I SURVIVED!

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I am always pushing myself to new limits, this is just my nature. I cannot help myself. It’s just something in me that says I cannot rest until I have tried to go a little bit further in something, though what that something is for that hour,day, week, or year is always changing. So my current goal is revving my fitness level back up since it plummeted due to many health setbacks last year. I had to put it on hold to get my myasthenia gravis into a stable condition, then a crazy series of kidney stones. Now that everything seems to be stable and good with all my tests for over a year now I am slowly reintroducing exercise.

The doctors never said that I had to stop; however, when you start exercising and it lands you in the hospital or in treatment 1-3 days later, you know it is probably not time yet. So I started by ramping the cardio up slowly in January by adding a second job. I know that sounds stupid but it involved a lot of walking, bending, and lifting. I figured it would definitely boost my levels a bit and boy did it. The job was not that intense per se but for someone who had become nearly sedentary in the last 7 month prior my body immediately reacted. The first few weeks I sweat like two fat women wrestling over a ham sandwich on a Sunday in the 100 degree sun on a pig farm. I mean it was ridiculous, and this was in the winter. I was training with this poor guy who was probably looking at me like is she sick? Is she going to pass out? (I did find out 2 weeks later that I was sick though, LOL–I had a respiratory infection, but that was beside the point) But I refused to slow down or slow him down so I kept his pace, though I slowed him down anyway. He assured me this was normal as I was learning. I could tell he was being super nice.

I downloaded an app on my smartphone so that I could track my walking activity and see how active I was. I wanted to know how active I had become but to also motivate me to walk more when I saw that I was close to a particular step count or goal. Yes I still sweat some nights when I work my second job but nowhere NEAR as much as those first few weeks. My body has adjusted. So now I have to crank up the intensity and the distance. I have been able to go longer without incidence and been just fine as well. So I bought a spin bike and it came Monday. I use to spin all the time before this hiatus. SO now that I have one at home I am stoked. I started last night thinking with my MG it is probably best that I do this at night for now so that if anything happens at least it is the end of the day and I can go to sleep and recover for the next day. I feel like right now with everything that I go through if I did it at the beginning of the day, and a surprise thing popped onto my schedule I would not have the energy to do it because I used it up exercising. I do not want to spread myself that thin and cause harm. It was ad enough that after I finished exercising I felt extreme nausea because I felt like I was STARVING and I only spun for 30 minutes. I drank water during my workout and I did not push too hard and felt fine during but 10 minutes later I felt like I could puke because I was so hungry. As soon as I put something in my belly I felt better. I obviously did not plan my meals well yesterday for exercise and it told on me.

But I did make myself keep my exercise lowkey and slow and I survived the SLOW pace and was happy with that. I spun for 30 minutes and though I really wanted to go higher than 11mph avg I did get in 6 miles. I am so used to more but again I need to remember SLOW. I do not need a hospital stent right now. I have a trip to gear up for and I want no setbacks. Plus right now I am trying fr a possible 16 weeks no treatment I’m just over 10.5 now.  I got this with help I hope. For now, I have survived and I thank God for that!

–About the picture– my sense of humor can be a bit morbid at times. This is literally what I said to myself after I laid on the floor after exercising and before I heaved myself up to attempt to stretch and foam roll.

Vanity and Form: The Reason For Mirrors

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So I am Senior Health Fitness Specialist and I work in a corporate fitness center. I teach fitness classes, run wellness programs, do personal training, do exercise prescription and so on. I am not just a personal trainer or fitness instructor. Yes…I take offense to that as I went to get a 4 year degree and a expensive certification to say otherwise. There is nothing wrong with being an instructor or personal trainer but I went above and beyond for a higher position and title. So yea I am VAIN about this, LOL.

Working in the health field I have seen many things both while interning at a satellite hospital site and while working in various aspects of health over the years. But nothing prepares you for the things you will see in a fitness center. The hilarity that happens pales in comparison. People believe that you are both blind, stupid, and the world centers around them. Moreover, when things happen to them you have to try and keep a straight face while watching them do these stupid things because I swear I cannot make them up people when dumb ditty over there tries to push start the treadmill. Um it has a BIG green button that says START…Why not try that? Or pulling a Cleveland Brown on the treadmill like my younger brother did many years ago while I was at my first job ever and tried racing me. I was minding my business running and him not knowing how a treadmill really ‘worked’ decided to just input the level at which I was running by putting the actual number and then increase the speed. A smart person would have known it will START at 8 miles an hour. it will take time to get to that level (a few about 15 seconds maybe). So this genius thought he was doing something and welp he was still increasing the speed thinking it was not going fast enough because it was not as fast as I was and when it hit my speed and he was already increasing it he FLEW off the back but since the room was small it was right against a wall and he looped for a bit before i jumped off my treadmill to give him space to get out and off his treadmill. I will not lie I laughed so hard i seriously was crying and people thought I was hurt (from the noises they heard– the crash).

