The Almost Cure: Nervous Excitement

So I got my results back from my single fiber EMG. Remember this is the test for MG patients that they put the needle in the muscle belly of the arms and forehead and give little electrical shocks to see how the muscle recovers essentially. Well Yes, it was just as I remembered. It hurt like all get out. I was not a happy camper but it was a necessary evil. Though I was given the option to tell the conductor to stop at any time I ignored that option as I wanted desperately to endure it so that he could get all the information he could. I figured if I did not tell him to stop over 2.5 years ago when I was in crisis mode I dang sure could deal with it now when I was much stronger. But when he lit up my forehead where there is not much muscle I swear I wanted to scream stop many times. I may be strong but I am not superwoman…I am not impervious to pain.


I get to the hospital after a 25 min trip took an hour. I go to check-in and they say my appointment is not at the hospital but at his clinic and I’m confused. I thought the place was one in the same. They politiely give me the address and say it is not far from there and it was only about 7 minutes away but in traffic took me 15. I called ahead and told them I was running late and that I had only EVER met this specialist at the hospital and had no idea he had a clinical office at another location and they understood and said they would wait as long as I got there before his 9am client. So I sped like a bat out of HELL. I got there at 8:35 and by the time they called me back and started my vitals I heard the call in his 9 am. So I figured I was good. NOT. They kept doing small tasks and having nurses come in and talk to me and some associate from a the muscle dystrophy association talk to me then another doctor but that all happened in the first hour. I then waited 2.5 more hours before I saw MY doctor. I was pretty annoyed by this time. I mean if it weren;t for the fact there are only 2 other specialists like him in the country and they are few and far between and I waited 9 months for this appointment, I would have left.

But I did not show any of this once he walked in, ONLY relief that he gave me his full time and effort, I am no fool. I need answers and his knowledge and I cannot afford to be ignorant something that is life changing for me.

The Results are in:

My arms have gotten considerably stronger in the last 2.5 years, but my forehead and eye areas weaker which from what I had already told him were consistent. Moreover, my hip flexors are strong but have gotten a bit weak but that was from a simple test from week to week not the single fiber test. I also have developed strider again (a respiratory issue). But what that means for me in terms of someone who wants to be more fit and has gained weight, wants to have a child, and wants to come off some if not all of my medications.

Right now he says the tests says my MG is too active. To have a child would mean potential death for me as well as if they took me off my medications right now. I am just not strong enough for any of that. I cannot go back to ‘normal’ yet. But he created 2 plans to help get me better so that I can have a child and be strong and come off the medications.

  1. First is to increase my cell cept from 1000 mg daily to 2000 because apparently for nearly 3 years I have been on a puny dose and it’s not enough.
  2. Then is to get a subcutaneous port. This is so I can receive my PLEX (plasma exchange treatments) easier because I will need to be plexed extensively over a 2 week period before getting step 3.
  3. Thymectomy- I will get worse before getting better for about 2-4 months (a bit weaker but I will be able to receive plex during this time as well)
  4. During all this time I will begin rituximab which will begin to replace cell cept and it is a med I can take even if/ when I get pregnant. But I need to be off cell cept 3-6 months before I am allowed to be pregnant.
  5. Get pregnant

The other process the doctor laid out had me doing the same process except based on my answers of wanting a child I would get pregnant first and then do the thymectomy further down the road (flipping steps 3 & 5 Basically. I said no prefer to do plan ‘a’ as he called it because it allows me a chance to be stronger first and to hold and care for my baby with less trouble.


I also learned something more about MG and pregnancy I never knew…If you have been pregnant before, even if you did not carry to term you are more likely to have more weakness and crisis at some point during the pregnancy and likely post-partum than first time pregnant women.

There is also the rule of thirds with pregnancy:

1/3 will have no change in symptoms/ weakness

1/3 will have increases symptoms/ weakness

1/3 will have decreased symptoms/ weakness


With the thymectomy I help cut this down greatly! So right now I definitely see no reason not to do this besides just being nervous about surgeries in general, and surgery from the standpoint of anesthesia and MG patients. I am definitely excited to have less symptoms that’s for sure and to be able to get treatments that are quicker and less painful. I am all for it. I can see why God has post-poned some things for me now. He had a plan that involved some serious flexibility not every place offers that or understands.


