Exercise and MG

race finish

So there does not seem to be a lot of information regarding exercise and MG. Every plan I see seems to treat MG patients as if they are invalids. Perhaps this is because of the small percentage of those who get the disorder are generally males and they are 50 or older. This means they probably are close to retirement and may not be as active. But in this day in age that is not an accurate assumption.

I work in the wellness industry and though I may be seeing a skewed view there are many healthy and active 50 years old that running, swimming, biking, skiing, and doing adventurous things. They are staying in the work force longer due to the economy and they are able to adapt to many conditions and injuries that were unheard of decades ago due to technology and medical advancements.

So then my question is why is it when I look up MG and exercise do they pretend that is nearly impossible. If it well controlled I am able to bike, teach my fitness classes (which is a combination of cardio and weight lifting, kickboxing, or pilates), and even jog. I understand that those who are unstable are a fall risk, but then this when they should be in physical therapy and finding a treatment plan (a combination of medication and therapy) that will work so that they can become stronger. Telling someone that they should do minimal exercise is ridiculous. Moreover, I understand telling people telling them to do what they think their body can handle is acceptable; however, when you are dealing with MG we are still learning what our bodies can handle and what the safe medium is. So with that note we are hoping that there are going to be professionals out there with more insight than WE have. We should not be the expert. We should be able to be the expert on how our bodies feel but not the expert on what to do with the body.

Granted I am the exception in terms of exercise because it is my profession; however, it is still out of my scope when it relates to MG and exercise, I still refer to the professionals here. I want a doctor who both specializes in MG and understands physical therapy but will not speak down to me as this my field. Is that too much to ask? I do not want to be a know it all, just a person who can stay fit, continue to get some gains, and help others who were/ are healthy and have MG find their way in this trying time. We as MGers are on a ton of medications that cause weight gain and the only way to help maintain or lose weight is to try and exercise and eat right. This also helps reduce your anxiety giving you an outlet. Exercise has been proven to reduce stress/.anxiety for up to 24 hours. I NEED this in my life. How about you?

Another Episode of the Good, Bad, and the Hilarious of MG

So on this episode of the good, bad, and the hilarious of Myasthenia Gravis I want to tell you about the insecurities of how we/ I look versus how I feel. There are times you feel amazing but you sound like a drunk, LOL. I mean I have had the mental mind set of someone who has won a million bucks, woke up happy, strength is amazing, and every symptom is on point but then I sound like my tongue is swollen three times it’s normal size and I can barely swallow. Then I get the swallowing under control but the slurring still stays for a few hours and I sound amazing at work. When you work in customer service people tend to look at you like a little funny. Many people tell me they do not notice it including doctors when I apologize for it. Though I know I am overly sensitive to how I sound I also know that I have extreme annunciation and diction and find it hilarious that people who interact with me more often do not notice until my slurring is so bad that it sounds like I am truly drunk.

This is when we all make light of the situation. It honestly doesn’t make me feel bad because they do not make me feel bad for my disorder. They do not force me to interact with customers unless I choose to, or teach fitness classes unless I desire to; however, I do not let these things stop me because my gestures and demonstrations are still clear enough for people to understand me.

Sometimes, I do feel insecure though. I feel as if people are staring at me when my eyelid droops or if I am slurring or unable to control my smile or mouth when smiling or eating. It can be hard. I want to go home and hide and eat instead of in a restaurant. It is rough. Those are the days I feel a bit sensitive. I even feel a bit insecure when I start to cough or choke a bit because though my husband knows how to handle this (as do I) people stare and even though he says I am alright or I say it people continue to stare or look and I want to disappear which can ruin a night out when you have been cooped up for several days.

The worst is when I wear a medical bracelet that has my medical information on it (and though it is custom-made and looks a bit different) it still has the medical emblem on it with medical info on it. I have in emergencies for the emergency staff and teams shook it at them when I could not breathe for the answers they have friggin asked me and they ahve kept askin me questions that I either could not answered or would rather rest and not answered at the moment to recover a second. Not understanding that MG requires recovery due to fatigue,  LOL. Many nurses, EMT, and the like have no idea what MG is. But a medical bracelet with it boldly written on there with my name, allergies, and so on give them no excuse to spell it wrong and to get the basics wrong yet it happens every time, it’s pretty awful when you arrive to the hospital that you always go to with the most random information about yourself and the nurses that know you (once you get past admission) tell you what was entered and laugh at what was entered into the computer about you and change it for you so that it is not kept in your permanent record. I mean have been recorded as coming in as having myacynthia gravus once, choking on a pill once (but um I wasn’t it was only the thick mucus that builds from my MG sometimes when I was in crisis but they couldn’t understand that apparently), I have been told I have lupus (nope don’t have that either I have the lupus anti-coagulant a quick clotting issue but not lupus), and the funniest is that I was have chemotherapy/ cancer treatment because I was rushed from cancer day infusion center within the hospital where I receive my plasmapheresis. That was a hilarious assumption that they did not even ask me about. It was so funny. All I can say is sometimes working with health care all you can do is laugh and keep moving! It always makes me feel better.

