstand. I tried to reach over and in reaching over I dropped my hair tie on the floor. I bent down to pick it up and could slowly feel myself falling off balance. The worst part, I couldn’t stop myself. My arms refused to help me when I needed to hold onto something. My whole body weight lands directly on my face. Yes, this is what a “face plant” looks like! I remember being in complete shock, not being able to cry, just being able say “Ah shit” and start calling for help. No one could hear me, I just laid there until my strength came back. (When you take a dip, you have to wait it out, and slowly your nerves will come back.)

A similar incident happened at my house the following week. By this time I needed help just to stand upright in bed, get up from a seated position, and walk upstairs. (My lucky husband got the task of lifting my off the toilet 3 times a day!) One night I found the strength to get up on my own (not wanting to wake my husband from his sleep) and walked to the bathroom for a midnight tinkle. As I tried to get up from the toilet (thinking I felt okay since I got out of bed on my own) my knees completely lost feeling and I fell sideways onto the floor. Now I’m laying on the bathroom floor, half naked and lifeless. I think “Holy shit, if Armen wakes up right now and sees this he will freak out. I don’t want him freaking out! Let me wait it out and get back to bed…” I somehow found the strength to army crawl to the sink (no feeling in my arms), used my chin strength on the sink to lift my body up and finally get to my knees. I pull up my pants, take a few deep breaths and I can feel my legs again! I get up, get in bed, and act like it never happened.

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Once officially diagnosed with MG, my neurologist orders a cat scan to check for a thymoma (a rare, usually benign tumor arising from thymus tissue.) 15% of patients with MG have it.

CDR729194(thymomas are tumors grown on the thymus gland)

Once that was taken care of, now we wait for results. In this time, I begin taking Mestinon to regulate my symptoms. Usually MG patients experience a couple symptoms of the disorders. Not this chick! I had every single symptom associated with the disease. Lets go down the list: Eyelid droop, double vision, difficulty swallowing (water would come back up through my nose when I would drink) , problematic chewing(I would begin chewing and my jaw would just stop completely), shortness of breathe, slurred speech, trouble holding up my neck on my own, getting up from seated position, leg and arm weakness, and change in facial expression (say goodbye to selfies!).

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As of now I’m still living at my condo, having round the clock care from my husband and eldest sister who would come over and bring me food and clean for me. I wasn’t able to work anymore and leaving the house was just too difficult. Daily visits from my friends and cousins was much appreciated. I tried keeping the details of my disorder to anyone who asked, but I also didn’t want to scare my family until we had a solid plan for recovery. If anyone knows my family and I, we don’t like divulging too much personal information and like to keep things private. Even when I would get visitors, I’m the type to smile and act “lively” for the duration of their visit, just because I didn’t want them to see me in pain or anguish. What hurts me more than any of this physical pain is to see my family hurting. I never wanted them to see me and get sad or not know what to do. Even when we would explain the diagnosis I could still se a little confusion (which is normal) or sadness in their eyes.

The day I found out I had that damn tumor, I was at my sisters house taking a nap and my phone rings, it’s my husband. I thought he was going to tell me he was coming to get me but instead he tried to sound normal and asked if the doctor had called me yet. I told him I was napping and he began to tell me he had just got off the phone with him and the cat scan result came back positive. I have the tumor. We talked for a couple minutes and I could feel myself losing it. I told him I had to go and we will talk later. I just stared at the ceiling, tears streaming down my face, not being able to process what would come next. Immediate removal is the next step. I was scared shitless from this point on. Open chest surgery?! I had never had any surgery before, let alone something like this!! Knowing my symptoms and disorder, surgery is no easy task for a MG patient. At this point in the day I’m feeling confused and panicked. I get up to use the bathroom and I just realize “Shit, I wont be able to get up on my own.” My sister has gone to pick up the kids and it’s just the housekeeper and myself in the house. I hear my dad walk in, but obviously he cant help me off the toilet. I yell to him to bring the housekeeper to help me. This was just straight up embarrassing, but I had no choice. She comes in a little unsure of whats going on. I explain to her I need help off the toilet, she isn’t very strong so of course, I fall. We finally get my pants up and I tell her to bring my dad. He proceeds to help me to my knees but I tell him I want to stay on the floor and not get up. My shortness of breathe is kicking in and I can feel myself not being able to catch onto my breathe. The only way to stop this is to close my eyes and meditate. My dad looks like he is going to break down so I tell him to be quiet and just sit with me. We sit there for about 15 mins and finally I can breathe again.