WHERE DID YOU COME FROM? Like seriously my migraines began cropping up again out of nowhere. I mean there have always sort of ‘been there’ but they have been masked with my migraine preventor that I take daily. I do not want them to take the dosage up because it has truly been affect my memory and I also have been wanting them to take them dosage down for the last year especially when about 6 months ago I noticed when I accidentally didn’t take it for 3 days it caused severe swelling in my ankles and made them the size of grapefruits. So I definitely know I need to be tapered off. However, I want to know if my migraine medication that is used for when one actually occurs on top of the preventor will suffice me now? I usually have to take 2-3 during an episode and it comes like a GANGSTER, kicking butt and asking questions later. Like someone just said come here meet my sledgehammer!


I mean seriously I get maybe 1/2 a day of relief and i try to rest/sleep and continue for a day or so and see if it has gone away.  Then I have to take another to get another 1/2 half day and then sometimes/finally before it can completely come back I may have to head if off with one last one to get rid off it because I am too afraid of the possible and dreaded 60 day migraine again. Yes this has happened before I it was the worst thing EVER. The bad part is that the prescription I get only comes with 9 pills so that’s 1/3 of them right there and it’s NOT cheap. With this happening almost every month again this is not good. Luckily I am going to see the expert and talk with him and hope he can shed some light on the situation.

The other issue is the meds do make me a lil loopy too. The preventor  (Topamax) cause loss of memory and can cause some other issues like blood clots and so it makes it hard when you already have a clotting issue to come off the high does of aspirin. Then the additional in case of migraine (relpax) makes me feel strangely out of it after I take it until I go to sleep if I can even go to sleep after I take it. I mean like high!!!

I mean it is a pain med so…

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But durn if some nights I haven’t already had some pain meds or I’m super sleepy and man the week before last rubbing pizza cheese on my teeth and making tents with my pizza crusts let me know I was high. I mean I usually realize it after one good random act but still with the filter gone it still takes a second and it’s usually TOO LATE when I realize it…

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I mean I can’t lie and so I don’t enjoy the feeling once I get past the nausea…

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My husband just says lets just take you to the room and put your to bed and he either is annoyed or giggling…usually the latter. He never says before you regret doing something because I never would only because I would likely laugh at anything I did. Why not, life is too short!


Every Little Victory

I celebrate every little victory even if it is only me and in my own little space. For example I may have done everything on my to-do list and felt very accomplished and I may sit and read a book after doing a small happy dance and singing and laughing. Yea that sounds a bit hysterical but my to-do list are pretty intense most of the time. similar to this below for personal to-do lists on a nice week, LOL.


My most recent victory is that I was told that for my single fiber EMG test I do not have to stop taking one of medications ahead of time that tends to cause complications for my PLEX treatment. I’m on a high level of aspirin because I have a lupus anti-coagulant. What this means is that I do not have lupus but I do have really thick blood. So to help thin it I drink TONS of water take 325mg of aspirin a day. For the test they say I have to stop blood thinners but this apparently does not include aspirin, even at this this dosage.

Originally I had pushed my treatment to Thursday just to give my aspirin time to kick back in before going to get PLEX so I would have less issues during treatment (clotting) and we would not be there for 4-7 hours and more like 3. Now with this news I can go the same day as the test which is great since the test renders me dang near immobile and unable to swallow. I even feared I would not make it to treatment on Thursday after the test but I didn’t want to voice it because I was just going to pray. So this morning I just called to be sure about the aspirin before confirming treatment times again with my local neurologist before going to work this morning and Oh FRABJOUS DAY! CALLOOH! CALLAY!


I was so happy I skipped out of the house without my phone and welp there you have it! I tend to celebrate all my small victories all the time and my husband even looks at me a little weird sometimes but he will get over it. This is what I do because I enjoy giving praises to God for it and just being happy in general, I can’t be a gloomy pants person! Hope this brightens you day even a little! Futterwack with me! LOL!



