My Life w/ Myasthenia Gravis

 

Hi, this picture was taken this year when I was out doing one of my many little hobbies of 30 days of black and white art/photography. Needless to say it didnt last long due to the fact that I ended up sick with my asthma and I kind of over did it and I am not sure if it was my Myasthenia Gravis (MG) or the Potassium issues I have from time to time that caused my body and legs to just shut down on me for I had walked like four days at over 6,000 steps on each day. So I was just like outdone and over it.

My name is Ticy Cherall and I am 38 years young. I am here to tell you a little about my life with an auto immune disease entitled Myasthenia Gravis. This illness is a life long journey for me. I was born with it and diagnosed with it at the age of 2 1/2 years old. My mother discovered the drooping of my eyelids and the fact that I was not walking when I should have started and also that I did not have the proper coordination as most kids when it came to walking, running, and things of that nature but it was mostly my eyelids that was affected the most. 

First of all I would like to start off with explaining to you what Myasthenia Gravis really is. In my own words this is an illness that causes the main muscles of any JOINT to be weaker than the average healthy human. From your fingers, knees, toes, the corners of your mouth, eyelids, the muscles around your lungs/throat which can make it hard for you to swallow, and even your jawline making it hard for you to speak or chew. Below is the medical terminology of what MG is as written on www.webmd.com: (click below)

Myasthenia Gravis~The Baisc's 

 

Myasthenia gravis is an autoimmune disorder that causes muscles to weaken easily. After resting, the muscles usually become strong enough to resume activity for a while. Sometimes the symptoms may seem worse and other times you may have no symptoms. In myasthenia gravis, the immune system attacks the receptors used for muscle contraction. Treatment may involve removing the thymus. Follow the links below to find WebMD's comprehensive coverage about how myasthenia gravis is caused, who gets it, how to treat it, and much more.
 
 


As a child I don't remember having many issues with my MG but I mean who can remember their childhood when you have an auto immune disease right? Lol...Lucky for me I have THREE but that is another story. AnyWhoo! As I was saying, growing up with MG wasn't that bad in my childhood years I was able to run, play, and ride a bike with the rest of my friends I had no issues I even rode my bike with no hands HA! Some say that when you have an Auto Immune Disease it can be triggered by a traumatic event in ones life and I have to say prior to my MG giving me serious issues I went through several traumatic events in my life and one miracle. The traumatic events I endured in my life was being bullied all through school due to the dis-figuration of my eyes. With my eyelids being so droopy it caused me to be teased and taunted my entire middle years and junior high school years of school. I was teased and taunted so much so I did want to continue to want to go to school but my mother being who she was made me go and made me stand up for myself. I found myself ignoring the bully's and getting more involved with band, flag team, I even tried out for cheer-leading but I didn't make it. 

I have to say that I lived a very normal life until the age of around 14 and I started to notice that the changes of my legs and walking were a little different I started to experience them giving out on me during the middle of me walking down the hall way at school or even at home I would just fall out of the blue which was embarrassing. I couldn't read out loud for my mouth would get tired very fast and I would begin to slob/drool and had to swallow a lot while reading and well even at this age I still can't read out loud I have to stop from time to time or even wipe my mouth.
 

 (this is a picture of me when I was in the 7th grade you can see the drooping of my lids here)

In this picture as you can tell I went through my junior high school years and high school years with the droopy eyelids and I had surgery to correct this as well. I am not sure what the name of it is for it has been so long ago. However I can say what was done, I was under for a few hours while they input a silicon sling into the upper eyelids and attached to the eyebrow muscle and placed in the eyelids so when I raise my eyebrows it causes my eyelids to open so that I can see correctly. There is a surgery called levator advancement or resection surgery but this is when they go into the eyelid an shorten muscles so that the eyelid would help to raise the eyelid when the eyebrow is raised. That is not what I had but the end result is the same. Click below to read about more surgeries and other things on Myasthenia Gravis.

 


As I got older and the internet came more into play I begin to do my own research on this illness for my mother didn't really know much or understand a lot of what the doctor's had told her when I was going through filing for my disability. So when I got older I did my own research and found out that there are several ways this illness can affect ones body. MG can affect your upper body meaning your eyes, arms, and breathing, it can affect your lower meaning your legs, hips and toes or it could affect your entire body. For me I have it every where which is called Generalized MG. 

My mother noticed it due to the drooping of my eyelids which is ocular and well when my doctor (Dr. Garcia may he R.I.P) diagnosed me at age 2 my mother was at ease for she knew something by the time I was 12 I was retested. I went under some shock treatment where they hooked me up to a machine with a lot of props and little clamps attached to my entire body from my temples to every muscle and joint on my body and my muscles were shocked at several different voltages each time to see how far they had to go to kind of shock my muscles back to a certain level (I guess) it was to give them strength in a sense, but suffice it to say it didn't work. 

 

Going from the little girl on the left side of the picture to the grown woman in the right side of the picture took a lot and it still does. I am so blessed beyond measures to even be a live more than anything. Yes I have an auto immune disease matter of fact I have three: Myasthenia Gravis, HypoThyroid Disease, and Graves Disease. Plus I have Asthma and a host of other illness that are going on in this body of mine but I can say that I am ALIVE and that is a lot to me. I wake up every morning thanks to my faith and relationship with my God. I am here to tell a story and I wont stop until I have told it to as many people as I can. 