This wasn’t the end of my falls, the next day I had my dad take me to my ear cleaning (yes, I get my ears cleaned once a year) and while getting out of the car i knew I needed help. I asked him to help me up, but something happened with my balance and I fell to the side. It was a narrow space between the car next us and my dads car so it was hard for him to reach me. My poor dad, he didn’t know what to do. He better get used to this feeling, this was only the beginning.

396060_10152174353564625_1080763722_nMy Pops.

You would think I learned my lesson, but my hard headed stubborn ass still couldn’t process the fact that giving up and asking for help is a good thing. It doesn’t mean you’re weak or incapable, it just means YOU NEED HELP RIGHT THEN AND THERE! Within the next week a huge blow to my recovery happened. I toppled down a flight of concrete stairs in the middle of the night and ended up in the ER. Thank God my husband was with me. With blood everywhere and my body shaking in shock, I sat in the ER for about 6 hours and finally got stapled up.

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From that night on, I completely gave up on stairs, they are officially the devil to me. I began living at my moms house where I would never be alone for fear of something like that happening again. That day is when I finally realized why God gave me 5 sisters. They all took on the role of nurse and had their own jobs. One would sleep next to me, change me, shower me, blow dry my hair, clean for me, run errands for me, bring me food, and keep me company. My mom would cook for me every day and help me go to the bathroom when my husband was at work. My dad would come every day and keep me company when it was time for my mom to go to work. What a swell team I had!

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Now came time to pick a surgeon who has experience with MG patients. January 30 we had two appointments, one at UCLA and one at Cedars Sinai. The information at both was pretty much the same. It was interesting getting a feel for the staff and doctors though. They were worlds apart. Both equally qualified, but I definitely felt “at home” with one more than the other. After deciding which one I wanted, I got a referral for a top neurologist at Cedars Sinai who ultimately became a HUGE part in my recovery. Funny how these things work out.

The next day, what I thought was a routine appointment with my new neurologist turned into a complete meltdown in front of the doctor and his staff. I began to cry after failing all my field tests (lifting arms and legs, holding my eyesight in place, and testing my overall strength). My lungs started to close up on me and I can feel my heart pounding from frsutration. My breathes became shorter and shorter and my neurologist informed me he would have to admit me to the Cedar Sinai Emergency Wing immediately. After about 10 minutes, I calmed down and he explained to me that what just happened is the leading cause of death with MG patients. He would not be able to send me home after seeing my symptoms had become so dire. Thank God for this. After getting wheeled straight over the the ER, I was processed and moved to ICU. I had my surgeon and my new neurologist and their teams verbally prep me for the process to come. At one point there was about 20 people in the room, basically giving us the worst case scenarios that could happen. Little did I know, it would happen. My sister and dad were with me throughout this first day of admittance and were there to retain all the information from the doctors and nurses. I could see the frightened look on both their eyes. I heard what the doctors were saying, and now seeing it on their faces, it’s almost too much to handle. Doctors can be overwhelming, so it’s good to have others with you to ask the necessary questions, especially when you’re too sick to even think.

The first thing explained to me was that I would need to have 1 week of plasmapheresis in order to get strong enough for surgery. To read about plasmapheresis, visit this link:

http://www.healthline.com/health/plasmapheresis#Overview1

The process of cycling your blood is fascinating and I was interested to see if it would work. And boy did it work!

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 It all happened so fast that the next thing I know I am being hooked up to various IVs for my first round of plasma! By this point, I was used to getting poked, but two big needs (one in each arm) sucking out your blood sure was painful! By my round of plasma, my husband and mom had arrived and were getting clued in on all the procedures that were coming. I tried to crack jokes and not let them see the pain on my face, I hope it worked. I just kept smiling and telling them it doesn’t hurt. (Huge lie!) Having a kick ass plasma nurse sure helped too. Jenny, I love you!

It’s amazing how modern medicine works. By my second plasma treatment I could tell my vision was coming back. No more eye patch! Little by little I was able to lift things again, use my legs, and breathe better. I slowly had my friends and family come and see me before surgery. My sisters and parents came every day to keep me company and my wonderful husband slept on a chair in ICU. My poor angel was too worried to leave me, fearing something might happen while he was gone.

On the 4th day of plasma, the veins in my arms began to hide, which often happens with frequent use.