Busy Busy Busy= 3 levels of busy

Lately I have been so busy it is quite stressful and hilarious. I have 3 levels of busy. I have work busy, home busy, and just plain ole busy.

Work Busy

With work busy as the name implies this deal with all the things associated with my jobs. I am stressed (good and bad) with things dealing with my jobs. I have certain deadlines, facility closures, customers, and a gazillion dates, and projects to keep up with. I try to do this seamlessly; however things to get a bit manic at times. I start some emails out really friendly and creative and sometimes find myself typing so hard and fast with emotion that my head and fingers hurt after I am done. These emails are the ones that I have to let sit in my drafts for a bit to allow them to cool and re-read before I send them to make sure I still have a job later…

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Class, respect, and tact is the name of the game. Then I go to my blog where I can say what I want, like how they should go belly flop off the highest diving board (because I don’t want them dead just in temporary discomfort…)

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Home Busy

So home ‘busy’ levels includes everything home. This is all things personal like my marriage, bills, errands, vacations, hanging with my friends and family, chores, and things along those lines. Its what people would usually say is everything else outside of work. I would even say this include my health and medical bookings and so on as well which encompassed a lot of my life at one point and still can be a lot as I have to schedule all my events around how I feel physically.


Plain ole busy #insanity

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So this is when things just get out of control and I have no time for anything. I have had to start cutting things that are considered important to just to fit in more things that are important and nothing fits anywhere anymore and I am exhausted and yet the light at the end of the tunnel is usually so far off that I usually have to pretend my light at the end of the tunnel are my naps…

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and I dare you to wake me or think you are more important than the nap if it is not an emergency. In other words if someone has not died or is not dying…I DO NOT CARE!

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So there you have it right now I am experiencing all 3 levels and today when I hit my nap again before going to my second job I will be right back to plain ole busy getting ready for tomorrow so yea…Sorry not sorry. My next few weeks will be like this until I can get treatment, this move at my job happens, and a few things behind the scenes happen that I cannot quite talk about yet though I am anxious and excited for them to happen…#lifechanges #soontocome

Testing of all sorts

I am coming up on a much needed single fiber EMG which makes me so nervous I could vomit but I shall try to contain myself. A single fiber EMG may not sound that bad but believe me when I tell you how bad it was for me you…

So a single fiber EMG evaluates how well the nerve and muscle communicate.  It involves insertion of a recording needle electrode into the area of the nerve-muscle communication point (the neuromuscular junction). There may be some discomfort with insertion of the electrodes (similar to an intramuscular injection, or a shot that goes right into the muscle). A single fiber EMG is often done on an eye, forehead, or forearm muscle. CITED-

Ok maybe it doesn’t sound like it’s not that bad! Because I have had it done twice and when I say a needle in your forearm, forehead, and in your neck is not fun- what I mean to say is IT HURTS LIKE HELL AND DON’T LET THEM TELL YOU OTHERWISE. My Expert’s exact works were (when he had to put it my forehead and I was already drained from everywhere else he had gone and tired was, ‘this part is going to be a bit ouchy’ I am sure that is NOT a professional term and if he is using ouchy that at this point I should just shoot myself!

I take friggin 15 & 16 gauge needles with no anesthesia in both arms (and this was often and he was pricking me in my forehead near and I just did not want to see that durn needle coming! Was that too much to ask! Apparently it was. And in a teaching hospital, nothing happens fast, so having an EXPERT in a teaching hospital means they put him in a basement where he can write amazing books and publications and do studies but it means that everyone else around him may well be incompetent.

So just after my test (as I was already at my weakest being admitted to the hospital in the first place) they tried to give me my meds after taking them away for 2 days and guess what I could not swallow and choked on my water and was sent to the ICU and vomited and choked on that and the students just stared. One even had the nerve to ask me what I was doing as I was just strong enough to put my head over the rail and not lay back and drown in my vomit in my almost flat bed. Finally, though I had been holding it down like a crazy person for several minutes, the person on the other end of my call bell stopped being lazy and realized it was a real emergency in the ICU (go figure) and stop asking what I needed. She realized what state I was in and went into action.


