Where has the time gone!

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I cannot believe it has been a week since I have blogged! This is so unlike me. I mean it is like me going a day without talking! It just so rarely happens you would think that I am sick. The reality is that I have been so busy that I have hardly had time to wrap my head around all the strange feelings and activities that I have been undergoing.

Let’s first talk about these activities. I have been visiting friends and family like it is going out of style in an effort to seemingly catch up on all the years I have missed from being away in college or busy with my masters for so many years. I also am trying to catch up from being ill and unable to visit and hang with people as my reason was I was in the hospital or to weak to actually be away from home or treatment more than about 1-2 hours if that.

Now that I can I have been booked or booking so much time with family and friends that I have turned ‘fun’ into another job form myself and have to slow down a bit. I feel like my bed and I need a real come to Jesus moment where we talk about some secret things that no one else understands. I mean it seems like it has been awhile since I have held the sandman hostage; which is a requirement when you have work shift disorder for over 15 years.

I have been kayaking, hanging in arcades (Dave and Busters), out drinking, playing pool, at food truck rodeos, and so much more. It has been fun but I have to make sure I don’t overdo things by spreading myself too thin in the name of fun.

Now for the crazy feelings, well I assume they are a mix of stress and just a bevy of emotion that keeps flooding me thinking about my future and reflecting on my past with MG. I mean to think I am almost at 15 weeks with no treatment is amazing and the longest I have gone ever. Then to think that when I first started with MG that I could barely hold or balance things in one hand and now I can hold them with a finger or two and I am almost back to my old strength even if not my old endurance yet as I have to build that back up. I also think about the fact that no matter where my husband and I are now in our relationship he was very supportive of me through some rough times that most people did not see or even know about. He may joke with me about it now but he was there and helped me get through it when I could only had him and my mom to share those really personal things with. I was even too embarrassed to tell my best friends back then. I am so happy for the stability and the success that has occurred in my life. I thank God daily and several times a day for all that is occurring in my life. People need to know that I may not be the most religious person but I am spiritual, grateful, and I love God even though I do not blog about Him all the time. I’m not here to sell you my God! He is yours if you want him and I feel if you like what I have and what I do you will seek him the same as I did because you see him working in my life as I saw him working in the lives of those who were happy around me!

Sometimes I even feel sad because I feel as though I am still not where I want to be, but I realize that I will get there in due time. I am progressing and that is all that matters. I know that I have put on weight again but I am healthy and stable and now since I can workout again I can get that weight back off. So that makes me happy and working out lately has been a great joy. My WOD (workout of the day) is going to be awesome today! I can’t hardly wait to get home and conquer it, who knows I may even let my husband do the workout with me if he doesn’t get in the way. I’m kind of selfish with my workouts, LMBO. I like to workout on my own then I will teach people whatever, they want on their own time (since he doesn’t already know the moves).

 

 

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).

 

Broken Underwear and books

 

Did I get your attention, I thought so! My Monday started off as one of those days. I would not say a bad day because I do not believe just because it is a Monday that it is a bad day. However, I will say that I was in a rather unfavorable mood for a few reasons. The first was because for the first time EVER I had to return library books to the library that I did not get to read because I was unable to renew them online since people had already requested them and I am a VERY courteous person. I believe in making sure my books are back on time so that the next person can read them. I know how I feel when I am excited about a book and ready to read it, especially when they are like these books are part of a series.

It all happened because I they came earlier than I expected when I put a hold on them and instead of putting them on my ‘to read’ list in my library account I placed them on hold to be next in line to get them sent to my nearest library to be picked up when they were returned to read. The funny part was about 8 books came back at once. I burned through about 4 of them quickly but then I had one that was not as enjoyable as the rest and took me longer than I anticipated. Then I also got busier than anticipated.

I renewed all the books that did not have wait lists and tried to prioritize like usual and still had those 2 books left and not enough time. So as soon as I dropped them off today I placed them back on hold along with a third book and I will not add any other books in case they all come up at once again. I can read about 3 books in a week with no problem but not 4. So I am good to go. I also have one that I checked out today on ebook that I am reading now in the mean time to keep me satiated.

Another reason this day went sideways is that I am still sick so you know how that goes. Though I am getting better I am still feeling sluggish and not all there so I am not on top of my game and I feel like it takes me twice as long to get myself together and make lists and complete them.

Then my house is a mess and I don’t like that. I have to make sure that I get that under control I cannot stand to see this much longer. So I decided to take a 1/.2 day tomorrow to get that in order a bit and run a few errands and get things back in order. I also took Friday off so that I can rest more and just get myself back together. I have to get things back right!