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Every time I see this above episode I think back to this and the image is so fresh I just start laughing all over again. The starwberry on his shoulders and back he called ‘carpet burns’ were there for some time. I will never forget it and when people fall in the gym on the treadmill and have similar moments I swear I wonder how in God’s name they FIGHT it…I just fall and let it happen, why do you fight and keep trying to get back up while the belt is still moving. Let it go! Well unless it’s at a wall and then hold on for dear life!

Or the person who sits backwards on the chest fly and tries to do back fly and the arms only come part of the way around but they stick with it. It is my job to go over to these people and help them before they hurt themselves not laugh at them.

Or the people who instead of using the big mirrors in the weight lifting section for watching your form and correcting it, they are flexing and watching themselves. Yes, I see you watching yourself and just enjoying YOU. That’s great self-confidence but um get the heck out the mirror and let someone who needs it use it. I mean really it’s great that you have immeasurable hotness and you are psyching yourself up what not but the music has you pumped and you are awesome but MOVE! The world does not revolve around you though the mirror seems like it does.

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Then there is the gross creeper that is watching everyone in the mirror/ fitness center and makes your skin crawl. That’s the person that almost makes you want to be on a machine where you back is to the wall so that you can see everyone around you at all times like someone may be pick pocketing your soul. Instead they are doing something far creepier they are almost walking around smelling your scent and stealing glances at you doing squats and staring at your most intimate places and you feel the eyes on you but you have no idea from where.

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And they are always happy when it’s squat day

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But the fitness center isn’t all that bad when you have confidence and people are not that gross and creepy. Usually they are not but you always get a few that young idiots that have to be put in their place. And kudos to fitness centers that have a ‘women’s’ section that is separate from the rest of the fitness center with additional weights and cardio for a circuit. Though men do struggle with body image, women and young women especially struggle with this more often and need this additional benefit at least until they are comfortable to be on the main floor. with their weight training. Meat Head intimidation and crowding is no fun (no matter what level fitness you are in, lol).

 

RANT COMING IN 3…2…1… Please Be Thoughtful!

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WHY Oh WHY do people do this!?! Why do they bring their hacking, sniffling, watery eyed, sneezing, mucous infested, selves into the fitness/ WELLNESS center and get OTHERS sick! Why is this your first thought is that, “I MUST GO TO THE FITNESS/ WELLNESS CENTER AND SWEAT THIS THING OUT AND ASK THEM WHAT ELSE I MUST DO WITH NO REGARD FOR ANYONE ELSE’S HEALTH”! If you are reading this and have done this…do you think to yourself maybe you should wear a mask to prevent others from being sick? Everyone who works in said environment or works out in said environment is able to defend themselves from your nastiness! You think you caught every inch of sneeze in your elbow? Even that cough that crept up on you and got out before you could balance yourself on the elliptical before you almost fell. Then you touched the elliptical. So you know…You cannot sweat out a cold/ flu sot stop trying!

We can’t all dodge your germs, even if…IF you actually cleaned your equipment, which let’s face it most of you barely clean all the areas you touch or sneeze, cough, or sweat on! You always think this is the job of the staff, yet we cannot possibly clean it between every person that jumps on it so the next person jumps on and they have touched the areas and are infected before they even knew what hit them!

Everyone who looks healthy is not as healthy as you think contrary to what you may think! There are some like me who look amazing, Yes I said it wonderfully freaking amazing most of the year! So you would never know I have an autoimmune disorder/ neuromuscular disorder unless I told you. I have no limp, no cane, no sign that says I am sick on my forehead. I have nothing most of the year that says steer clear. However, now during the worst part of cold and flu season (Jan-Mar) I must wear a mask because people are too afraid to stay home and miss work! They fear missing a workout day will cost them the ability to sweat out the cold. However, it only weakens you more when you are sick and takes you longer to recover.

Moreover, you spread you germs to people like. You have no intention of paying my hospital bill and since I can’t take a flu shot since it puts me in the ICU (which you wouldn’t know or seem to care about) you keep doing it! People never consider others. I bet that even if we bought masks like hospitals and placed a sign that said if you have the following symptoms (that of cold/flu — listing them as hospitals do) people still wouldn’t take them!

I’m learning that people are generally inconsiderate and yet when I wear my mask, like last year the geniuses all thought I was the one that was sick for THREE months. Seriously…3 months people! No I don’t want your cooties! I know not everyone can stay at home when sick, but if you feel that serious about your workout, do it at home! My doctor actually had to a note making me wear it at work because he did not want me going to the hospital anymore as it was hindering the progress I was trying to make for my MG with some of the medications I was taking. Some medications take 2 years to work and since I kept landing in the hospital every few months we were not sure if they were working because I would get sick each time I thought I was getting stronger or better. Everyone was getting frustrated!