I was in full panic mode by this time. I was absolutely terrified because I could not breathe through the vomit and they were trying to grab the suction for me and I snatched it and suction myself and felt better immediately. I just needed them to turn it on, lol. Then I was so weak afterwards I almost passed out. They put oxygen on me, a forced oxygen kit because I was no longer breathing well on my own…wonder why!?! When my family came in and saw that they went ballistic.

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So needless to say I am very anxious about this test. This time I have warned my parents that I am not admitted just outpatient and if they are not allowed to go back with me that I will not take meds until they are with me and we will drive back across town to my preferred hospital as their hospital lost that right just over 2.5 years ago. You don’t get to almost kill me again, LOL. That tested me in ways I didn’t not expect! But I am definitely stronger because of it. I know I can do it, even if I do not want to do it again, it is better to conquer it, educate myself on my progress, and move on.

The Dam Breaks (She Wept)


Daydreamer dreaming about dreams

Dreaming about life

A life that has escaped her

A laugh-less house

A house void of the pitter patter of litter feet

A house that never became a home

Built on cracked glass waiting to burst into a shrapnel

Impaling and then poisoning every aspect of her life

Believing that she have nothing left to give

Nothing left do

She can’t meltdown

Crying seems an abstract thought, she is beyond that

She is angry

Days go by, weeks, months

Then she is calm, too calm

She is thinking about the hurt that was caused

The missed opportunities, past and future

She must start over

But time is not her friend and she honestly does not want to

She blames herself for everything

She finally allows the demon in

It reaps her soul and ravages her very being




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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.

Getting Ready for PLAYTIME

So if you have been following me for some time you know that I am going to Europe soon. It has been pushed back to the fall but we have now set a date in September. I am excited because, well the date has been set. However, that also means that I must physically get ready. Being that I have MG I have to do some special things. Though it is not all that different from things that normal people do before the summer or other seasonal things; I have to get my body in shape.

I have not been able to exercise in months due to several huge setbacks last years and I now that I can I have to do it so slow that it ANNOYS me with every grain of my being. I am just not one for the SLOW beginnings thing when it comes to something I know how to do. SO I bought a spin bike for my house last week and it arrived yesterday. It weighs over a 100 lbs and I put it together all by myself. I am quite proud of that fact because I have always been quite handy but with MG my fine motor movement has been greatly diminished due to the fatigued f my muscular ability over time. SO with many breaks I did finish it. Though had this been 3 years ago I probably would have done it probably 3 times faster.

Also with the sheer weight of it, I had not lifted that much for so long repeatedly in a very long time and I was quite proud of myself. I was quite sure I was going to drop it at some point and was glad that I did not. Again I took many breaks and I got it together.

Now, I enjoy teaching spin class but I have to get myself revved back up to that point by re-gaining my cardiovascular ability. I started the whole process by walking more and that has helped. But maybe not as much as I should, my app does not accurately show steps as much as it shows forward motion in steps like a gps. So if you are standing still stepping or stepping less than 26 inches or whatever the step gait is, it won’t count it. So I know I am getting shafted on my steps per day, especially when I am working out, vacuuming, and so on. However, right now my main goal is just trying to get moving so I will take it. However, I will have to give in and by a fitbit so that I am getting more accurate measurements because that is quite annoying when I know I am getting those steps and it is not being shown and my cardio is getting better (though I know that should be the only thing that matters, lol).

The bike was bought for many reasons though, I cannot always make it to a pool, or pay for one which is my favorite method of exercise. Moreover, it is quite tiresome and I cannot use all my energy in one shot. So I got the bike. I can sit and ride and it’s my second favorite form of exercise. I love spin. I take it to the max. I love the varied intensities and sweat you can work up.  I wear my heart monitor too. I also like that I can watch t.v. if I want, lol. When I swam I could only listen to my music (as I had an underwater pouch for my ipod). I have to get my cardio up so I can walk for hours and in Europe, most everything is walking, biking, and hiking. Though you can take taxis, it can get pretty pricey. I also don’t walk to slow my family down taking breaks ALL the time. Though they understand and are prepared to take a break here and there for food and so on. Who wants to break every 1-2 hours because I cannot keep up. And if you are walking with my Aunt or Dad it may be less than that because they are speed walkers so I have to get my stamina back up to walk like them again. I am/use to be quite a fast walker naturally because of my dad. So I have to make sure I do not pass out trying to do it again especially accounting or altitude, weather, hills, and just plain on exercise. I just want to be ready to PLAY.

