I love this book by the way
When you have Myasthenia Gravis there are things you just do not always have control over and even when you are stable and have taken all your medications, when you are really tired and have and exacerbation (have over exerted yourself) your body will tell on you. For me the first thing that usually tells on me is my mouth or more specifically my speech.
I will be talking to people and my voice begins to sound nasally to me and when I mention others will swear they don’t notice it. But I know I know it’s coming. Then by the time they notice it it’s far too late I am about to sound like a drunken loon. My tongue speech slurs and then my tongue just gives up altogether along with the soft palate of my mouth and they just die all at once.
When they die they I just have to let them recover. There is nothing I can do. I cannot eat, drink, or anything. I can barely swallow until they recover. I have to just wait it out. Sometimes it comes back in a matter of minutes, sometimes it takes hours. If it takes longer than that…Well then I am usually in crisis and need to be admitted to the hospital for treatment.
The funny part is when it happens in the middle of a conversation and people are looking at me like I am having a stroke…Or when I explicitly warned them that I was getting nasal and they said they didn’t hear it then my speech slurs and becomes incomprehensible and it is uncomfortable for both us because now I am stuck trying to finish saying something important that I was trying to tell them should have been left for another time when I was stronger to talk about the subject or could have emailed to them.
People are just hard-headed. I mean i get phone calls from people who do not understand my disorder at all because they refuse to take the time to understand it, people in my own family and then look at me confused when I will not speak to them. No I will not talk to you if I have to keep explaining my disorder to you and you are not mentally disabled and you claim to want to be so highly esteemed in my life…NOPE.
The funniest thing is that I use the dragon technology thanks to my mom and her brilliance and it understands me when my speech becomes incomprehensible. However when I speak normal it has no idea who I am. So I had to create two profiles and train it twice. That was hilarious. I have two completely different speech patterns. They are truly that distinct! I recorded myself and I honestly sound like a person who is deaf and who has never really heard speech before perhaps a bit more stunted when my speech goes. I find it truly amazing. I do not like speaking to people when I get like this, expect for my doctor who I do not mind letting him and his school and students study me (I love letting others learn, especially if it helps find a cure).
My parents are great about it! My husband takes it in stride. He doesn’t miss a beat when my voice goes, he doesn’t even acknowledge it though I know he hears it. I just have to remind him when he hears it that it means I will have trouble eating certain things because he forgets that. He knows I usually need rest and now without even missing a beat he is usually trying to get me comfortable checking one me asking if I’m ok or if I need something because he sort of knows something is not right if I am slurring so badly. But all in all I usually just tell people I am ok, I am not drunk or intoxicated though sometimes I wish I were but my mouth has a mind of it’s own and may be!
And here is another riveting edition of the dramedy that some would call my life, LOL. I call it an action drama! I find it jam packed full of action and comedy. I do not find much on the front of drama but I I’m not sure they have a catchy name for action and comedy yet!
Anyways, if you have been following my blog you know I struggle with Myasthenia Gravis (MG) an autoimmune and neuromuscular condition. If you are new to the blog…Welcome, LOL. It It weakens me at times but it doesn’t stop me and herein lies the problem sometimes, LOL. Sometimes I underestimate what I can do because I believe I can do more than I can or I push harder than I should. I am so used to being super strong because I work in a profession that has embodied such and I will not falter in that thinking that I forget that I will have weak moments physically, LOL. (I’m a Sr. Health Fitness Specialist and I have degrees in psychology as well).
- So when you decide that you are going to go shopping and until you drop and you actually DROP… WELL all you can do is laugh in the irony! At least I do!
- Or when you decide I have worked out and your muscles are nice and sore (because I love that feeling) and you go to foam roll and you can barely lift your body onto the roller and then get up and stagger like your favorite scene out of NAT GEO WILD and die laughing but no one else knows why you are laughing…
- OR the final moment of FUNNY… you go to do your hair and your arm gets tired and you refuse to rest because you are almost done and you know you can fight the fatigue and have one pin left to do and WHAM you arm drops and slaps you right in the face! A true slap of reality that all you can do is laugh until you cry real tears doubling over until your belly hurts. (I could not even get the words out to my husband of what happened because I was laughing so hard)
Though these things improve with rest and treatment, some people ask me how I could laugh! I say I have a great sense of humor and I know that God will be there to catch me. I also say I am still alive and it could always be worse. I have been worse and I know that this is just me being stubborn and silly! I prefer to laugh as I have always done in life because laughing is better than and in the end if I can laugh, it means that I can heal faster! I really and honestly felt the laughter in those moments, it wasn’t forced, and people may say I was sick for the thoughts in my head at those times, but it is what helps me get through my life, why focus on the bad all the time? I prefer not to be a sourpuss all the time!