Or if sweating it out is your goal get in hot bath, take a nap cap and get under some blankets, go for a run outside with trash bags on for all I care (it gets cold in these months! I don’t mean that last part, but you get the point….One should think twice before going into a fitness/WELLNESS establishment where others are trying to get fit and stay WELL and get them all sick because you are being selfish! It’s not fair. Moreover, in my facility all members get 1 free PT per MONTH! Let me create you a workout for the week you will be out…PLEASE. Just email me. I will give you one that’s fun and you can do with the equipment or body weight at home. JUST DON’T COME IN HERE!

I am not saying this to be selfish either (though yes I would prefer to to be sick EVER)… I have been privy to people’s private files here and I am not the only person here who could benefit not getting your germs. Though everyone would prefer it, some of us are more susceptible than others and therefore are in more danger than others from your actions. Please think twice and if you think twice and still come, don’t be surprised when I come nowhere near you, put on a mask, or state nicely I would rather not be to close to you (all while thinking jackass).

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Migraine Preventor and Memory Loss

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When you start losing everything you have to start looking at things as a sign to slow down and think! Take a mental inventory of everything each time I go somewhere. Do I have the basics? Do I need something more for this trip? I ran into this issue as I had to start upping the medication for my migraines as without reading the side effects memory loss began to be an issue. I was worried at first that it was a side effect of MG. However, as I was already in the habit of creating to-do list because I love to see things get checked off them it only made it more fun for me each day to continue to make more.

The down side is making sure that surprise events do not screw up my routines. Surprise events include someone calling while I do my morning mental inventory to be sure I have all my things packed. Some people say do it the night before…the only problem with that is more people are active then, I get more phone calls then, my husband is home and I am more distracted. In the morning, it’s quiet and my husband is either sleep or gone for work already so I get that time to meditate and get things done.

Moreover, at this time period versus when I was first regulating to the increase in the dosage I know longer have the fogginess that was accompanied by the migraine medication (topiramate). That was the worst as I felt as if I was not fully awake and could not think clearly. Now I just grab a bit of chocolate or make sure my diet is very well-rounded and some good exercise and it works pretty good. On the worst days I may have to snag some heavier caffeine like a soda (Dr. Pepper). But I feel as if I have mastered the preventative migraine meds. I pray I will not have to go off them when I decided to have a baby, lol.

It is the only thing that has helped after many trials over the last 4 years and being on different on the spots meds over the last 8+ years. I think we have a winner. Now if I could just help my husband remember things though he is not on any medications, LOL

I NEED A FIX

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SO I skipped my workout yesterday because I had the early shift at work and I had to open the facility. That means getting up at 4am. I like working out before my shift because it means I am usually less symptomatic from my MG and able to gauge how I will feel the rest of my day. However, on my opener day this cannot happen. I usually have to workout afterwards. But Yesterday being that this is the first week of working out in 7.5 months I am easing if you will back into. I say easing because some people who are not use to working out would not call my 12 mile bike rides on Tuesday and Wednesday easing back into working out.

However, when Midday Thursday came some symptoms decided they wanted to go haywire. I got double vision for no reason at all. I recently stated in a post that I was nervous that would not be able to tell the difference between MG fatigue and exercise fatigue and this was that day. I was easily able on Tuesday and Wednesday, but not yesterday. It alarmed me and made me feel like if I exercised I may have pushed the limit and caused more issues than I was willing to deal with such as being out of commission exercise wise for several days. Since I just got back into this that is the last thing I wanted. I also had several things I had to do yesterday afternoon and so I decided I would just go and run my errands anyway. Though By far I would not call my errand exercise (Even though I walked my butt off) I definitely felt it when I got home because I was up until nearly 11pm and had to get up at 5am.

I was so on edge yesterday afternoon from not having my workout and then being late to my friend’s special event that my anxiety went through the roof. My husband could not understand it. He has known me for now 5 years and still does not understand that my anxiety is a disorder. That is does not go away, that I control it as best I can but that it gets out of control sometimes and I try my best to control it all without medication because I hated being on the medication 15 years ago. It was for a short stent (less than 6 months) but they way I felt was horrible. So I figured I could combat it with exercise, meditation, music, and other soothing dissociations. I do pretty good until one triggers happen such as being late, rushing, money issues, car issues, being lost, or my anginophobia strikes. I feel bad for most anyone in my way then. I cannot help it. I do not really know the root of these issues fully I somewhat know where they stem from but my logical self cannot stop me from feeling the way I do and acting the way I feel.