And the cope de grace (finishing blow) was going to the bathroom and not knowing my own strength. I was not rushing just not really paying attention and while using one hand to lock the door and the other to pull my pants and panties down simultaneously (b/c I had on yoga pants) I broke the band on the side of my panties. I mean all the way off. I look at this in sheer amazement. How in the world does one break their underwear, these were not cheap by any means as I stopped investing in cheap panties back in high school/ undergrad because I like quality! I kept thinking about it and shaking my head, this was not ‘torn’ this was BROKEN it was ridiculous and ridiculously funny and trying to stifle my laughter in the bathroom made it even worse.

All I could do at this point was laugh! All I had was one leg in and the seat to my panties! Welp, Commando it was! Many people go commando and not just when they workout. I found that to be an interesting survey by the way. However, that was not my plan today and I rather like wearing underwear unless I am doing spin cus I like the added protection that if my pants split (which has happened on numerous occasions) or my pants slip down (which has not really happened thankfully) that there are underwear to prevent a complete catastrophe. Otherwise I would be commando every time I taught class, lol.

I am at a point right now that I wish I could go back to sleep and start this day all over again and with my usual spare pair of clothes in my pack. Why did I take those out last week and forget to put them back after I washed them? Really wishing I had those spares right now.

The funny part is that I even took the time to sew up the pants the I have on this morning because I had ripped them on the inner thigh and STILL did not think to check my back pack for my spare clothes!!! WHAT A DAY, and it wasn’t over yet, I could pray for normal but who am I kidding normal does not happen to me!

 

I Don’t Advertise

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So I guess it’s weird to people that I do not advertise that I am a Health Fitness Specialist! I have a degree in Exercise and Sports Science and I am ACSM certified as well as being an EXOS Performance Specialist. I have been a personal trainer for over 5 years and fitness instructor for 7 years.

When people talk casually around me I offer my insights and then tell them my credentials. I do not advertise it for many reasons. The main one because I struggle with body image. As a person with all these credentials people expect you to look a certain way regardless of how capable you are of doing your job. If I look overweight to them they judge you as incapable of doing your job properly. Moreover, if you do happen to become overweight at some point for any reason they definitely judge you. I looked overweight for years when I was not but did not care because I was able to do the work and silence them.

However, for a period after being diagnosed with a chronic illness (Myasthenia Gravis) I could not teach fitness classes and I gained weight because it causes neuromuscular weakness and fatigue I could not balance it at first for a long time. I was unstable. Now that I am stable and getting back on I have a poor body image.

But I have learned that this is a part of my life and that I cannot dwell on it. My doctors will figure out why I have suddenly had a recent unexplained gain in weight a few months ago when I was in a downward trend and we will get back on top of this thing so that I can move forward.

I also do not advertise because I sometimes people ask me to help them outside of my job and as much as I use to look for such business I no longer desire such a change because it’s almost not worth the headache. People are not consistent and tend to break appointments and not pay on time and so on that’s just too much to deal with on top of my busy schedule. Then you get family and friends who constantly want freebies and then they can be unreliable and hard to schedule too and they do not stick to plans either. It’s just a giant headache, lol. They do not know how to take you seriously because they see you as friend/ family not trainer disciplinarian. They do not take you seriously and until they are serious I refuse to take them on.

All in all I just don’t advertise, LOL.

Bucket List Heros

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So recently others have been seeing my bucket list and apparently they have made comments about it and found it just as interesting. My younger brother made the comment that I was too young to have a bucket list. He was not aware of the more trendy phenomenon of people creating them just to be sure that they live life to the fullest so that they have no regrets. It’t no just for those of us who are sick and have chronic illnesses. I know when I first told him it alarmed him though because I do have a chronic illness and he probably thought the worst. But I explained that people with MG live LONG healthy lives and that I created my list to ensure that I do not allow myself to sit and wallow in my disorder. Bucket list are meant to inspire you to do these things not just before you DIE but just to get out and do something more than get up, go to work, come home, repeat!

SO with that said I have a master bucket list that will not change but will slowly grow over time as I see fit an accomplish things and I have an annual list that I will create around the 3rd quarter of each year and have from that time to the end of the following year to complete. It will give me great joy to complete the list because I enjoy creating to do list and crossing items off of them as I tackle them. I also enjoy planning and organizing events.

Anyways, I have been enjoying finding new ways to tackle the list and when I can get them done. Some of them have been harder than others due to time management. I have found that I am not the only one who wants to see me accomplish these goals and that feels great too. I always tell people I do not want anything for Christmas or my birthday. It’s not because I do not feel worthy or I feel people cannot afford it, it is because I honestly feel blessed enough and would rather give than receive. I also feel that my family has given me so much already that I could want/need for anything. However, my dad saw my bucket list and he decided to scratch one of the items off of it for me and I even more grateful.