Being a health professional I know it only takes 10 days to ‘lose’ your cardio stamina that you build up however, it can take a bit of time to build it up. It does not take all the time that I am giving myself; however, having MG I do not want to take chances on how long I will need. Slow and steady wins this race and at 10 weeks with no treatment and going for 16 weeks. I will not allow anyone to get in my way!

Over a Year! No Problem!

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I was asked the other day how I was doing and my usual response was I’m GREAT! I have been making sure that I give a better answer than good or okay. I want to give people the impression that you can be something other than the normal at any given time. But when I looked at this person and remembered they were someone who knows me a bit better than the average person and she gave me that look like are you? I thought a bit more about it and said I really am amazing! I have not had a true MG episode that has hospitalized me in well over a year. My last MG hospitalization was January 2015. And it was actually due to a virus that quickly became way more in the form of an intubation and respiratory pneumonia in less than 36 hours. Truly one of the scariest moments of my life. So to think that this was the longest since having MG I have gone without hospitalization and that I can now go 3 months without treatment is really amazing.

I thought after my first few crisis moments. I would never be able to travel again or be able to have a really normal life despite what people said because I was glued to medication and treatments and hospitals. They said everyone was different and mine form of MG was so severe and did not follow anyone else’s trend that I was worried I would never have any sort of freedom. It still does not follow anyone’s trend which is still a tricky thing but it is fine because I have come to embrace that and enjoy that I still get to have a life. I am stable and happy!

Granted I still have days where I am super tired and I am definitely over-worked some days it’s just all about balance and learning limitations. When I am doing too much, my body tells me and I have to learn how to accommodate that and adjust or I suffer greatly and that can mean a huge setback that I am not willing to sacrifice. So before that can happen I will cut back on the unnecessary things. This may not mean no worries for the rest of my days but it’s as close to it as I can get!


Myasthenia Gravis And Writing My ART

I have learned lately that writing and Myasthenia may not always go hand and hand but the tricks to making them work are learning the advantages and capitalizing on them. I know for instance that my muscles in my fingers will fatigue and wear out on me after a bit of typing and since I have to type for work and for leisure and now for writing which is a bit of work and leisure I have to find a way around this hurdle.

So I type closer to the time just after taking medication, in the middle of the day when I am stronger, and I utilize my Dragon speech tool so I can give my fingers a break when I can and use my voice when it is stronger at times. I trade off since sometimes my voice may not always be strong.

I also have issues with vision having ptosis or droopy eyelids. This is another symptom of my Myasthenia Gravis and the strain from staring at the computer or up or just stress can cause my one or both eyelids to become heavy and droop. This is extremely annoying when you are on a roll typing. I mean I do not really need to see the keyboard all the time but sometimes it is helpful to see the screen, LOL. I also need to see the screen to make edits.

It can be a long editing day it I have ptosis, in fact I usually give up after a few minutes because the symptoms are usually only going to get worse until I can rest AND get medication.

My biggest ally in all of this is rest. This is a hard notion for me as I tend to like to burn the midnight oil when I am on a roll. If I feel like I have something going I do not want to let it go until I have completed that thought or section. But with MG, sometimes it will let me complete those thoughts and sometimes I will complete the thought and go back the next day to read it and it reads like a drunk toddler got hold of my laptop.

This is why I believe I have become more rushed and sensitive of my work. I want to get it done when I am feeling well in one sitting and have someone’s attention. Or I want to wait until I will be better in a few days/ week’s time to create a work that may have fewer errors. Granted grammar has never been my forte and I will tell anyone beforehand what my weaknesses are well BEFORE MG EVER started but when additional errors occur because of it sometimes I tend to take somethings to heart though I would never tell an editor that because I do not want them to feel sorry. I want them to do their job and I will sort out my feelings on my own! As long as they are respectful and giving me constructive criticism I will never ever fault an editor and I never have. I always get past my feelings for the improvement of the art that is my work.