I do believe that I have all of the things going on in this temple/body of mine because God is using me as his vessel to inform others that he is real for most doctors are in awe when they meet me and see that I have all of what I have going on within me and I am still walking, talking, and independently taking care of myself. I don't need anyone to do anything for me I am a VERY independent woman. Folks do things that I allow them to do for me and yes I need help when I am sick and I take and appreciate all of what I get but I am more in my own space and place when I am doing for me. 

When someone lives with an autoimmune disease it is hard for them to pull back and allow someone to cradle them and take care of them especially when they are use to doing things on their own!

Once I got older and had my son I begin to find out more things about this illness like the fact that people with Myasthenia Gravis ARE NOT SUPPOSED TO GET PREGNANT! My mother didn't know this and I didn't either well at the time when I got pregnant I didn't really experience any difficulty until it was time for me to have my son and they gave me an epidural and I couldn't push him out due to the fact that 1. My muscles are already weak and 2. having the epidural made them SUPER weak and all I wanted to do was sleep. In order for me to have my child the nurse had to stand on a stool above my head and I had to let them know when I felt pressure from the contractions and the nurse would push down on the top portion of my stomach and she would then push downward to help my son come out and well due to the fact that he had swallowed some meconium (the dark green substance forming the first feces of a newborn infant.) he couldn't cry, they wanted to get him out before he swallowed it and well that didn't work either for as soon as they got him out (he stayed in to long cause I could not push on my own) the first thing he did was try to cry and the substance being so thick was swallowed and lodged in this left lung causing him to not be able to breathe and turn grey in color. They rushed him to the NIC-U and well after cleaning and stitching me up and moving me to my private room I was able to see him (hours later) they brought him in to see me he was in a little NIC-U bed I couldn't touch him, they had tubes and machines attached to him it brought me to tears to see my son this way. Even though I was only 18 when I gave birth to my son it broke my heart to see him like that I had no idea that being a mother and feeling all of those emotions were even possible until they rolled him into my room, at that moment I was in love and no longer hungry...

For 1 1/2 months my life was turned upside down for he was air lifted to another hospital to be taken care of. The hospital was an hour away from where I lived, that was the most hardest time of my life but in the end it paid off for now he is my baby boy...


All in all he is here in this world he is at the age of 20 years old now and I have to say he is my best friend, he is my blessing for without him being a part of my life there is no telling where I would be right now. Being raped at the age of 14 and being bullied all of my childhood and even some of my adulthood I don't know what I would have done if I did not have my son to live and fight for my life for.... I had to fight for my life in order to take care of his life and if not for that there is really and truly no way of knowing if I would even be here for I have attempted and contemplated suicide on so many occasions as a young teenager before I had my son and even after I had him but looking in his face as kid sitting on the floor playing with his toys just made me snap back to reality and I realized that God has blessed me with this life to take care of, he gave me this special gift at such a young age for he knew and still knows that this responsibility that he has bestowed upon me was NOT to much for this COUNTRY GIRL TO HANDLE... 

At the age of 25 I was set up to have surgery, around that time my son was only 7 years of age (maybe 8) I was going in to have a surgery called Thymectomy, (What is a Thymectomy?) which in short is the removal of the Thymus Gland which is (What is a Thymus Gland?

At the time when I had my surgery it was supposed to be a four hour surgery but it ended up being a six hour surgery that left me with a beautiful scar. Granted due to the fact that it has been over 1 years ago since I have had it done my scar has spread at least one of them have for I have two. One across the lower part of my throat one down the center of my chest... and the one down the center of my chest as spread due to weight gain or just life not really sure...but I can say it didnt start out that way...
 




I have to say due to the surgery and the removal of my thymus gland I went into remission several months later and haven't really had any issues with my MG until recently and the jury is still out on the issues that I have been having for they can't tell if its due to low Potassium issues that I am also dealing with. I have to say that all in all I have been through a lot and am still going through a lot but I am still here and I am alive so that is a lot to be thankful and grateful for. 

It is known amongst some doctors and studies that once you are diagnosed with one auto immune disease you are more than likely to get another one and so far it has deemed to be true for me for I was born and diagnosed with Myasthenia Gravis and then when I got pregnant with my son at age 1 I was later diagnosed with HyperThyroid Disease at the age of 18 and later after I had my son and went through RAI which is Radio Active Iodine procedure I was diagnosed with HypoThyroid Disease and then Graves... These illness will be discussed further in later blogs that I intend to write. My experience and life with these illnesses for now that I am getting older in age I am experiencing different side effects from them as to when I was younger and had no real life threatening or should I say life changing experiences with them. I want to update this blog later on with more pictures of me as a child so those who read this can see how my eyes truly was before I had surgery to correct them.


To read more on Myasthenia Gravis please go to the link below and there you will find more detailed more information on this illness and you can also search for others....Thank you in advance for reading my blog...

 

 

~Ms. Social Butterflyy ~


After all I have been through and reading my blog with all of the auto immune illnesses that I have here is me now as of a few days ago...

 

 

 These eyes have been through so much and say so much about the soul of the woman that lies behind them. At the end of the day the quote that goes "Your Eyes Are The Window Of Your Soul" is more than true. So before you judge someone on their situation and what you see them going through or doing take the time and LOOK into their eyes and ask them "What is Your Story?" or "What is Your Journey?" Because at the end of the day you can't just judge a person off of what you see or what you have heard or by the company they keep...

 
~Social Butterflyy ~





 

 






 

Published by Life of a Unique Woman