192/365 -Vaccine for myasthenia?

I want to share something from one of my fellow blogging MGers. There may a cure in the works, though it just that “in the works” and could be finally be the end of such a strange, rare, misunderstood, and hardly understood disorder. We can only Hope! In addition trials were supposed to begin last month in Europe according to curavac.com They also do research for other neurological/ autoimmune disorders and diseases such as multiple sclerosis and lupus. They sound pretty close on this even though it says 2018… That is pretty close considering how long it takes medicine to go through trials, FDA approvals and so forth and it has already cleared several hurdles. I will be talking with my doctors and experts on this matter myself!

192/365 -Vaccine for myasthenia?

Beliefs–Finding some higher POWER no matter what you decide that is

spirituality

So some people are born with chronic disorders and some people get them later in life. Some people have a strong faith before getting them and some people have to find something to hold on to to get them through it. Some people get lost and never find their way and fall prey to hermit lifestyles, depression, and even suicide. However, on their journey there are a multitude of other disorders and issues that people find in between. It’s not to say that people cannot still have them even if they have a wonderful higher power that they believe in, but they are usually able to feel like they have a better control/ handle on them. Having Myasthenia Gravis is a chronic disorder for which currently there is no cure. However, I luckily was in a good place spiritually before getting this news and continue to have a strong support system and find more ways to gain this support and vent since my diagnosis through blogging and online support groups. However, had this been 3-5 years before this I would have been in serious trouble.

Many times in my life I struggled with KNOWING I was Christian and believing in God and being too logical to understand how these things could be when I was depressed and was ‘failing’ in life. When things went bad I did not know what to do and felt that was the only time to turn my faith. LET ME STOP YOU HERE! I will not begin to bore you here and say I am a overly religious person who goes to church every week and reads the Bible faithfully and prays all day everyday. Because I do NOT. I am spiritual. I believe in God but I also believe that people need to believe in whatever makes them happy. They do not have to believe in my God; however, if you see that my life is going well and I’m happy and you want to try what I do, you are welcome to try what I do. I believe that you should do what makes you happy within reason and believe in what gives you the power to overcome your trials, believe in you first…but if that is not enough, believe in your children/ family, or your God(s). I thank my God for everything that he does for me especially the small things. I have learned to enjoy those the most because when I am sick, they are the things that I took for granted and appreciate the most when they are gone.

I assure you if you can find grace, happiness, and peace now in small things, when the big things start to happen you will be ale to handle them a bit better than you ever expected! I won’t promise you will not be stressed or that you will not cry, but you will find strength that you did not realize that you possessed before. Then you can save that feeling and memory and know that you got through that once and next time you can do that or a similar experience again if you need to.

Planning to go out (Weather and MG)…Do you need a handicap Placard?

getting ready handicap

So to go out for one night or several nights can be a big thing for me! I try to make it look easy for others but people have no idea what it takes to go out. For one night on the town I have to plan when I took my meds during that day which means I pray someone told me more than one day in advance we were going out. If not it means I may be taking an extra mestinon to get by so I do not have flare up of my symptoms while we are out. I also take longer to get ready and do not want to deplete that energy reserve I have at the beginning of the day. So I have to plan to find a quick and easy hairstyle, clothing option, and sometimes cute wedges or low heels (high heels are no longer my friends as they over exert my legs to the max). I can only wear high heels for like an hour now before I am so fatigued that I cramping for about 7-10 days.

Then if I decide to drink while we are out sometimes I feel as if my symptoms are exacerbated, LOL. When you drink and have MG you feel like you are slurring, double vision, a bit of weakness, dizziness, balance issues, and some weakness (which can all naturally happen  when drinking too much) but I only had like a few drinks well below my old maximum, LOL.

When I plan to go out or travel for more than one night or day it gets more complicated. I have to make sure I have plenty of medication for the trip, my suction machine in case somehow I get choked up (which is super rare but has happened), and plenty of clothing options for me as I find that weather and temperature affect me greatly. When I am extremely hot or cold I have severe flare ups of my condition starting with weakness and that weakness causes issues with walking and swallowing and sometimes breathing. So having the right type of clothing is critical for comfort. I carry water everywhere I go and I protect myself from the sun at all times. I still enjoy fishing, swimming, and running but I have to be much more cognizant of how my body responds to the weather now and cannot push so hard when I am outdoors. I swell really bad in the heat and this is not fun or healthy. This inflammation is a direct response to what I am doing to my body. You have to listen to your body. So I hydrate and cool off and remember I do these things for fun and luckily have friends and family who understand and help me modify my activities so that we can all enjoy them.