My dad bought me my go pro. I can take it with me on my adventures now. I am ecstatic. My mom said he was really looking for it. I’m proud of him because he really went above and beyond. Usually he defects to my moms for what all of us want for different events and this time he knew. Handy detecting dad, lol. I shall call it my PRECIOUS. Can’t wait til our trip overseas!

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Annual Bucket List: 2016

Do a local bike race
get yoga mat/basic training
Visit wizarding world of Harry Potter
Read 50 books — at 22 books almost halfway
Buy a Go Pro
Go Sky Diving
Go to a State I have not been to before
Go to 5th Cirque Du Soliel Performance
Paint Pottery
Throw Pottery (as in make my on pottery)
Decorate my house for fall
Decorate my house for Christmas
Take a romantic trip with my husband
Volunteer with a charity monthly
Take a culinary class
Go swimming (you would be amazed that since being diagnosed with MG I have not swam once because I have started to have fear that it would become over exterted and not be able to get out of the water….says the former lifeguard and scuba certified person)
Be sling shot (it a weird bungee course thing that looks like a giant sling shot)
Go to Canada


Master Bucket List

Write a book
Have a baby/ adopt a child
Create a Charity
Run a business
Travel overseas like a nomad (England, France, Italy, etc)
Go to Disneyland
Go to a bioluminscent bay
Have my music music produced and perform it
Help Find a Cure for MG
Go to Alaska- see the Northern Lights
Pose for a sexy calendar

 

12 Weeks are upon US

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So here it is…12 weeks! I have been blogging about it for months. Some of you noobs are like what are you talking about? I had to go 12 weeks without plasma exchange treatment to even be considered as ready to TRY to have a baby as I have a condition known as Myasthenia Gravis. For the last 2 years I have been on a roller coaster of emotions, doctor’s appointments, and thoughts!

I have been through it all. The if this guy would have had his act together I would have been where I want sooner (but then would I be happy). Who wants the drama of divorce or children with another man and trying date. I’m not saying this is a bad thing, I’m just saying it is not easy. I would probably be one of those women who put their whole life on pause for my child and forget about my happiness and makes excuses about it because that is how I am. I am overly driven but would give it all up for my child(ren).

So now that the 12 week mark is here. I have a million and one doctors appointments, lol. I went from having 1-3 doctor appointments per week in the past to none in several months which has been very freeing. But now I have 4 this week and then treatment (plasmapheresis aka plasma exchange). They are running a full battery of blood tests and deciding how and what meds to tapper first. Then They want to see if I should continue to cell cept to switch to another immunosuppresant. I figure if they do lets switch to a newer one that does not have the side effect of suppressing the immune system. I am glad for this new advancement. Getting sick is NOT the business as my friends say, lol. (It’s not fun). I am just glad to be stronger.

In other news the other doctor appointment I have is a follow-up because the fluid pill they put me on to reduce the edema they believed I had that caused an 8-11 pound weight gain in 10 days is still here. I think I have gained 2-3 more pounds but I am not sure. However, it is safe to say that medication has not worked. So we will have to figure out another solution. I would prefer not to increase to amount of the fluid pill because when I first take the pill in the morning I go to the bathroom LITERALLY every 10 minutes for about 2 hours then after that every 30-40 minutes for about 2 hours then I go at my normal rate. But either way I do not really notice much difference in my hands, legs, feet during this time. My hands reduce just a bit but not much and before long they are back to normal. I think it’s inflammation but I am not a doctor.

I also asked for a treatment because I though I made it to 12 weeks and could passively go a bit longer, if I do not have to and we are not able to start for the baby right away I will not force my body to go through that right now until I come off the cell cept. I cannot try for the baby until I am off this so until then I will get treatments until they say otherwise. I will still try to train my body to go longer than 8 weeks though so it does not rely 6-8 week treatments but prefer not to feel super tired, drained, and have so many symptoms if I do not have to. Cell cept causes birth defects so I know there is no trying for a baby as long as we are on this…we even had to sign a form before I was put on this acknowledging that I understood the risks of the medication for possible birth defects and that we would use proper birth control. The form even spelled those out and how many forms to use if you didn’t use the specific types the manufacturer/ professionals preferred they wanted you to combine certain types.

So though I have three 4 day weeks coming up, they will be filled with refilling my body’s reserve tanks, but draining my emotional energy reserves and probably a bit more of my sanity, as if I have much of that left, lol.

 

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.