What makes it worse is when those who do not understand say things like just calm down. Or it’s not that serious! You are overreacting. In hindsight I may know these things but I am usually embarrassed because someone witnessed my meltdown. My poor husband is getting better about dealing with it but he is still learning what not to say, and when not to say it, LOL. That’s hard enough with women but with a high anxiety woman BOY OH BOY! Thank goodness opposites attract and he is more laid back to fit my anxious life!

Today I do not care if my whole body tries to shut down I will workout! I will sit on a recumbent bike if I must and read a book and go at a snail’s pace and do it! I don’t care if I can only do it for 30 minutes. It’s better than nothing to help keep my anxiety down. I cannot function otherwise. My books, my exercise, my games, my dissociations are my FIX!

That Twinge of Doubt ALMOST Got Me

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So I have moments of weakness with MG. Literal muscular weakness in the physical sense. I pray that they get fewer and farther between treatments and medication. They do and I get happy until I am stressed in some way. For example I have a kidney stone, or mentally stressing over something like when I was in school and had a huge master’s project just to graduate, or even too many small things piling up at one time.

When this happens this exacerbates my condition. I then start having slurred speech and issues swallowing first. This includes smiling, chewing and all processes using the mouth or tongue. Sometimes it bothers my eyes and I have a bit of blurred vision or double vision at times (gets pretty durn scary during rush hour traffic). It then spreads to my upper body and I struggled to do push-ups and abdominal exercises.

2 days ago, after restarting my workout routine (after a 7.5 month hiatus due to tracheal stenosis and just having it surgically fixed last week) I had to show a member at my organization how to do an exercise routine. I have been doing demonstrations even while dealing with issue the whole time but this had cardio and weights and though I was handling it well after doing my own hour long workout that morning I was worried about one exercise in particular…THE PUSH-UP ROW.

Anytime I have to do push-ups I freak out because it my gauge or barometer exercise. I know…you think where are you priorities breathing and eating should come first lady…but in my field you have to be able to practice what you preach. If I cannot do a push-up you look like a failure. I have been known to completely collapse mid push-up because my muscles will not do one due to the MG. It sucks and it is VERY embarrassing. It is a blow to my pride. I want to cry each time. My doctor allows me that one pride boosting measure if you will and helps me get my treatments and medications based around if I can do a push-up. It is very important to me. I am very active and very fit and to not be able to do one bothers me.

Getting back to this issue to days ago I was so worried when I gave this member the workout that I almost did not give her the exercise because I knew I would have to show her and I was unsure of how strong I was. I powered through it and was able to do it! I was excited. I did not do more than a few reps and with a moderate weight considering that I had not done it a LONG time but I was satisfied. I almost let doubt get me.

Getting back in shape with MG

The trick to exercising with MG is to never get out of shape, lol. However, we all know that with this disorder we will have setbacks and moments that are just not going to allow us to workout or keep our regimen in place year round. These last few months with several surgeries, countless doctor appointments, and questionable medical issues that just received answers and solutions; I am just now getting back on track.

It sucks because I cannot always tell what is MG fatigue and what is exercise fatigue right now when it use to be so clear. Those limits are not there! I have always been one to press the limits anyway but I would rather play this one safe to actually reach my goal this year. I lost 30 lbs last year and only managed to gain 7 back in the last 7 months of not exercising. I figure that’s pretty good since I only saw the scale go up in the last 3 months. I am really good at maintaining my weight nutrition wise.

However, now it’s time to get back on it I still have another 30lbs to go. I want this for me. No one is pushing me. The doctors are not, my husband is not, this is just my goal. When I say pushing I mean forcing me. I prefer to be able to do it on my own without anyone nagging me. My husband never nagged me, he has always loved me for the size I am no matter what size I am but that may not always be helpful at times. But he is supportive of my goals, so that is helpful. The doctors are happy as long as I am healthy and have no further health issues. I figure this is how I prevent them. My knees and ankles do not like me again and that tells me I am not where I want to be or need to be. At one point the doctors use to nag me and I am glad I am in a range where they do not. So before they do I will get this train rolling!

I am health fitness specialist with a degree, license, and several certifications in the field and I know better than to allow my self to feel this way or look this way. I also refuse to allow myself try and control the things I cannot and I have to be ok with that as well which is the psychology degree I earned, lol. I mentally make a note of these uncontrollably things and workout to ensure I ebb these anxieties as well as make sure I pray over them in case there is a solution that I can control to fix them. Until then I will get back on this bike and go to work because I need to get this weight off.

FAQs of MG

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.

FAQs:

  • 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:

http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm

http://www.myasthenia.org/

http://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/basics/definition/con-20027124

Exercise and MG

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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?