FIND YOUR FUNNY!
Cooking is one of those things that we all say we either love or hate doing, can or cannot do! But I can do it and I love it when I create something that fills my belly and tastes amazing it makes me want to cook something else. Even if I just ate just to eat it for later, LOL. The problem is that with MG I struggle to make certain dishes especially baking dishes because it can require a lot of mixing and mashing. I end up not being able to be as authentic as I would like and that can taint ‘clean’ my dish is. I like to cook healthy and I like to know what is going into my food. Though I do not always garden my dad does sometimes and so do some friends and they give us fresh veggies and fruits at times.
With MG repetitive motions cause extreme fatigue and results in what I call the dead muscle syndrome. I end up with a muscle that was used too much unable to be used again for hours and sometimes not properly for days. If it was my hand or wrist I am in trouble because then I cannot properly use it for a days at a time and your hands are needed for quite a lot of things aren’t they. I struggle to open drinks, cars, put on my clothes, push up on things, pull the seat belt, do my hair, brush my teeth, and the list goes on. My hand begins to tremble just trying to hold carrot.
I have bought more tools to help me. Many people buy tools they never use in their kitchen because they either do not cook often or they just do not use them. I on the other hand have no choice if I am to be able to function in normal life. I want to have it all. So my mom heard my cry when I said I was going to buy a mixer and beat me to the punch, lol. She bought me a new blender and a food processor. I can hardly wait for it to get here. I already have the ingredients for a no bake peanut butter pie!
Next few things on the menu with be some dips, hummus, and stuffed meats! YUM!
So I get asked often about my disorder when I share that I have it. These are usually the days that I am symptomatic and I usually do not WANT to share because I am tired or struggling and cannot share easily because I am slurring or having issues breathing or swallowing but it is the best time for them to learn. I wish then that they would go to the websites I suggest but I know they will not so I share anyway despite how I feel.
- What is it?- Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body.
- Does it hurt/ do you have pain with it?- Not usually unless you have a comorbid (another disease or disorder with it) issue like arthritis, obesity, or diabetes. You are usually just fatigued mentally and physically.
- Will you ever get better? Is there a a cure?-It can get better with treatment but there is currently no cure
- How do you manage it?- With Immunosuppressants, steroids, and in my case plasmapharesis. Your life becomes these things and hopefully overtime you are able to taper done the doses of the amounts you take from when you were first diagnosed while staying stable.
- Can you still have children?- Yes, but you may not have as many and you are likely not going to get a natural birth as pushing is a muscularly fatiguing exercise which is dangerous for us myasthenics. Therefore we are limited for such a strenuous and highly repetitive endeavor and must have a c-section if we are cleared to conceive. Moreover, we are usually told to wait 2 years after diagnosis because of the increased risk of respiratory failure that can occur with myasthenics. I almost experienced this and was in denial of this ever happening to me and was glad that we did wait and not push the envelope.
- Is it contagious?- No, it deals with a defect of transmission of nerve impulses to the muscles. Therefore no issues with bacteria or viruses there for you to catch.
- Is it hereditary? Is it genetic- Myasthenia gravis is not directly inherited. Occasionally, the disease may occur in more than one member of the same family.
- Can you still have a normal life?- You can have as normal a life as can be expected when you follow your medication routine and work with your team of doctors. You can still exercise, eat a normal diet, and all have fun. I still enjoy everything I did before but with more rest breaks. But as we get older we tend to have to do that anyway right, LOL. The key is to plan those rest breaks and let people know when you need to rest and/ or if you do not feel well. Otherwise enjoy your life!
Additional questions can be answered at websites such as:
This video is perfect because it tells the story of how this can happen to anyone gives a short bit of insight into the life of a person with MG.