However, planning for me has not changed that much for me though since I am a very organized person. I have an excel spreadsheet that I keep saved and update for each trip based on what is needed. There is one for fall/winter and spring/ summer, LOL.

On a more serious note though…this did bring up a good question for me? Because I only really had weakness issues with my legs in extreme weather (over 95 degrees and under 20 degrees) was it worth talking to the doctor about it? The answer was yes. walking long distances in this weather was too much for me in some places and so I asked for a handicap placard for those occasions. Though I only use it if I feel I need it because I am too prideful to use it if I don’t need it I will use it if I feel it is necessary no matter who is around. You do not have to report it to your job and it does not state that you are unable to do your job within the scope of the abilities of your job. It does not cost much (in North Carolina only $5.00 per card). Your doctor has to sign off on it and you can get a temporary one or a permanent one for 5 years. Below is more information on it:

Click to access DMV_Brochure_Handicap_Placard_2010_05.pdf

Do not use MG as a reason to sit at home and be a hermit! Go out and have fun! If you need help write me, and ask questions for free, talk to someone professionally (though I do have a psych degree it’s a masters in psych. so feel free to look higher up the chain if you like), talk to your doctor, talk to your friends and family, but get moving! Remember it’s ok to cry and have a few days to be upset but then you have to get up and move on!

#TheHeartProject

the heart project#TheHeartProject.

Please check this out! I am a huge advocate for mental health and we all fall prey to mental health issues at some point. Always be mindful that someone can be going through this and give hope and inspiration to someone else. I hope you find this as inspirational as I did.

BTW That’s dark Blue and pink on me, LOL

MG and Energy

So you are never really told if you will ever be 100% again or not because every person is different. They tell you things will change and the doctors do not want to sell you a false sense of hope. I am here to tell you you can have as close to normal a life as you had before except yes you will have lots more meds and trips to the doctor as a pin cushion, LOL. You will have to learn about energy conservation!!

Energy Conservation is hard when or if you are like me and used to going 24/7. I am so used to burning the candle at both ends. I was diagnosed while working 2 jobs (a full-time job and a part-time job), going to school full-time for my second masters, and planning my wedding. I was also training for several races. Learning to scale things back is not easy for me because this is me all the time. I am good at time management but horrible at rest!!!

MG forces you to rest! When you try to do too much your symptoms will flare up and cause you to eventually end up in the hospital. It’s like you are allotted a certain amount of energy per day and you have to spend it wisely. I have to learn not to overdo it and that sometimes I have to say no to things even when I really want to do it. So because I am an awesome organizer and planner I have learned to plan that much more and have to clean on certain days, cook on other days (freeze it sometimes), and rely on my husband to do more than chores. He has learned to do more in this last 18 months than ever before especially in the kitchen. We do quite a bit of cooking together to make things quicker and easier for me and it gives us more time together.

I have also found tools and tricks that help get things done quicker and easier so that I do not exert and much energy and time on things like my dragon speech microphone when I work on my computer. I cannot always type long because my hands get weak so I talk. But then my my slurs but I trained my dragon speech system to understand my voice in that state and I can talk and types it for me. That was a lifesaver in school when I was in the hospital, LOL.

The only real way to ‘get more energy’ for us is to get a nap or sleep but that can disrupt med times, sleep patterns, and work patterns if you still work a normal schedule or a 40 hr week like I do. It helps though if you really need it. I do it often on vacation so that I can maximize my fun and games! That’s definitely an exception. Another way to get extra energy is to have fun as much as possible. I like to paint, crotchet, and play computer games as well as have social gatherings (but social gatherings can make you pretty tired so be warned, LOL).

How much energy is stored in your bucket?

MG and Nightshade Foods

So sometimes you hear about food that can trigger reactions that cause your MG to be worse or better and I have noticed that this can be true. Especially when you are at your weakest time or when you are trying to get stable with your MG. Having MG you will notice that the normal things like eating are not always as enjoyable because your chewing muscles fatigued way sooner than they use too. There is a good and bad to this. It definitely helps  with weight control, LOL. The down side is that when something is especially chewy you will eat less and then you will also be more at risk for choking while swallowing.

Moreover, there are foods that can cause more inflammatory processes within the body and cause you to feel more bloated swollen and even cause other horrible affects for us wiht this semi autoimmune disorder. By staying away from or reducing the amount of nightshade foods I eat this has desperately helped me despite how much I LOVE POTATOES and all things associated with potatoes. I’m like the Bubba Gump of potatoes (the guy from Forrest Gump who loved shrimp and could eat them/ cook them in every way). I almost cried when I stumbled across nightshade foods from my brother (the connection) and the doctor confirmed it. I wanted to slap him because he stole my joy, LOL.