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They informed me they would have to start doing plasma through the artery in my neck from now on. That sounded scary when they start explaining it, especially since I would be awake for this small procedure of bringing out the artery into a tube. Once they got started, I started feeling a lot of pressure and pulling in my jugular. I was numbed in the area, so I didn’t feel any incisions thankfully. They began squeezing my vein into a tube and that tube had a double splitter. That sounds painful doesn’t it? It wasn’t. Just really fucking uncomfortable! I silently cried the entire time, just waiting for it to be over so I could get back to my husband, who always made me feel calm. Once that was done, I immediately went into a plasma treatment. Each treatment takes about an hour and you cant move at all, so I just fell asleep. Oh how I wanted this day to be over already!

Seven days of plasma prepared me beautifully for the surgery. The day before surgery I remember feeling back to normal. I couldn’t believe I could use the bathroom on my own and walk around the hospital floors. I felt like my old self again. It was nice, and temporary.

The morning of surgery I was feeling very calm and ready. My best friend came to see me off, along with my mom and husband. I remember feeling really hopeful and even though everyone looked nervous, I wasn’t. They prepped me and let me chill with them for a little while they got the surgery room ready. Once it came time to say all my goodbyes, I was actually excited. Like “Get this thing out of me” excited. Saying goodbye to my husband was actually one of the hardest things I ever had to do. I just wanted him to be near me.

They wheeled me down the hallway and I remember looking back and seeing my mom crying as she walked away. Seeing my mom cry is always the hardest thing for me to take. That made me panic. I started doing breathing exercises and talking to the nurses just so I wouldn’t cry. They asked me if this was my first surgery, I told them yes and they kept reassuring me “You will be fine.” Once I was in the surgery room, I felt cold. It was so sterile and dark in there, I literally felt like I was going to pass out before the meds even kicked in! I started shaking uncontrollably and the anesthesiologist kept asking me questions to calm my nerves. I just remember trembling and wishing my husband could be in the room with me. It seems as though he is the only person that can make me stop shaking. I tried to remember when I was in the ER (from when I fell down the stairs) and I was shaking like this. He would look me straight in the eyes and sternly tell me  “ANG! STOP shaking, it’s all in your mind” and I would slowly stop. It amazing what a calming force one person can be for another person. I guess that’s why our stars aligned and we were paired. I can’t imagine going through ANY of this without him.

IMG_3852(My rock)

Surgery went without a hitch, and everything was a success. All of my immediate family was in the waiting room tracking my progress throughout the duration.

That night I woke up in my ICU room with drool running down my cheek, not being able to speak due to the tubing in my throat. I remember seeing my husband staring at me, once he saw that I woke up he jumped and asked me if I was ok. I nodded and kept bugging him to wipe my face. Poor thing didn’t sleep a wink that night. A day after surgery I remember having trouble moving around, I felt so stiff. A couple family members and friends came to see me, but it was all a blur. I hardly remember any of it. I do remember telling everyone “I feel great, I’m fine” but I guess I’m just used to saying that. I felt horrible, in pain, and nauseous.

Passing a bowel was increasingly harder every day that passed, and my stomach was starting to look like a bowling ball. They tried everything, yes EVERYTHING to get me to pass one. Pills were stuck in places where the sun don’t shine, drinks were drank that tasted like shit, yet to no avail. Finally, they told me they would have to stick a tube down my nose into my stomach in order to take out all the bile that had built up. Great!!! I kept putting it off, but finally my husband forced me to do it. A container filled up VERY QUICKLY  with all the nasty brown bile that was in my stomach. My nausea immediately went away and I was starting to feel better. A couple days passed and I was starting to walk and get some energy back. The only thing that I felt took a little longer to regain was my breathing. I still couldn’t take huge breaths without it hurting.

On February 14, a few days post surgery, I started getting an itchy tingling feeling all over my body. That day they were thinking of moving me into a regular recovery room and out of ICU. I got excited because that meant one step closer to getting home. Once they moved me officially, I started having hot and cold sweats. I had an uncomfortable gross feeling all over my body and I couldn’t seem to convey it to my nurses. I wasn’t only in pain, but I started kicking my legs and losing the ability to breathe again. They decided to move me back to ICU to keep a closer eye on what was happening. And, well that’s when the worst happened. Since my breathing patterns were so bad, I wasn’t getting enough oxygen to my brain, and I passed out.

The last thing I remember was my nurse asking if I was ready to take a walk. I agreed, but then told her I needed about 10 mins until I was ready to try standing. My sister was with me that day and waited with me until I was ready. I remember she fixed my pillows and then sat back down to check the time. After that, I slowly dozed off and then saw black.