So there are times when you find that you are busy or you are enjoying yourself and you notice you start to feel very tired, fatigued, or all your symptoms start hitting you at once out of the blue after being controlled for a very long time. If you are stable and you cannot seem to figure this out it is highly likely that you missed a dose of your maintenance medication which for many of is mestinon (pyridostigmine).
I carry a pill caddy or pill organizer that is divided into days of the week and morning and night. Though there are ones that are more advanced that have more divisions in them. This suffices for me for now. However, there are days that I makes mistakes when I am tired. At the beginning of each week (Sundays) I sort all my pills into the caddy/ organizer for the week. However, when I get busy or I am out and about I tend to forget at times to check the time and forget to take my mestinon. Sometimes I even get as far as the next dose (a full 8 hours away, since I take it every 4 hours) before I realize I missed it. That’s when things start making since on why I was slurring or feeling weak or having trouble swallowing during a meal. If I have just had my plasmapheresis I may not notice at all if it happened within a week’s time of the treatment though I tend to be asymptomatic during this time since the treatments are so beneficial to me.
One big thing I noticed is that I try to take my mestinon as soon as I remember; however, the bottles says if it close to your next dose just take that dose. Well I will tell you this, in the hospital they gave me doses within 1 hour of each other. This made my symptoms go away very quickly and I there were no side effects or ‘overdose’ issues. I am not telling you to do this as I was in the hospital under doctor’s care. I am telling you to be careful, watch your dosage, try to take it the same time each day, and count your medication. Double check it often to ensure you took it to prevent issues. However, if you know that you, and/or your doctors have cleared you to do what my doctors have allowed me to do in extreme situations like that night for me in the hospital, then by all means do so. I would talk to you doctor first. If you find that you are forgetting to take your medication often I would also talk to your doctor, there may be another option.
Sometimes on my busiest days, or days that my schedule changes due a medical procedure, new medication, or job schedule changes, I set alarms on my cell phone/ calendar to remind me to take my pills throughout the day. Do what you must to ensure the healthiest you. We hope a cure is in the works soon to stop this madness but until then preserve your body to see that day!
So there is not a lot of information on pregnancy and Myasthenia and many doctors almost try to talk you out of it. I have had had one doctor that was so rude she even went as far as to say, “why would you want to have kids?” Needless to say I reported her. It is a very sore spot for me as I was diagnosed wit Mg 2 weeks before my wedding and have always wanted children. So when I was told that it may not be possible and then that I may have to wait 2 years or that it could kill me and so on, I was very confused and upset. I am constantly asked when I say that my symptoms are exacerbated around my menstrual cycle they ask if I want MORE kids (insinuating a procedure to end them and help reduce my issues). I’m always like MORE kids…I don’t even have one yet lets be a bit more sensitive please and at least ask if I have any first. Doctors are so desensitized nowadays.
After doing a lot of research and speaking with many doctors I found that people with MG can and do have babies. There are several concerns to deal with though.
- What medication you are on: cell cept for instance causes severe birth defects and you even have to sign a waiver stating you will use several types of birth control while on it and not try to get pregnant while on it. Other medications come with similar warnings.
- Plasmapheresis: You have to be able to go 1 trimester without this treatment as it can act like an ‘abortion’ in the first trimester . You want to go as long as possible without this treatment but if you need it in the 2nd and 3rd trimester it is possible.
- If you are just diagnosed with MG you want to wait to try to conceive for at least 2 years b/c of respiratory failure
- You are not likely going to get to have a natural birth if you wanted one because it is too stressful on the body and the repetitive fatiguing issue of the muscles pushing so we must have a c-section.
- Certain medications will require you to taper down on them or come off them completely during pregnancy; however, this is up to your doctor.
- Another this is that the baby could have MG for a short period while in the womb and have little movement which is likely to wear of they say shortly after birth. Moreover, some are also born with MG and have it for about 2 months and this is also likely to wear of about 2 months after birth.
- We MGers are also likely to be more fatigued during pregnancy than normal pregnant people and our symptoms may be exacerbated; however, some people have said that their MG seems to “go away’ while pregnant, everyone is different so, I’m hoping to be the latter.
I still have plans to have a baby and we are getting closer each day. We have had some obstacles adjusting medications and with some crisis issues but we are finally getting to some stability and all my doctors are starting to finally focus on it. It feels like a breath of fresh air. Even if we find that we cannot physically have one…if it becomes to demanding on my body, we will adopt. We have too much love to give!