This list of nightshade foods are:

  • Tomatoes.
  • Eggplant.
  • Potatoes (not sweet potatoes)
  • Goji Berries.
  • Tobacco.
  • Peppers (bell peppers, chili peppers, paprika, tamales, tomatillos, pimentos, cayenne, etc)

The ones that affect me most are tomatoes and spicy peppers. I begin to slur almost immediately after eating these. Sometimes I cheat and have them just before my plasmapharesis so they are plexed out of my system and I can still enjoy them, but is it really worth it, probably not, LOL. I just want to feel normal sometimes and remember what spaghetti, bbq sauce, and so many other things are like. Believe me tomatoes are in a ton of things. Try going to a restaurant and ordering things without it and realizing how often things are made with it.

The plus side is that I also had less inflammation, less need for treatment or medicinal adjustment, fewer flare ups of double vision or heartburn, and embarrassing slurred speech moments. It was hard at first but it really did help. I learned how to make new recipes without these things and get really creative. I pretend I’m allergic so others get it in their head I’m not allowed to have it. The only thing I still miss after a year of no nightshade is the POTATOES!!! I have actually shed tears over them, LOL. I have had 1 french fry every month for the last 3 months to say I did it lately because I wanted it, lol. 1 of those 3 months was not worth it. But other than that It was SOOOOOO GOOD! I owned the slurring from over working my tongue and the super salt and thickness it took to choke it down. I don’t mean a box of fries I mean one single fry, LMBO. It was funny and my husband seriously laughed at me and my *fatkid dance and Augustus Gloop savoring* of the moment.

We eat pretty healthy anyway but now our food just got that much healthier this last year and have forced us to cook more often! It gives us more opportunities to cook together!

Bon A Petite

 

MG: The Good, the Bad and the Hilarious

Having MG can have some pretty funny and sometimes embarrassing moments! So they tell you that most women do not get it unless you are in your 3rd generation (30 years old). I was 28. And they say it is rare and that 20 in 100,000 people get it. They also say that more men than women get it and men 50 or older get it. Sadly I have actually yet to meet (face to face) another female in the area with it and then everyone I have come close to meeting is way older than me and they barely work or do anything active like me. SO in saying that you will understand how this next segment happens, LOL.

Because MG is neurological and autoimmune and I was really healthy before and basically during this I look very normal. So when I go places and need to sit down people look at me like I am crazy if I take an elevator every blue moon, or pull out my handicap sticker in the winter when I can barely walk because I am in PAIN. This year before my handicap sticker I took to the streets in a full blown snowsuit everywhere I went anytime it was under 25 degrees, LOL. From someone who keeps her house on 65-68 degrees year round I just could not take it physically.

Another funny moment was when a person thought I was having a stroke because my MG symptoms were acting up and I had slurred speech, a drooping eyelid, weakness, and my migraine was causing some vertigo. He was trying to call 911. I was like I am fine I just need my medication and he was trying to use the ‘good Samaritan law’ and tell me I was not in my right mind and that I needed help and I was too confused to know what I needed. I was like sir I have custom-made medical alert bracelet on that states my disorder google it if you like. I appreciate your concern and I don’t want to hinder you from helping others in the future, but I promise if you call an ambulance you will look like a prank caller because I will not stay here nor will I allow you to offer care, LMBO. I told him he was welcome to sit with me until my medication kicked in though and educate himself on my condition.

Talking with your nurses and doctors like they are the dream team from or your pusher man is hilarious. So once you are dubbed with a chronic or incurable disorder you gain a team of doctors and professionals that you have at your every beck and call. You even have cell phones and emails for some. You never realize until someone gives you a sideways glance how suspect you sound until your husband dies laughing or friend points out how you sound like you just made a deal to pick up some drugs. I am so use to speaking in their short hand code, making quick last minute meetings for specialty procedures, and getting special referrals and what not that I forget how that sounds on my end, especially when you are asking about the possibility of getting new drugs made and compounded for you at a special compounding pharmacy, LMBO.

Finally, the doctors do not tell you everything. You find out a lot of things on your own and have to call and find out if things are normal. It bothers me sometimes because I sit and worry and sometimes freak out way longer than I should have because who wants to pay the specialist fee to ask one question. Thank God for new doctor pages that have email access where you can email non-emergency questions and refill prescriptions. Moreover, sometimes you feel stupid asking a question but you feel like you have to ask it so that you can say I asked and now I know for sure. You can never be too sure or safe with these things. I have learned that the hard way with disorder, everything is not always common knowledge or common sense, even the doctors have to reference experts!