During what seemed like an eternity, I was having terrible nightmares while I was out. I could hear my doctors and a couple family members yelling at me to wake up. Walking back and forth in the ICU room crying and shaking their heads. They would tell me to “Remember the happiest time in your life, and you will wake up…” (I would think of my sisters and I playing in the backyard as children, my wedding day, playing with my nieces and nephews. But nothing was working and everyone was getting increasingly frustrated with me.)

I could hear someone repeatedly typing on a keyboard, and the worst part I remembered: a clock ticking. Time was running out. I wonder what this meant? I was stuck in my subconscious and couldn’t break free. I wanted to scream to them that I could hear them and I’m not gone!!

In this time I could feel needles being administered into my wrists, I could feel intense pain in my arms. What I didn’t know is I was actually getting multiple scans and a plasma treatment while I was out. I felt everything. I could hear doctors and nurses talking, but not being able to make out what they were saying.

They had taken me to get an MRI while I was out, to check for any brain damage, luckily I checked out ok! I think 😉

The next thing I know, I was in a new ICU room and staring up at my sisters. They were at my bedside holding my hand. I motioned to them to take the tube out of my throat and they just kept saying “It’s there for a reason. You passed out. Don’t worry, it will be out soon.” I had never been so frustrated in my life. I wanted to know what happened! I wanted to talk to them! Why was there a tube down my throat again? Was this the surgery wake up? Wtf is going on?? One sure fire way to piss me off is take away my ability to speak! Oh hellllll nooooo!

I would fall in and out of sleep (I was technically still under sedation) and see new faces every time I woke up. Finally when I fully woke up I begged my nurse to help me out! I was tied down to the bed (apparently people rip their tubes out of their own throats???) I ain’t about that life! I don’t want to wreck my vocal chords! She made me promise to behave and she would untie me, she did, and I did :-)

A day or so went by and I started getting that tingly feeling again. I couldn’t seem to get my lungs strong enough to take deep breaths on my own and I could feel myself slipping again. My husband and all the nurses weren’t going to let me pass out again so they told me I had to wear a BIPAP mask (it shoots air into your lungs for you). I tried it and hated it! It felt like I was choking on air. I refused it over and over for about an hour until my husband finally had enough. He grabbed the mask, then grabbed my face and then I saw “the look”. I know that look he gets when he’s had enough! He screamed at me “Do you want that tube down your throat again???” I cried and told him no. Then he forced it onto my head. If it wasn’t for his persistency I would have passed out again. I didn’t even know what was good for me. I was sick of all this hospital shit and just wanted to go home.

Finally after 15 minutes my levels started to normalize and I could feel my body stop sweating! I hadn’t been this calm since before my surgery. The BIPAP let me take naps and build up my lungs again. Godsend!

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After a couple days I was steadily improving and then transferred to a regular room and was given a release date. Yippee! I was getting better and better by every day and could finally receive visitors again.

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My cousins would come and keep me company throughout the day and with that, time seemed to go faster. I felt like a prisoner awaiting release! 3 weeks in the hospital was way too long for this girl. As much as I missed my friends, my family, my work…the only thing I wanted to get back to was my baby Lucky. Being away from my dog was definitely one of the worst parts about this whole ordeal. I had spent virtually every day with her since I got her. Being away from her for even 1 day was torture for me in the past. It’s been 2 1/2 weeks now and I was starting to forget what she smelled like. I hope she remembers me when I do see her.

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Finally on the night I was scheduled to go home, they had to remove all the IVS from my arms, the tubes in my stomach, and the splitter in my neck. I can still remember that feeling of being held down and the immense pressure from each puncture. My neck didn’t stop bleeding for an hour! Yucky indeed! If I could run out I would have. Instead, as a sufferer of MG, I walked slowly out of the hospital and into our car. I had the window down the entire time and smelled the fresh air that I had been missing for 3 weeks. We drove to my moms and I was reunited with my baby Lux. All is well in the world again, but it was actually odd, she was a little unsure of who I was. It seemed as though she couldn’t remember me. That made me sad, but I was just happy to be around her. She has an infectious happy spirit. She is my spirit lifter, everyday. Oh and I finally got to sleep through the night, no medicine visits at 3 AM! WOOP WOOP!

IMG_4120(A warm welcome)

IMG_4188(my babies Nala and Lucky)

IMG_4208(my mom cleaning for me :) , yes that’s a bed in the middle of the living room!)

The first week at my moms I would sit outside at the hottest part of the day and stare at the trees, the sky, the birds chasing each other all around the hill. I loved feeling the heat on my face and listening to the sounds of nature. My mom’s house is the best place for that.

The next plan of action a couple weeks after I got home was to start my radiation. Although the tumor and it’s “arms” were all removed, there are still microscopic entities that may have remained, and radiation was the next step in making sure those don’t turn cancerous. My treatment plan was Monday-Friday for 5 weeks straight. The first session was nerve-wracking, you don’t know what to expect, but it was virtually painless and pretty cool I must say. You lie on your back while they prep you for about 4 mins, then they leave you in the room and 4 machines rotate around you for about 7-8 mins. It’s like one big x-ray. I experienced redness and itching on my chest and fatigue (the major side effect). Every day I would take about a 1 hour nap just to regain my strength from the process. The 5 weeks passed seamlessly and I was trying to get back to work as quick as I could.

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In this time I was still taking my Mestinon and the steroid for my MG. My face had doubled in size and I didn’t want to show my face anywhere. A common side effect in high dosages of Prednisone is the “moon face”. You gain fat pockets all around your face giving it the round moon appearance. Not fun for someone who uses her face for her work : /

I hated looking in the mirror. I still see it sometimes at certain angles. But who cares when you’re HEALTHY!

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As months went by, my neurologist was lowering my dosages of both medications, and my body was adapting. I was starting to drive again and get back to normal life but I could still feel myself getting really tired around big crowds and long days. I couldn’t overload my schedule, 1 errand a day max. This is hard for people to understand. Some days I could be in bed all day, make plans for a late dinner, and then not even want to get dressed. And how can you explain to normal bodied individual that you’ve been resting all day but it didn’t seem to be enough? The ins and outs of MG are incredible, they are frustrating, and they are TIRESOME!

I had only 1 setback since I got out of the hospital, I had overloaded my schedule on a Saturday and wasn’t able to get out of bed until the next day at 7PM. Yes, I slept from 11PM Saturday till 7PM the next day. We missed my niece’s birthday and freaked out my husband. He was ready to take me to the Emergency Room, but I assured him all I needed was rest, and lots of it. I know my body now, I know when it’s good to go, and I know when it’s not. Ever since then I am able to regulate myself a lot better. It’s now August and I’m able to work whenever I want and I almost feel back to normal. It’s funny how sometimes I still can’t believe what I went through. Getting up on my own, being able to walk my dog, and taking huge breaths in and out are well appreciated now.

Sometimes when I can’t sleep at night, I relive some of the experiences from this year over and over in my head. Yes, I cry, a lot. But mostly because I realize how amazing it is to be surrounded by family and friends that would do anything for you. When I think of the sacrifices my family and husband have made for me, it fills my eyes with tears. In the hospital I would get overcome with bouts of guilt for putting my family through all of this. I guess this is normal? My dad sensed a change in me after I passed out that dreadful day. I didn’t want to see anyone and was in a deep depression. But he made me realize that this is just another hurdle that life threw at me. This is the reason why family was given to you. To help you out when you need it. And he’s right, if any of my sisters were in this state, I would be right there for them, so what’s there to feel guilty about? Each and every day my dad would tell me “One day we are going to look back at this time and it will be a distant memory, a bad dream.” I do that now. In the oddest of times I will think of the worst day in the hospital and say to myself “What a damned day that was!”

I look around and see so much foolishness in the world. I used to be part of that foolishness. Humans have a way about them, always feeling untouchable. I constantly remind people not to have that “It won’t happen to  me” mentality. Don’t go through life thinking your invisible to all it’s hardships. Even before this, I thought of myself as a compassionate person. Who knew I would need all the compassion in the world to heal my broken spirit. But as broken as I thought I was, nothing can compare to the strength you force yourself to showcase in your hardest times. My sister would say “That’s a strong bitch!” when I was in the hospital receiving my painful treatments. But what choice did I have?? I couldn’t break down in front of my loved ones! The only thing worse than hurting is to see your loved ones hurting. I’m a Libra! We ARE strong bitches! LOL!

Some people commonly ask me “How did you get through it all? We couldn’t tell anything was wrong?” I always tell them it’s just in my nature to act as if everything is fine. I remember as a child if I was sad or hurting, I would never show it. I would walk around like everything was fine and dandy. And even in my worst of times, during my worst pains, I would tell myself mentally “Take it like a man! Don’t be a little bitch!”

In hinds sight, I should have been saying to myself “Take it like a WOMAN!” After all, we run this fucking world.

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My first blog post is dedicated to my indescribable husband: You are my angel.

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9,125 thoughts on “My Myasthenia Gravis Journey”

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